Saturday, December 17, 2011

SUCH a pill.

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. :)

Tuesday, December 13, 2011

Take my breath AWAAAAAAY...

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.

Sunday, November 27, 2011

Maestro Gideon

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...

Wednesday, November 23, 2011

Thankful...Right this very second.

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!"

Monday, November 21, 2011

Hospital Again

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!

Wednesday, November 16, 2011

Gideon's Fever

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.

Sunday, November 13, 2011


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!

Sunday, October 9, 2011

Emotional Weekend.

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.

Sunday, September 4, 2011

Madly in love with Mattawan...

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.)

Tuesday, August 16, 2011

Gideon's JOY

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

Monday, August 1, 2011

DOUBLE Special Mattawan Blood Drive!

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.

Saturday, July 30, 2011

StubbornT Port

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.

Sunday, July 24, 2011


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.

Sunday, July 10, 2011

Gideon's RACE DAY!

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!

Thursday, June 30, 2011

New Family

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.

Monday, June 27, 2011

JULY 9: Mark your calendars, please!

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!

Sunday, June 12, 2011

A Year Ago Today...

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.

Saturday, June 11, 2011

Not a Moral Dilemma...A Mom Dilemma

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.

Saturday, June 4, 2011

Don't Cry, Baby.

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?

Thursday, June 2, 2011

I AM Bobbette Ross.

"...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!"

Thursday, May 26, 2011

Always, Always...

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.

Sunday, May 22, 2011

A Beautiful Morning!

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.

Thursday, May 19, 2011

CureSearch: THIS WEEKEND!!

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:
- 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

Tuesday, May 17, 2011

Because I said so.

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, 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.

Monday, May 9, 2011

Porcupine Toes

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.

(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)

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!

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.)