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.)

Wednesday, May 4, 2011

Walk this Way (please)

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 ( 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. 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.