Gideon:"The Lord is with you, mighty warrior."

One more Act of Love, please...

2012-02-14T23:03:00.003-05:00

First: THANK YOU for the buckets upon buckets of love and prayers. Gideon is doing MUCH better. He does not have a fever anymore. ALLLLL day on Monday Gideon and I slept and cuddled and tried to hug away that cough. He is still throwing up, but I have a great feeling that he is on the mend. Gideon will be getting an immunoglobulin transfusion tomorrow, and hopefully that will kick up his immunity even more. Please pray for him in that regard.

As far as what you can do... I was overwhelmed by the number of staff members who greeted me in my room this morning with questions about how they can help in the Methotrexate shortage. It is devastating that there is only enough left for two more weeks of use. Most diseases that use Methotrexate have alternative drugs that could be used, but not leukemia. It is the difference between life and a relapse for these precious babies. I urge you all to go here and follow the steps so that government officials find a longterm solution to this horrific situation. The FDA has made some strides to help in the near future, but it is a bandaid on a gaping wound. We need there to be a steady supply, even if this drug is not necessarily "profitable" and it's need is not as urgent to Congress compared to the other issues on the docket. Obama introduced a bill to help avoid this situation in October, but apparently it is not as crucial to these people. Sorry if I seem jaded. I am. I will never understand how capitalism and listening to the lobbyers with the largest sum of money somehow outshines human life. Call me what you will, but no amount of PAPER with dollar signs is more important than Gideon's life.

I have not only written several people, but I also called drug companies and talked to their customer service. I must say, APP was so very nice. I ended up talking to a guy about this issue and more for a LOOOOONG time. He even took the time to ask how Gideon was doing. I was impressed by that. Oh. I also called the president. I left him a message. I will let you know when his people talk to my people. In the meantime, PLEASE go to the link above and follow the steps. It does not take long. Since we don't have the money power to make this issue as dire as it is to our government, let's please shock them by the number of VOTERS who care for life.... Lives like Gideon's and so many of his little friends.

THANK YOU!

Pneumonia

2012-02-12T22:17:00.004-05:00

Whew.

We just got home from the hospital. Gideon's cough got scary and nonstop, along with throwing up and a fever of 101.5. So, his oncologist suggested we head to the ER. He had his chest x-rayed, his blood checked, and an IV bag full of antibiotics. It looks like he will also need another transfusion of immunoglobulin, but that will be later this week. The nurses told us we would be asked to check in overnight, especially since Gideon's temperature kept rising. It was up to 102.8 and the little rosy-cheeked boy passed out. We caught the pneumonia in the beginning stages, thankfully! To be honest, I just wanted to get the medicine in his veins, get the oral medication for the pneumonia, and leave that petri dish of a hospital. It is beautiful and its staff is incredible, but home sounded better.

We were allowed to go home. We are thankful for all of you who are still out there praying, asking for updates...seriously. THANK YOU. I kind of want to pull my hair out, though. So, if you could also pray for sanity...that is much appreciated. Gideon took his newest medicine to combat the pneumonia along with his nightly dosage of chemo. His fever went down to 101.1 thanks to Tylenol. Unfortunately, it all came back up and into his puke bowl. Do you know what that's like? To watch your baby throw up the medicine meant to save his life? It made me want to get a mini-skimmer and fish out particles in the bucket, and mix it in with something that he'll digest and keep down. It's a mixture of madness and desperation, that feeling.

The only medicine his oncologist told me to redo was the new pink stuff for the pneumonia. He also asked me to feed him one more steroid to fight that nasty cough. Every time I hear that rattle of his lungs I feel like his little muffler is going to just drop out of his little body. It makes me cringe and want to brace his ribs with my hands. I say "want" to be his brace, but I do that. I wrap myself around him when he is attacked with a coughing fit. I have no idea if I'm helping or hindering, but I just want those lungs to be clear of anything but clean-clean air all while holding him together.

So, his cancer is sharks. Gideon wanted to understand his pneumonia, and when I described it, he said it was a pokey and mean puffer fish. It's good to know that nothing can douse the fire of his creativity.

Praying. Loving on him. Loving on all of YOU who care so much about our boy. Thank you. Again.

Mighty Methotrexate

2012-02-12T08:22:00.002-05:00

Gideon has had his Methotrexate dosage this week injected straight into his spinal fluid. This is pivotal in our battle to rid his body of cancer. It's a love/hate relationship since there are many side effects that can appear because of this process in the long haul, but it beyond necessary in both spinal injection and weekly oral form. Methotrexate exerts its chemotherapeutic effect by being able to counteract and compete with folic acid in cancer cells, resulting in folic acid deficiency in the cells, and causing their death. Unfortunately, this also has the same effect on normal cells. Again, the alternative is far worse, and I am grateful and thankful for this drug. Gideon also had his lumbar puncture to test his spinal fluid for any evidence of the disease.

Many people were shocked and saddened by the news of Whitney Houston's death. I was one of them. It is always so terrible to hear of someone whose life is cut short. To have such a talented human gone from our world is a reminder of the finite time we all have here. It is with a smile that I remember putting on a routine to "I Wanna Dance with Somebody" over and over and over again with my sister. We had the bow, the big hair, poofy skirt...we wanted to BE Whitney.

But this news was a blip on the screen compared to how I felt about this news. They are running out of Methotrexate? Why is there not more of a public outcry about this? This is a medication that makes BEATING leukemia possible. Innocent babies need this medicine. This is not a rockstar's "fix", this is life and death for the innocent. This is the preservation of life for those little people who have just as much possibility of changing the world as every famous and talented artist out there. Who might we lose if this issue is not resolved? This is something we need people to not only pray about, but DO something about. You better believe I will be vocal about this issue. There is no such thing as a backseat when your baby has cancer. I don't care if I'm annoying. Not at all.

Here is a video of Gideon's day this week at the clinic. It is the prep work before the spinal injection and LP, and the after procedure time. I did not include the actual injection or puncture. You will not feel queasy, but you will see what Gideon goes through and the most amazing spirit he has to get through it all. Even with this recent news, I am thankful for the way Gideon's treatment is going and the fact that he is cuddled on my lap right this instant.

My Second Grade Shout-Out

2012-02-04T08:27:00.003-05:00

This blog is a heart-overflowing-thank you to my second grade students. I was reflecting on why my week was so astoundingly incredible, and my smile kept growing as I thought of those precious people. It was all them. Of course, my first graders also added joy, but it was the second grade lesson I taught that made me realize I was actually being taught by THEM, the seven and eight year-olds.

I have heard the song "We are the World" a trillion times, at the very least. I was a little girl when it came out, and I remember getting so excited when I could watch the music video and point out the artists I knew. It also made me feel an uncanny connection that made those artists and myself on an equal field: children of this same world. I don't remember ever talking to anyone about this, but I do remember feeling that emotion of mattering and counting, too.

My Spring Program theme for my second grade class is "We are the World" and we are singing and dancing to songs from various countries and cultures. I have the privilege of also teaching Customs and Cultures along with the musical piece, and these little sweeties are sponges. Anyway, the chorus to "We are the World" is our transition song that we sing as students move between songs. I decided to show them the newer version of the song so that they could recognize the singers they knew. I was their exact same age when the song first came out, so this was a little nostalgic for me.

The nostalgia turned into smiling and the smiling rearranged itself into awe. That is where it stayed as class after class continued to make me feel like our world is going to be incredible because of these little ones who people it.

After watching it, we talked about the video and the lyrics. Here is what some of the kids said:

"Did you see how those people from Haiti were still dancing and smiling, even when they lost everything? Well, they didn't lose everything. They still had happiness. I guess houses and things aren't all that make you smile."

"You know how Mr. Wheaton says, 'Make it a great day or not. The choice is yours'? I think that when we sing 'There's a choice we're making, we're saving our own lives,' it means kinda the same thing. You can make a choice to make your life and everyone's life better, or you can make a choice that makes your life worse."

THAT comment lead to another child saying, "And if you make no choice at all and do nothing, that still is a choice you made: to sit there and do nothing to help."

"No one is more important than someone else. Even I can do something important."

"We can make 'a brighter day' just by smiling at someone and then that smile makes someone smile at someone else, and that smile is smiled to someone else, and on and on until people smiled around the world because of your ONE morning smile."

One of my personal favorites, "Mrs. Schripsema, were you in that music video? I think I saw you in there." Okay...that one just made me laugh.

I could go on and on and on... But the gist of this post is, listen to your kids. They see what many of us adults have forgotten to see, and it's actually the most important things to realize and focus on in the day-to-day. THANK YOU, Mattawan's second grade, for making my days brighter just by being YOU.

CureSearch Walkathon

2012-01-30T21:59:00.002-05:00

Please join Gideon's GOOD FISHIES and walk with us towards a cure on May 19. Please click here to register! The more walkers, the better! We will not turn anyone away. Strangers, family, anyone! Please join us... If you can't walk, please consider making a donation here. THANK YOU!

Follow My Yellow Light...

2012-01-29T23:10:00.003-05:00

It was a perfect day. Brody, Gideon and I turned on "SOUNDSCAPES," gathered every throw blanket and pillow we could find in the entire house, and just cuddled until we all fell asleep to the sounds of nature and flutes muddled together. Muddled sounds messy. I guess it was more melodiously matched together. That's better. So, we slept and dreamed together in a cozy pile of cushiness. Gideon said he had a dream (during this nap-time) of swimming with dolphins and then the water turned into flowers. It "smelled sooooo good," but then when he woke up, he said he was breathing in my hair (which explained why he could smell them in his dream, he said). I could inhale him in at every opportunity, I promise. Brody was just as snuggly and loving, too.

This weekend was full of moments like that. One was when I woke up at nine in the morning and NO ONE woke me up. The boys weren't in their beds and I got very nervous since the house was too quiet. I found them both at the kitchen table. Brody was teaching Gideon via "Directive Drawing" how to draw a fire-breathing dragon. He had already had him draw a perfectly crafted and colored pencil. Gideon followed his every stroke and said, "Look, mommy! Brody is teaching me to be an artist like him!" I think I still have a part of me melted in a puddle on the kitchen floor. Ugh. I adore them.

I also need to share a recently discovered song, but I need to provide the backstory. Since the beginning of this blog, I have referred to Gideon as my "Yellow Boy" and Brody as my "Blue Boy." The colors match their personalities perfectly. Here is a little refresher from an earlier blog:

"If I could paint Gideon's soul it would be in all shades of yellow, but mostly sunshine yellow. It's true that he has that yellow hair. I don't call it blonde. That is too dull of a word. He has yellow, halo-shining hair. Every single time I go into the clinic, nurses and doctors comment on the fact that he still has it. If you were to brush through it, you would see bald spots underneath, but it is still there. The downey chick soft curls distract attention until the brilliant yellow that is Gideon permeates your heart into melted yellow butter. It happens. Ask anyone who has even talked to this boy. He is my yellow man. Even when his hair is gone, I'm certain that warmth that you feel while sitting next to a window on a sunny day in winter will still emanate out of Gideon. He warms straight through." Written and posted on August 22, 2010

Listen to the words of this song. Woah. I'm following the yellow light! Gideon's light comes straight from the Creator. This is a certainty.

Two boys with an ear infection, and a sinus-infection-med-head-momma

2012-01-24T21:51:00.002-05:00

Maybe, just MAYBE I was a little too optimistic yesterday... The sick bug got a little more vicious over here, since Gideon woke up drenched in sweat and not at all himself this morning. He can deal with a stuffy nose and the regular cold stuff, but he had a lowgrade fever and something told me to stay home again today. I'm glad I did.

The boys had another chill day of relaxing, cuddling, and blowing noses. They played several games of "Guess Who" until Brody picked up on the fact that Gideon was trying to change his "guy" midway through the game. Brody bails at the first sign of cheating. Happily, they started a game of Cosmic Chicken, and since there is no way to cheat from that one, they ended up playing several sessions. I was able to sneak in several stealth under-the-arm temperature readings during that time and I hated the way his temp seemed to climb a little with each reading.

Then, in the early afternoon, Gideon started to sob and hold his ear. He has never had an ear infection in his life... That was always his brother's trademark sickness. Unfortunately, it was an ear infection. Thankfully we were able to get into the doctor and he was allowed to use Tylenol for the fever and the pain, plus NORMAL kid antibiotics.

I started out this sick time making the boys wear toilet paper around their wrists. This was for the protection of all things that could be wiped with boogers. As time progressed, this fad went out of style and the boys went back to hands and sleeves. I will think of something to curtail this slimy habit. Any other ideas?

I am in the middle of being an absolute absent-minded mommy, myself. I ended up with a sinus infection and I'm battling through with my netti pot! Between the three of us, we are all a little pathetic. :) But... These are NORMAL illnesses! I can't complain about that. Please pray that the boys heal up and nothing progresses into something worse. When I played the song from yesterday (see yesterday's blog), the boys were not as amused. I am in the process of finding another cheesy morsel, don't worry. In the meantime, we'll play soft and wordless songs...

Learnalil

2012-01-23T17:40:00.003-05:00

OH boy. There are lots of coughing and blowing noses in this house going on right now. Brody had a fever of 102.7 last night and was in severe pain from his ear, so we all stayed home today. Brody and I went to the doctor and got him the meds he needs. Since then, it has been Cuddlefest 2012. Gideon and I were sick this weekend, and Brody was the last to house our unwanted germ guest. I feel way better, so taking care of these boys has been easy. Especially since I am on a complete music obsession-kick with Gotye. I adore their new album, so I dug out their old stuff and we have been having a healing time with the song I'm about to attach. If you listen to it, you must also promise to shimmy and overly use your jazz hands, okay? It's that kind of song. There are bunnies and balloons in this music video, so it is begging you on sparkled stained knees to put the goofy into it.

Here's to all of you battling bugs like us: Feel better! This song is guaranteed to clear out the mucus.

Gideon's Jump Rope Life

2012-01-17T16:43:00.000-05:00

Dear George

2012-01-15T00:07:00.002-05:00

January 15, 2012

Dear George Foreman,

I recognize that your grill was just one that you endorsed. In no way did you invent it or go around saying, “Yeah...heavyweight-schmeavyweight! Check out this grill, not my belt!” I get that. But, for all of your accomplishments in the ring, George, for all of your winnings including the title twice with more than 20 years in between wins, and your gold medal, and your hardest punch of all time (thank you, Wikipedia), all of it... I have to say, your grill is one prized possession in this momma's kitchen.

Since this kitchen resides indoors as the arctic winter that is Michigan has finally turned on its machine, your grill is the only one I'll be firing up anytime soon. Do you realize, George, what you have done in saving my sanity? Your grill might be used just to cook, but that's not all. It preserved peace in this house. I promise.

I'm sure you've seen some blood hungry monsters in the ring. I'm sure they have come at you with the intention to hurt crimson red in their eyes, but you have never been in a home of a child on heavy steroids. These aren't like your piddly steroids some of your competitors may have used to beef up. Oh, no. I'm talking the real stuff. The stuff built into a child's cancer regimen. It's a week's worth of insane cravings and whining and stiff muscles and temper tantrums. My little fighter has his eyes constantly on his cancer, wanting to knock it out for good. We still have a few rounds left, but this fight is HIS. We are confident competitors...I'm sure you understand.

In the meantime, I have plugged in your coveted grill more times than I can count this week. I have grilled more than 25 chicken drumsticks. All organic meat, and skinned by yours truly, I have been a chicken cooking fool. I feel as though Gideon, my meat devourer, has had a drumstick permanently in his paw all week long. He even put on a performance to “Hungry Eyes” while tearing into a drumstick and using it as a microphone while doing so...but now I'm going off on a tangent. I do that, George.

In closing, so that I don't get into every detail of every occurrence of the week, I must just say simply: THANK YOU. Maybe you can talk your people into creating a golden grill in honor of childhood cancer with the proceeds going to CureSearch. I think that would be a winning decision, but that's just me. I'd buy another one. I could probably cook more chicken with two, anyway.

So, best to you, George! When you said, “It's so good, I put my name on it!” you weren't kidding.

Happy Grilling!
Amanda Schripsema

Cancer Kids

2012-01-11T01:24:00.006-05:00

There is so much about us that is packed into little compartments and stored on a shelf. We take one unit off the shelf when it is needed, and we use our adult common sense to consciously leave certain parts of ourselves dormant and on the shelf… They'll be let loose out of the box some other time. So we show glimpses of ourselves instead of all of us because that is more polite, that is more controlled, and that is more acceptable.

I think this is why I adore kids so much: they don't filter. They feel and respond to those feelings accordingly. Does it hurt? Cry. Is it funny? Laugh with your entire self (who cares if you snort? It is far more difficult to censor a snort than to just feel the bliss of the moment). Are you mad? Stomp your foot and hurl yourself onto the couch with a cross between a snarl and an UMPH. Are you happy? Smile and say it. Say, "I feel soooo happy." And kids DO. They do-do-do!

Then there are kids with cancer. The longer I am in this childhood cancer world, the more kids with cancer I meet. I thought maybe it was just me who assumed my own sad heart came to this conclusion, but nope. I decided it is fact: Kids with cancer get it. They get it all. They get things we normal adults never will. They understand the spectrum of all emotion, but they still have that kid gloriousness of letting it all mill around them like fireflies of perfection. They still get mad, sad, frustrated and they go about in kid fashion to display these emotions, but they gravitate towards the good. They hover within a smile of certainty that this life right this moment is spectacular. Maybe it's because they know this good feeling might not last very long before a new drug interrupts the freedom that is childhood, I don't know. But I have not met one child with cancer who acts bratty or mean or selfish. I don't think that combination exists.

Gideon had clinic today. He got his vincristine, his check-up, his next round of steroids. He is on track for his treatments and that news is always soul balm. While we were at the hospital, I had the absolute privilege to meet up with Joyanna and her son, James. James was checked into the Children's Hospital to receive a five day rigorous chemo dosage. He was diagnosed with Alveolar Rhabdomyosarcoma, deemed in remission, had his port removed, and the cancer came back. This is every mom's compounded nightmare within a nightmare. Anyone who has met James can feel the warmth from his eyes and his absolute easiness around anyone who wants to talk. He's the kind of boy who can take in a person and make him/her feel instantly comfortable. James is the kind of boy I want my boys to know: pure heart, fabulous imagination, and a caring outlook. He's the kind of boy who can and does change the world around him for the better.

(Mommy Joyanna loving on her boy, James)

James touched my heart… He had the hiccups today and I taught him my "magic way" of curing them. It worked, and he looked at me with those animated eyes that seemed impressed by the trick. He seemed so happy that this pest of a problem went away so suddenly. I kept thinking, "I wish there was a magic way to zap every cancer cell instantaneously until you are cured completely." Please pray for him and his amazing family. May his drugs do their work and may James beat this beast a SECOND time!

(…and this is the perfect time for me to introduce to you the song that had me sobbing into my popcorn until it disintegrated while I watched "Happy Feet 2" with my boys…)

SUCH a pill.

2011-12-17T14:14:00.005-05:00

Oh, steroids. You make somethings so difficult, like sleeping. You bring on these bouts of angry rage from the most peace-loving dove of a child. Yet, you cause Gideon to talk in that quicker-than-quick way when all of his thoughts waterfall out of his mouth into the most refreshing pool of savory words. So, I guess I should thank you for those inspiriting dips. He always talks, but just more than normal during this time period. This is a glimpse of Gideon-isms from this morning alone (I had time to type them once they happened so that it was straight from his mouth to this screen...Love jammie Saturdays):

"I want a puppy. I will name him 'Puppy'. Then when he grows up, I will name him 'Grown up'. When he's old, his name will change to 'Oldie'. After that, I'll give him a name once we're both in heaven that he can keep forever. Makes sense, right mommy?"

Gideon wanted to know about the "HEADS" and "TAILS" on every coin. I started with the penny, then the nickel, then the dime and finished with the quarter. He looked at each one for a long time... "So, Abraham Lincoln has a building where people remember him?" (I nod.) "Jefferson lived in a house with a circle roof? (Points at Monticello.)" (I nod.) "Oh! That means the dime man (Roosevelt) used torches to see his trees and branches and WASHINGTON HAD A PET EAGLE?! WOOOOOOOOAH." If it's hard for you to see what he's talking about, get out your change dish and take a peek. This kid and his connections make life AMAZING. He had to suffer through a mommy kissfest after that one.

"I like that we put trees in our houses. (Points at the Christmas tree.) We should put more couches in the forests, too."
--------------------------------------------------

I gave you three, but there are so many more I could type out here. All this steroid time, Brody is still handling his brother's dilated pupils and crazy-man tendencies like a monk who is just cloaked in perpetual peace. Even when I'm upstairs, I can hear Brody say, "Gideon, we don't hit. Gideon, please calm down. Your turn is next, I promise. I don't break promises." He says this so evenly and calmly. For some reason, Gideon's big brother's pleas for peace resound more, and Gideon listens. I refuse to use Brody to be my voice of reason for every fit, though. He is only six and I'm the mommy. But, guess what? During one of those fits, Gideon STAYED IN HIS CUSHY CHAIR when I demanded he do so (to avoid bruises). Is my steroid boy growing up?

Now, since we are on the topic of STEROIDS, I have a confession. I usually tell Gideon how his medicine works and I do so in a way that is kid-friendly, but truthful. I use imagery to describe it...Fantastical and fictional imagery that paints the truth about how it works. How could a child understand it in any other way? This time, though. This time I don't even tell Gideon they are steroids. When I give them to him, I say that he needs to let the pills make him relax and feel the happiness in his heart. Did I say they cause him to be relaxed and have a happy heart? No. I let him believe it, though. Sometimes I think mind-over-matter can work. The whole placebo effect, right? Well, it has worked every night so far. Gideon pretends to crumble into a wistful sleeping-smiling boy as soon as he swallows the pills. And I have to carry my conked out and happy boy up to his bed. Guess what happens then? Since his eyes are already shut and he is convinced his heart is calm and happy? He falls ASLEEP. Sure, he gets up at 2 a.m. demanding noodles, but he FALLS ASLEEP WITHOUT PROTEST. I find nothing wrong with this, and I plan on doing this for the next two years of steroid usage. :)

Take my breath AWAAAAAAY...

2011-12-13T07:49:00.006-05:00

It is hard to believe that we go back in today for Gideon's hospital chemo, transfusion, and the start of another week of steroids. What does Christmas on steroids look like? We are gonna find out soon...

Yes, it feels like we were just at the hospital yesterday. I feel like as soon as Gideon starts acting like himself, his sweet lovable and glowing self, we go back for more attitude altering drugs. I guess I can look at this seemingly lack of a break as evidence that the chemo process is picking up speed. Before we know it, Gideon will be six and he'll be DONE with chemo altogether. I wrote that to feel better, but in a weird way it tugged heavily on my heart. I don't want to speed-up his itty-bitty boy time. I don't want this time to speed by so that I can soak in all of the sweetness of this age, but I want this monster gone, too. Cancer robs us of so much. That's why I'm not going to let these sharks be the boss of our sea. God's love and grace is unfailing. He is our strength every morning, our salvation in time of distress. There are other gorgeous things in the ocean on which to focus our attention. Gideon gets this more than I do much of the time.

May I also say that my opinion about so many things is being altered more and more everyday? I used to adore the quote, "Life is not measured by the number of breaths we take, but by the moments that take our breath away." I would skip around chanting this as I searched for every breathtaking moment, something awe-inspiring to ponder... Now I realize that life is also measured heavily on how we take the absolute desolate of moments and how we fill our lungs in that instant. I refuse to hold my breath, hyperventilate, or pant through those moments. They are just as miraculous as the moments that take our breath away due to beauty... It means we are still alive and have the chance to make the moment magical.

I'm thankful for the air I'm breathing today, and that modern science has kept our baby boy Gideon breathing when not long ago, he would not have had an option to draw in air for very long. This procedure is saving his life. So what if it alters his behavior for awhile? Perspective... Please pray that it all goes smoothly for Gideon James.

And, may I just say that a certain song has been playing in my head the entire time I typed this morning? (Can't stay serious for too long.) I will be singing this all day. Join me. We'll harmonize.

===================
UPDATE: Gideon did beautifully today. We are digging into those steroids tonight. And, on a VERY HAPPY NOTE, Nurse Michelle gave us the last date of chemo treatments for Gideon: August 18, 2013. I have a countdown ticker in the upper righthand corner of this blog post.

Maestro Gideon

2011-11-27T12:11:00.003-05:00

Gideon and I were trying to make a pom-pom bear, but my glue was not very cooperative today. So, we started to hum a song as we watched the little bear dance off his legs, his arms, and only one googly eye. I believe we were humming a concerto of some sort, because Gideon asked if we could listen to "BEAUTIFUL" music. I opened my iTunes, and let him click away. He nodded his head a little to The Weepies, he hummed with Mumford & Sons, but then he clicked on Vivaldi's Concerto in D Major for Lute and Strings and my boy was transfixed. Throughout the entire song, he stared at the screen smiling and letting those eyes just glow. When it was done, he whispered, "I want more of that, mommy! That was BEAUTIFUL!" I asked him why it was so beautiful and he said it was like he could "See the music." I am not kidding. He said that. He's four. And I wanted to bawl. The beauty inside of this boy just cannot be contained.

I asked him what he could see, and he said that there were dragonflies flying over a pond that was shining from the sun. I clicked on my Classical playlist and let him go to town. Every single time he clicked on a song, it didn't matter how long it was, he sat and listened to the whole thing. I wanted to hear his musings after each one, so I stopped folding clothes and watched him and waited. Sometimes I would interrupt the song and he would point to the play counter and say, "When this line is all filled up, we can talk." I promise he's the child and I'm the adult.

Two of the songs that he interpreted made me completely feel that awe again. He listened to the orchestral version of "O Mio Babbino Caro" and said it sounded like a mommy bird landing on her branch, scooting over to her nest, and waiting...waiting...waiting for her babies. Then! Then they were born and couldn't wait to fly, but mommy bird sang them to sleep again.

During Plaisir d'Amour, he closed his eyes throughout the whole thing while smiling. He said it was every mommy's song to her baby. Every mommy would want to rock her little one to it. And here I was sitting there and singing along with Elvis' "Can't Help Falling in Love With You" the whole time it played. I am so uncultured.

He played me songs that were on the ocean and a ship was in trouble during a storm, but it stopped and the ship was safe. Gideon also played me a song about a vacuum that just didn't work anymore and a phone that just couldn't ring. They ended up being best friends.

Then he told me that "Panis Angelicus" sounded like what he heard when he was "in my belly" while he laughed in there and rolled around. He also said he could "touch my heart" while he was in there to make me laugh instead of puke. Since that's what "new mommies do...they puke." Too much sweetness in one child, I TELL YOU WHAT!

We all know how Classical music fires those neurons, but my boy also LOVES it at the same time. I wonder how he'll feel about Opera? Is it too early? For now I will GLADLY go with this Classical love. What a beautiful afternoon...

Thankful...Right this very second.

2011-11-23T22:26:00.002-05:00

Gideon is sleeping in his bed right now. He coughs every now and then, but he is not feverish and his golden curls in the glow of the nightlight just spiral around my heart and hold it there in the softest noose of gratefulness. Once in awhile his heart lips pucker and slop around, making his little divot of a dimple deepen. And I just stare, transfixed. Then there is his absolutely healthy big brother, Brody. His eyes are shut, but those massively long and dark eyelashes make him look like a porcelain doll. He smiles in his sleep, and I love catching him in the act. I stare at him, too. I wonder how I got to be so crazy lucky to have two boys who make my heart feel more awe than it has ever experienced just in watching them sleep. I have been blessed enough to have hiked the Alps, seen the Sistine Chapel, walked the Great Wall, and stared at art painted by the greats, but nothing tops this. Absolutely nothing.

Sometimes I am so consumed by others' issues, by hurt laid on via wet wool blanket to the soul. I waste time trying to rationalize the completely irrational, and it is a poisonous trap. Sometimes I get caught up in the to-do lists and the worries and the bills and the medicine and the lesson plans and the appointments and and and and (even commas). Why? Why do I speed through it all? I know this makes me miss what is so very glorious right this second.

I caught myself on the way to the hospital this morning. There was a great song on the radio. So great that I can't even recall what it was. I wanted to get lost in it. I wanted quiet. But Gideon was in the backseat talking about the first time he ever sank his teeth into an Arby's roast beef sandwich. I heard myself doing the mom "MMMMhmmm... That's nice, honey..." all while cranking up the dial for more volume. What was I doing? What was I doing murdering this moment? This here and now. I could easily download that song later. I was not living in the moment at all. It took twenty whole seconds to glance in the rearview mirror and see my boys back there, picture them flash-forward as teenagers, and begging them for one word in my direction. This chit chat might not be as commonplace by then (but believe me! I will try! I will bribe for a story by then. Or threaten to tell them one of my own if they don't start yapping). I am thankful for that instant of clarity. I am grateful that I was able to be mindful of what I could hear come out of Gideon. And, as always, he never disappoints in his descriptions. He went on in complete dramatic fashion about how when Busi first bought that sandwich for him, he thought the meat was thin skin of some creature whose skin you could see through. But then! Then he TRIED it and it was sooooo tasty. It was meat but thinner. The bun was buttery and it didn't even need sauce to taste good! He said all of this like he had discovered the most sought-after treasure the world has ever known. This was better than any song.

I am happy to report that Gideon's transfusion went beautifully and he had no side effects this time! THANK YOU for those prayers. As far as the bacteria in the blood goes, we are still waiting on that. No news is good news, as the nurses said today.

I say it's all good news. I have the two most precious creatures in all of the world snoozing above my head right now. No one can steal that joy.

I know this clip is an internet sensation and everyone has already seen it, but I love it. I think it's perfect for Thanksgiving because we often say thanks for the obvious blessings, but so many things are taken for granted. Or if you happen to be flying this holiday season, remember: "YOU ARE SITTING IN A CHAIR....IN THE SKY!"

Hospital Again

2011-11-21T17:29:00.004-05:00

Gideon went to daycare a little quieter than usual. By 9:30, his daycare provider called and told me Gideon was laying on the couch with a temperature of 101 degrees. I immediately was able to get a substitute (thankfully). I took Gideon's temperature again in the car, and it was up to 102.4. We were told to once again go to the hospital.

Gideon's temperature kept going up and once he reached 103 degrees, he was allowed to take Tylenol. In the meantime, his nasal canal and throat were both swabbed. Many tests were ordered. As far as results of all of these tests go, bacteria was found in Gideon's blood. We don't know if that means that there was cross-contamination (something outside of Gideon created this bacteria after the blood was drawn) or if it is bacteria actually in Gideon's blood. Another sample was taken for closer inspection, and we will know in 2-3 days if this bacteria is something we need to contend with. Until then, I am telling myself it is cross contamination and nothing more. This is a calming strategy I have: denial. Well, denial and prayers that my denial is correct.

It was also discovered that Gideon is low in Immunoglobulin, an antibody made in our plasma that plays a crucial role in immunity. It sounds more like a Goblin who has a stuttering problem. Even though Gideon's numbers consistently look "good", this number is not one that is checked. Now that it has been discovered that the chemo is lowering this needed material, we will begin on a transfusion escapade. The Immunoglobulin is taken from blood products and Gideon will be infused on Wednesday. After that, he will regularly be scheduled for more transfusions.

Dr. Lobel said that 25% of the time this type of transfusion occurs, side effects occur. Those side effects include headache, fatigue similar to getting a Flu (which is due to antibodies interaction), or a rash caused from an allergic reaction to the product. There are also many other much more serious side effects that I refuse to type right now. Please, just pray that Gideon sticks within the 75% who have an easier time accepting this transfusion. Since the need for the antibodies outweigh the risks, Gideon will be revisiting the hospital this week for his first process. Please pray.

If you would like to help in any other way, please think about donating more blood in Gideon's name. Also, since this is a plasma situation, plasma donations would be even BETTER. Please click here if you feel moved to do something that will be a blessing to families like ours.

Thank you for all of the emails, texts, and prayers. I covet every single one of them and feel so very blessed to be surrounded by so many loving friends and family members!

Gideon's Fever

2011-11-16T08:56:00.006-05:00

I am tired. I know there were many of you praying last night, so I want to make sure I update all of you!

Gideon went in for his spinal chemotherapy and Vincristine push yesterday morning. When he was waiting for sedation, he already seemed very chill. He was acting calm and quiet, but I just thought he was readying himself for relaxation. The chemo injections went without issue. As Gideon woke up in his drug-induced stupor, he was amazed to see how we all grew more eyes and mouths while he was sleeping. That boy cracks me up.

Once I brought him home, Gideon seemed to just want to veg on the couch. I blamed it on the lasting effects of the sedation medication. Then, he fell asleep. Again, I assumed the sedation was longer lasting than normal. Once he woke up, he had major stomach issues (I just edited the first description...Sometimes I picture Gideon being 14 and re-reading this blog. He would have read what I just typed and erased, looked at me and said, "MooOOOoOOOm! This is sooooo embarrassing!" So, I filtered myself ALL on my own! Be proud, my more prudent friends!). Again, I blamed the heavy dosages of chemo.

Once I picked up his new monthly supply of chemo, Gideon was fast asleep in the backseat. I started to get a little nervous, but that nervousness peaked once I picked up Brody and Gideon was burning up. Not only was he HOT, but his eyes were glazed over, he was staring into space and completely not himself. His temperature was 102.8 degrees. I was told to take him back to the hospital.

His port was re-acessed without any numbing cream. I am now keeping a tube in my purse. Poor little honey was in so much discomfort and pain, and he had to go through more. He received antibiotics and fluids via IV. Then I was shocked when I was told Gideon could have Tylenol! Tylenol! As in the NORMAL kid drug!!! He hasn't been able to use that since fever cannot be masked when one has leukemia. He just had his numbers checked, and since they are currently high enough to know his body is working normally, we were granted this normal kid permission. It has never given me more pleasure than to give him something that eases the pain and fever.

We were released from the hospital, Gideon was put on chemo restriction (no chemo last night. I hate that. I feel like I missed an opportunity to battle this beast). I was told to check his temperature every few hours and if it went above 102 again, we'd have to call the on-call oncologist and most likely be checked in. Happily, that delightful drug known as Tylenol did its job and his fever stayed below 101. I may have been thermometer happy all night.

So now Gideon is back to taking his daily chemotherapy! He is laying on my lap and we are both in our jammies. He is very tired, coughing like crazy, and has a sore throat. I will keep my eye on him incase that fever monster pops up again. I just told Gideon how tired I am and he looked into my bloodshot eyes with those sparkling blues and sang with a croaky voice, "You gotta keep your head up, Oh-oh. You can let your hair down, Yeah-eah!" He IS a light. I am not very shiny these days, so I will have this blog act as his mirror for all of you following in order to spread his light.

Light

2011-11-13T21:38:00.002-05:00

It's parent-teacher conference week! I have never held conferences in this capacity as a music teacher, but now I have the chance to share with parents the way music makes their child's little face shine. There is joy in the face of a child who is engrossed in a melody. There is wonder in the face of a child who has played an instrument for the first time. It's magic, and I get to witness it every single day as a JOB. I am grateful for that. I always want to start my musings with happiness. I never want the weight of the world to rob me of what I have in the here and now, and singing a song with a chorus of boisterous and gregarious children will forever rank high on my list of "WOW" moments.

NEWS: Gideon is going in on Tuesday for spinal chemotherapy and he will be sedated with that. We will find out how he his body is coping with this heavier dosage of daily chemo, as well. In the midst of conference week, Gideon will also begin his steroids. I know it'll be a tough one, but we can make it! Please keep Gideon in your thoughts and prayers.

Speaking of prayers, I need to take this moment to THANK the amazing network of friends and family in my life. Thank you for coming around me, filling my soul, and then also reminding me that I need to stay strong for the good of my boys. Thank you for completely getting the brokenness and the anger that can so easily creep into my heart and make me only focus on life's hardships. It can so easily take control! No amount of strife is going to steal a healthy moment spent with my baby boys.

Brody and Gideon, you are my life's gift from above. As you grow up, I want you to always remember you are not alone. I want you to feel the miracle in a day. Please take the time to grieve, to be angry, to be mad…but get back up and look UP, so you can take your next step in the right direction. Please, please remember the C.S. Lewis quote that says, "An explanation of cause is not a justification by reason." That means that there are reasons, but no excuses. Blaming everyone except yourself is the fool's way to seek validation and an avoidance of taking responsibility for your own life. Please own your life. Be so proud of the way you own it, and you won't feel the need to ever try to justify yourself.

We are always learning. If I can view every challenge in my life as yet another way to mold my soul for the better, then there will be less dark and more light. Closing my eyes in anger will never help me to see the light, so I will pray to focus on that which is pure, lovely and good. All I have to do is open my eyes and it is there. And if I can't open my eyes, I have friends who will pry them open for me with a crow bar, but they happily offer me eye drops afterwards. Tough love for tough times!

It's AMAZING.

2011-11-02T15:43:00.001-04:00

Emotional Weekend.

2011-10-09T23:44:00.006-04:00

It has been far too long since I last posted.

My brief update:
1. Gideon is doing beautifully with his chemo. He is doing so well that we were able to make his dosages higher.

2. Brody is adjusting to kindergarden and is even starting to LIKE it (he would much rather play with a ball outside than be inside anywhere).

3. Both boys are playing soccer. When Gideon was on steroids, get this, he scored 16 goals. No lie. 16. No wonder sports leagues are down on the 'roids. The following week, once Gideon was off of those meds, his number dropped to a respectable 1 goal while spending any extra time on the field staring at airplanes and chasing butterflies. He was back to the Gideon I know…

4. I adore my new job, and that is an understatement. I get a trillion hugs a day, I sing and dance all day long, and when I walk down the hall and past a first or second grader, I feel like a SUPERSTAR. Their faces light up in happy surprise/joy as they greet me, like they are so shocked to see me in the hall with them. They fill me up with so much love.

And now…. Emotional weekend. Here I go. I'm not sure how much I can type without breaking down. I will start with a CELEBRATION. Mattawan's first ever Kick-It event that raises money for CureSearch (childhood cancer research) raised more than $9,300.00. Our goal was $5,000! It was an absolutely beautiful day, and the kids had, pardon the pun, a ball. My favorite game from the day was the Early Elementary. The stands were FULL of spectators, but one section was made up entirely out of high schoolers. They cheered and hollered for those little ones until each one felt like a rockstar. They chanted each of their names and even did cheers (like the peeling banana one).

Then there was a moment in the early el game that made most parents in the stands cry. I know I did. Gideon was playing in the game, even though he won't be in Kindergarden until next year. He kicked the ball and started to run to 3rd base instead of 1st (he did that every time). One of my little students, Michael, got the ball and started running after Gideon. When he was one step away from tagging him, a light went on behind those brown eyes and he stopped. He started to slow motion run towards Gideon, allowed Gideon to get to first base, and then he tried to tag him, but "missed". I wish I had it on video. When it played out, it was just the most precious thing on this planet. To be six and to have such strong empathy… Oh. It was amazing.

I will post more pictures from the game SOON, I promise.

One of the things the students decided to do during Kick-it was to bring stuffed animals to donate to the Children's Hospital in Hailey Grace Brown's name. One of these bears was about the size of me in height, but wider. He was humungous. The same day as the kickball game (Saturday) was the day one of Gideon's chemo friends, Lacy Faber, went home from the hospital to spend her last few days with her family. After discussing it with the Mattawan students, we decided Lacy should have the biggest bear for the biggest bear hugs.

I went to her prayer vigil tonight and brought the bear. I didn't expect to go inside, I was going to drop the bear off at the steps and then take my candle and find an empty millimeter on the already full-of-loving-people lawn. The family ushered me in, instead. And there was Lacy in her daddy's arms, her mommy beside her, holding her as well. The priest next to mommy. Lacy was not awake. She was taking shallow breaths and I clung on to that massive teddy bear like by holding it tighter, this moment of togetherness for this family would last longer. The last time I saw Lacy was when she was playing instruments in the hallway of the clinic with Gideon and singing "Wheels on the Bus" with the music therapist. Such joy was in those eyes. And now, now… Now I remember why we won't stop fighting against this atrocity. This monster stealing our babies. Lacy's mommy, Mary, said, "Soon she'll be making music with angels," almost like she was trying to comfort me. Dear Lord, be with this precious family. Comfort the Fabers. Everyone who feels as helpless as I do, please pray for them.

We love you, Lacy.

Madly in love with Mattawan...

2011-09-04T23:27:00.005-04:00

The first time Gideon received his spinal chemo and I saw his eyes rolling and shaking in their sockets, my broken heart still on the hospital linoleum vaporized into even more miniscule parts. It struck me that this last spinal chemo, when I saw his eyes doing their far away sporadic and spastic movements, I just waited it out calmly until they stopped their jumping and he was able to focus on me more clearly. I just watched him and waited while methodically smoothing his hair from his forehead. When there is no other choice, it is crazy what we can accept in this life.

But I haven't really accepted it. It is hellaciously wrong, and it needs to be taken away from my baby and every other little battler out there. It is unacceptable that in the past twenty years only one chemo drug was created solely for children. So, I haven't just accepted this disease for my Gideon or any other child. With every roll of his eyes during his drug-induced stupor, I become that much more fervent and desperate that childhood cancer be obliterated for good. All of it. Maybe I don't sob in a heap as often as I did in the beginning, but this heart of mine screams for a cure. I have not lost hope and I never will. Once Gideon has beaten this, I still will not stray from this one goal in my life: to see childhood cancer be a more advocated cancer in our world, and with that will come more funding, and with that: THE CURE.

I can't begin to express what it is like to be surrounded by colleagues who not only empathize with this vision, not only do they support this effort I believe is my life purpose, but are actively battling with me. There is no talk with Mattawan Consolidated School employees. There is vision and then action with every single staff member. I can't even put into words what this feels like to me. I cannot weave a dream of a more perfect place to send my own babies (my gems, my life, my blessings from the Creator).

Once I was told Gideon's steroids would be increased significantly this round, I braced myself. The same late night behaviors presented themselves as before, but this time I was back at work. I came into the high school on Wednesday morning for an inservice, and the sleep deprivation just hammered down on me with a headache. I knew it would transform into a migraine, and all I did was share with my closest neighbors at the meeting about this pain and fatigue. They had an Amanda-go-home-now intervention. Cindy Harrell, Barbara Cooperider and Kristen Snow followed me into my classroom ORDERING me to get in my car and drive home that instant. I "yeah-yeahed" them, but then I noticed they wouldn't leave. They didn't budge from my room and they wore their "I MEAN IT" teacher looks. I'm here to say, as they escorted me (yes, ESCORTED me) to my car and watched me drive off, that teacher looks are powerful entities of their own. How lucky am I to be so loved and cared for? Who else works with souls such as these? I love them! I LOVE them.

Yes, I have that support and so much more. They look out for my well-being, but they, again, embrace my vision. Mattawan Consolidated Schools is going to host a district-wide kickball tournament called KICK-IT to raise funds for CureSearch, the world's largest children's cancer collaborative. The fundraising will last the entire month of September, Childhood Cancer Awareness Month, and it will end on game day: October 8. For more information and updates, please follow the Mattawan Kick-it Blog here. The staff is going to honor each child battling childhood cancer in our district at the event itself. There are seven kids that we all will honor, and one special little girl who we will honor and remember. Please mark it in your calendar and come and watch and take part in a silent auction, food, cheer, and support for all of our area fighters!

Because of this event, Brody is over the moon with excitement. He's my sport lover and he cannot wait to take part in the battle against his brother's sharks. He will be playing and is already registered to do so. Please click here if you'd like to donate to CureSearch in Brody's honor.

There are some AMAZING times coming... I have to thank MATTAWAN CONSOLIDATED SCHOOLS, once again, for being a part of the solution in this world. How I love you all...

(AND...As inspiration for all of you who have to get up-up-up early for school, here's some musical inspiration. I dedicate this one to you, Mattawan staff. Sip that coffee and dance at the same time.)

Gideon's JOY

2011-08-16T21:48:00.002-04:00

After Gideon's last dosage of steroids, he was having symptoms of withdrawal. He was shaking – his entire body. His legs were cramping up in muscle pain. He had just thrown up in a bucket he got out himself and announced that he was going to his room. I thought he was going to go cry, scream, maybe even hit some pillows over the pain coursing through his little body. I thought maybe he was going to kick his stuffed shark like he does whenever he feels overly angry about the fact that he has cancer. I had to check on him. I thought he would need hugs of comfort or maybe redirection if he was destroying furniture out of anger. What I witnessed: Gideon had his arms out. His face was tilted up. Peace was almost coming out as visible white light from his shining face as he spun around and around in slow motion circles singing, “Oh! This is gonna be a good life. It could really be a good life! Good life!”

What was that? How could he, while being so tormented, be so full of something more profound and deep than happiness? “Children are resilient,” is what I am told. I think it's more than that. Gideon gets it more than most: No tragedy, no horrendous or catastrophic event has the power to ruin a life. Why? Because of JOY.

It is a peaceful radiance during the crisis of life that resonates and spirals out of those who choose joy in every moment – even the excruciatingly painful ones. I say that is the most pliable moment, the most green with new growth situation we can come by. Our hearts are broken, and we see the promise in the day. We draw the air into our lungs and feel the life there. The sun has never been so bright, and those birds. Do they sing every morning? Because I didn't notice until now. We notice a stranger helping someone open a door and breathe in more of that joy. It's God. He is everywhere if we unlock the negative circumstances that jail us.

As my friend Kristen and I talked about, joy is much different than happiness. Happiness relies on positive circumstances while joy is that awe-inspiring flame that lights the soul amidst the most bleak of situations.

I'm going to find the joy. I plan to feel the love of the blessings I have around me. Like Gideon, I won't let anger and resentment paralyze me – my own anger or that of the people around me.

Gideon showed me God, once again. It IS gonna be a good life.

“'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future.'” - Jeremiah 29:11

DOUBLE Special Mattawan Blood Drive!

2011-08-01T22:29:00.003-04:00

What two causes are the most heavy on my heart? 1. Enough blood donations to bless those who need transfusions and 2. Money towards finding a CURE for all childhood cancer. Jennifer Bussies and Greg Mikelson of Mattawan have strategized a way to make BOTH happen at once. I know. Too much goodness to process, so I'll slow myself waaaaay down. I sometimes forget you are reading this and I'm not just talking to you. My speech pattern goes feverishly quick when I am beyond excited. This would all read like a high-pitched tongue twister if it was my actual voice. I guess that makes you lucky. No deranged chipmunk chatter for you! Back to the miraculous facts...

On Thursday, August 25, there will be a Michigan Blood Drive at the Mattawan High School Cafeteria from 1 p.m. to 6:30 p.m. Eventually there will be a link to click on to schedule an appointment on this site by scrolling to August 25 and Mattawan High School. Here's the sweet-sweet-sweet topping on top of this perfect event: for every person who donates blood, $5 will be donated to CureSearch and $5 will be donated to the Mattawan Student Council. This is HUGE. I can't tell you how beautiful this is to us all. And yes, there will be a fish there for you to fill out for Gideon.

If there are any summer plans to make, I'm really hoping this event will be a part of them. Gideon has spinal chemo that morning, but I'm thinking once he is lucid, I will bring him in and he can watch mommy get a turn with a needle injected by a white labcoat-wearing person. It'll be his turn to offer the words of encouragement.

Please join us! You will give lifesaving blood AND bring in well needed funds.

THANK YOU, Jenn and Greg! Thank you Mattawan Student Council for so lovingly sharing your profit with such a worthy cause. TWO worthy causes... Oh. Again, I love humanity.

StubbornT Port

2011-07-30T20:41:00.005-04:00

Driving down the road today, Gideon's shrill voice demanded that I "PULL OVER!" I thought he was about to throwup due to the intensity of his request. I pulled over and got ready to hand him the tupperware in the front seat. Instead, he was gazing upward at the sky and said, "LOOK, MOMMY! The clouds looks like the USA!" I followed his pointing finger and I will say in all honesty, the cumulus formation was almost maplike in accuracy. Florida, the states, and even Michigan was a hand with a wisp for the Upper Peninsula. It was all there to scale (cloudy-scale).

I'm so glad I pulled over and saw that.

I also take that as a sign that this debt crisis will be figured out soon. If masses of water droplets can unite in order to create a fluffy and serene USA in the sky, I'm thinking congress can come together and compromise for the good of us all. See, this is why I prefer living in the clouds, self-admittedly and honestly. Ugh.

And just as my mind started to drift over (gulp) politics, my boys totally snapped me out of it with this conversation:

Brody: Do you smell that?
Gideon: Yeah...It smells like...STEAK! (Bounces and claps with glee)
Brody: Yes. You like steak, huh. Why?
Gideon: It's 'cause A1 is so good. And I like to chew steak with A1 on it. It makes everything in my mouth happy. And my tummy, too.
Brody: Oh.
Gideon: (Sadly) It doesn't smell like steak anymore. It smells like clouds.
Brody: (Very serious) Yes, you're right. It smells like cotton balls, doesn't it, Gideon?
Gideon: Yes. Cotton clouds.
(...Both turn and continue to silently look at the clouds in the sky as we drive.)

God bless these boys.

Update for now: Gideon had trouble at his appointment last week. His port didn't want to shed a drop of blood or let anything in, either. Vincristine can burn as it goes in, so the nurses on staff kept flushing his port with fluids to get it working again. We don't want clots in the port. As we waited, it started to look like Gideon was going to have to get his Vincristine in a vein, and I really was praying that wouldn't happen. Finally, Nurse Michelle was able to get a few drops of blood out of him to check his numbers (which are doing well!) and he was able to get the Vincristine push. HOORAY! As the needle was twisted and turned, Gideon acted like it was no big thing as he was more concerned about his monster creation on the Leapster. Once in awhile he said, "ow," but he never fussed. When asked by Brody how his chemo went, Gideon said, "Fine, but I have a stubbornt port. He didn't want to wake up and work today." Again he amazed me (and I love how he says "stubbornt").

We started steroids again. He is clingy, wild-eyed, full of superhuman energy, and achy all at once. I am using a lot of his massage from OT during this time and it seems to be curbing the outbursts. They aren't as frequent as normal, thankfully. The muscle pain, though... I'm not sure how else to deal with that but to keep laying on the cold packs where it hurts. Poor honey. Please pray for him through this not-so-fun time...

Brody has had some GREAT times this week. He went to Bronco Hockey Camp and adored it. Not only did he get pointers from the Bronco players he so loves, but he got so much better at his speed, control, and cross-overs. His absolute love for this sport hasn't dwindled at all!

Gideon is calling me from bed right now. Guess what he's requesting? Chicken drumsticks! Here we go... If you get hungry around 3 this morning, c'mon over. It'll be an all-night buffett.

Bibbidi-Bobbidi-Boo

2011-07-24T22:17:00.002-04:00

I cannot believe that I woke up in Disney World this morning. Now, I am home. What a surreal whirlwind this whole traveling via plane thing can be, huh? Or maybe I'm just so very tired that everything has that "WOAH" effect. I'm not sure. What I am positive about is that this past week has been A M A Z I N G ! I didn't think Disney World could get any better than to be a kid and believing real-live princesses were all around me, but I was wrong. Disney World with my own babies is far better. Only this time we spent more time with fast cars, Buzz Lightyear, and pirates than I did as a child with the fairies and princesses. Don't tell, but the boy version is just as magical!

All-in-all we spent two days at the Magic Kingdom, several jaunts to Epcot, two days at Hollywood Studios and one day at the Animal Kingdom. I can honestly say we did it all...every single ride (besides princess themed things... I tried, I assure you, but I lost). Gideon is our thrill seeker and adored Splash Mountain, Thunder Mountain, Star Tours, GM Test Track and The Haunted Mansion. Brody was tall enough to go on Space Mountain, and went, but didn't want to go on again. Mostly the boys wanted to stick to the Speedway, Toy Story Ride, Star Tours and the Test Track. Those were our repeater rides, which I loved. As far as shows go, we were able to take in the parades and the firework shows at each park... But Fantasmic! at Hollywood Studios took the PRIZE when it came to light shows --- wow. And Nemo the Musical at Animal Kingdom was BROADWAY amazing (as soon as those sea creatures were kite flown around me, tears surfaced automatically. It was beautiful!). Gideon adored all of the Nemo and Lightning McQueen themed rides and shows. Brody's absolute favorite was the Laughing Factory for Monsters Inc.-- I have never seen that boy laugh so hard. He had tears flowing, and so did I. The two of us single-handedly (or should I say single-lungedly) filled the laugh canister. Oh! Guffawing is encouraged in Disney... A cackler like me adores that fact.

Blessings pretty much poured over our heads from day one of our trip. First of all, Meritz Tours hooked us up with a suite fully equipped with a full kitchen and a jacuzzi. Mmmmm. They spoiled us with passes, and even introduced us to The Boardwalk Resort's head chef, Mike. Chef Mike asked Gideon what he loved most to eat, and then proceeded to make certain he had those items for his meals: chicken drumsticks, bagels, corn on the cob... I'm talking red carpet treatment. And then, BOOM! We sat next to a DOLPHIN TRAINER from California while we were waiting for FANTASMIC! to start. A dolphin trainer. Next to Gideon. He proceeded to show Gideon pictures of the marine life he works with, told stories about taking famous California natives (not mentioning names here) on dolphin excursions and swims...all of it. It was incredible. We met so many great people in lines and on Monorails. I think it is pretty much a rule that you cannot visit Disney if your heart doesn't believe in magic and is full of happiness.

I can honestly say that Brody and Gideon had the time of their lives... Here is a snippet of their time living every kid's dream.

Gideon's RACE DAY!

2011-07-10T21:17:00.002-04:00

Wow. It was an amazing race this weekend! Gideon is already asking when he can next go to the race track...

Now we are battling the fever bug, once again. Thankfully the fever is low, and we want it to fizzle away into the cool pool of normal, please. That's where we could use your prayers, please!

New Family

2011-06-30T03:44:00.005-04:00

Before I start the update, I must thank The Red Cross Headquarters in Kalamazoo for inviting us to your 10-plus gallon donor function. It was an honor to be around people who have saved the lives of thousands! To everyone who has donated in Gideon's behalf and you are due for another poke: Gideon is still collecting those fishies. So make your appointment, please. :)

Gideon's ANC is just above 1200, so these numbers are okay when it comes to fighting infection, but not high enough to increase his chemo dosages. He is back on steroids and the food cravings are much pickier right now. Food he has always loved, he spits out. Sometimes I just want to taste what he's tasting. Sometimes I wonder if he has subconsciously attached food to memories and that's why he's grossed out. I don't know, but I really loved the stage when all he wanted was tomato soup. Why can't he just crave asparagus?

Not many of you know this, but Gideon was diagnosed with a Sensory Processing Disorder when he was just a baby. Water on his skin felt painful, tags on shirts, etc. His OT appointments rid him of the more pressing challenges, but still to this day the texture of all fruit and vegetables make his gag reflex work double time. As you can imagine, this struggle along with the stomach issues chemo has brought to us has made eating such a difficult task. For a long time, I could puree fruits and veggies and he would eat them that way, but not anymore. Once again, he is dealing with so many variables. He has now been referred to an occupational therapist for further help in getting over this issue. I am praying that these visits will open the door to more food that he will eat that does not taste like tin to him. We start next week.

Clinic went well. I now know that both of my boys view that place like a second home. They play with complete comfort and race Little Tike cars down the halls with enthusiasm! That's what Nurse Nancy called their giggles and semi-loud outbursts: "enthusiasm." I was on my way to put them in a chair to calm and quiet them down when nurses met me out in the hall and assured me that they were not bothering anyone. I think I was just overly emotional and wanted to somehow keep the clinic silent and reverent after what I witnessed as soon as the boys and I arrived to our appointment:

It hit too close to home. It grabbed my soul and started to wring it out over a sink full of "WHY?!" I saw her bolt from one of the clinic rooms, and I recognized those eyes in a millisecond. They were hallow sockets of massive shock only brought on when overwhelming pain is heaved unexpectedly unto the human spirit. It was the look of every beautiful thing, thought, memory evaporated in an instant. Those were the eyes of a soul experiencing real hell on earth. I wanted to run to the end of the hall (a close cousin to "hell" in spelling) and throw my arms around this precious mommy whose heart had just collapsed from whatever news she heard behind those doors, but I recognized her animal-like movements in dialing her cell phone. She had to get the news out. She had to feel like by saying it out loud over the phone, she could process, she could plan, she could have more people around her to hold her up because just as her heart felt as though it had failed, her feet were next. I heard a nurse say that the doctor was talking to "the new family" and my fear was confirmed. Another baby was stricken. And that's when an uproar of emotions invaded me and I really wanted to puke: NO mommy should hear that her baby has cancer. I felt myself shaking in absolute rage. Honestly. I don't think I have ever been so completely seething at one thing in my life. At the same time, I wanted to somehow comfort her. I wanted to tell her I knew what it felt like... then I remembered. Upon hearing those words for the first time, I felt like the only human in the universe who could understand my own pain. I walked into the clinic for the first time while Gideon was in the Children's Hospital and looked at the smiling moms and sweet children in the waiting room. In that moment I convinced myself that there was no way that family had been told the same news as I was told. No way would they be smiling. NO way life could just keep going when "cancer" joined the family. Sadly, by the time we were put into our own room to wait for the doctor and left, the new family was gone. Maybe she wasn't a hugger, but I would have wrapped her up so that the hug wasn't a hug, it was life support.

No one wants to join the pediatric cancer family. But once you are one of the 46 families who are given this news every single day of the year, the pain and determination to beat it bonds us all. We have to beat this. I never want to witness this again. Ever. I never want another family to hear those words. C'mon, cure.

JULY 9: Mark your calendars, please!

2011-06-27T15:18:00.009-04:00

We took a rainy vacation to Grand Marais, and have returned very relaxed. We may not have been able to hike as much as we wanted, but we mastered how to hang out in our jammies, play games, and make music videos. Gideon only had one day up in Grand Marais when he was vomiting, so, seeeee? The place is healing. And when we returned home, there was our reliable monthly package from Grand Marais, again. They have not stopped sending us care packages since the diagnosis. I love you, Grand Marais people!

Gideon is doing well. He has his tired spots and his achy moments, but the boy's optimism is still so fresh and infectious. I think I forgot how to breathe a few times while I watched him watching Cars 2 in 3D. The way he lets himself guffaw at those funny moments -- oh. He tilts that precious head back and lets his laughter take over his entire being. Yup. Still the same, lovable honey pie.

The steroids start tomorrow, though. So, I am thankful for all of those prior joy jubilees. Tomorrow also brings counts being checked and his IV chemotherapy at the hospital, so we are praying for some good results and that his body responds well to the treatment. Be nice, Vincristine. I heard you are made from a flower blooming in the rainforest. I'd like to picture you as a pretty peony and not as a vicious Venus flytrap. Okay? Okay.

AND NOW... JULY 9: There will be race held in Gideon's honor at the Baer Field Speedway. Anyone near Fort Wayne, we would love to see you there! The money donated will go straight to CureSearch, the pediatric cancer research organization that is the MOST important charity in my heart. The race itself will be at 7:30 p.m. If you need directions, please click here. If you are able to join us, cheer for the Long/Crago Racing team! One of their cars looks like this:

Yes, I think this car is the best looking, don't you! GO TEAM LONG/CRAGO!!

As you all know, I am passionate about fundraising for childhood cancer research. Please watch this video and see why we need to make more noise about this underfunded endeavor. Join us in the stands as we make noise at the racetrack as we make strides dollar by dollar towards the cure! ***This organization, MAKE SOME NOISE: Pediatric Cancer Research Foundation was started by a real-live childhood cancer fighter, Malcolm. Please click here for more information. THANK YOU!

A Year Ago Today...

2011-06-12T07:54:00.007-04:00

One year ago we were told Gideon has cancer. Part of me still wants to punch something over this reality, pieces of me just needs to sob over everything Gideon and all of us have had to endure, but the largest chunk wants to just saturate myself in a pool of gratitude. When those words first left the doctor's mouth and I fell to the ground sobbing, I will be honest: I thought it was the end for him. I thought this was a death sentence. There were moments when I appeared "strong" to make each coveted Gideon heartbeat resonate as beautifully as possible so that he enjoyed what he had left on this earth. Maybe this is morbid, but then I got to thinking: shouldn't we always live as if it' s our last moment? This perspective did make me more resolute in this pre-cancer existing notion of inhaling each breath deeply. We have a limited amount of time so eat it up! Sometimes in this journey we were just thankful for a millisecond of no tears. But now look. Gideon's alive (flourishing, even), he's fighting, and he's BEATING those cancer sharks. Thank you, GOD! All praise to Him.

I am grateful to have witnessed the way humanity is instinctually beautiful, giving and helpful in times of heartache. If I listed every single way loved ones and strangers have come to our aid this past year, it would take you another whole year to read everything. I am still baffled by the way my staff came to my rescue by donating their sick days, how I didn't cook one meal for a good six months, the way people joined forces to donate blood in Gideon's honor in massive droves, and how people would stop at nothing to bring a smile to our faces (WMU hockey team, friends, mystery SPA donor, bedroom redecorators, neighbors...on and on...)!

I am mostly grateful for the way Gideon is responding to treatment and the way I feel in the deepest part of me that he will beat this and remain in remission once he is six years old. This sense of hope has brought us through every obstacle, and it comes from the Highest of all Power. We know it's not up to us, but we pray and trust continually.

Today is a milestone! Today we glance back in memory of all we have been through, but we also focus our eyes forward. It was the most difficult year of our lives, but I cannot be more amazed by how transforming and purifying human strife is to the soul (if one allows it to do so). I thank God for blessing me with two amazing sons who have accepted their new role in life with more grace and bravery than I would have thought was humanly possible. I am humbled to be their mommy.

ONE YEAR DOWN, two and a half to go! You can do it, Gideon! Love you, little goblin!
P.S. I put together a video of video snippets from the entire year (only the good parts...). It can't be uploaded here or on Youtube, so I posted it on Facebook. It is available for all to see here. Go to my photos/videos and you can play it there.

Not a Moral Dilemma...A Mom Dilemma

2011-06-11T22:09:00.007-04:00

I feel as though I am reborn after the steroids wear off. I feel like I can think without wanting to cry buckets. So, here I am: relieved and sleeping and not refereeing every ten seconds.

I'd say the newest experience that I have never had the opportunity to live presented itself during this past steroid bout. Gideon was NOT feeling well, and I'm pretty sure that rain clouds lingered above his head quite a bit. I was told that since the toxicity keeps rising inside of Gideon's little body, things get a little more pronounced in the pain department. But, that's not new news. The new news came when I could see a sliver of the Gideon glimmer in those baby blues. He wanted to go with me to the grocery store! I inhaled that noodle of normalcy and grabbed the keys.

(I need to preface the story, mid-story: Every time we go grocery shopping I tell the boys we will leave immediately if they act or say something inappropriate. I mean, leave the full cart and march out of there. You wouldn't think this is a threat since I can't understand why they would want to stay at the grocery store, but it works every single time. It might be because we sing to the lobster or choose our snacks based on the packaging, I don't know. It's an adventure for them at this point in their lives, and they DON'T want to be forced to do the mommy-stomp-out-of-here walk of shame....Maybe that's it, the threat of embarrassment. I digress...again...)

So, around aisle 12, Gideon had the strangest expression on his face. We were passing something that was more poignant in scent, so maybe that is what triggered it, but he leaned over the side of the cart and threw up. A lot. Here's where it got interesting: Brody, my weak-stomached honey, saw the puke and ALSO puked on top of Gideon's puke. I know. This is probably difficult to believe. I was a little stunned myself. While Brody's addition wasn't as hearty as Gideon's original load, I was panicked. Panicked and exhausted mom who saw the faces of other patrons all around and JUST DIDN'T WANT ANYONE ELSE TO ADD TO THE PILE!! So, what did I do? I ran behind the meat counter to the employee-only sink and ripped open the paper towel dispenser, wet some towels and took the rest dry to the scene of the crime. I got down on all fours and began scrubbing up the puke. I ran, puke to trash can, trash can to puke, until there was only a smear left. I then alerted an employee to disinfect. Once I finished washing my hands in the employee only sink behind the meat counter (funny how no one says anything to a wild-eyed and crazy-faced mom muttering to herself under her breath), I pretended nothing was out of the norm and pushed the cart holding Gideon and guided a bewildered Brody to the not-so-crowded organic section.

"We need to go, guys," is what I said as I began lifting Gideon out of his little seat. Since we were in aisle 12, we had quite the load in the basket already. I was going to leave it all (sorry, employees for using all of your paper towel, soap and now leaving you with an hour of re-shelving...).

I froze as I saw Gideon's little lip quiver and he began to cry, "Mommy! I'm sorry! Please don't make me leave. I'm all better and I won't do it again! I promise!" Rip that heart, baby boy. I realized that if I left, it would seem to Gideon like it was because he did something wrong. He didn't!

"Are you sure your tummy is okay?" I asked, "I don't want to keep shopping if you feel yucky!"

"It's all out, mommy! I'm okay. Please! Can we stay?" Gideon begged and Brody chimed in with agreeing whines. So, judge as you will, but I made the mom decision to keep on shopping. Sure, witnesses to the Puke Apocalypse kind of gave me weird looks as we continued to shop as if nothing ever happened. The old Amanda would have wanted to tell them, "It was puke from his medication. He's not sick, I promise!" But, I realized I didn't care what they thought. OH MY GOSH! I'm growing up....

So, we got a lot on that trip. Mommy no longer cares what people think and we have food in the fridge. Win-win. Oh! And no re-shelving for those paper-towel-less employees. All is right with the world.

Don't Cry, Baby.

2011-06-04T08:51:00.003-04:00

The medication hits Gideon harder and faster than ever. At the first steroid, his body just immediately resumed the steroid monster persona. He has been so very sore and needing cuddles lately. Also, he just acts far away and not really here in the moment. I feel like the spinal, vincristine, and the steroids combination is a dazzling off switch for his eyes. He'll tell me certain parts of his body are on fire and he cries in moans, but then that is followed by an extreme jolt of anger! He'll be sad and wet-toweled in my arms, and then he'll thrust his head against mine in a crashing head butt. And then there is the realization of what he did and the tears just start flowing and he is so brokenhearted. Then he needs more cuddles of reassurance and sobs hysterically if I try to move to the kitchen to do the dishes, even five minutes after the cuddling love...It's never enough time for him.

We have found our solution! Every single time Gideon does something he is not proud of, or every single time he is in pain, we put on this song and slow dance. Once the song is over and he has sung along in whispers on my shoulder (my GOSH, I love that wispy feeling...feather breaths in tune with the song...mmmm), I can put him down and he is normal for a little while. It's the perfect healing combination: physical proximity, comforting words and fun, slow twirling. So, I must say, we have listened to and danced to this song at least twelve times yesterday... And bedtime preparation took a long time last night since Gideon threw Brody off of his tooth-brushing stool and I had to slow dance with both of them in my arms after that one, since there was a wicked almost-toothbrush sword fight in retaliation (at least Brody acted more like a knight than a monster)...

I am okay with the fact that this may cause my children to spontaneously dance during stressful situations. It could be worse, right?

I AM Bobbette Ross.

2011-06-02T17:25:00.005-04:00

"...And we'll all float on okaaaay. And we'll float on okay." This song has been playing in my head over and over and over since I woke up. I think maybe I was thinking about Gideon's floating hospital medication he was about to have, had, and then felt the effects of for awhile after. So, that chorus has been stampeding every other thought dancing in my noggin today.

Gideon hopped into that hospital bed like he was strapping in for a carnival ride this morning. He immediately asked for his "delicious air," aka oxygen tube in his nose. He told me it feels like the wind at the beach. He really did. After he got his port accessed, he kept saying, "I'M READY FOR MY SLEEPY MEDICINE!" And he was. His little eyes danced with excitement and he was grinning in anticipation. I never-ever-ever am ready for the sleepy medicine. I am never ready to watch his spinal fluid drip-drip-drip into test tubes. Whenever the tubes need to be traded and a drop goes unused onto the sheet, I cringe and blink my eyes shut to block out the wasted drip of precious Gideon rain. I want to cup my hands and collect this fluid like it is the one last drip of holy water left to purify the world. I feel like a crazy person when I notice this about my thought process, but it's there.

I must say: NURSE MICHELLE NEEDS TO GET ON STAGE! Hear that, Nurse Michelle?! You have a gorgeous voice! Gideon, I think, was digging being your backup singer as you serenaded him to sleep once the sedation process began. I found myself listening to her and getting carried away with her tune instead of watching the needle as it found its way into the base of Gideon's back. I think maybe she was singing for me even more than Gideon. It was my own version of soundwave medicine.

Once Gideon was knocked out, and the procedure was finished, I had to find a new way to get him to LAY FLAT! So, I got out his drawing book and we made these smiley-face sticker guys, as seen above. Gideon told me what to draw and in what color, and I doodled upside down so that he had the full view of my drawing in action. I felt like Bob Ross as I described every crayon stroke in a quiet, om-like voice that would keep medicated-crazy-eyed Gideon calm. "See how I am coloring the hat red, Gideon? I will just shade it in niiiiiice and slooooooow. I hope it turns out how you want it." We even made a happy rainbow. He wanted to be a rockstar with blue hair, and I couldn't blame him, so there he is: a yellow-faced (not from jaundice, just from being sunny), blue-haired hero.
(TANGENT: Did you know I've always wanted blue hair? Yes, I think this obsession began when Barbie and the Rockers came out and one of the back-up singers, Dana, I think, had a big blue puff in her hair and I wished her entire hair was blue, too. I have been dreaming of it ever since.) Gideon is his mommy's boy, that's for sure!

We started steroids today, and his numbers were good enough that we were able to STRENGTHEN his chemo. I am choosing to think of this as an accomplishment and not in the sense of more toxicity in his body. Cancer, be gone! "We'll all float on okay..... Sometimes life is okay... Good news is on the way!"

Always, Always...

2011-05-26T16:46:00.004-04:00

A year ago today Gideon had a very high fever with no other symptoms. When I took him in to the doctor, I thought maybe it was strep throat. It went away after four days, and a couple of weeks later, the leg pain began. Soon after, all of this: cancer reality. It is so very vital to know the signs of childhood cancer, and get your little honey in as soon as possible if these signs present themselves! It is better to be seen as paranoid, I promise.

I can't express how much I wish I could pinpoint the exact moment in time when the cancer cells invaded my baby. I wish there was a way to zap them as soon as they entered his system or if by any chance, force-feeding him five stalks of broccoli would somehow stop it all from happening in the first place. Frustrating and infuriating emotions still course through me since it's so unfair. HOW did this happen? WHY does it happen to innocent babies? No, the feeling of complete bafflement doesn't completely go away with time. It sneaks up on anniversaries like this one... the fever anniversary.

In better news: Gideon's curls are coming back. He looks like a little downy chick with tiny little stubs of almost-there spirals behind his ears. I love it when the sun hits his strands and they light up like a fuzzy crown atop his beaming little face. It feels amazing to have our little boy go out with us on a walk or to the hospital, and no one notices anything amiss or different. Now comes the new normal.

I have had people on several occasions come up to us and say, "He looks GREAT! Is he almost done with his treatment?"

And then I smile and say, "No, not until he's six."

Always, ALWAYS the questioner takes a step back, stunned. And then he/she consistently says, "But he looks so GOOD! Does he get chemo once a month now?"

"No. He gets chemo everyday until he's six, with IV and spinal chemo more intermittently."

At the word "everyday," there is then the shocked face of pity and always, always a slow shaking of the head in Gideon's direction. And always, always I feel the need to comfort the questioner with things like, "But he's doing great!" or "The prognosis is good." or "He sure doesn't look it, does he?" And I give the questioner a little hug. It's not his/her fault that the ins and outs of childhood cancer are not common knowledge. It's the weirdest feeling to comfort other people about my own child's cancer. I think that comes with the territory.

Guess what I don't have to say, though? I don't have to say that Gideon is in the hospital right now. I don't have to say that his condition is worsening. I don't have to say that his view of life isn't as crystalline beautiful as it was before this all began... I CAN say that we are beating this cancer. I can say that we have been blessed beyond measure by supportive family and friends.

There are always reasons to praise God for this life Gideon has: cancer or no cancer. Always, always.

A Beautiful Morning!

2011-05-22T00:12:00.006-04:00

I feel indebted to CureSearch for what I experienced yesterday. You know that feeling when the soul gospel sings a chorus of, "This is where you should be! This is what your life is for..."? I had that. It wasn't a delicate whisper of a song, it was a thunderous voice that can hold notes all while running up and down the musical scale with an I-don't-need-a-microphone power. I am confident our Gideon will beat the cancer (as seen in this video, the boy did NOT want to step away from the microphone. Hmmm... Whose son could he be?! He's "A SURVIVOR!"), no matter the outcome, my life will forever be dedicated to finding a cure for childhood cancer. I am all in...forever, I promise. This event only strengthened my resolve.

I met so many beautiful families with inspiring children battling cancer. Dr. Elliot said it right when she described our little warriors as "Playing as SOON as they feel capable, and smiling easily the instant pain is gone." There are no pity parties. If our babies who have had poisons injected or who are in pain from the cancer itself have a MOMENT of reprieve, they are on that floor pushing cars with gusto! Talk about making moments count. Why do we as adults feel like we have such invaluable lessons to teach our children, when in reality, they are the ones trying to teach us even BIGGER lessons? So many precious children were there, no two with the same journey, but each one with a life-light in their eyes since they are totally and completely enamored with LIFE! With sunny days. With cotton candy. With taking walks with people who love them. You, cancer kids, are the biggest superheroes on our planet. Seeing all of you in one place can only solidify my awe over every single one of you.

Then there were those personal heroes of mine who have lost their baby to this atrocious disease, but were there. They were there and we refuse to forget the impact their little ones had on our world, as well. I don't think I've ever seen so many people moved to tears at the same time as I did when we had our moment of silence, reflection, and prayers for these families. As we let go of our balloons of prayers and hope, there was such a resolute, determined, yet reverent aura surrounding us all.

We WILL beat you, cancer. We won't stop fighting until you are extinct.

CureSearch: THIS WEEKEND!!

2011-05-19T17:52:00.004-04:00

Hello, walkers!

THANK YOU for coming to this Saturday's walk in honor of all of our little fighters who WILL overcome childhood cancer, including sweet Gideon. Some of you have said you wanted to walk, but have not been able to register yet. It's not too late! This is a VERY kid-friendly walk (strollers and wagons are welcome), and here are the details:

WHERE? Celery Flats Interpretive & Historical Center in Portage, MI.

WHEN? Registration is from 8:30 a.m.-9 a.m. on Saturday, May 21
The opening ceremony (which includes a balloon launch and medals for the survivors....Gideon, included -- bring a camera!) will be at 9:30 a.m.

HOW? The walk is about 3 miles long (but there is a SHORTER walk for those who want to opt out of the longer one).
It will be DONE by 12:30 and the final amount raised will be announced then!

WHERE WILL WE MEET? I will have a BRIGHT orange sign that says "Gideon's GOOD FISHIES" near the registration area. Please meet us there!

WHAT SHOULD I WEAR? If you have a NO SHARK SHIRT, please wear it. If not, please wear a WHITE T-Shirt and Gideon will give you a BUNCH of FISHY stickers to decorate your shirt. Also, since our team raised so much money, we will ALL get the white CureSearch shirts!

PARKING? There will be parking near the main tent, and another parking site about an eighth of a mile away from registration. Please follow the signs :)!

If you have not registered yet (IT'S NOT TOO LATE), please do so by:
GOING TO THIS SITE:CureSearch
- Click "register"
- Click "Southwest Michigan 5/21/11"
- Click "Join a team"
- Select a group "24 For a Cure"
- Bottom of the screen "Gideon's Good Fishies"
- Click blue "JOIN TEAM"

*** Registration is 10 dollars for adults and FREE for kids!
*** You do not need to fundraise, as our team has brought in a total of $3,495.00, PLUS the money Ryan Harrell and Dawn Marciniak raised of $3,224.20, bringing in a total of $6,719.20 towards CureSearch!

We look forward to seeing you all there! Let's walk together to FIND A CURE! Please visit this site to see what CureSearch is all about!

Much love and NO SHARKS,
Amanda Schripsema

Because I said so.

2011-05-17T17:05:00.010-04:00

Mom, I owe you a formal apology: "I'm sorry."

When you forced us girls outside with a gruff, "JUST GO OUTSIDE AND PLAY!" and then shut the door behind us, I thought you were the cruelest, meanest mom in all of Momdom. Where was your colorful apron? Your beautiful lipstick and perfectly placed wispy hair? I was expecting your sing-songy, "Who wants a cooookiieeee?" It was black-holed into nothingness and my daily duties of asking you why you fold shirts in fours, who you were talking to on the phone, whining about Aimee eating the last popsicle or tattling on someone for cutting the tassels off of your throw pillows were not going to happen if I had to go OUTSIDE. I had NO idea why you'd want to miss out on all of that interaction with me...

No...I do have an idea. I got the gist of the idea yesterday. The whole flashback of, "Someday... you'll see!" haunted me.

I have never played the game "OPERATION" on an actual human before. Yesterday offered me that opportunity. Gingerly, oh-so-carefully, I fished out a toy lodged in Gideon's ear (it was placed there in an effort to make him a robot, apparently). There was no red-nosed buzzing for these steady hands. Nope. I also had to deal with the I-WANNA-PLAY-THE-Wiiiii whining from Brody. Ugh. It was too nice outside and I am the most stubborn momma on the planet (poor Brody). Then there was an additional excess of whining, crying, arguing...wow. Was there a full moon last night? When the boys got too close with their light sabers in an epic battle in the kitchen and knocked over my coveted vine-ripened tomatoes, I did the mom growl, "JUST GO OUTSIDE TO PLAY!" As I mopped up the bright red guts, I thought about the way they would've tasted so delightful with basil and olive oil. Sigh.

I would like to know who invented COLORED bubbles? Who was it? And who was the sucker who bought them? Oh, yeah. Me. I'll let the pictures speak for themselves instead of my whining. (Those are orange bubble speckles all over his face, by the way.)

LOOK AT ME! LOOK AT ME! I'm whining about the regular mom stuff and not anything related to cancer. I don't think I have been such a Sourpatch Kid in a LONG while. This entire blog read like Charlie Brown's teacher...only with less inflection and more whiny tones. Sorry.

Lucky for my children, I got a lot of sleep last night and the alarm clock cranked out MIKA as I opened my peepers to the world this morning. How can the day be ushered in with MIKA without a smile? It can't.

So today we will stay away from colored bubbles and milk cartons that have camouflaged twist-on lids (I saved you from the milk explosion in our faces story. You're welcome.) For now, I am so grateful that Gideon's side effects were not long lasting. One of his cancer friends had a horrendous side effect to her Vincristine that sent her to the hospital for an entire month (she is home and doing great now). That makes my rant and venting so very annoying to me, but I am putting it out there anyway. We have normal wah-wah-wah days like the rest of everyone else.

Speaking of the cancer stuff: we go in for counts today. I'm praying for better numbers and that when Dr. Lobel looks in Gideon's ear I'll hear something to boost my ego like, "Wow! There is absolutely NO irritation in here... Are you sure something was ever stuck?!" And then he'll hand me a scalpel and I'll try out my hand at being a surgeon... Kidding. I heard I need to go to school for that.

Oh. And Gideon just brought in a fresh bouquet of forget-me-nots. I feel better. I'm gonna make it a beautiful morning now.

Porcupine Toes

2011-05-09T21:47:00.006-04:00

Yesterday marked the end of this steroid rotation. With that comes the inevitable next day of withdrawal-type behavior. Today was that "next day." Last night provided an added side effect that we haven't seen for awhile from the Vincristine chemo. Gideon came in from outside and said that a "porcupine needle" got through his shoe and was poking every toe at once. He was walking funny and since he was so tired (napless days, these), he just collapsed on the floor crying "OW! Ow! Ow!" while holding his toes in his little fists until they looked like bright red cherries. I put as many bandaids on his toes as I could, and usually that gets his mind off of pain. It didn't work this time. He OWIED through the night and sometime around 2:45 a.m. he said the porcupine was getting his leg, too. This is a nervous system side effect to the drug.

Newer cancer families: MAKE CLOTH ICE PACKS! Tom's mom made them from the material given to us by the Jenkins family, and they came to the rescue once again last night. I cannot tell you how much I treasure those rice and popcorn frozen compresses. I wrapped Gideon's feet in those after massaging them throughout the "OWs" that peppered the silence of our dark room last night. He finally drifted to sleep, though...thanks to those ICE PACKS.

In my giddiness of tired moments, I sang this song to Gideon. I think I got the words right from how I sang it to him again and again and again to try to make the prickly feeling a little more sing-songy and less scary. I know that when I (still, I admit) wake up in any kind of discomfort, I get panicky and wonder where I am and what's wrong since I am drifting between dreaming and reality. The song served as our bridge last night between those two states of consciousness. Everytime I sang it, I added or changed a verse. I think it's still a work in progress. It is sung to Colbie Caillat's "Bubbly," only the name is now "Prickly." Fitting? Yes.

"Prickly"
(guitar playing... voice: "Will you count my band-aids?")
I've been awake for awhile now
you've got me sayin' things like "OW" now
cause every time I try to step or pace
I get the tingles in a silly place

It starts in my toes
and I crinkle my nose
wherever it goes, I always know
that you make me wince
please go away right now
just take your leave
I want you to go

The rain is fallin' on my window pane
and we are ice packing those tooties now
under covers feelin' prickly pins
you give me cringes that I abhor

It starts in my toes
make me crinkle my nose
wherever it goes, I always know
that you make me wince
please go away right now
just take your leave
I want you to go

What am I gonna say
when you make me feel this way
I just.......owwwwwwwwwwwww

It starts in my toes
makes me crinkle my nose
wherever it goes, I always know
that you make me wince
please go away right now
just take your leave
I want you to go

I've been asleep for a while now
You tucked me in just like a child now
Cause every time you hold me in your arms
I'm comfortable enough to feel your warmth

It starts in my soul
And I lose all control
When you kiss my toes
The owies go
Cause you make me smile
Mommy, just take your time now
Holdin' me tight

Bye, PRICKLY! Bye, OWIES! Bye PAIN, you go!
Bye PRICKLY! Bye OWIES! Bye PAIN, you go!

I am just thankful this one didn't last too long into the morning. He is walking better now, and it drove me to Little Chicks today for a new pair of shoes for our little guy. He needed them, and I am just thankful this uncomfortable sensation subsided. So, let's encase those precious toes in some killer kicks! :)

YAY! (over and over and over again)

2011-05-09T18:17:00.015-04:00

WOOT! WOOT! RYAN AND DAWN! You DID it. You ran your marathon this weekend for the most amazing cause on the planet: curing childhood cancer. You pushed your body to the absolute limit and powered through 26.2 miles of hills, change in terrain, toenails falling off (you are so hardcore, Dawn!) and physical and mental depletion all in TEAM GIDEON love. The total amount of money these two donated to Curesearch was $3159.20 in our Gideon's honor. Being in that atmosphere just filled me up with such joy. The air was heavy with extreme accomplishment and determination at that finish line. The runners' attitudes were sheathed in grace, humility, humor and defiance towards the body's undeniable limits. Each runner reminded me of so many children and their own battles with cancer. Seeing that blue pavilion in the distance, hearing the cheering crowd, and picturing that finish line of curing Gideon's cancer gets us through so many hurdles and walls of negativity. The gorgeous parallel of a marathon and battling cancer kept making me weepy before I could even pinpoint what it was that was getting me emotional. I got to see people cross the finish! They won! They triumphed. I can't wait until we get there, as well! Team Gideon will keep on keeping on!

Besides Ryan and Dawn crossing the finish, my favorite runner was this man in the picture below. He is 84 years old and finished a half marathon. Seeing this in person and witnessing these volunteers helping him cross in those last few feet when his body was finished and ready to collapse was a firework-in-the-soul experience. Look at him. Wow.

Now, it is your turn, friends! We would love to have as many WALKERS as possible in Gideon's honor at the CureSearch Walk on May 21 at 8 a.m. at the Celery Flats. We have already raised $2,500 (this amount is separate from Ryan and Dawn's amount) for the team, so if you CHOOSE to walk, you do not necessarily have to fundraise. Just pay the ten dollars to register (and kids are free if you sign them up). To register for the walk, please click here. Under "Welcome to the Team Page of Gideon's Good Fishies," click "JOIN OUR TEAM" in blue. Your page will be set-up, and you MAY begin to fundraise, but you don't have to. Like I said, we just want people to walk with us in solidarity to STOP CHILDHOOD CANCER! Please join us!

IN OTHER HAPPY NEWS...
Ruth Kaiser of Spontaneous Smiley sent this song to me as a birthday present. It is the best gift I have gotten, really. The giggles in the background are Brody and Gideon's belly laughs. Their laughter is the most glorious sound to ever reverberate in my eardrums, honest. Here it is...

For my early elementary teaching best buds, you can download the song to use in your class here. Be a part of the GAGGLE of giggles! :)

Gideon is almost done with steroids this week, so I will say that is HAPPY NEWS as well. Woah. Lots of puke, lots of food for him, and lots of personality conflicts (such a sweet way for me to put it)... You know the steroid drill around these parts, and we are always happy to get through that. As I said before, he is a creative thinker and is more apt to share those thoughts while on steroids (think of that Micro-Minis commercial voiceover or the disclaimer voice at the end of commercials...that's Gideon right now). My favorite Mother's Day present from him was this "Flower Soup for Princesses." If I drink it from a LONG shape (like a rectangle), my hair will grow longer and shinier. Also, it will give me more magic, which may or may not cause me to sprout sparkly fairy wings. Before I dipped my spoon in, Gideon said, "MAKE SURE TO PRETEND TO DRINK IT, Momma. It is 'poisant!'" Poison has a "t" at the end in Gideon's lexicon. It gives it that oomph of finality, I think.
SooOOoOOoo, here it is: FLOWER PRINCESS SOUP! Bon Appetit!

(Make sure to gargle with fallen stardust after ingesting for the full effect.)

Walk this Way (please)

2011-05-04T22:09:00.007-04:00

I would like someone to tell me how I can play ANGRY BIRDS in every waiting moment in my life (doctors office, lines, car trips...when I'm not driving....promise), and Gideon somehow beats every level and I only let him play two minutes at a time? He is AMAZING. Yesterday he said to me, "Mommy, the Big Bad Wolf couldn't get the job done with those pigs, so he got the ANGRY BIRDS to help him out." May I just mommy-gush here and say how IMPRESSED I am with his multi-genre connection? The pigs are in buildings and the ANGRY BIRDS get sling-shotted into those houses to squash those egg-greedy-critters. I could just squash Gideon, he's so adorable! Sometimes I do sling-shot myself into him, but I'm not so angry. I just want to inhale him and the treasured way he pronounces the letter "r" in every "r" -ridden word.

Gideon had Clinic today (and received Vincristine), and his ANC has dropped quite a bit since his last appointment. He was in the upper 2,000s the last time we checked, and today he was at 969. We will go in for more count checks soon to see if he is still plummeting, staying the same, or getting better. For those of you who forgot, ANC stands for Absolute Neutrophil Count and it basically measures the body's ability to fight infection. Infection within a body with cancer is much more serious than with us, the cancer-free ones. We will just be more careful again and watch our boy more closely.

While we watch our boy, you can walk with our boy to show your support in ending childhood cancer (was that a transitional stretch?). I have to ask you to WALK WITH US at the CELERY FLATS on May 21 at 8 a.m. to raise money for CureSearch. I have formed a group called "Team Good Fishies." Simply click here, scroll down to the bottom of the screen that says "Gideon's Good Fishies" and click "JOIN TEAM" under action if you would like to WALK that day. To walk, you will pay an entrance fee of 10 dollars. You may then fundraise however you see fit, but people will be able to donate on your behalf via the website CureSearch link. Even if you pay the ten dollars and are not able to find donations, we would LOVE for you to represent Gideon and a cure by being there. If there is anyone out there who would like to kind of HEAD this endeavor, please email me (aschrips@gmail.com). As of right now, we have raised $2,000 for the WALK (we haven't loaded into the computer program keeping track yet), while Ryan and Dawn who are running the marathon this weekend have raised over 3,000 dollars! This is all amazing, so if we could get a group of us out there, that would be fabulous! Of course, the more we raise the closer we will be to finding a cure for Childhood Cancer.

Tonight we went to our Clinic's fundraiser at Noodles and Co. I have to say how empowering it is to talk to other moms in the midst of this battle. There is an unspoken camaraderie and understanding there. I spoke to one mom who brought up my hiding-under-the-bed post. It feels so good to be real, laugh at ourselves, and to know we are not alone and we are not crazy. Just our steroid children are mini-crazies. (Gideon took his first steroid of this round tonight. Heeeeeeeeeeeeeere we go!) I really think there is such power in numbers by not feeling isolated within this disease. I've heard about other cities who have CHEMO CIRCUSES and CHEMO CIRCUS events all year-round to keep families who have children with cancer connected. Uh-oh...my wheels are turning...

Mmmmm... I just noticed that my hair still smells like grilled cheese. I made that for lunch and it's ten o'clock at night. I'm too tired to shower. It'll have to wait. Let's hope I have some deliciously greasy dreams of a diner somewhere. Nigh-night.

P.S. A HUMUNGOUS THANK YOU TO MISSY WISEHEART FOR SETTING UP A BLOOD DRIVE IN FARMINGTON HILLS FOR GIDEON! IT IS HAPPENING THIS FRIDAY. YOU'RE THE BEST, MISSY!

Gideon Blood Drives

2011-04-20T09:04:00.001-04:00

East-side Michigan family and friends, there are still spots available to donate on May 6! Please click here to schedule your appointment! There's room for more in this miracle.

Life and making the MOST of it...

2011-04-18T23:49:00.007-04:00

I can say this now with all absolute certainty: This life on earth is fleeting. This life constantly has reminders of how we are so very mortal and anything can happen at any moment. It can be scary to realize how we are not in control. I have found that it is actually more freeing than anything else once I wrap my soul around that truth. I'm. Not. In. Control. Phew.

Handing it over.

THANK YOU to all of you who emailed about my "funk" last Monday. Thank you for the love you sent my way. I had my own health scare on that day, and was referred for further testing to "Bronson Center for Women." My appointment at the hospital was set for Friday, and while I told myself to wait to worry, to pray and to trust, it was one looooooong week of what-ifs popping in my head. For the handful of you who were in on the situation, THANK YOU for the prayers. They were heard and I am cancer-free. Thank you, God. Now I can jump more fervently into the battle at hand: Gideon's shark slaying endeavors (side-note: Today Gideon wanted me to read about the planets. We got to the page about constellations and he asked about the astronomical signs. I explained, and then he asked what was his "sign". I told him "Pisces" and as he looked at the picture he nodded and said, "Oh. I am GOOD FISHIES! I GET IT!" I love things like that... Ask my high school BFFs... Remember? "That's SO SYMBOLIC!" : a phrase I overused, I admit).

With this recent event comes the inevitable evaluation of life and how it is going, and what can further be done. This scare made me more zealous towards my passion for blood donations and the fight against childhood cancer. While I am still working on my thank you since the words keep escaping me and I am still in awe of the fact that, get this, HUNDREDS of pints of blood have been donated in Gideon's honor in the last two months, I will give you a little teaser on one of the miracles (groups of people who donate blood, remember?). Please click here to see what I'm talking about. Amazing.

In the same amazing vein is the fact that the fight against CHILDHOOD CANCER is at everyone's door right now. As you know, Ryan Harrell and Dawn Marciniak are running a Marathon in Gideon's honor. The money raised will go directly to CureSearch. I was contacted by CureSearch and the Jeff Gordon Foundation has just made it easier for all of you non-Marathoners to get in on the CURE! Gideon will be the "poster child" for the GROUP "24 for a Cure." On May 21, at 8 a.m. at the Celery Flats in Portage, all who register may WALK FOR A CURE to childhood cancer. I have formed a group called "Team Good Fishies." Simply click here, scroll down to the bottom of the screen that says "Gideon's Good Fishies" and click "JOIN TEAM" under action if you would like to WALK that day. To walk, you will pay an entrance fee of 10 dollars. You may then fundraise however you see fit, but people will be able to donate on your behalf via the website CureSearch links up to you. Even if you pay the ten dollars and are not able to find donations, we would LOVE for you to represent Gideon and a cure by being there. If you would rather donate directly since you aren't able to participate in the walk, you can do so by clicking "DONATE" under our group name. If you want your BUSINESS to start a NEW team under "24 for a Cure", please do so! The more, the better! CHILDREN are also allowed to register and raise money. Again, the more people there, the more awareness, the more money to a find the cure for childhood cancer. Please consider this, all of you beautiful supporters out there! Don't let monetary goals intimidate you, just do your best since every dollar counts and your presence will be a GIFT that day.

Speaking of beautiful supporters, the Long/Crago Racing Teams are well on their way to raising money in Gideon's honor to go towards CURESEARCH. They have been making a lot of money by selling bracelets that say, "Racing for Gideon!" If you would like yours, please let me know. Also, look at Jan Long's racing hood:

Yes, I am feeling something amazing ahead! Please join us all in this fight against Childhood Cancer. Join our team, create your own, anything! We would adore to have all of you: friends, and soon-to-be friends.

Much love and thanks!
Amanda (I've never signed-off before, but this kind of ended up feeling like a letter)

Through it all

2011-04-12T10:02:00.003-04:00

I am still working on my humongous THANK YOU to all of those who sponsored a blood drive in Gideon's honor and those who donated. I need to have a lot of time to really get the words right and to paint a picture of the TRUE MIRACLE that has occurred again and again last week. I am still baffled. I am still amazed. And the good fishies keep swimming to our Gideon!

And now, a plea to my east-side friends: Missy Wiseheart, a friend from high school, is organizing a blood drive in Gideon's honor, too. The drive will be held on May 6 from 12 noon to 6 at the Red Cross Donor Center at: 31150 Haggerty Road Farmington Hills, MI 48331. Please come to this blood drive to donate some good fishies! Spread the word! Please click here to schedule an appointment. THANK YOU!

Yesterday was a difficult day. I haven't had a hard day like that in awhile. Instead of asking for pity, I will ask for your "WOW" as I was throwing myself a pity party and things turned around in a musical beat. I got in my car and kept praying over and over and over (and half-hearted, if I am being completely honest), "Please get me out of my funk. Please get me out of my funk." And then, on my "CHEMO CD" that is always in my car, Alicia Key's "Through it All" came on. My boys, amazingly, know every word. They started belting in unison. My favorite part was when they sang, "I-eye, I-eye, I-eye, I-eye-haaaaaaaaaaaa! Gonna LOVE ya, gonna hold ya through it all!" My heart instantly melted. I'm thankful that God can even answer half-hearted prayers. Also, I think the angels in heaven sing like our children. I'm convinced of that.

Big Day...

2011-04-07T22:12:00.006-04:00

Gideon received his Vincristine at the hospital today, and we are starting another round of steroids this week. I'm sure I'll have stories! He is feeling good, and as you can see below, we are prepared for those cravings:

After the hospital, we visited the Portage Free Methodist blood drive in Gideon's honor. It was beautiful! Fish were everywhere, volunteers were everywhere and I was just blown away by how amazing it all turned out. Thank you (especially Joyce and Gail)! I will upload pictures soon.

Gideon and Brody got to have a close-up look at how this donating process works since I gave blood today and the boys watched. They insisted I hold their hand and Gideon told me to "Be still and just breathe." Spoken like a true pro, right? He was so fascinated by the blood bags at the end of the process since this is the familiar side of the blood he's seen hanging from his IV tree while getting transfusions. Whenever he looks around the room at one of these drives, I say, "All of these people will give their good fishies to someone like YOU, Gideon!" And he smiles, nods, and gets it. Once he said, "And it will make so many people better, too!" As sentimental as it is, I cannot walk into a blood drive without instantly tearing up. I'm taken to that place of absolute awe in a hospital room. I recall wondering desperately who the nameless hero in the bag saving my boy was so many times, and I look around at these drives and see the faces. Faces I can name now, but someone else will only see as a plastic bag of blood, but with that same heart of immense gratitude and wonder.

I have received some emails from other families whose child has cancer, must take pills, and the grinding/mixing/preparing every single night and day is becoming tedious and annoying (being very polite to those pills there... I'd like to be harsher). There is also the worry that some needed particles are still stuck in the grinder, and watching even a few sediments of pill dust into the air around me has made me panic and feel like Gideon wasn't getting his full dosages on many an occasion. Don't worry. I asked the doctors about that in one of my obsessive moments and they say they account for some of that dosage not being swallowed (like what if a chunk is still stuck in the applesauce and in the sink? It's okay. They know it happens.)
One of my favorite emails:
"How in the WORLD did you get Gideon to swallow the pills? How? How? How? If I breathe in anymore chemo pill dust, I will grow another arm. Come to think of it, another arm would be useful for this mom."
So, Here it is! I must share with you other families who feel this panic something a veteran momma warrior (Julie Jenkins) shared with me: Practice pill swallowing! Buy those mini-m&ms, and model for your child how you have the m&m on your tongue, drink some water, and WOOSH! Down the throat it goes! No mashing, no chewing, just GULP! I tried this with Gideon awhile back and he spit it out (the minis aren't as much of a choking hazard). Still another failed attempt is when he pretended to swallow, but quickly began to chew (and who can blame him? By swallowing, the chocolate tastebud explosion is nonexistent). I knew he wasn't ready. We continued to practice until the day he did it! Then we made it a HUGE deal (remember the pill maraca and conga line? Yes...We did it, too) when Gideon swallowed his pill for the first time. I am happy to say, Gideon swallowed SEVEN pills in succession tonight. Try it! Julie Jenkins KNOWS her stuff! Pass on the information to other families, too! We love you, Jenkins family!

Tomorrow is the WMU blood drive from 11 a.m. to 5 p.m. at the WMU Parkview Campus in Room C-126. We hope to see you there!

THIS WEEK...

2011-04-03T20:05:00.000-04:00

I love the names for animal groupings...

A "journey" of giraffes, a "crash" of rhinoceroses, a "dazzle" of zebra, a "drift" of warthogs, a "raft" of hippos... It goes on and on and on. I guess I feel like the terminology of each group paints a more detailed description of the animal in a singular sense.

Here's a new one for you: a large group of humans who donate blood is called a "miracle."

I hope you can be a part of this "miracle" by donating blood this week in Gideon's honor.

Thursday, April 7 at Portage Free Methodist Church
Please click here to schedule your appointment.

Friday, April 8 at WMU Parkview Campus Room C-126
Please click here to schedule your appointment.

Gideon will be getting Vincristine chemo this week at the clinic. Depending on how he is feeling, we will try to visit both of the blood drives! THANK YOU for signing up, showing up, and giving life! You are all a part of saving lives, and that is a beautiful group to be a part of. I'd like to see a "miracle" of donors lined up at the doors...

---------------------
I must add something to this blog. Something EPIC has transpired tonight. Gideon has FINALLY SUCCESSFULLY SWALLOWED HIS CHEMO PILLS WHOLE!!!!!!! For you pediatric cancer families, you know what a monumental thing this truly is. NO MORE GRINDING UP PILLS EVERY SINGLE DAY!!! NO MORE MIXING IN PILL DUST WITH SOMETHING TO MASK THE TASTE! WOOOOOOHOOOOOO! April 3 has now been deemed "PILL SWALLOWING APPRECIATION DAY!" So, when you swallow your nightly meds, shake that pill bottle like a maraca and sashay it around your house in a conga line... It's THAT big of a deal. I promise.
--------------------

Not so Tangled as it is Unwound.

2011-04-01T23:07:00.000-04:00

Yet again, I have completely waited far too long to post. Now there is so much more to say...

I went fish shopping for Gideon's birthday at Petco. One of the sales associates, Kyle, helped me out. I found another amazing human during this shopping excursion. I asked him to help me find a bowl fish that looks most like Nemo for my son. I then told him how special this fish is to my little one, and of course the story of the good fishies fighting the sharks came out. He insisted that I get the real deal: clownfish. He is a fish collector/expert and had an extra tank, protein skimmer, live rock and everything we would need to get started. Ummmm... How could I not do this? The tank is still get balanced and ready in Gideon's room. I do not want to risk harming or shocking sweet Nemo in any way. How amazing is this? I'm realizing how tiny I am in the scheme of things in creating this mini-ocean. It's very difficult. And then I look at the real ocean with its balanced pH, salinity, all of it, and I am just amazed by how huge God really is in creating the amazing world I get to see and experience without trying to "balance" it myself. I'm loving the fact that there are more incredible people in the balance, like Kyle, who I get to run into as well! Thank you, Kyle! (And, baby sister Annie: I know you have a boyfriend, but I really think you should marry Kyle. That's all.)

Gideon had a birthday party with a handful of church-school and neighbor friends. It was a MAGIC SHOW and my boy was in absolute awe of it all. Thank you, Alan Kazam! Gideon loved every moment. Here's a little taste of his joy. I had so much fun watching his animated face and giggle of amazement after every magic trick.
Click here to see one trick (don't mind the adult cackling).

Brody and I were able to see "Tangled" in 3D this past summer. Gideon was not able to go due to his low numbers, but Brody has said over and over and over again ever since that "Gideon would LOVE Tangled!" So, we rented it. Of course, if my boys are game for a princess flick, I'm jumping on that before the words evaporate into the air molecules... I feel princess deprived sometimes.

At the same time, Brody has been very playful with my hair: petting it, flipping it, etc. I didn't connect this with the movie at all... I really think my brain is way slower to pick up connections these days. Really. Anyway, I offered Brody my brush the next time he started batting around hair strands. To my surprise, he accepted. It was five whole minutes of bliss. I didn't think much about that again until later. For those of you who don't know, "Tangled" is the story of Rapunzel. Rapunzel has magical hair that can heal and can also make old people young again simply by wrapping it around the person while singing the magical song (which is also very beautiful).

After dinner this evening, I was sitting with the boys on my lap and we were getting ready to dive into a book. Brody started playing with my hair again. He started wrapping it around Gideon's hand, and Gideon stayed still and watched as he wrapped it around and around and around. I wanted to know what he was doing, since it was kind of tugging at my scalp. Was he trying to snarl it all up? I just wanted to read the book and get on with the nigh-night routine. Thankfully, I hid my C'MON! voice and just asked him what he was up to...
"Sing, mom!"
"What, Brody?"
"Sing the healing song!"
(I paused....) "What healing song?" (I told you I'm slow these days.)
"You know...the Tangled one. 'Flower, Gleam and Glow!'"
That's when it all clicked. He wrapped my "golden hair" around Gideon and wanted me to sing the healing song. I almost didn't want to ask. "Why do you want me to do that, Brody?"
"Because it will get rid of Gideon's cancer and he won't need chemo anymore."
.....................
I love him.
....................

I'll just leave the "Healing Song" for you to hear/watch instead of trying to depict how he unwound this heart of mine into a thin, yellow strand.

Heroes! Heroes EVERYWHERE!

2011-03-28T13:28:00.000-04:00

Whew. What a whirlwind. We are still trying to calm our nerves from the most INTENSE hockey game we have ever witnessed between University of Denver and our beloved Western Michigan Broncos during the NCAA tournament in Green Bay. In double-overtime the University of Denver snuck one in, but we cannot be more proud of the season those Broncos have had. We are still so grateful for the way the team has embraced our family this year, and as the media got ahold of the story, it is wonderful to see the world smile in their direction, as well. We will savor every game next season, too. We promise. LOVE YOU, BOYS! Be proud of what you have accomplished. There is no other team with hearts as giving and selfless as yours. Of that I am certain.

More happened in the last three days than in three months, I think. Mattawan High School held a blood drive for Michigan Blood (where Gideon's transfusion blood comes from) on Friday, and we were able to visit the drive itself. The gym was full of volunteers and donors! Full. They were playing NEMO in the waiting area, there were FISH CUPCAKES in Gideon's honor, goldfish cracker snacks, and even NEMO coloring pages for students to color for my boys. THANK YOU, all of the volunteers and donors. Every person has saved someone's life. We are passionate about this cause!

We received more BLOOD DONATING fishies from the Otsego VFW and Davenport University who also sponsored a drive for our Gideon. Fish are rapidly swimming into our mailbox every single day, and we have not stopped celebrating!

If you missed donating blood at one of the other drives and would still like to do so, there are two more coming soon!
* WARRIOR GIDEON SCHRIPSEMA'S PORTAGE FREE METHODIST CHURCH BLOOD DRIVE
- Thursday, April 7 from 1 p.m. - 6:45 p.m.
-Click HERE to schedule your appointment. Sponsor code is PFMC.

* WARRIOR GIDEON SCHRIPSEMA'S WMU BLOOD DRIVE
- Friday, April 8 from 11:00a.m. - 5:00p.m. in WMU PARKVIEW CAMPUS ROOM C-126
Please click here for more information!

Before we left for Green Bay, Gideon and I stopped by a DANCE MARATHON at Forest Hills Northern High School. I have a past with Dance Marathon as I was the Special Promotions Chair the first year it was held at Hope College, and then I was the Assistant Director the second year. All of the money raised goes to the Helen DeVos Children's Hospital. Having had experience as a "Dream Team" member and now as a mommy of a child with cancer, I was asked to speak. Unfortunately, I think the emotions of the past few days overwhelmed me and I started to sob onstage. I was holding Gideon, and the sweet honey kept kissing away my tears. The part that got me (even though I have told this story without crying a few hundred times) was when I said that never had I imagined I would see "this side" while I was involved with Dance Marathon in college. I never really processed that until then... It seemed so unbelievable that this could happen to MY family. Yet, here we are and the way people have embraced us, helped us, and the MIRACULOUS way Gideon is responding to his treatment has been the most heart-awakening experience of my life. Forest Hills Northern reached their goal of $40,000! Wow. Congratulations, students! Also, THANK YOU for Gideon's birthday cake and song. I think he would have stayed the entire 24 hours had I let him!

Finally, it was Gideon's 4th birthday on Sunday. He loved spending time in the hotel and then Gideon got to be the "King of the Day" as we travelled home from Green Bay. He wanted to see where the "G's" play (Green Bay Packers) which we did, and then he wanted to "Eat lunch in a Skyscraper" which we did in Milwaukee. We will celebrate his birthday tomorrow, and the boy is ecstatic about it.

I am ecstatic that Gideon's last scary bug that threatened to keep us home this weekend went away. We had no hospital visit drama at all! He only has a seal-like cough left, and even that is leaving him... Could all of this positivity add vitamin C to his cells to battle all of the blah? I think so. That, and the fact that Gideon has an army of HEROES and angels-on-earth walking with him through this battle.

NCAA and Birthday Wishes...

2011-03-21T14:59:00.000-04:00

This coming weekend the Broncos will play in the NCAA tournament. Also this weekend, Gideon turns four! There is so much wishing and hoping going on in our house. I have complete faith that not only are the Western Broncos capable of defeating Denver on Saturday, but I also feel like they are going to be the Cinderella story that will swoon the nation. Heaven knows how they have swooned us and given us so much love throughout this hockey season. There is not one team in all of collegiate hockey with a heart as loving and as giving as that of the Western Broncos. To thank them for all they have done for us, I put this together:

Thank you, guys! We will forever hold your kindnesses in our hearts. Our family has not missed one game this year. If WMU played away, we watched it online. If Gideon's numbers were down or he was sick, Brody and Tom would go. We wouldn't miss this Green Bay opportunity for the world!

So, we are wishing for some wins, and Gideon is wishing for a pet fish for his birthday. Tom is not a fan of this idea. I realize they die, but Meijer is open 24 hours! And, even if Bubbles (fictitious name...I'm not sure what Gideon will name him) doesn't make it, I plan on taking the easiest way out and buying another fish in the dead of the night. I'll say something like, "How WEIRD! Bubbles is BLUE now!" Ha. Really though, it's a fish in a bowl and the boy is GOOD FISH CRAZY these days. Don't tell, but I'm buying the fish.

Here's to the NCAA CHAMPIONS, WMU BRONCOS and to PET FISH ON BIRTHDAYS!

I Just Wanna Celebrate...

2011-03-18T20:20:00.000-04:00

...TWO THINGS:
1. The blood drive yesterday was nothing short of miraculous. Seventy five people came through those doors ready to donate. THANK YOU, everyone! I cannot wait to post all of my pictures. Until then, I must post at least one. Bob, one of the donors, really opened my eyes. This blood drive marked his one hundred fifty second time he donated blood. He has donated 19 gallons of blood in all. Why is he so devoted to this? He lost his own little girl, Joanne, to leukemia when she was four years old in 1955. I am amazed by how far we have come in treating this disease, and I look forward to the day when this disease is archaic and obsolete. Until then, it is people like Bob who really stoke the fire in my soul to keep moving forward in donating blood, time, and money on behalf of childhood cancer. Those moms and dads out there who have lost a child, but CONTINUE to remain in the trenches of the war on pediatric cancer have taken the place of superstars and famous personalities in the media for me. They live with a constant sense of loss, yet they keep fighting. Since they wage forward in the battle, they are continually reminded of that grief of loss, but they won't give up. Thank you, parent warriors out there (like Bob). I am in awe of you all! Even when Gideon beats this disease, I promise to remain alongside you!

(Auntie Marianne, Gideon, Grandma and Bob)

2. Right at this moment, BRODY IS RIDING THE ZAMBONI AT THE JOE LOUIS ARENA!!!! His good deed came back and double-blessed him. I am teary just in typing this. Our friends at Lawson contacted Red Wings personnel, and apparently many of YOU, the blog-readers, emailed them as well. So, I was called today by a Red Wings management person and was asked if Brody would like to ride the Zamboni at the play-offs! THANK YOU, everyone, for loving on our boy. He will never forget this moment and as he grows older and becomes more and more obsessed with hockey, he will own this story in his heart.

Yes, I wanted to celebrate those two monumental things today. Gideon is my steroid monster (which is why we aren't at the Joe Louis Arena, too), but he's still very easy to love. I called him "Honey Bunny" and the temper flare from that was enough to chase the Easter Bunny away for good. In fact, I'm pretty sure our garden will be bunny-free since his screams echoed around the block, at least. Still, it was kind of cute the way I had to assure him that yes, I realize he is a human being. Also, he demanded that I play "We Belong" by Pat Benatar over and over and over again tonight. He wanted it as his ONLY song for his lullaby. I am thankful that modern technology invented a "repeat" button for just such demands. In other 'roid news, I have now purchased my third bucket of grilled chicken (which I must still skin before he'll sink his teeth into it. And, Gideon says I am "THE SLOWEST SKIN PEELER IN THE WOWLD!" Yes, that's "wowld" and not "world.") If I look at all of these things from the outside and process how silly they are, it makes life MUCH easier. I have also learned that laughing during one of his tantrums is not a good idea, either. I started laughing, and then Gideon, who always laughs when I laugh, started laughing through the screams so that it was an insane concoction of rage-giggles. Never have I observed that. I think the giggles fed the anger, though. So, I have since learned to hide my laughter. So you all know: Gideon is not any kind of furry creature. Please recognize that.

Still, in all of this madness, Gideon is a deep thinker when he's on those meds. I think it's because he can't slow down the wheels in his mind. During the blood drive, he asked to go upstairs of Hope Reformed's sanctuary with me. As we sat in there, we listened to the silence and stared at the sun spilling through the stained glass. It was a very pretty peace. Then, out of the blue, Gideon asked me, "Mommy, why are there bad people? Why is there a devil? Why do bad things happen to people not naughty?" His brow was furrowed in worry and almost anger. Wow. I was not expecting that. To see those pure blue eyes and the stained glass framing his fuzzy head was too much for me... Plus the fact that there were over fifteen people in the "waiting area" to give blood in this precious boy's honor. I wondered if my heart could handle it. This was a time when I had to ask God to take over the words while I simply moved my mouth. We had such an in-depth conversation about that, in that peace-filled room that allowed the sun to light up speckles of dust like miniature angels flying around us. By the end, he had more knowledge and understanding in those eyes than worry and anger. He said to me, "God always wins and beats the bad. Even if I don't see it, I will see it someday." Yes, Gideon. Yes, yes, yes.

BLOOD DRIVE(S) INFORMATION

2011-03-15T18:09:00.000-04:00

THANK you for the willingness to be a hero in donating blood. For many of you, it will be the first time. I remember the first time I gave blood at a high school drive, and the feeling of goodwill saturated my heart. I remember staring at that bag of blood and wondering whose veins it would fill: someone who suffered blood loss in a crash? Someone who had a blood disorder? I also remember that I never pictured the recipient as a three-year-old. I always envisioned an adult in the ER. Now the picture I put with the act is someone completely different, someone so pure and loving and grateful for that blood. Someone's baby will benefit from what you are doing. Someone's life WILL be saved. This is all because of the time you took out of your day to anonymously spread life to someone you don't even know. Maybe you'll feel lightheaded afterwards, but the warmth that will wrap your heart in loving the world will trump that. I promise. So... THANK YOU.

* WARRIOR GIDEON SCHRIPSEMA'S HOPE REFORMED CHURCH BLOOD DRIVE
- Thursday, March 17
- Click here to schedule your appointment. SPONSOR code is HRC.
- PLEASE NOTE: Making an appointment will help to make things run smoother and more efficiently. Also, there will not be as long of a wait for you.
- There will be "fish" already there for you to decorate for Gideon

* WARRIOR GIDEON SCHRIPSEMA'S PORTAGE FREE METHODIST CHURCH BLOOD DRIVE
- Thursday, April 7 from 1 p.m. - 6:45 p.m.
Click here to schedule your appointment. The sponsor code is PFMC.
- There will be "fish" there for you to send to Gideon, as well :)!

I'll never forget after Gideon received one transfusion, he said, "Ahhhh... THAT feels better!" I can't imagine what it would feel like for the body to be so very thirsty for this life-sustaining fluid. Please know the difference you are making, you blood donating HERO. We love you.

Speaking of love, Gideon received his spinal chemo and Vincristine this morning. We are praying he stays in good health as his ANC level has dropped quite a bit. Tom is sick, so I am sanitizing all I can and Tom is trying to stay away from Gideon as much as he can. Please pray for Tom to heal completely, for these ANC levels to go back up, for the steroids to be nice (please), and for the bugs to die. Was that brutal? It's true, though. I want those bugs GONE.
----------------------------------------------
True story: I sing this Van Morrison song to Gideon when he has to get blood. I changed the words, though. Please, blood donors, sing along and sing it to YOU! THE HERO!

I can hear his heartbeat from a thousand miles
Yeah, the heavens open every time he smiles
And when I come to him that's where I belong
Yeah I'm running to him like a river's song

Chorus:
She gives you blood, blood, blood, blood, saving BLOOD!
He gives you blood, blood, blood, blood, saving BLOOD!

He's got a fine pint of blood, when Gideon's feeling low down
And when it comes to him when the numbers goes down
Take away our trouble, take away our grief
Take away our heartache, in the night like a thief

Chorus

Yeah, I need him in the daytime
Yeah, I need her in the night
Yeah, I want to throw my arms around him
Kiss him, hug her, kiss him, hug her tight!

And he's sick and feels so far away
Donor gives him some sweet blood, brighten up our day!
Yes, it makes him righteous! Yes, it makes him whole!
Yes, it makes him mellow down into his soul!

Chorus

Bringing it to the Joe!

2011-03-14T00:14:00.000-04:00

Gideon's fever has ceased. His demeanor is back to normal, and he is eating as if he is on steroids already (yikes). His little eyes are sparkling again, and I could just stare at that bling forever. Thank you for holding him in your thoughts and prayers.

My heart leapt out of my body and mingled with heaven tonight (and broke at the same time), all because of Brody. Again. I'm still trying to grasp the five-year-old love he kicks out with more intensity than a sandblaster of hearts. It has been his dream to ride a Zamboni since he picked up a hockey obsession (around two years old). In fact, a sweet little story is that every night before he goes to bed, he asks for a "dream." Tom or I then have to tell him a story in which he is the protagonist. Right before we reach the climax, we say, "Keep dreaming..." and the boy refuses to open his eyes because he cannot wait to finish the story cooking in his head. On many occasions, he asks to have a "Zamboni dream" and he wheels around a turbo-boosted Zamboni as a hockey superhero (at least in my version). There is the backstory. He has never had the opportunity to do it (ride a Zamboni...plenty of opportunities to dream, though), and then tonight happened: his chance.

Tonight was the determining game to find out who would be advancing to the CCHA Semifinals: Western Michigan or Ferris State. As soon as Brody walked in, he was asked if he would like to ride the Zamboni. Those old-fashioned cartoons with the zigzags and the fireworks popping out of an expanding heart is the only way to describe his elation.

As we made our way to where the Zambonis are parked, Gideon said, "I WISH I COULD RIDE ON ONE!!!" and his little lip trembled. I explained that when he was a little older, he could do it. Then, Brody stepped in and set my heartcoaster in motion. He said, "He can go in my place." I tried to stop him. I knew how much this meant to Brody. I wanted to cry for him. I wanted to shake him and yell, "NO! THAT'S NOT FAIR!" Instead, he began pealing off his jersey to give to Gideon to wear on the ride. No. This was not going to happen. I was in love with his actions and at the same time heartbroken for my oldest. This was the analogy I've been using to describe Brody since cancer wreaked havoc on our family coming true: "He gladly takes the backseat." Only this time he wasn't even in the car, or Zamboni, in this case. Tom was so proud of Brody, and I can't blame him. Much to my dismay and equal parts jubilation, Brody insisted he go through with the offer. So, I was ecstatic for Gideon's chance to ride, but so crushed for my big guy. So crushed.

Gideon riding the Zamboni!

He couldn't stop smiling!

Brody watching from the sidelines... Does this just break my heart because I'm the mom? :(

Thankfully, The BRONCOS WON in overtime! It was an amazing game, and Brody never once brought up his missed Zamboni opportunity. I thought for sure once he processed it, he would cry or something. But he didn't. He was just thrilled with the win. Western's next stop is the Joe Louis Arena!

UPDATE: MANY OF YOU BLOGGERS EMAILED AND CALLED THE JOE LOUIS ARENA...THANK YOU FOR YOUR HUMONGOUS HEART TOWARDS OUR OLDEST. RED WINGS PERSONNEL CALLED US AND OFFERED BRODY A RIDE ON THE ZAMBONI AT THE JOE! HE RODE LAST NIGHT (MARCH 18) AS THE BRONCOS DEFEATED TOP-SEED MICHIGAN IN THE CCHA SEMI-FINALS! PICTURES WILL FOLLOW, BUT UNTIL THEN: THANK YOU! THANK YOU! THANK YOU! WOW.

Today's Update...

2011-03-10T17:27:00.000-05:00

THANK YOU, friends. Thank you to all of you who still reach out and support me (and us) even when I (we) can't give much attention in return these days. I cannot fathom how I managed to scrounge up so many true, true friends who give and give and give and don't expect anything back. I am blessed beyond belief to have so many of you fill me up so often. My heart is bursting with all of your love, I promise.

The knot in my stomach about Gideon's chemo today was a mommy hunch, I think. Gideon woke up at 3:30 this morning vomiting. It wasn't a chemo vomit, it was a sick-sick vomit. Isn't it weird that there are different classes of vomit now? Am I grossing you out? Moving along... He had a fever of 101.2 at that point. I knew we were going in to the hospital this morning anyway, so I felt a lot of relief there. Once he woke up, his fever went down to 100.2 and once we were at the hospital, he was still registering with a low-grade fever. It was decided to hold off on the spinal chemo. Phew. Relief. Weight lifted. Instead, Gideon received antibiotics via IV to battle this bug. The good part: Gideon's numbers were high enough that we didn't need to be checked into the hospital overnight for monitoring. If his fever returns, we will just go back for another IV antibiotic. In the meantime, it has been cuddle and story-reading quiet time. He is still napping!

Please continue to pray that the bug works out of him and the sickness is short-lived. We are slated to return to the hospital for spinal chemo on Tuesday, and THEN the steroids will begin again.

I have to say... One of my favorite moments of the day was when Gideon sang while he slept. He was singing, "Don't worry, baby! Everything will be allllriiiiight!" in a hushed sleep-filled airiness that just wrapped me up. I was thankful for that. It felt like a Holy moment to me. Really. It felt like God was singing to me through my baby's voice. It is true that I sing that to Gideon quite often, but it was the moment that just revived this heart. I'm thankful. I know everything will be allllriiiiiiight.

(P.S. I need to THANK a blog-reading person I just met for sending me this link. I read about Kourage while Gideon was being pumped full of antibiotics and the happy tears were welcomed in that moment. I ordered Kourage. It was an impulse buy I am PROUD of. THANK YOU, Christy!)

Spinal Methotrexate in the morning

2011-03-09T21:23:00.000-05:00

Yes, bright and early we'll be heading to the hospital for a dosage of Spinal Methotrexate. PLEASE let the music therapist be there. Please, please, please! There is something about waking up from anesthesia for my little Gideon. He wants to leap off the bed or wrestle or he's super agitated. I am not looking forward to this. If the music therapist isn't in, I will sing "Somewhere Over the Rainbow" a million times. It's worth it since it protects me from getting head-bashed by my fuzzy-noggined one. Gideon, however, is beyond thrilled with the idea of this medicine. I told him he is getting sleepy medicine tomorrow and he said, "YAY! I need to go to bed QUICK!" I'm thinking he said this to hurry the morning. I just want the night to feel slow...twenty hours of sleep slow. Rest-drenched and deep sleep slow.

Tomorrow also begins steroids.

I put that sentence in its own paragraph.

That one, too.

Let's just disconnect everything since the wiring in my heart is a little kinked and knotted right now. I'm wondering if his body is up for all of this. I can't wrap my mind around the idea of my boy who has been vomiting and hardly wanting to eat or drink a thing can get all of this poison on top of it. I want him to heal, first. Why is that not possible? Oh, yeah. Freaking cancer. Do I sound as pathetic as I feel? This is one of those the-tears-are-gonna-spill nights. I'm fighting them. Everything will be okay.

On top of this horrendous weight of not liking this present situation, I read this article. Kim Hill defeated childhood leukemia, but she passed away too early at 44 because of the relapse and other issues. This is a reminder as to WHY WE NEED A CURE. We need it so that Gideon's (and other children like him) quality of life will be nothing short of excellent and normal once they reach remission. This is why pediatric cancer needs more funding. This is why I am practically begging you to donate to CureSearch here in Gideon's honor. Gideon will make it out of this. He will beat this cancer. We believe it. But if there could be no parents who have to take their baby in for spinal chemotherapy since a CURE was found, I am passionate about it. Childhood cancer needs to be looked back on as The Black Plague. It needs to be seen as a disease of the past. Every dollar is appreciated and needed. THANK YOU to those of you who have donated already.

Do you see why I get obsessed with worthwhile causes? Does it make sense? CureSearch and donating blood are two things that are actually proactive. They are legitimately helping NOW when I feel so helpless living in this new reality.

And when I feel wordless, I go to other people's words:

“If ever there is a tomorrow when we're not together, there is something you must always remember: You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart... I'll always be with you.” - Christopher Robin (Thank you, Nicole)

"God has not promised skies always blue, flower-strewn pathways all our lives through; God has not promised sun without rain, joy without sorrow, peace without pain. But God has promised strength for the day, rest for the labor, light for the way, Grace for the trials, help from above, unfailing sympathy, undying love." - Annie Johnson Flint (Thank you, Derek)

"May the sun bring you new energy by day. May the moon softly restore you by night. May the rain wash away your worries. May the breeze blow new strength into your being. May you walk gently through the world and know its beauty all the days of your life." - Apache blessing (Thank you, Johnny)

"Your bubbly self IS still in there. Like a hotdog wrapped in deepfried bready substance on a stick, it's in there. Yes, I've compared you to a corndog. Nom nom nom." - Jenny Diederich (Thank you, Jenny)

"I had no shoes and complained, until I met a man who had no feet." - Indian Proverb (Thank you, card I haven't sent since if I sent it, it would seem like I was calling the recipient a complainer... So, I kept it for me.)

ANnnNNnNNNNd now. This is my dad-daughter song. While munching on a powdered donut on a chilly U.P. morning, dad would break out the Willie Nelson. I always made him blast this one and would perform my "routine" for the family. Do I still know the dance? Why, yes. I do.

And now I feel better. A little. Thanks, Willie.

We Love Ryan! (We all do!)

2011-03-08T22:14:00.000-05:00

A fever monster has been lurking in this house. I am doing all I can to trap it and demolish it, but he's one sneaky guy. I make it out to sound all cartoonish, but really, it freaks me out and there is nothing pixelated about it. Brody had it, Tom had it, I had it....and? Last night Gideon threw-up (everywhere) profusely, but no fever. He doesn't want to eat, and I am doing all I can to make the boy think that water is the best liquid on the planet. It is, after all. He is on a juice kick. Tonight I told him that his dolphins (chemo meds) need more water in his body so that they can swim faster to slay the sharks (cancer). He bought it and drank it. The boy loves flavor, and I can't blame him!

So, besides being fused to a Lysol can, there's not much more I can do besides ask everyone to pray. I'm praying this bug leaves our house without wanting to make its home in Gideon. As you know, a fever is not a favorable situation for a boy with cancer. The happy-go-lucky girl of my past may not return, but that's okay (although I miss her sometimes). This is our new normal, as our Nurse Michelle would say.

In positive news: WE LOVE UNCLE RYAN! Ryan Harrell is one of Tom's best friends. He and Abby have three amazing little boys, and they are skiing partners and lifelong friends to our boys. Basically, if anything happens to Tom and to myself, our will states that our kids are to be given over to this family. So now you know how amazingly incredible they are to us.

To illustrate how loving this family truly is, Ryan is racing in The Kalamazoo Marathon in GIDEON'S HONOR! All of the money pledged from this site will be donated to our favorite charity: CureSearch! Every penny will go towards researching pediatric cancer. I hope if you find it in your heart to donate, you do so there. We will be at the finish line, Ryan!

Uncle Ryan, BABY Gideon and Tom

I had to share this soothing treat...for the ears and for the eyes. Mmmmm... I could stare at it nonstop until I fall asleep. Speaking of, nigh-night!

A Fabulous Weekend

2011-03-06T18:04:00.000-05:00

Even though Gideon has had a constant succession of cold after cold after cold, he is still one smiley booger-producing factory. On top of these smiles, there are the ones generated from more awe-inspiring people. We were contacted by so many people following Channel WWMT's report. There are blood drives going on where filling out a fish is as much of the protocol as sipping some orange juice afterwards. I feel like that report opened our family up to meeting so many good-hearted people. This weekend was a tiptoe through an overwhelming host of angels on earth.

On Saturday, we met up with a family of race car drivers, the Long family, who were touched by the report and wanted to give Gideon and Brody racing gifts. We were given a signed racing suit, signed racing pictures, racing toys, blankets...so much! We were awed when we stepped into the private room they booked for this meeting and the gifts were out on display. As you all know, Gideon loves his race cars. As my family members can attest, he will only play with race cars with "numbers on the side." Brody and Gideon were speechless, and that was a first.

The most tear-jerking moment of this meeting is when we were told that they were going to run a race in Gideon's honor. His face is even going to be on the hood of Jan's car! The part that I can't contain is the fact that all of the money raised at this event will be donated to CureSearch which is a PEDIATRIC Cancer research group. I didn't know until Gideon was diagnosed, but only a fraction of all money donated to cancer research is dedicated to researching for pediatric cancer. I used to think, Well, one breakthrough for one kind of cancer is a breakthrough for all cancer. The truth is: there needs to be less toxic treatment for these itty-bitty bodies. That's a long-winded way to say I AM SO VERY EXCITED that this race team is not only raising awareness for childhood cancer, but raising money for it! BLESS YOU ALL! I will be sure to post more details as they come available so that we can all fill those stands. Another incredible fact: THIS RACE WILL BE A YEARLY EVENT!!! Woah.

Brody's last hockey game of the season was today. As you have read, the boy has been a hero through this all. So, I invited as many people as I could to cheer for Brody. A whole group of Western Bronco players came and not only cheered him on, but helped adjust his helmet and give him drinks from his water bottle. That was a touching moment for this momma. Brody wore the number 14 in Ian Slater's honor! We absolutely love these guys (and Chelsea, too!). Brody scored three goals. I have to say, he is kind of shy in front of everyone and doesn't say much (although he gets pretty macho on the ice), but when we got home he said, "Mom! There were SIGNS everywhere with my name on them! And when I scored, the whole stadium was so LOUD! That was the best feeling of my life." His eyes were one twinkling laser light show, let me tell you! He will never forget this day. THANK YOU, fans. You made my big Brody feel bigger than LIFE! We love you!

Floodgates

2011-02-23T21:05:00.000-05:00

Wow. I thought I was bombarded with love once Gideon was first diagnosed, but now we are experiencing it with a higher intensity since WWMT did its story on Gideon. THANK YOU, Channel 3, for the love and awareness you brought to the masses. For every monster reported on the news, there are thousands of walking angels! We don't just think that, we KNOW that!
Gideon's Story
To add to the channel 3 love, when I got home from errands this evening, there was a COOKIE BOUQUET on our doorstep from none other than the fabulously gorgeous (inside and out) Judy Markee! Look at these cookies. I have never seen Gideon more happy over a cookie shape in my LIFE!

I also have to back up and THANK my mystery-spa-day-giver. I have never had a better spa experience in my life, and I felt the lack of sleep and stress melting away. Ahhhhh... THAT was wonderful. Also, I have to thank Tom for labeling Brody's hockey bag with a pictorial key showing what was supposed to be packed since I did my first solo hockey gig with the little-big man. It was also my first experience with 8 a.m. ice time. Woah. That's early. I am also thankful that the electricity went out for two days. Why? Because my mother-in-law got up with boys and I actually slept IN until 9:30! Elation runs through me! Who needs electricity when one can get caught up on glorious SLEEP?!

Gideon is very sensitive now that he's off of this round of steroids. He cries, but immediately tries to stifle the crying by wiping incessantly at his eyes to stop the tears from spilling. The heartbreaker for me today was the way he silently cried on the couch after his brother left for school. His little shoulders shook, and I promised him some raspberry sherbet to stop the sadness. Little honey. He is my SWEET boy again! Just more sensitive and needing a lot more love and TLC. He was sick today and the day before yesterday quite a bit. Whenever we go somewhere in the car he says, "Remember my puke bucket, mom! My tummy is crazy right now!" I believe it. I am just glad his shaking hands stopped now, too.

I'm also wondering if this is a phase or something more: We walked outside and Gideon started to silently cry (I only noticed since I saw the telltale tear wiping) and I asked him what was wrong. He said, "EVERYONE is looking at me! Don't let them look at me!" When I asked him why he didn't want them to look at him (he usually loves the attention), he said, "I don't want them to know I have Leukemia!" Of course I explained that they didn't know. He had a hat on, afterall. I think in his delicate state, any added attention makes him overly emotional. I'm wondering if this is a three-year-old thing or a kid-with-cancer thing. I don't know, but I'm assuming once his ninja tears stop attacking him he will not be as sensitive to it. He'll be back to his TAAAA-DAAAAA! and pizazz in no time.

Speaking of sensitive, tonight at bedtime Gideon shut his finger in the drawer while grabbing for his toothpaste. I ran downstairs to get an ice pack, and when I got back upstairs, this is what I found (so, of course I tiptoed back down for the camera):

Can you see why I feel like the most blessed mom on the planet? So much empathy and love flows between my boys, and I can't get over it. I won't get over it. I'll just cherish it.

Before I sign-out for the night, I have received some emails asking about Gideon's story. People have been wondering about his "shark" idea. I think now is a good time to post his story again for the newest members of Gideon's PRAYER chain. All are welcomed, appreciated, and loved. Thank you! We treasure you.

Gideon's Gift

2011-02-19T00:08:00.000-05:00

At the very beginning of the battle, my friend Matt wrote that "when a tragedy strikes, we have two options: fear or faith." While my emotions have run the entire spectrum, and while fear is a little more potent at times than I would choose, bitterness has never stepped in and held my heart captive. I know the dangers of Gideon's cancer. I am not blind to potential heartache and added difficulties in the future, but there is nothing more comforting than the knowledge that none of us on earth are in charge of that. God has got this one, just like He has it all. And when I get stuck in the dark, He reveals His glory, love and compassion through YOU.

YOU are treasured in our lives. YOU, the reader and prayer and muser, have added more beauty to our Gideon's life and ours than we ever could have on our own. We have been bombarded with the joy in humanity more than we have been plagued by the ugliness of cancer. Cancer in a child will never make sense or be fair. Now that it's here and our reality, it is one of my deepest prayer that something beautiful can come out of this darkness. It already has, as you see in this promo from News Channel 3, as seen above. It already has, as you can see in this video:

If you feel led to donate blood in Gideon's honor, WE would feel privileged to receive a paper fishy from you. I never want there to come a day when a mommy is told, "We don't have a blood/marrow match to save your child at this time." Instead, I forever want that mommy to be able to sit next to her child and stare at that bag of a stranger's blood coursing life to her baby, all while sending out a monsoon of love and well-wishes upon the head of this nameless hero. I have been there many times, the mommy and the recipient of human selflessness. I could try to find the words to better encapsulate my gratitude, but there is not a form of human language or word strong enough to depict it.

If you would like to re-read Gideon's response to the "GOOD FISHIES" from blood donors, find the fish templates you can use to decorate and send to Gideon, and get all other information, please click here. There will be a PUBLIC Blood Drive in Gideon's honor at Hope Reformed Church on March 17. Here is the information:

If you are unable to donate at this drive, but still want to donate, please go to this Michigan Blood site to make an appointment that works for you. If you don't live in Michigan and want to donate, please go to this site to make your appointment. Every pint of blood donated in Gideon's name will be CELEBRATED in this house, I promise. AGAIN: THANK YOU!

Running Away

2011-02-18T12:02:00.000-05:00

To all my fellow bedraggled, frazzled, and how-did-this-get-caught-in-my-hair mamas out there: There is hope even when you feel like a certifiable lunatic. This morning, Gideon was sick in his bucket, and he followed up this sickness with perpetual whining and crying. I don't know what it is about whining and crying, but it was as infectious as pink-eye this morning, I think. While Gideon was crying and couldn't whine out a sentence that I could comprehend, Brody ran into the room crying and trying to out-whine his brother so that his concerns were heard first. It was a cacophony of chaos in the kitchen (good title for a poem. I'm on it.). Under normal lucid moments, I would demand a halt in the carrying on and assure them both that I would listen to their problems and we would solve them together. I was not Supermommy this morning, though. Having had three straight hours of sleep last night and 4 the night before, I felt not one shred of Princess Mommy in these achy bones of mine. I saw myself as a separate entity at that moment... and took in the tepid coffee in one hand, hair in a snarled tangle, threadbare jammies and yesterday's mascara rubbed all over my face. I was a comic strip. I was a cliche. I could not handle the whining and the crying and I had no patience in that moment to be a good mommy. So, I ran away. As I ran I screamed, "AHHHHHH!" with my hands waving wildly (don't worry, I put down my coffee) to drive home the point that I meant business: I was insane and DON'T mess with me. I ran upstairs with no plans at all. My only plan was to escape. Then, in true 7-year-old fashion, I climbed underneath Gideon's bed and hid. I hid from my children. All of you people who have been complimenting me on my "great" moments, I just wanted to share a realistic and not-so-proud moment with all of you. In the silence under the bed, not only did I discover my lost earring attached to a pirate doll's ear, but I discovered the healing power of quiet. It felt like an answered prayer. Then, the miracle...

Brody and Gideon ceased their Wah-fest battle and I could hear them strategize in the hallway. Brody said, "Okay, we saw her come up here. I'll check the bathrooms, you check the bedrooms. Okay, Gids?" I heard Gideon say "Okay!" like he was assigned a detrimental task that would alter the galaxy for the rest of time. OH MY GOSH! My running away forced them to love one another and work together towards a COMMON GOAL! Instead of feeling guilty, I tucked this one away in my head for use later.

Once I was found, there were excited giggles and HOORAYS and carrying on. Guess what there wasn't? Sobbing. Whining. Crying. If there isn't a book out there about the magic of mommies running away (in the house, only...I'm not a fan of abandonment), there should be.

HAPPY WEEKEND TO YOU ALL! Gideon is ALMOST done with this stage of steroids. Phew. This one was different than the others when it came to the pain associated with it all. I'd rather him be a demanding bottomless pit than to be in pain. I can't wait for my Gideon to reappear again! I can't wait to SLEEP! I CAN'T WAIT FOR MY SPA DAY, you sweet-sweet perfection of a selfless human being (whoever you are)!

Woah.

2011-02-17T22:05:00.000-05:00

I am too tired to be creative. Sorry. But here's the gist: Gideon has become a boy who will break into hysterical crying if there is something sticky on his elbow, if there is a piece of crayon under his nail, or if I say "Goodnight" and drown out any of his lullaby CD. These are all things I've come to expect at this stage in the game. What made me feel like I needed to dissect and unwire my heart so that it cannot feel was during the moment when Gideon started to hold his left leg, burst into tears, and yell, "OWIE!" and then say, "THE SHARKS ARE BACK!" And once I rocked him and his cries calmed, he got up and limped around without putting weight on that leg. I had a flashback of the beginning and I felt that heavy weight of panic and despair start to brew in my chest. Wet wool blankets were flung onto me and I was impaired from doing anything. I tried to trick him into thinking it was the other leg to see if this was one of his dramatics: no. He was hurting. I waited, thinking maybe he sat on his leg and it was asleep. No. A good forty-five minutes later and he was still yelling "OWIE!"

I don't want to replay the fear. I'll just say after my phone call with Dr. Elliot (AGAIN), I was told that this was either the Vincristine or more likely, the muscle pain that comes from the steroids. I was assured that his blood was checked for Leukemia cells on MONDAY and it was CLEAR. A relapse would not be presenting itself that fast. But............gosh. It's too dark of a pit for me to revisit. I will just revisit the fact that I am beyond relieved and I do not feel the least bit guilty for calling this time. Thank you, God.

It amazes me how difficult Gideon can act right now (not at ALL like the "real" Gideon), but he still takes his chemo without a fuss or a fight. Tonight was the night of 7 pills and 3 liquid medications. One after another, he swallowed and moved to the next without a break. I am shaking my head in disbelief and gratitude for one less battle.

I am also BLOWN A W A Y ! ! ! I was called by a downtown (swanky) spa to confirm my "SPA DAY" this weekend. Apparently, someone scheduled me a full three hours of bliss (anonymously). I don't know who you are, but THANK YOU! I am in awe with how people are throwing so much love in my direction. I was told by the spa there is "No way to refund," so I am going! I plan on being a noodle and I have a suspicion that I may even fall asleep.

I really am going to implode by all of this love and gratitude. Truly. Thank you.

****Monday, FEBRUARY 21 at 5 p.m. -----

2011-02-16T21:40:00.001-05:00

---is the date and time that WWMT channel 3 will be broadcasting their program about Gideon, miracles, angels among us, ways we can all help, etc. I cannot wait to see it! THANK YOU, Channel 3! You people are incredible! ---

I really need to know something... I hear about people out there who can function on little to no sleep at all. Are these people for real? Have they just somehow trained their bodies to think living in a perpetual haze is normal? And how do they end up NEVER putting hair smoothing serum on their toothbrush? (Guilty. Did that this morning.) If it is some sort of mind exercise or some kind of functioning trance they are under, I'd like to know. So, you sleepwalkers who are sleepwalking in a fully functional way, could you please hit me up with your secrets? I live on coffee during these weeks of Gideon steroids. I went to the doctor and actually asked if my coffee consumption was okay. I was told, "Your blood pressure is fine! You're good." Wow. That sounded like a Prince/Sinead O'Connor song, didn't it? Or is that just my sleepy mind talking? "I went to the doctor and guess what he told me? Guess what he told me?" Moving on...

The sleepiness was triggered last night. RIght around seven, the boys were playing in a very physical game of basketball in the basement. Gideon army crawled his way up the stairs and laid next to me on the couch, opting out of the action. He said his tummy hurt. I folded laundry and watched him whimper a little as he stared blankly at the couch cushion. About an hour later he said, "Mommy, I can't breathe right!" I asked him why and he said he couldn't take breaths since it made his tummy hurt. When I asked him to point at his tummy where it hurt, he placed his hands over his lungs. He was breathing in a quick and shallow way, and I have to say I was very concerned and nervous and worried. On his own he told me he needed the hospital air that goes in his nose. When I asked him to take a deep breath, he winced in pain. I asked him what that felt like and he said, "Sharp things." I am so thankful that he is able to communicate with me. I have seen so many babies who come to the clinic for treatment and I wonder how excruciating it must be to never know where your baby is hurting, only that he is hurting by his cries.

I called the on-call oncologist and what I described fits perfectly with a respiratory inflammation. Dr. Elliot said to watch him and if he remains lethargic and in pain the next day (today), to bring him in for chest X-rays. Otherwise, the pain does subside. I had many opportunities to check on how he was doing last night since he was up a lot. A lot, a lot. I was awake during a dream, and that dream-reality mix was one trip I don't want to go on again tonight, please. Thankfully, Gideon seemed fine today. So fine in fact that he had enough air for a lot of crying this evening and into the night. I kept reminding myself that his frustrated steroid fits meant that his lungs were healthy. This is how I forced my frayed edges of sleepless nerves smooth again.

Brody, the trooper of the millennia, helped me so much. Gideon kept asking for food and entree after entree he said, "YUCK! I don't want thaaaaaaat! I want __________!" Brody and his observant eyes kept track of me, and I could feel his concern. When I felt I was at the threshold of having my own version of a steroid rager, Brody pulled out "Enchanted" and said, "How about we watch your favorite movie, mommy? Gideon will sit still and not cry, either." I love him. I sunk into the pillows and even felt happy enough to do my own impromptu impersonations of Princess Mommy. Normalcy is Gorgeousy.

Tonight, as I was tucking Brody in, Gideon started screaming at a full blown volume. I am not proud to say that I wanted to match his screams with my own, and I'm pretty sure my facial expression said just that. Brody looked at me and said, "I want to help him, mommy. Please? I'll put myself back to bed." These do NOT sound like the words of a five year old, but I promise you they were the ones that came out of his mouth. A few minutes later, the crying was over and all I heard were lullabies. I went into Brody's room and he said, "He really wanted a different CD in... So I did that and tucked him in. And...Mommy? During the movie, I made you this." He handed me a card with a princess who had long eyelashes, a crown, and flowing hair. Underneath this princess it said "MOM" and an arrow to show just who mommy was: the princess. The boy sucks me into a Hallmark card constantly. I cannot tell you how much he has helped me through this. Even in his prayers tonight he prayed that Gideon's medicine wouldn't only make him crazy, but would make him better. How am I not supposed to cry at that?

So, God answered our prayers for Gideon's lungs to be okay. I may not have a lot of sleep, but I have a lot of my Brody to help when I'm at my wits' end. We're ending each day thankful. (and prayerful for SLEEP to happen tonight and that all of Gideon's organs stay healthy, please...)

Steroids May be Back, but I have a HERO on my side!

2011-02-15T15:25:00.000-05:00

Yesterday was jam-packed with ups and downs, but mostly UPS! And not UPS as in the delivery service. Ups as in high points. Glad I cleared that up for you. "UP" for you! Ha. Okay. This is going to be a long blog if I keep this up. UP -- AGAIN. Someone, anyone! Please stop me...

Can you tell we started steroids again? The stream of consciousness just can't be edited in this fog of sleeplessness. I am now going to count my blessings in list form so that I don't carry on and on as I have a tendency to do when I'm tired. It's no wonder my Philosophy professor liked my papers I wrote at 3 in the morning better than the ones I labored over for days and days. He was a fan of the tangent. There I go again. List. Here is a LIST of amazing moments from yesterday:

1. Captain Obvious one: Channel 3 News and the love they have poured onto our family.

2. SEVENTEEN good fishies swam out of the mailbox yesterday! Seventeen people donated blood in Gideon's name and we found this out on the day of love. This is no coincidence. There should be blood drives on Valentine's Day every year. It can be a literal GIVING OF THE HEART moment for all! I'm on it for next year, I promise! (I'm not counting that as a tangent. I'm counting that as a good idea.)

3. Mattawan Early Elementary had the students make my boys HUMONGOUS Valentines and they were delivered yesterday! Also, two red Valentine aliens were also dropped off from the students. My boys LOVED them. THANK YOU!

4. Another package came from the READER'S DIGEST GRAND-PRIZE WINNER: Grand Marais, MI! I won't even tell you what was sent. You MUST watch the video. Please. It makes me laugh. It also made me realize that I say, "WHAT IN THE WORLD?!" when I'm shocked, and I say it over and over. We LOVE YOU, Grand MARAIS! The boys are PUMPED to go new-toy shopping! :)

And now I'm breaking away from the list. I sipped some Coca-Cola and I'm feeling a little more focused. I am in love with my children. I know this is not a shocker, but I must say: Brody is my hero of the moment. He saw me mashing up Gideon's steroids and asked me if that was the medicine that "changes" his brother. I answered yes and I thought that was that. When the alien stuffed animals came from Mattawan, Brody asked Gideon which one he wanted more and then gave him his choice first. He whispered to me, "There. We can stay away from his screaming that way." And that was the most loving thing he could have done.

I was wrong. Later that night, Brody and Gideon were putting on their jammies. They always race to see who is ready first. This is usually a friendly contest in which the person who loses happily congratulates the winner. Not last night. I should say everything went well at first, and Gideon was fine with the fact that Brody won, or so it seemed. Once I tucked Brody in one last time, I went to do the same for Gideon. He started screaming. He had a full-on steroid rager and we were only two pills into the cycle! It's like his body said, "Ahhh, yes. I remember you, steroid! C'mon and let's Mr. Hyde this boy within SECONDS!" He couldn't speak since his screams were making him breathless. Finally he belted out, "I DON'T WANT BRODY TO WIN! I WANT TO WIIIIIIIIIIIIIIIIIIIIIIIINNNNNNNNNNNN!" and with that bed sheets were ripped off of the bed, pillows went flying and stuffed animals were launched into walls. I was trying to hold him down for my magical rub, but the boy was far too ticked to let me touch him. I could feel my patience wilting as this continued for what seemed like hours. Then I heard someone behind me.

Once I saw Brody in Gideon's room, the mama in me wanted to say, "You should NOT be out of bed!" but something stopped me. "Gideon," Brody crooned into his little brother's face, "Look! I didn't win! I forgot to put my other leg in my jammie pants." Gideon and I both looked down, and sure enough! Brody had one leg in and one leg out. Then he continued, "So I just came in here to say 'GOOD JOB for winning, Gids!'" He came in closer to his calmer brother who was now only mildly panting from Ragefest 2011 and said, "Goodnight! Sleep good!"

Gideon, in miraculous fashion, kissed Brody back and said, "Thanks, Brody! Nigh-night!" He then let me reassemble his bed and laid down without another peep. Brody winked at me and walked back to his own room.

...It was the best Valentine moment of my life. I ADORE YOU, Brody Thomas Schripsema! What a hero with a selfless five-year-old heart. I'm so thankful. Again.

Gideon's black eyes are back, and he covets his POTATO CHIPS. Here's a little glimpse into our morphing honey.

And now for the HAPPY pictures...

Love. Love. And more Love.

2011-02-14T13:53:00.001-05:00

Happy Valentine's Day!

I must say, I have not posted in awhile because I have been sitting on a secret. It is an amazingly gorgeous secret and I know myself: I would have blabbed. Even on a keyboard, I would have let it spill onto the masses and let its immaculate fingers reach in and give your heart a dreamy squeeze. I was the kid who gave obvious hints when it came to surprises wrapped in a bow. Now here I am, able to yell loud and happily to all of you!

WWMT Channel 3 News is doing a Special Report on Gideon and the miraculous situations that have surrounded us since his diagnosis. I didn't know if it would really come to fruition, and I didn't want to announce something that might not have happened. But it has happened and it will be aired! Judy Markee just left my house! I must interject here and say Judy Markee is a phenomenal woman. She is professional, but completely warm and friendly. I think the two of us could have chatted it up for a long time. She is a cancer survivor herself, and so this story is even more potent and real.

There is absolutely nothing that is good about cancer. It is even worse when it attacks such an innocent love-dove like our Gideon, but if something GOOD can come from something AWFUL, please! Let it happen! It is my prayer that this airing will make people more aware of childhood cancer, and will feel moved to do something about it. As you know, our family has rallied around blood donations as a common cause that has helped us get through some of the rougher patches. It has brought us joy and moments of celebration with each fish mailed to Gideon. Hopefully there will be new donors who are lead to give blood after this airing. Hopefully parents will see this and be cognizant of the warning signs of cancer. Hopefully people will see and hear how there are more beautiful people populating this planet than there are monsters. These are all of my prayers for this program. I'm not sure when it will be aired, but I will keep you posted now that the secret is out!

So, I would like all of you blood donators and supporters of ours to know this: I love you. Thank you! Happy Valentine's Day to all of you who have been such a cushion of loving support for us all through it all.

My Enigmatic Lil Pumpkin

2011-02-08T16:23:00.000-05:00

Gideon was up all night vomiting. He had no fever, but a lot of puking. I would hear moaning and sharp cries, and get there right in time with the bucket. Then, he woke up smiling and sunshine-like. He has not thrown up one time today. He doesn't want to eat or drink anything, so there must be something going on in that tummy of his. I wonder sometimes if maybe his pain tolerance has become epic-like. I wonder if it is only while his body is absolutely still that he feels pain (at night). I don't get it and I need to try to stop attempting to get it. When Gideon reacted to his first dosages of chemo with colossal headaches and his heart began to steadily slow its rhythm, no one understood that, either. I have come to one conclusion: There is no normal with cancer. There is no common side effect. Chemotherapy is really poison, so how the body handles that poison is unique, I'm guessing.

(Or...he's fighting a bug.) says the quiet inner voice that just never stops talking...

There I go, guessing. I'm going to drive myself batty. For now he is happily reading a book about Venus on the couch with Brody. I will place the mysteries of last night out of my mind and fall asleep with the bucket next to me again tonight. I'm thankful there is no fever and that he is himself today. He has not beat anyone up, either! YES. We're thankful for every victory.

Speaking of VICTORY... Reader's Digest is not announcing the winner of the "We Hear You America" contest until February 17. They are going through the votes and validating them. I think we can hesitantly celebrate a win, though. THANK YOU to all of those who cheered and spread the word. Grand Marais is the gem of Michigan, of the Nation, of the WORLD. I'm not even exaggerating. President Obama will be up north this week (this is only the third time in the last century that the President has visited the pride of the nation, aka the Upper Peninsula), so I'm pretty sure he'll give this tiny town a shout-out!

In other news: we are proud of our Brody! As you know, he is living and breathing hockey, hockey, HOCKEY! Nonstop obsession is what he has, and I have NO idea what that's like (heeeheehee). Anyway, he played in his first REAL game. He did his best and scored a NATURAL hat-trick (that's hockey lingo for three consecutive goals in a row). Since he prides himself in being a goal defender, we were so happy to see our little man attack the net this time. YAY, BRODY!

The Crying Wolf Complex

2011-02-07T13:53:00.000-05:00

Ever since we arrived home from Gideon's stint in the Children's Hospital, I have had agonizing moments of should-I-call? The clinic, that is. Does this medical issue warrant a phone call? I don't want to lose my credibility when it comes to calling if this is no big deal. Then there is a voice somewhere deep within that reminds me how I thought Gideon's leg pain was no-big-deal at first, and then I never hesitate in calling. I haven't been a crazy mom stalker of the clinic -- not yet, I don't think. The last few times I have called have been legitimate issues, and that has helped in my calling confidence. Until today...

Here's the back story: The last time Gideon was an ornery sobbing mess (and wasn't on steroids), he needed blood. His body was deprived of some essential juices, so of course he was becoming wounded-animal-like. Dr. Lobel assured me this was normal, and that this behavior was often a sign of needing a transfusion. These past few days, Gideon has been laying on me a lot and he has had bouts of ferocity like I have never seen. He would get frustrated and then start hitting and clawing the nearest live being within reach. My sweet little baby boy! Where was he? There HAD to be something wrong. Then this morning I noticed a couple dots of petechiae on his neck. Petechiae can be a sign of low platelet counts. The picture didn't turn out as clear as it was to the human eye, but you can make out a couple of those dots:

So, with the vicious streak, the sleepiness, and the petechiae, I called in and of course, my marvelous clinic told me to come on in for a blood draw to check it out.

It turns out, Gideon did not need a transfusion. In a weird way, even though I feel guilty about wasting these precious minutes of this lovingly busy staff, I felt so relieved. I don't have to wonder. And now I won't have to wait and worry for an entire week before our next appointment. Every time there is a blood draw, we get a piece of paper reporting Gideon's numbers. Here they are from today:

Hemoglobin: 11.3 (Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs. Normal levels in children are between 11-13).

White Blood Cells: 1.7 (White blood cells are the infection-fighting cells in the blood. Normal is 4.3-10.8, but for a child with leukemia, white blood cells are expected to be low. Chemotherapy does that.)

ANC: 935 (Absolute Neutrophil Count: Basically shows how capable the body is to fight infection. 1000-1800: risk of infection is low; 500-1000: moderate risk of infection; less than 500: high risk of infection).

Platelets: 256,000 (150,000 to 400,000 is normal. GIDEON has NORMAL platelets!)

So, the great news: Gideon didn't need a transfusion today. The bad news: His terror-streaks were from HIM, not a medicinal problem! Yikes. I'm hoping this is a phase, all. I realize that the boy is going through a whole lot. I have also been told by several people, "Oh! Don't punish him! He has so many hard things he has to deal with!" Here is the reality, though: It'll be harder for him in the long run if he is absolutely, positively spoiled and not held accountable for his actions. I need everyone to realize that I am not looking at this cancer as a death sentence. I believe he will make it out of this, and I will not let brattiness run amuck onto the streets of this world once he is in remission. Not from this house, I promise. So, with every bad choice comes a consequence. He has lost his Lightning McQueen powerwheel for a day, and that was a hard lesson. He knows I will follow through. When it comes to the battle of will power, I will always win. Here is a time in my life that I am happy for my strong stubborn tendencies. Sometimes our quirks can be our assets!

We had our wrestling match of willpower over nap time this afternoon. You would have thought I was forcing my three-year-old to take to the Egyptian streets. As you can see, I won. He's sleeping. I'm hoping the naps will help curb the Crabisaurus Gideon.

I can share some positives, though. He is not a complete monster these past couple of days. He was cheering for Green Bay since they have "G"s on their helmets. He went around saying, "Gooooo, Gideon G's!" every time The Packers did something good in the Superbowl. He also loves WINGS (I discovered during the Superbowl)! Chicken wings, that is. I guess this should not be a shocker since he is such a drumstick boy. We are expanding our love of chicken, though. That's good. Expanding ones horizons is always valued, I think.

I must also share that I adore Gideon's suffix usage. If he is asking, "Who moved my car?" He will actually say, "Who move-ED my car?" Or, when something is plural, instead of saying, "Look at the pretty leaves," he'll say, "Look at the pretty leave-IZ!" I liquefy over this. He has been calling snowflakes "snowflags" since he could talk. It is more poetic, I think... Snow particles waving in the breeze like a flag. Hmmmm... That is a hot chocolate for the soul image, yes? He has not changed this since I have never corrected him. He will be the most grammatically incorrect child (of an English teacher, no less!) to ever have existed. But he will be cute, and you will love to listen to him talk.

All of this Gideon swooning has softened my heart to the willful child he has become of late. Thank you, blog.

P.S. This is the LAST day to CHEER for Grand Marais, MI! Voting ends at 11:59 tonight! Click here one last time, please.

...and my FAVORITE Superbowl commercial:

HAPPY SNOWDAY!

2011-02-02T16:09:00.001-05:00

Gideon is sleeping and Brody is at the neighbor's playing hockey. Sweet Gideon is showing symptoms of a cold this morning, but he is still in good spirits. That means NO fever. I am praying that feverless-ness continues. It is when fever strikes that we have to bring Gideon in to the hospital. I want to stay snowed in, please. An adorable part of this virus is that Gideon starts forcing air out of his mouth while making a "HHAAAAAAAHHHHHHHH!" sound. I asked him what he was doing and he said, "I'm breathing out the fire in my throat." Then he continues to exhale...much like a dragon would sound. Get that fire out, buddy. Don't let it stay in and get your temperature up!

I would also like you to know that I was the meanest mommy on the planet this morning. I made Brody clean up the toys in the basement instead of going directly to his friends to play hockey (ON A SNOW DAY!). Once he was done, he stomped upstairs to his room with his school backpack, mumbling under his breath. I gave him some alone time and then went to check on him. He told me he is moving in with the neighbors since ALL they do is play hockey. Their parents NEVER make them clean up. His backpack was loaded with his running-away-supplies. This included blendy markers (if you haven't used them, DO. So fun), his mini skateboards, a cookie, and a hockey puck. I asked why he didn't pack underwear. He told me he'd wash the ones he has in the snow. Oh. I packed a bag to runaway in my youth... I remember it well. I guess I wasn't as creative since all I packed was toilet paper. I told my mom I could live without anything...except TP. Maybe this running away daydream is all a part of growing up. On this side of the running away threats, it's pretty adorable.

I'm happy to report that Brody and I talked it out. He feels loved again, and apologized for "almost leaving" me; hence, he is playing hockey down the road now. His job was done...no need to sulk anymore.

I am kind of sulking because the second place town in the Reader's Digest contest is steadily gaining on Grand Marais, MI. This contest is only going on for FIVE MORE DAYS, and at this rate of losing votes, we won't be able to pull it off. Please email me if you want me to register you to cheer each day (if you don't know how). Readers Digest does not send mail to you unless you request it. I have gotten nothing from them. It is free. PLEASE register and CHEER ten times a day. If you don't think you'll remember to do it each day, but wouldn't MIND doing it, EMAIL me at aschrips@gmail.com. I'll actually check my email for this. I will log you on each day and vote for you. It takes 20 seconds and I can do it during nap time. In the meantime, please click HERE. The second place town miraculously earned 20,000 votes late, late last night. If that happens again: curtains. Please vote and help Grand Marais save its harbor; thus, saving more lives. I'm a bleeding hearted philanthropist these days. I can't help it. I love this town and I want it preserved for my boys to enjoy with THEIR babies someday. Also, this whole cancer-ride has taught me it's okay to ask for help. Thank you.

And now... A little treat from our weekend:

Hmmmm....

2011-01-29T08:09:00.001-05:00

Sometimes things are too weird. Gideon has been doing great, as I've mentioned. Then at dinner last night, he stopped eating and was silent. Even Brody across the table, who was acting like a total and complete goof, wasn't snapping Gideon's glazed eyes into awareness. He just stared with wide eyes into nothingness. I asked him what was wrong. He looked up at me, his bottom lip made its distressing debut for the night, and he began to dry heave. Then he laid down and just fell asleep. This was at 5:30! My adrenaline was pumping and the sirens of something-is-wrong were whirring at maximum volume. He didn't feel hot at all. What was wrong?

I bundled him in a blanket and rocked him for about two hours with the thermometer in my hand and his arm ready for the reading. Every single time I checked, his temperature was normal. His behavior was anything but normal. He didn't even move whenever I repositioned him for a temperature check. He was out.

I think I get myself so worked up sometimes that I make myself super sick with a migraine. These have been more common the past six months. They don't happen in the midst of a crisis, but as soon as I am able to calm down, they attack. I was able to wake Gideon up enough to get on his jammies, brush his teeth, and take his chemo. He was a little zombie the entire time and didn't try to talk, to answer me...nothing. He crawled into his bed on his own and passed out again. I had to get one more temperature check in there: normal. I went to bed next to him with the puke bucket ready, and the migraine monster started to chisel at the right side of my brain. It was not the best night.

This morning, though, Gideon is acting fine. He ate his yogurt and shunned his toast and eggs...the norm these days. He is smiling and talkative. So, last night was a Twilight Zone fluke, I guess. I'm praying it was and that he's not battling something.

Another PLUS-side bonus: Those HORRENDOUS, horrid, horrific medicinal syringes are starting to WORK now. I can't tell you how frustrated I get with those things. The plunger never fits into the syringe right and then when I wrestle it and maneuver it, I am rewarded only with the medicine spraying everywhere. When they are first bought, they work perfectly. It's after they are washed (trying to be green and recycle) that they become these defiant little monsters. Guess what I had to do to avoid this drama? Get the rubber part of the plunger a little wet and Voilà! It just slips in there like it was never the obstinate and insanely stubborn devise ever created.

All of us new cancer parents get a binder to take home full of information. It is the most useful handbook I've ever owned; however, I want to make a suggestion. Please make a section called "Potential Annoyances." This is not the gloom or doom section that relays heart-wrenching what-ifs, but little things that aren't life altering, but could provide some minor relief from annoying garbage like those dang medicinal plungers! Just an idea. I'd be happy to write it for you. :)

Grrrrrrrrrr...

P.S. Please remember to CHEER for Grand Marais, MI. There are only NINE days left and second place is GAINING on them! Thank you.

Spontaneous Smiles (and Laughs...)

2011-01-27T16:23:00.000-05:00

Gideon is doing really well these past couple of days. He doesn't even need chasers after he takes his chemo anymore. He just swallows them like it's second nature. Gideon has also learned how to read his own body. He'll say, "I need to just lay down, please. I need to rest," and then he goes to lay in his bed for thirty minutes all on his own. Or he'll tell me how his tummy is crazy and wants to cuddle. I'm all about that. I'm so proud of this boy.

Speaking of proud... I slept in until 8:45 this morning! I panicked and leapt out of bed. Gideon was not in his room, and he always wakes me up! Thankfully, I heard soft giggles coming from Brody's room. I stealthily sneaked in to spy. Spying on my kids has got to be one of my greatest joys in life. Nowadays it's to catch them being sweet and heartmeltingly adorable. (I'm sure later my spy tactics won't be as jubilant...more I-demand-to-be-in-the-KNOW.) What I saw started the day out more right than I can express. Brody was sitting on the teacher chair in his room and reading Caps for Sale to Gideon, complete with inflection and character voices. Gideon sat criss-cross-applesauce underneath him, staring up, transfixed by his big brother. I sat and listened, out of earshot and line of vision. The way the two of them interacted and the sweet way Brody patiently listened to his brothers questions made me decide coffee could wait. Let that soak in: coffee could wait. Yes, it was that glorious.

It is this feeling that has driven me to become a humungous fan of Ruth Kaiser's Spontaneous Smiley Project. I first read about her and saw her gorgeous photography through a friend a couple of years ago. Her whole philosophy is to "be porous, not Teflon." She sees smiley faces in everyday objects and takes pictures of them. It has become a nationwide pastime for many of us, since. Needless to say, I completely reached out to her so that I could gush about the beauty and awareness she promotes in everyday living. I thought it would end with a post, but Ruth posted back, and then I posted back...and, I think I kind of found a soul sister in Ruth. She sent a gorgeous A-B-C banner that had a smiley-face object for each letter of the alphabet as soon as she heard Gideon was diagnosed. Get this, for the letter "I" she made the picture to be the "I.V." smiley Gideon found on his arm while in the hospital. I told you she's gorgeous.

(Gideon's SMILEY from his IV)

Anyway, Ruth is making a LAUGHING/GIGGLING video and needs all of you positive people to help out. She needs you to send her your laughing children (or adults) to her email: ruth@SpontaneousSmiley.com. I sent her mine, below. Spread the laughter, all.

Also, please remember to CHEER for Grand Marais, MI. You thought I'd forget, but I didn't! Only eleven days left! I need to give a super loud shout-out to my Facebook friends who voted last night when I put out my 495,000 vote challenge...and then I whined about it until people voted. You people are FABULOUS!

Let's pray these giggles continue!

MONUMENTAL DAY!!

2011-01-24T17:17:00.001-05:00

The air is dry, dry and beyond cold. So frigidly cold that the air forces one to become more aware of this mindless thing we call breathing. It also opens up the night sky for some massive stargazing opportunities. Did you know the "morning star" you're seeing every morning is Venus? Now you do. Also, just so you know: Venus is Pluto's best friend. Venus protects Pluto from any mean meteors since its so hot and will burn 'em up. That piece of knowledge is courtesy of Gideon. We went out to look at the sky last night, and this was my lesson. I was also told that heaven is not on Mercury since Mercury isn't that pretty. I think we may need to book a trip to Kalamazoo's Planetarium soon. Gideon is enthralled with all things sky-related. He still plans on flying Jumbo Jets, though. I asked if he wanted to be an astronaut, too. Nope. He wants to fly planes and breathe "regular air." Squeezable, yes? Yes.

Today was monumental. Not just because of the cold air and the fact that I adore winter, but for other reasons:
1. Gideon...get ready... SPLIT HIS COOKIE IN HALF AND SHARED IT WITH BRODY!!! He did! He did! I have been hammering this sharing thing pretty hard these days, and watching Gideon pass a large chunk of cookie to his brother in the backseat almost made me have to pull over to cry. I won't drive on bad roads while crying. I am a responsible Michigan girl. So, I promised myself I could cry later in celebration.

2. Later came. I need to say this: I am not a Justin Bieber fan. I think he's adorable, but I never got into his music (sorry, fans). Then he recorded a song called "Pray" and featured kids with cancer in his music video. Rivers. I created rapids with these tears, and some strange ugly-cry noises, too. I think I was speaking Moose. I never thought I'd see the day that Justin Bieber would make me sob. But he did. He's a BIG "MAKE A WISH" supporter. Yay, Justin! Brody is allowed to listen to you.

3. Another cry came AGAIN. This truly was the most monumental part of my day. Mattawan Girl Scout Troop 618 had a blood drive in Mattawan in honor of Gideon. I had no idea they were doing this until Gideon got their letter in the mail today. Are you ready? THIRTY EIGHT "good fishies" swam out of the envelope. THIRTY EIGHT people donated in Gideon's honor. That's 114 lives saved. I thought I got all of the tears out from Justin. I bawled and Gideon asked, "WHAT'S WRONG, mommy?" Brody, who is older and wiser by twenty-one whomping months, and more used to his mommy said, "She's happy, Gideon. Those are happy tears. Looks like she's makin' a lake for your fishies." And that made me laugh. I have the funniest kids ALIVE.

TROOP 618 -- THANK YOU! You ladies are beautiful and wonderful. Also, thank you to all of the donors. Gideon was elated by his fishy storm! So was I!

4. This all occurred on the day of Zondervan's blood drive, too. Thank you, Merideth, for cheering your colleagues on towards donating that blood. EVERY bag counts! I love you, lifesavers.

Yes... Monumental and lovely was this day. It would be even more monumental if you took twenty seconds to CHEER for Grand Marais, Michigan by clicking here. (There will be a plug for this until the contest is over. Sorry. I just adore that town too much to watch it be destroyed...)

If I knew you were comin'...

2011-01-21T10:44:00.000-05:00

My boys totally play along with the zaniness in this house. I have been addicted to early 1950s songs lately, and the bigger the sound, the better. There are not enough songs with long instrumental breaks and sliding trombones in my lifetime, so I'll borrow from previous generations. So, we are time warping into the 50's theme around this house, and the boys are LOVING it. Gideon woke up this morning singing the song depicted below and then asking for his plate of sausage. I'm happy to report for the blog archives that Gideon is not refusing vegetarian sausage, and I am elated that my boy is getting his veggies in this fake-meat way. I'll take it!

I notice many things about these videos (the messy house included), but I can't get over the way Gideon throws a steroid fit and Brody doesn't miss a beat. He doesn't get all angry or frustrated, he just plugs away. No words in my blog can really encapsulate this calm persona Brody displays during these breakdowns, but you can see it for yourself. I also notice the gorgeous personality differences in my boys: Brody, the shyer and hesitant and careful one, and Gideon: the extrovert and all full of TAAA-DDAAAAAs! In the video that the boys shot without me knowing it, Gideon says, "Brody, I haven't seen you in awhile. Sing a song for me-eee!" which also tells how I always get out the video camera and ask my boys to recreate moments. Maybe it's just me, but the video Gideon shot is my absolute favorite. His belly laugh and the slapstick WHOMP! of the pillow careening with the camera is just perfect. I should leave the boys alone with the camera more often. This was not a recreated moment, it was a real moment.

Speaking of moments, could everyone do me a huge favor and STOP trying to rush life into warp speed? This never bothered me before. It does now, and a ton more than I ever would have guessed. I used to say things like, "Gosh, I'll be glad when THIS day is over," and that sentence will never leave my lips again. Moments can be awful, stressful, frustrating...but the next moment that follows could be the most gorgeous moment of the week (or even your life) if you can just let your heart recover from the not-so-great moments that went on before. We miss so much of the good stuff by being stuck in the mud of a yucky moment. Most people want to live a long life, but then contradict this desire by rush-rush-rushing the day. I say slow it down. Listen to some 50's music if it helps.

...And I'll step down from my soapbox. I feel much better. Thank you for letting me rant.

Love to you! Even YOU, busy-busy-busy and stressed-stressed-stressed out friend. Come on over and I'll bake you a cake (or we'll just dance to the song...)!

P.S. Please remember to CHEER for Grand Marais, MI by clicking here! An automated "WOOHOO!" is enough to do it since it has to be one of the most encouraging sounds on the planet. OooOOoOOoo... I KNOW you wanna hear it now! ;)

A Potpourri Post

2011-01-17T20:13:00.000-05:00

Gideon is eating us out of house and home! His latest craving: sausage. Not just any sausage -- NO! It must be plain sausage links. Set a plate of maple syrup flavored sausages or sausages with "bumpy skin" and there will be some howling and gnashing of teeth. He is a sausage snob. Oddly enough, that kind of makes this Polish momma proud. I'd be even prouder if his tastebuds were demanding kielbasa. Maybe the next round of steroids will bring this happy gift.

I have found (praying and hoping) a...gosh, I'm afraid to type this...a way to deal with Gideon's need to hit and pummel people during steroids. Before it was that blow-up football guy in which to unleash his angst, and now Gids has lost interest in him. Then, I gave him pillows to throw, kick, and clobber. I can tell he's on his way to wanting to kick some tail when he clenches his teeth and balls up his little fists. Thankfully, in my sleepy state, these are obvious neon lit signs to my foggy brain. I send him to the puff chair of pillows to punch away at the first sign of trouble. He snubbed his nose at this the last few times and hightailed it towards his brother with fists flailing. He said to me, "I don't wanna hit pillows! I wanna hit PEOPLE! It just FEELS better!" Yes. He said that. More like growled that. I was not the proudest of my little Warrior in that moment, but then I thought about kids with sensory needs... Needs to be squeezed and to feel human contact. I laid him on the floor with him thrashing and screaming out a plea for a little taste of brother warfare, and I started to methodically squeeze (not too tight) his arms, his shoulders, his hands, his legs...just pressure. I watched as magically his fists unballed and his jaw relaxed. I tried this new method three separate times since, and it has worked! Please, let this be the end of the bruising brother rampages! Poor Brody. Brody did say to me, "It's okay, mom. I'm a hockey player," as if he was willing to sacrifice himself in order to bring peace to the house. No way, kiddo.

At Gideon's last clinic visit, it was found that his organs are experiencing minimal damage and distress, so his chemotherapy has been increased. Cancer is so very strange. I'm thankful that his organs are staying strong, but increasing the chemo is definitely a bittersweet bit of news. I just have to remember what that means: less likelihood of a relapse. I can't think about the chemistry of what the chemo is doing to the insides of my boy's body. I have to trust and pray. This has not failed us yet! You praying public have made our requests so voiced through it all. THANK YOU. Here is a picture of Gideon's chemo platter tonight. Yes, I use chocolate syrup. What can I say? I love Mary Poppins and I think her advise is brilliant. Also, the ground up chemo pills stick better in chocolate.

I had my meltdown during Gideon's last round of steroids and begged for someone to whisk me away. This time, I had friends who were all proactive and made plans in advance (I'm not a plan-maker...at all. Thank goodness I have friends who know this about me). I need to thank my GR ladies for treating me to a Polish dinner at a restaurant that looked as though Cupid set his arrows flying in an avalanche of glittered hearts and pink streamers. Do they know me or WHAT?! Polish food and sparkle...swoon. Then, preggers Cate let me lounge at her house in the best Snuggie of all time: a Teenage Mutant Ninja Turtle blanket with arms. By the way, I'm never knocking Snuggies again. I'm a fan! I am! Kristen drove to my house from Milford just for a few hours and spoiled me with a pedicure and dinner. So, I have been extremely mollycoddled! Gideon's moments of lunacy are just rose petal annoyances to me this round. I have the BEST friends EVER!

Speaking of the best friends ever, I must say, the residents of GRAND MARAIS, MICHIGAN are saints. I have been dreaming about my home away from home a lot lately. As most of you know, this upper peninsula slice of heaven is my escape from all forms of chaos. It forever will be that to me. Brody and Gideon have been receiving care packages from the town of Grand Marais each month as reminders of the gorgeous people who reside in the most spectacular spot on earth. I'm not just talking it up because it has been such a part of my family's life (my great-great grandfather made his home there with his eighteen children...so, as you can imagine, I still have relatives up there), but because it is truly God's gift to our planet. I have traveled many places in my life, but this is still my favorite by far. Sadly, the bay is filling in, and they are in massive need of a break-wall. They have been promised funds (which never came to fruition) since this is one of the RARE safe havens on Lake Superior in which boaters can wait out storms, etc. If the bay is gone, so is its capability to protect. The bay also serves as a tourist pull, especially for the kayakers and those who love sandy beaches on calm water. Tourism is this town's means of survival. Where is this going? Well, I feel the need to pay something forward to a town who has quite literally been a blessing to myself and several generations before me and after me. They are in a READER'S DIGEST contest. The town that has the most votes will receive forty thousand dollars and a feature article in this popular magazine. To win, all you need to do is click here, scroll to "GRAND MARAIS, MI" in blue and on the left, click on it, and then click the "CHEER" button ten times. There is NO money involved. There are no donations or logging in needed. We just need VOTES, and you can do so every single day. So, if you could pay it forward to a town who hosts the spot where my soul feels closest to our Maker, that would be perfect! In all that I'm getting-getting-getting, I feel the need to voice ways people can give-give-give in honor of beauty and goodness. Please help save the town that I fully expect will become Gideon's escape one day, as well (it's in the blood)! I feel the need to repost this video of our last trip up there, just so that you can take in its wonder. THANK YOU FOR YOUR HELP!

Clinic Tomorrow

2011-01-12T20:15:00.000-05:00

I've never been the girl to point out the strings at the puppet show. I'd much rather watch them dance and sing and ignore the strings (unless one snaps me in the eye, or something). Here is one gorgeous puppet to celebrate in our lives: Just like a normal boy, Gideon's cold has diminished into a gooey mucus-ridden cough. That's it. No strings attached! An occasional dragon-like hack and then it's done. I think it's taken longer than the general public to conquer for him, but it's under-wraps and we can move on from that one. I pretty much fastened a funnel to his mouth and forced the fluids for awhile there, but nothing like any other "normal" momma wouldn't do. That feels good, to have a small medical mishap that everyone else experiences, too. Not that having a cold is good, but you know what I mean... I never thought I'd see the day when I'm thankful for a cold. Perspective, perspective, perspective! While I'm thankful that the general public is so loving, I am looking forward to the day when a stranger doesn't feel the need to buy Gideon a cookie just by looking at him and feeling sad.

Gideon was feeling SO much better that he, Brody and Tom went ice skating for a little while. Below is the footage. He adored it! He got tired quickly, but I think this was not only good for him to be outside, but for Brody to feel like he was giving his brother some important Big-Brother-Training on the ice. Sheesh, they are adorable. I was shackled to my computer as I typed more papers for my online classes during this time (I. Am. Not. A. Fan.), but with every word typed I'm getting closer to the finish. It's relieving to work on these papers knowing that the boys are having safe fun and not rigging up some catapult device in the basement while I study.

Tomorrow is another clinic day. Gideon will receive Vincristine, and we will be starting up on those steroids again. Thankfully, the child has made up for what is to come by making me laugh nonstop. It's all about balance. I've stored up the laughs he's granted me like a camel (not the spitting kind, the smiling kind...yes, they exist). I'll scoop 'em out when things get hairy here in the next few days. Friends, please remind me to do that. I won't allow myself to get shocked by the fact that Gideon will act sort of mean and unlike himself for awhile. As long as all of these medicines and chemicals are doing their jobs, I'm thankful. Please continue to pray that they do!

(And, just to point out, "AIIIIIMMMMEEEE! What cha wanna do-oo?" is wailing in the background. I love you, my seeeester!)

Iron & Wine "Release"

2011-01-06T00:16:00.000-05:00

I should have been writing one of my one trillion papers last night to earn my six credits needed to stay "current" with my teaching career, but instead I was addicted to a song. I played it over and over and over again in the background while I watched the black cursor on my screen blink in a wavy way since tears kept threatening to spill.

I frustrate myself the way I can get so down at times, and those times are usually while Gideon is napping and Brody is at school. I say to myself, "STOP IT! He's alive. He's sleeping upstairs. Be grateful! What is wrong with you?" As you can imagine, this inner monologue does nothing for my self esteem. In fact, sometimes I think that if I would just allow myself the time to cry, I could move on more quickly and feel much better. I need to let it all out... Not to wallow and allow darkness to take over my heart, but to just release everything... mostly the worry. And, surprisingly, the worry doesn't attack too often. Believing in a higher power does that. I'm not in control, and I know it.

There's always a trigger to this worry. I am thankful that I'm a moment girl, as I have said before, since I can exist in the here and now and not really dwell on what might come. Unfortunately, the here and now sometimes forces that attention forward, towards the countless unknowns in life's future.

An acquaintance I met through one of the support groups has a son whose ALL (same diagnosis as Gideon) relapsed a year and a half after he was done with chemo, and he "earned his angel wings" as we in the childhood cancer community would say. I have never thought about, processed, or even let myself process the thought of a relapse. This is mostly because my goal and focus has been to get through this chemo in the most healthy way we can. Since we are still entrenched in chemo treatments, that has been my sole concern. I believe and will continue to believe that Gideon will not relapse. I do, but there is still that lodged boulder there...the fear. I started to choke on that fear and was about to lose it when I heard someone on the stairs.

"I can't sleep, mommy. Can we lay on the couch to rest, instead?" Ummmm... YES. Maybe it's crazy or maybe it's normal, but I have been massaging Gideon constantly. He adores it (wonder where he got that), and I picture my fingers rubbing each muscle, every square millimeter of his legs, arms, back, neck, and I just pray the entire time. I silently repeat over and over, "Please, let this blood flow clean. Please keep coursing and working and remain sharkless." Gideon's peacefully closed eyes and closed-mouth-angelic grin on the pillow adds to the serenity of these moments. He doesn't get tired of me rubbing and I could do it for hours. And we did. For two hours I rubbed him and prayed and watched his sweet face. The worry didn't ease up from earlier, but the thankfulness increased significantly and completely trumped the worry. I was going to say "overshadowed" it, but that doesn't work, more like "overlit" it.

By the time we were finished, it was almost time to pick up Brody. Gideon said, "Mommy, let me rub your back. You're a princess." Every person should have a Gideon in his/her life. He just obliterates any negative thought or emotion. Of course I let him! He is GOOD. He walked on my back until I told him we were going to be late. So Gids and I noodled our way to the car after our spa time on the couch.

We went about our day, and I didn't deal with the worry still looming within until much later in the night. Writing a paper about differentiating a class seemed impossible. I searched for the live streaming of Iron & Wine's newest album (coming out at the end of the month) just to be my background music...my chill tunes of inspiration. That's when "HALF MOON" was played and I just stopped. The cursor was waving due to the tears, and I didn't want to experience vertigo (excuses, excuses).

Here are the lyrics, I think you'll understand why I had to stop what I was doing:
Halfway home in the hilltop trees
And all our footprints in the snow
And the evening glow leaving

Low night noise in the wintertime
I wake beside you on the floor
Counting your breathing

'Cause I can't see nothing in this half moon.
Lay me down if I should lose you.

Halfway-working on a worn-out house
And all our friends
The ragged crows
And aching bones whining.

Where are we when the twilight comes?
The dark of valley and the breeze
And the frozen leaves chiming?

'Cause I can't see nothing in this half moon.
Lay me down if I should lose you...

I do that sometimes. I go into Gideon's room and count his breaths and watch his chest rise and fall. With this virus he's got going on, I try to prop his little head higher without waking him just so he can take deeper breaths. "I can't see nothing in this half moon" to me spoke of my attitude yesterday. That darkness creeping in and threatening to block the full light of beautiful outcomes instead of the darkness of worst-case-scenario. "Where are we when the twilight comes?" Where will we be if things take a turn for the worst? That whole stanza completely encapsulates the worry I felt... The what-if, the hows, the icy fear that was gripping me. "Half-way working on a worn-out house" described the way I was zombie-ish in my approach to getting things done yesterday -- robot-like and just going through the motions due to this fear. Everything hurts worse when there are darker thoughts instead of lighter ones playing out in my mind, so I even identified with "whining bones."

Mostly, it was the moon part that got me; not being able to see the brightness when there is possible darkness to eventually contend with... But the heaviest of all was the line, "Lay me down if I should lose you..." I think that one sings for itself and I don't and can't really expand on it. That's the line that transformed the cursor into a blob of black that completely took up all of my white writing space. It's impossible to write on a page smeared in black.

I could take this song line-by-line and get all literary critic on you, but I'll leave it there. The version I listened to had more instruments and haunting vocals in the background, which added to the beauty, the sad beauty. I'm guessing that's the version that will be on the album. For now, you can listen to the song and just feel it. It served as my emotional release and I'm no longer in the half moon, but the full sun, so please...no worries! I needed it, and I also need to keep it real on this blog.

I believe. I also believe it's okay to cry sometimes because of sadness (we all know I don't stifle the joy-streaked tears, we need to be fair to all of our emotions).

BLOOD DRIVE!!!

2011-01-03T12:27:00.000-05:00

Wow! Amazing news! Zondervan, "an international Christian communications company," is holding a blood drive in Gideon's honor! I feel BLESSED that Gideon's story is reaching so many people, and with that, his story is inspiring more people to donate blood! Below is the "commercial" to publicize this event, and it will be running at the headquarters for the Zondervan donators to watch on the day of the drive. There will even be fishies there for people to decorate. Thank you, Zondervan!

Am I getting a little too dreamy/pushy if I offer ANYONE who wants to create a blood drive in Gideon's honor to use any of this blog and/or this "commercial" to publicize your drive? You have my blessing and permission! The more donations of blood, the more lives saved, and the more it feels like Gideon's battle has done GOOD for our world.

Dear Mrs. Scheeler's Class,

2011-01-02T18:04:00.000-05:00

Brody standing next to the TWO HUGE BOXES of brand new toys from Mrs. Scheeler's class!

One of the clinic's patients picking out a toy after his poke!

Gideon picking out a prize after his poke, too!

Dear Mrs. Scheeler's YOUNG FIVES Class,

You, boys and girls, have done such a wonderful and giving thing! There are so many people in the world who take, take, take and want, want, want, but all of you have shown that you are loving givers. You understand it makes your heart happier to GIVE than it does to TAKE. I heard that some of you even gave up one of your own Christmas presents (brand new) to give to the KCMS Clinic. Wow. I hope that when you dropped your toy into the box, a happy warmth hugged your heart until it felt like it grew, grew, grew to the point that you felt like your heart was a balloon floating to the sky! Thank you, you precious people!

You all know how scary it is to get a shot. It lasts for a second and then... it's DONE! The kids at Gideon's clinic have to go in for many different kinds of shots and very often, too. The good thing about this is that it will make the very sick children better! Even though the children at the clinic get many shots, they still can feel just as scared as you do when you get your shot. Sometimes they just don't want to do it at all, sometimes they just cry, and other times they just want to hide. Knowing that they have a bin FULL of brand new toys to choose from after the shot or shots are over can make so much of a difference. They go from crying and feeling afraid to asking, "What kinds of toys are in there?" and it gets their minds off of how scary the poke can be.

Every single gift you donated for the surprise bin will make a sick child SMILE! Do you know how beautiful it is to see an ill child who is scared or hurting to smile? It's like seeing a sky full of rainbows after a hurricane, I promise. Not only have you made so many children happy, but you have given many mommies and daddies happiness, too. When our little boys or girls are hurting, all we want to do is to take that pain away. Your toy donations made the little boys and girls smile, and that made every mommy and daddy who saw that smile to smile, as well. You formed a SMILE TRAIN! Try it! Look at the friend to your right and smile, and then that person takes your smile and turns to the person on his/her right and smiles, and keep going until everyone in the circle has smiled! I bet you all are giggling by the time this SMILE TRAIN is done. That's my hope, because you beautiful little people have done the same for so many strangers who needed your love.

THANK YOU, Mrs. Scheeler's classes!

Love,
Brody and Gideon's mommy
-----------------------------------------------

Gideon update:

Gideon is sick. I'm sure it's a virus, but the boy's cough is getting worse and worse. He can't breathe through his nose, and this makes him extra crabby. I can understand that... So, I have been sticking on the BREATHE-RIGHT strips. He loves them. One thing is for sure, he adores air. After he wakes up from sedation, he takes the oxygen and just sucks it in with an "Ahhhhhhhhhhhhhhh!" He acts like it's the most delectable meal he has ever tasted. When he feels like he can't get enough of it, he takes the oxygen nodules out of his nose and sucks it all in through his mouth. It's an advanced form of booger eating, I guess. I kid. But really, he just loves to breathe. I love that he loves to breathe.

Anyway, I am force feeding and force hydrating him. He shakes his head and says "NO!" towards food and drink, but thankfully he has moments of wanting to eat and drink. He doesn't have a fever, so now it's just a matter of keeping him hydrated. He dry heaves a lot at night, and I'm assuming that's from all of the mucus. I'll check in with the clinic tomorrow again to see if there is anything else I need to do. Please pray for a quick recovery and that this doesn't mutate into anything else.

My sick little man.

Breathe-RIGHT (but still a little Crabby-Crabberson)

Gideon sucking on his oxygen tube (that's supposed to be in his nose)...Ha!

Regina Spektor - My Dear Acquaintance (A Happy New Year)

2011-01-01T21:03:00.000-05:00

Just Keep Swimming!

2010-12-28T23:24:00.000-05:00

We are connected to one another in ways not even imaginable just a few short years ago. One status update on one Facebook account can make me laugh for awhile, cry, or even add to my worldview. I am able to see a friend while talking to her on Skype. I can connect with countless people in an instant. I don't know if I would be as grateful for these technological breakthroughs if cancer had never poked its icy fingers into our family's lives. I can cry with other moms battling with their child by simply reading blogs. I feel understood. I feel their pain, their anger, their awe...all of it. It is crazy how I am comforted by the like-minded bafflement we parents experience when we see our own flesh and blood battle for their lives with more strength and positivity than we thought even existed in super heroes, let alone our babies. You are no longer strangers to me, but family. I pray for your little warriors as well as my own everyday. That will never change.

I feel like supportive strangers are snowballing into larger numbers and prayers are lifted in heftier doses every single day. I can't tell you how blessed I feel by this. Just today a friend sent me a link to an event created by an absolute stranger; someone I have never met. She created an event called "Fishies for Gideon" urging her college friends to donate blood on Gideon's behalf. Pausing for a tear break. Hold on, please........................................................................................................................................................ Breathing...and......back.

Wow.

I'm getting frustrated with myself for being so shocked by generosity and love....still. After six months I am still a granitified (Glinda the Good Witch makes up words with wild abandon, so shall I) deer whenever anyone exposes their gorgeous soul to me. Gideon never is shocked. He waves at the sweet man who bought our lunch at the hospital like, "That was great of you! Have a nice day!" while I stand there dumbstruck and ready to sob myself into a puddle of hysterics. Still. More beauty abounds! You are everywhere. I see you. I feel what you are doing, and you are softening hearts with your actions (just like that commercial...the one with the woman who stops someone from crossing the street when a car came buzzing around, and that in-turn made that person hold the door of an elevator...good begets good...).

Speaking of beauty, Katelyn Drake came over to drop off more NO SHARK shirts for the Clinic staff and also the money raised at the ORANGE OUT she organized. From just one basketball game and after covering all of the expenses, I will be dropping off six HUNDRED dollars to our Clinic tomorrow! WOAH. Woah. THANK YOU to all of you who were a part of this. Again, you have amazed me.

Back to the GOOD FISHIES... Gideon has been anxiously waiting by the door each time I go out for the mail. As soon as I walk in he squeaks, "IS THERE ANYTHING IN THERE FOR ME?!" Ever since I posted this post, Gideon has gotten a fishy in the mail quite often! We are up to 15 fishies so far...That's 45 people who have benefited from receiving blood in my little man's honor. If you have donated and have not sent a fish just yet, please go back to this post for the templates and our address. I also want you to know this: Every fish sent is absolutely cherished by Gideon. He fawns over every single one...the glittered and the penciled, both. If you are not artistically inclined, your fishy will still be loved and given a home in Gideon's Sea of Loving Souls, I promise. We are a no-flush-fishy rescue, and each one is fed by Gideon's giggles of glee.

With that, I will post Gideon's fishy arrival of the day today. I have a really high-pitched voice. Sorry about that. I guess you all already know that, it's me that's startled by it every time I hear myself speak. I can't help it. I get all excitamatic (another Glinda-inspired term).

Please note: Gideon is psyched at the beginning and then is all serious at the end. Just as I stopped recording, Gideon asked how the mail system works. He didn't ask it like that, he asked: "How do these fishies get here?" So, his little wheels are turning and his face is all serious. We went back to HOORAY! soon after I explained. ;)

A pictorial Christmas...

2010-12-27T22:58:00.000-05:00

New day

2010-12-20T09:56:00.000-05:00

What a difference a day makes. THANK YOU, Pastor Kevin, for speaking right to my heart when you prayed for the peace of God to surge through the souls of those "overwrought and overwhelmed moms" -- I needed that, and I felt it. The peace, that is. I felt the peace, and let the stress dissolve at the altar.

THANK YOU, God, for that mama instinct that says go-check-on-your-baby and I made it to Gideon's class just in time for him to throw up -- a lot. I think there is a sick-inducing chemo in the mix right now. It wasn't a virus, it was the chemo. Thanks, Don and Gloria for helping!

Thank you, DEB MILKA, for going to see a chick flick with me yesterday. I adored your company, as always. I also love the fact that you embrace my idiosyncrasies. I know we are a block away from Crossroads, but we would not have seen the icicle lights of downtown or the gloriously ORANGE bathrooms of The Rave.

THANK YOU, Gideon, for being more sped up yesterday as a talker, and not as an aggressor. On our way home from church, Gideon requested a pizza (minutes after the throwing up and second episode of throwing up in the car). He said, "Pizza starts with a 'P'! Popcorn starts with a 'P'! Look, I see a 'P' in that sign! Look! Another one! That P is everywhere.....even in the toilet!" HA! An itty-bitty three year old voice makes this joke even funnier. Even funnier is the fact that he made it up on the fly.

I cannot believe his comedic tendencies. I have a funny prodigy on my hands. When Tom got home, Gideon said, "Daddy, people don't need real guns since we all have...........BUTT GUNS!" and then he bent over and let it rip. So, the toilet humor is under wraps. He will break into newer genres as he gets older, I'm sure. To be honest, though... Toilet humor is still the funniest to me. I don't think that'll change. If you don't laugh at a fart, I don't trust you.

Gideon also has been lovey yesterday since he just is so puke-ridden. So, we have been cuddling and loving. Then, he wrote me a song (heard below), and it made me cry. It soothed my pressured soul after feeling like the boy absolutely loathed me the day before.

This morning we have not had puking. His hands and body are shaking again, but he is happy! He made it into a joke. Imagine that. He said, "Watch, mommy! I keep missing my mouth!" and with each shake he let the forkful of food careen into his cheek. Sweet mess. Gideon even shared his sausage links with his brother... Peace, peace, peace. What a way to usher in this happy forthcoming of Christmas.

(Okay... I spoke too soon. Gideon threw up. We are rocking now. Please pray his tummy settles today. That's the prayer request du jour.)

Steroids........................

2010-12-18T20:23:00.000-05:00

You know what I want to blog about? I want to blog about all of the fantastic things that are happening and HAVE happened. Mostly, the fact that Gideon's numbers went up enough to receive the Methotrexate spinal chemotherapy and the Vincristine push. We are starting our next phase, and it looks like this: one week of Decadron (steroids), 6MP chemo daily, Methotrexate chemo once a week, Bactrim three days a week, and any indigestion/tummy meds he may need to deal of all of these toxins. He can do this! We can do this!

If it sounds like I am trying to cheer myself into a rah-rah-rah induced state of euphoria, you're right. The steroid raging is the worse it has ever been. Ever. Maybe I have blocked it out, but I don't think so.

I have to be near Gideon at every moment of the day because there is no telling what he might do. Brody was coloring a detailed puzzle that is decorated first, and then taken apart to reassemble. Gideon tore a marker out of his hand, scribbled all over his creation, and ran off. Brody had been working on this project for over an hour and he was absolutely crestfallen. He yelled, "You RUINED it Gideon! Why would you do that?" Gideon's answer? Beating Brody over the head with a Hotwheel car. I pulled that boy off of his brother so fast. Unfortunately, he is a strong little guy and kicked me in the face. It was my turn to have a bloody nose.

The saddest part is the guilt Gideon feels once he realizes what he's done. It's difficult to console him as his body shakes with silent sobs. Tears just pour, his mouth is agape, and all he can do is suck in air. How do I do this? Anyone have any pointers? I don't want him to feel like his behavior is acceptable, but he really is not himself. I bet I would be a MONSTER if I was given what he's given.

Today was a cling-on day. He asked to wear jammies all day. He wanted to lay on me. He is also complaining about his fingertips feeling like there are little shots "eating them"... He complained about this with his feet the last time he had Vincristine, and at that time he wanted to wear shoes too tight to help with it. Today he wanted me to squeeze his hands.

At nap time, I didn't wrap him in his blankets the way he wanted me to. He tried to explain this new form of bundling, but I guess I wasn't getting it. He started to scream in a way that scared me into feeling like I should call a priest and get an exorcism underway, STAT. It was intense. I tried to deflect attention. I tried to make a cozy blanket fort. I sang. I danced. The scary screams only escalated, followed by punching me and clawing me. I held his little arms and said, "Breathe! Breathe!" I let him go once he started to calm down. And then, it got crazier. Gideon started pounding on the window with his fists and screaming, "Don't LOOK at me, SAAAAAAAAANNNNTTTAAA!" over and over and over. "I don't want Santa to SEEEEEEEEE me!" and he continued to flail and cry.

He then collapsed on his pillow in his trademark brokenhearted cry. "I'm on Santa's MEAN list!" he wailed. Oh. Sweet baby. Thankfully, "Santa" called soon after, assured Gideon he still loved him, asked him to say sorry to mommy to make up for it, and Gideon was better. He fell right to sleep.

The nap was a 30 minute bliss-inducing silent stretch. I laid on the bed and just stared at the ceiling. I drooled. I turned off my brain. So, my house looks worse than any frat house I have ever witnessed, but so help me, I could not move.

Gideon woke up HUNGRY. Hi, steroids. He asked for a bagel. A Big Apple bagel. I tried to make the bagel just like his favorite bagelery (as compared to a "bakery"), but when he took a bite, he glared at me and barked, "This is NOT a good bagel for a Leukemia boy!" I had to smirk a little at that comment. Although annoying, it was a wee-bit cute. I asked why and he said, "It tastes like POOP! This is a POOP BAGEL!" and then he threw it at my face. The boy has good aim.

Tom and Brody were skiing all day and then went to a hockey game after that. Anyone want to break me out of here tomorrow? Please? They have another hockey game to attend tomorrow, but they may have to cancel all for mommy's sanity.

I always feel guilty when I complain like this. Gideon's cancer is under control. He is responding beautifully to the chemo. He has ENERGY and vitality. There are too many mommies with babies who are not doing even fractionally as well as our boy. I realize we are blessed in all of this, but right now I'm all wah-wah-wah. Let me wah. And, be my getaway car driver, PLEASE.

ORANGE OUT!

2010-12-15T18:49:00.000-05:00

Orange is my new favorite color! THANK YOU to all of you amazing students, families, and staff members who came out to the ORANGE OUT basketball game last night. I even had former students come home from college to show their support... I love and miss every single one of you.

KATELYN DRAKE: The girl responsible for all of this... I can never thank you enough. I can never express my gratitude for your giving and selfless heart. Your future in nonprofit charity work is going to change the world; I just know it. I'm excited to witness how you will improve our future (you already have).

Making beautiful memories is my favorite pastime, and one surpassed all of my best expectations last night. As Kirt Brown announced Gideon's name at halftime to come draw the winning tickets (for ICE watches donated by Medawar Jewelers), the crowd on both sides of the court stood up cheering for Gideon. He had a mask on, but the boy was beaming.

As we crossed the court, he said to me, "Are all of these people wearing orange because they want no more Leukemia sharks?"

"Yes, Gideon," I answered over the cheers. I have no idea how I didn't lose it since tears were welling up in my eyes.

"That's good, mommy! Nemo is orange," is how he answered.

I'm locking that one in my heart forever. His simplistic and staggering view of this world makes me want to wear his lens of life on my eyes until my last breath.

My list

2010-12-13T14:47:00.000-05:00

Things I have recently discovered:

1. I have a hard time ripping myself away from the fantasy of a musical. The day after said event, I dress up like one of the characters and sing instead of talk. Not kidding. Every single form of communication with my boys has been altered lyrics to the tune of "Defying Gravity" today (only at home, though...so I guess I still have a fingertip in reality...). I kid you not. Also, I'd like to thank my closet for being so very sequin-stocked. Good thing my boys think I am famous. They really don't mind, and Gideon even cut out flowers to throw at my feet. Mmmmmm... This needs to last.

2. When I was told Gideon's counts weren't high enough to get more chemo today (his white blood cells are too scarce), it kinda felt like I failed a major exam. An exam I really, really studied for, too. I know it's not anyone's fault or that I truly failed, it's just that sinking feeling in that moment. Thursday we will try again with the chemo. Thank goodness for retakes.

3. I used to swat my boys' fingers away when they pointed at anyone with a disability, or an enormous mole on their nose, or someone wearing something odd. Then I'd hiss, "SHHHHH!" and almost cover their mouths. Today I witnessed a mom do that when her little one pointed at Gideon and yelled, "WHERE IS THAT KID'S HAIR?" Gideon and I were at the foodcourt getting some grub at the hospital. I'll be honest: It feels better on my end as I felt more sorry for that crimson colored, mortified mommy than I did for Gideon. It's not a secret he's bald. He knows. It's okay. I had that wow-I'm-on-the-other-side moment. I was all, THIS is how it feels... Weird, and not at all painful!

4. I found myself pouting this morning as I woke up at the break of dawn to get my kids ready for the hospital. Why? Because the REST of the world had a snow day and I DIDN'T. Hmph. There are no chemo snowdays. Wah-wah-wah! Never have I been on this side, either! On the upside, I would still be in my jammies and not wearing a fabulous Glinda-like headband right now and sparkle eye shadow.

5. Since Gideon's counts are so low, he will be at the basketball game during half time only (when the drawing occurs for an ICE watch). Brody and I will be there the entire time. I hope you can come out to Mattawan High School TOMORROW at 7:15 in your orange! (Please? Thank you.)

6. Taking ONLINE courses is NOT for me. Seriously, I am having a real hard time getting motivated to do anything. I guess that shows my immaturity in needing extrinsic motivation: like people.

7. I baked you some brownies, but somehow they have disappeared. Sorry.

Hopelandish

2010-12-12T00:48:00.000-05:00

I don't believe in accidents anymore. Not one tiny iota or single dust particle floating in front of the sun-drenched window do I think accidents occur anymore. Mistakes may, but not accidents. And no, they are not the same.

We have soundtracks for every single step in our lives. They are musical soundtracks that I play for different situations. It's like a movie in this house, only we have a wider variety in our musical spectrum than the Jaws-like crescendo of instruments and clashing of ominous symbols. Lately, we listen to our "SONG TWO" in our Morning Soundtrack quite a bit. It is a song written in Icelandic by a band from Iceland (I guess that was a little Captain Obvious of me...) called Sigur Ros. We usually spin in circles to this song. Lots and lots of circles until we have to lay on the floor to get steady again. Yes, this has been a favorite, and the boys ask for me to repeat it because they KNOW my weakness when it comes to twirling and this particular song. Also during this time, we have been experiencing more nosebleeds from our body sensitive Gideon. The nosebleeds aren't related to the spinning since they don't happen during or after the fun, but you will see the connection soon. (By the way, SUPERHERO Nurse Michelle gave us the tip to hold an ice-pack on the back of the neck when nosebleeds strike, and it WORKS.) Anyway, please remember these few popular activities of ours: SONG TWO, spinning in circles, rolling in snow (well, I didn't mention that, but now I did), and nosebleeds. Also, please note: we had no idea what Sigur Ros was singing about...not at all. (Tom and I did have the opportunity to hike in Iceland, and let me tell you, IT WAS OUR FAVORITE COUNTRY! If you are a hiker and love the outdoors...DON'T miss it! But we didn't even attempt the language. So, again...I had no idea what Sigur Ros was falsettoing about. Woah. That was another sidetrack. Again.)

Brody wanted to make a computer movie, and he picked this song. Once he made his portion, I looked up the meaning of the lyrics. I didn't want to post it if Sigur Ros was singing about something I don't support. Like laundry. Anyway, I found the translation and had to close my eyes in order to let my heart stop turning amazed flips. That warm Holy Spirit comfort set fire to my heart and I was thankful Brody chose this song and that this led me to finding out what it meant. This movie includes the lyrics to the song, and I think you will see why I no longer believe in accidents. Grateful, grateful, grateful.

(NOTE: There are "nose picking" pictures in here. They did not cause nosebleeds since they weren't the digging deep kind, it was the rest-your-finger-by-your-nostril-'cause-it's-funny kind. So Gideon's sensitive nose canal was by no means harmed in the creation of this movie. Thank you.)

I Whip My Hair Back and Forth

2010-12-08T22:44:00.001-05:00

We reside in Breakdown City over here. Tom and Brody tried to sneak the fact that they were going skiing this afternoon, but that Gideon is no fool. He knew what was going on and profusely asked over and over and over, "May I PLEASE go with you? I will ski with mommy! She can HOLD me!" That he thought me holding him while going down a hill was a good idea shows his absolute desperation. I had to be straight with him.

"Gideon, your platelets are low right now. You aren't ready to ski yet. Your body will get more hurt than most people's if you fall. You can ski when your platelets are up!"

Brody didn't like how I was explaining things to his baby brother, so he stepped in, "Gideon, you're like a light bulb right now and I don't want you to break, okay?"

With tears rolling down his precious cheeks, he squeaked out an "Okay." I told him my skis and his skis were hanging out together in the basement, talking about their next run, and that further helped him out. As soon as the door closed and Tom and Brody were gone, his little bottom lip started to tremble.

"LET'S PAINT!" I belted and jumped up in a way that would shock him into forgetting he was sad by my crazy outburst. Being borderline crazy helps in many situations, I have found. Gideon loves to paint. So, paint we did! We painted ornaments, and he was so adorably focused on the task. I should have taken pictures of him with his delicate brushstrokes, his intense stare, and intermittent evaluation of his work here and there. I was too into my own painting, though. We both get lost in creation, Gideon and I.

We had a KIDS satellite station on since Gideon got to choose our creative inspiration music. We have had 24/7 Christmas music on over here, and I think he wanted a little break. A song came on, and I kid you not: Gideon put his paintbrush down, looked at me with eyes that said, "You HAVE to be joking!" and then he said, "This song needs to be turned off, please." I asked him why and he answered, "She whips her hair and that's ALL." I think he meant, "She says 'I whip my hair back and forth' too much and it annoys me." I started to laugh and turned off Willow Smith's song (Will Smith's daughter. AND...I just blogged about Will Smith. CRAZY connection, huh? I didn't think about that until now).

As we sat in the quiet, Gideon started to sing his own song. I asked him to sing it a little louder, and it came out "I WANT MY HAIR!" over and over and over. Seriously this kid makes me lose weight from LAUGHING. Of course, I gain it back by eating what is leftover on his plate, but STILL! I think he got his inspiration from Willow, although copyrights should not be infringed since his notes and timing are completely different than Willow's. Also, it's a cancer kid singing about wanting hair. I think he'll be forgiven. :)

We started the afternoon with tears and ended it with song. Not too shabby, huh?

So that you can follow this blog post (in case you haven't heard this song):

And, now....Gideon's song:

The stars may not be visible, but they are there!

2010-12-05T13:13:00.000-05:00

I sometimes daydream that Will Smith will show up at my doorstep in a black suit, Wayfarers covering his eyes, and say, "Look into the light!" Then ZAP! My memory is erased so I just decide to drive to a beach and lay there. Letting the sun soak in and my mind relax, I fall asleep on the sand with the lulling waves as my only distraction. I miss that carefree la-la-la attitude I remember like an old friend I can't find -- not even on Facebook. The capability to silence my brain completely and to feel that holy peace of stillness is difficult these days.

It hit me the other day when I was going to the grocery store. I remember walking into that place not long ago and thinking, "I could pick anything! ANYTHING to make for dinner tonight... OooOOoo. Food adventure!" and then I'd peruse the veggies and fruit and just allow the sensory overload of all of their fun colors and delightful smells rush over me. The soundtrack was a continuous whistling in my head, and lightheartedness was commonplace for me. It was so easy to smile at strangers.

This last time I visited the grocery store, I had to get soft pretzels (the only thing Gideon is eating right now) and I was on a mission girl. Even though it's still the same festive place and I'm by no means gloom-and-doom, there is still a lodged rock in my soul that will not budge. It's not a Grinch rock that makes me glare and feel angry, it's just a heavy weight that keeps my normally helium-filled heart grounded in the reality of it all. Even when I don't acknowledge it, it is still there. I think it's name is "cancer," this boulder.

I didn't want to stay away too long incase Gideon needed me or got into one of his moods. (Did you know that lack of blood causes one to get very moody? I had no clue. Now I do.) As I waited impatiently in line, I really despised the way the cashier kept wiping her nose with her HAND. That's right: I got out of that line (even though I had less than 5 items) and went into the long one full of people stocking up for the week because of Booger Girl. Then, when I got into my car, I used sanitizing wipes on every article I bought. Yes. Carefree. Will she ever come back to me?

Also not too long ago, I adored giving my boys a bath. We rigged up a little basketball hoop and played "DRAIN IT!" I know! That pun-a-rrific name fits well for bathtub b-ball, huh? The winner got to pick who was to be washed first. Now I make the boys take separate baths since Gideon's numbers are low in fighting infection of any kind. I'm not risking anything.

Last night, I put Gideon's bony body into the water. He gets cold easily these days, so I had the heater cooking in there and my mask still secure over my mouth. I noticed more bruises on him (a sign of low platelets), and his eyes seemed more sunken in to me. I blamed the lighting and the fact that my bathroom is Kermit green. That'll make anyone look sickly, right? But, still. He was bruised and a walking skeleton. I was feeling that weighty feeling more than ever. Then, that sweet child nudged the boulder out of the way and I felt a burst of my balloon heart again. Since he could talk, Gideon has asked the same question the moment he was placed in the bath. He said it again last night, "Mommy... I don't want you to wash my hair, okay?" This time once the familiar words escaped, he started laughing. I could see his ribcage practically guffaw right out of his body with every shake of hysteria. Once he caught his breath he said, "Oh! Well. I guess I HAVE no hair. Neverrrrrrrrrrrmind." Oh. Thank you, weightlessness of the sillies. Maybe you had to be there to experience the beauty of this moment, or maybe it was such a fantastic moment due to the sadness I felt right before it happened. Perspective does that. Gideon makes fun of his cancer without even realizing it, and it just....helps. It helps us all.

That's one thing about being a mom of a child with cancer: things are either horrendous or serenely perfect and beautiful. I have experienced no middle ground in this new world. I think the horror of cancer makes the smallest moments that much more blissful. Normal isn't normal -- it's heaven. I have also experienced, as you can tell by this blog, the pinnacle of humanity and the giving human spirit that surrounds us more than we know. Why is it so obvious when horror strikes? Why does it take disaster to expose beauty? I see it everywhere now. No, I may not always have a carefree spirit these days, but my newer balloon that appears is now made up of pure awe. Awe takes me higher than carefree, so I need to focus on the blessings behind the curse.

My heart is in complete awe with the way Gideon is responding to treatment and the blatant daily reminder that prayers are being answered. Please pray that the bugulators of the season stay away from our immunity-impaired boy! What you're doing is working, everyone. Thank you. I think I may always sign out with a thank you.

(Is it just me, or do I always talk myself out of gloominess once I blog? This outlet is magic, I tell you!)

The best of the best FISHIES

2010-12-03T13:00:00.000-05:00

Gideon's numbers are bottoming out when it comes to his ability to fight infections/germy stuff. The good news: He has been healthy regardless of the gloomy low numbers. When it comes to my germs, it turns out I have a sinus infection. I will continue with my hand washing and mask wearing until it is kicked. Did I mention I'm claustrophobic? I am. I refuse to get panicky, though. Even if this murky mask steams up and makes me feel like I can't take deep breaths. Mind over matter. Mind over matter... Breathe in, breathe out. Breathe. If it keeps Gideon healthy, I'll go into a small box that is locked, if I must. Gulp. I'll admit that I run outside every once in awhile to just breathe air without the mask. Ahhhhhh.

The bad news: We were told we cannot ride "The Polar Express" this weekend. It was a special event for Make-a-Wish kids... complete with hot cocoa and Santa. It's okay. We'll go on a train ride another time. I just am not telling Gideon. He was looking forward to it. We'll make other special memories in our house this weekend, instead. I'll think of something. Christmas time is magical even without the Polar Express.

Speaking of Christmas, I have been getting emails asking if Christmas presents can be sent to the boys. Even people we have never met have sent these emails. I am, once again, misty about the whole idea of strangers loving on us as you have. I have a request, though: Is there any possibility you would be willing to send an alternative gift? There's a story to this:

During Gideon's latest blood transfusion(s), he asked what kind of "good fishies" he was getting pumped into him to fight the cancer sharks. I told him they were from someone else's blood. He asked how they worked, and I told him how very good people go to blood drives, get a shot, and get their good fishies taken out of them since they have enough for themselves and to share with other people, too. Here is the miracle of the story: Gideon looked at me and said, "These are someone else's good fishies? They are giving them to me? From their own blood? I'm getting someone else's blood?" I answered yes to all of these questions. Gideon got very quiet, stared at the bag full of blood and just remained staring for a few seconds. He then said, "These are the best fishies I have ever gotten, then." I asked him why and he answered, "Because someone who has a happy heart got a poke just for me! Wasn't that nice, mommy? These fishies will get those sharks for sure!"

So, here's my request: Please donate blood in Gideon's name this holiday season. Please fill out this fish template or this one with your name, your blood type, the date you donated, and a message for Gideon. Then, send this fishy to Gideon as his Christmas gift. He understands more than any normal 3-year-old the beauty of giving. We will make a fishy line to hang around his room and we'll add each fish as it swims into our mailbox. This is the only gift we'd like you to send, please. I can't think of a better present! Our address: 6685 Pleasantview Drive, Portage, MI 49024.

THANK YOU for all of the love you have been pouring on us.

SeeeeEEEEEEEEEEEE?!

2010-12-01T19:39:00.001-05:00

All day long I have heard my mom's voice in my head, "SeeeeeEEEEEEEE?" This was the one word she used instead of what she really meant by it: "See what happens when __________?"

"Mandy! Stop jumping on the bed! I don't care if you are wearing your Wonder Woman Underoos; they will not stop your fall."

BANG! BOOM! OUCH! (That was more retro Batman than Wonder Woman, wasn't it? But I'm just recounting the sequence of events.)

And three stitches later...

"SeeeeeEEEEEEEEEEE?" mom said this in a low and grovel-like pitch at first, and then as the word gained momentum, it would slide up three octaves. The more severe the situation, the louder and more pronounced the "SEE?!"

I completely made fun of my germophobic family members in my last post. In fact, I asked them to stop reading all together due to my mall trip. That was not nice. I am now among your ranks within this strange and uncharted world of Germophobia. Who would have thought the girl who encouraged playing in dirt and rolling around in McDonalds Playland would turn into what I am today? Life. You're one crazy boardgame, I'll tell you what. SeeeeEEEEEE?

I had a scratchy throat this morning, and this came after feeling like the life was completely drained out of me once I got home from the hospital last night. I panicked. Gideon's immunity is lower than it has ever been, and I was afraid of what this throat might mean. And, believe me: I imagined it all. So, I shipped the boys off to grandma's, went and got a strep throat test (it's negative), bleached every bathroom and disinfected every doorknob. I even opened windows and let the fresh snowy air blow for a few minutes. I am now wearing a mask as seen above, carrying hand sanitizer in my pocket, and washing my hands until they are raw. My doctor even prescribed me an antibiotic without even knowing if it will help. And, the craziest part is that I'm actually taking it. I have always been an anti-medication girl. Now, cancer turns the world upside down and I'll swallow any pill if it lowers the risk of harming one of my babies.

A cold is just a cold to me, but it is so much worse for Gideon. I am already terrified that I passed on the germs to him. I have been getting teary all day remembering our time together at the hospital yesterday. He was connected to my shoulder or lap the entire time we were there. If I was coming down with this then... ugh. I have major mommy guilt right now. Please, please, please don't let him get it! Not when his body is so incapable of fighting it.

Gideon and I were at the clinic from 9:30 to 4:30 yesterday. Once again I watched as platelets from a stranger ran down the tubes and pumped into my baby's veins. No matter how many blood transfusions I witness Gideon getting, I will never get used to it. This immense heart-in-throat gratitude towards an absolute stranger who is saving my boy makes me feel like I probably could fly...with or without the Underoos. Whoever you are, donor extraordinaire, I love you. I hope you can feel my love coursing through the atmosphere straight into your heart with every millimeter of your life-sustaining gift that drips into Gideon. Blessings to you, B Positive!

Then came a bag of red blood from another nameless (but saintly) stranger. Gideon fell asleep on me as I chatted with other moms waiting on their children getting treatment. I need to say this: It is rare for Gideon to nap in public. It is even more unusual for him to nap when there are people around (his personal audience). It is that nap that makes me worried to the point of feeling the need to pace nervous circles around my house. His precious little face rested on my shoulder for so long. And when I talk with enthusiasm, as my students can attest, I spit. Not alllll the time, but sometimes. Oh. What if a droplet of spit landed on his lips and he licked them? I feel panicky and worried.

The boys returned from grandma's today and Gideon's cheeks are still rosy from his recent blood rejuvenation. He is not sneezing, acting cranky, not anything...yet. Please pray it stays that way. In the meantime, I will be in a mask and practically in a Hazmat suit until this bugger bugs off.

I have also been drinking gallons of "Get Happy" tea (BEST stuff EVER! Colleagues, this is the tea I almost forced every teacher to drink last year... Maybe it's placebo, but it makes me happy!) from World Market out of my Great Grandma's teacup. For some reason, that cup is more healing than any other. I have also been listening to a song my colleagues are also familiar with since I played it CONSTANTLY right before school started last year. It makes me calm. It makes me feel like everything will end up okay. So, I will post it. "One day" this cancer will be a thing of the past. "One day" I will not have to wear a face mask when my throat is sore. "One day" both my boys will be grown ups and will take care of me, instead. One day....but I will still try and enjoy today without worrying about what might be. There are too many maybes and I am most definitely not in control. I've done what I can, and the rest is in God's hands.

Peace and love to you all...especially those of you catching snowflakes on your tongue or stringing up your festive lights. It is absolutely gorgeous out there!