You’ll have the opportunity to support St. Baldrick’s funding of clinical trials and directly impact the health and lives of kids (like Chase) who are battling cancer. (plus…hang out with me, of course!)
“You’re welcome to play in here until the nurse comes to get you.” The woman from the front desk wore a big smile and her eyes were understanding as we stood overwhelmed on that first day.
Radiation. The decisions had been irrevocably made. Chase needed further intervention to survive, and so we stood in this place and prayed against all odds and all side effects that it would work and work well. Oh, but my heart still hurt. Because some decisions still hurt even when you know they’re right just because they’re so crazy big.
It’s a good thing God knows all the things that I do not.
The play room was a small rectangular space with a fancy plastic kitchen set on one wall, a crafting center and school area against another, several shelves filled with toys, books, and games, and on the last wall was an entertainment center with a TV and several gaming systems – all of which Chase wanted to play and none of which he knew how.
But my interest was immediately drawn higher to the top of the center, where several poster boards and papers were propped. They were mostly thank you cards covered in children’s handwriting and colorful pictures, each one expressing heart-wrenching messages of thanks for life-saving treatments. But there was one piece in particular that held my attention.
It was a large, bright poster display with row after row of pictures. In each one was a beautiful little boy with dark eyes and a magnetic smile. In most of the pictures, he was accompanied by an equally beautiful woman whose perfect smile and weary eyes spoke volumes of cancer motherhood. I knew that look. In other pictures, there were people who appeared to be family members and sometimes even medical staff. The one constant other than the small boy in the center of each, was what they were doing. For, in every single picture, they held up hands and fingers (however many it took on the given day) in a gesture of marking time: day 1, day 10, day 22, etc… On that one bright board, they had wonderfully documented and counted each day of his treatment in the center.
And then as my white and weary Chase busied himself with trucks on the plush carpet at my feet, I studied the progression of the days and treatments – from the beginning with hopeful smiles and lots of hair to the end with joy, weariness, and what looked like lots of burns and bald.
And with the pictures was one strong thought that crossed my mind: “If this is as bad as it gets – we can do it too.”
So I held the image of the beautiful boy and his mama in my heart and every day as we went back for another treatment, and Chase grew increasingly weak, I’d quietly look to the corresponding day on the poster board and then look at Chase and remind myself that we could keep going because they’d survived too.
I now know that the boy’s name is Isaac and his life changed with a headache when Chase was only a one-year-old playing in the backyard. Isaac would finish his road through radiation a little over a year before Chase ever started. And as Chase’s 2015 ambassador year came to a close, we learned that Isaac would number among the new five who stood for 2016.
The label on Chase’s chart reads Atypical Teratoid Rhabdoid Tumor, and Isaac’s reads Medulloblastoma, and they have yet to meet face-to-face, but most days, I just marvel at how their lives have intertwined and mirrored and how Isaac’s story has encouraged us so much.
And isn’t this why we share our stories – even the hard ones? So that someone, somewhere, can remind their own heart “If they did this, then so can I.” As we share our experiences with each other and seek to encourage each other, we pass a baton. I have run and now it’s your turn. I cannot run with you, but I will stand and cheer you on because I know the course you’re taking.
Yes! This. I know I say it all the time, but I don’t think we can ever hear it enough: There is beauty and wonder in our broken, interwoven lives and even cancer can be used for far greater, far better purposes as we run.
Moment by moment.
April and Isaac in the play room – Day #23 [photo credit: April Adamo Schippers]
Tomorrow, Brave Isaac will shave his head for kids with cancer. For more on this great event, click here.
Isaac and his mom, April have taken their own experience and turned it into a great gift for others! Today, you can visit Camp Out From Cancer – their organization that provides care packages to kids with cancer (Including a tent! Our family was thrilled!)
And as always, for more on Isaac, the other 2016 ambassadors and the amazing work done by St. Baldrick’s, click here.
Donna’s mom is a wonderful, colorful, gifted writer and for so many of us on the cancer journey, she quietly writes two words over and and over on our pictures and stories: Choosing Hope.
So today, as writers and bloggers band together on social media for – #DonnaDay – we choose hope for this family and all of our families.
Because this is one of the very real ways we can “chase the cancer away”.
For more on the St. Baldrick’s fundraiser honoring Donna, or to donate, click here.
For more on Donna’s story, told by her mom, click here.
Summing up a whole year is often like visiting a medical office for me: a dreaded, but sometimes necessary exercise. I hate the action of listing it all out because it can be so trite to gloss over and wrap up, but as soon as I start, all the painful, awful, funny, perfect, and wondrous things that have passed start washing over me and I never regret the exercise. One of the most amazing aspects of this last year has been Chase’s role as a national ambassador for the St. Baldrick’s Foundation, and this morning, in the last of the 8,760 hours of ambassadorship, we sat down early to reminisce over some of the opportunities: shaving his brother’s head, going into schools to meet with children and talk about cancer and chemo, getting to connect with so many people on something that has shaped us on such a significant level – to name just a few.
Memory is hard for Chase and he slumped down in the chair as I asked him what his favorite part of the ambassador year has been. “Can’t I just say that I love Dr. Lulla? He’s my favorite. Can I just say that?”
Chase with Dr. Rishi Lulla, a St. Baldrick’s researcher and Chase’s attending neuro-oncologist at Ann and Robert H. Lurie Children’s Hospital of Chicago. Photo credit: Jan Terry
“What about the time you made Aidan bald?” I laughed.
He slumped further. “Please don’t laugh about being bald. It hurts me.”
Reaching over, I picked him up and hugging him close, I explained that my laughter stemmed from his and Aidan’s precious hearts for each other, not their lack of hair. Never the lack of hair.
Photo credit: Heidi Peters Photography
And then he settled into it. “I did like shaving Aidy’s head. That was fun. And I really liked doing the Pin Guard tournament with Miss Jen at school with the firemen. And I think I liked whenever they gave me a microphone to talk to kids too. Those were my favorites.” He stopped and thought for one minute more, and than as is his habit, he interrupted his own musings. “Also, I think that . . . Hey, Mom! I have a great idea! I want to make cards for kids who have cancer and chemo like me! The next time we go to my hospital, can I take cards to my friends like my Mia and my Lucas?”
And with that, the time for memories were over. But isn’t this the point of sharing our stories? Of being an ambassador? Reflection that leads to action.For Chase, in this moment, it was wanting to encourage other kids. And over this past year, as more and more have looked to encourage and action has been taken – from grade schoolers growing out their hair all the way to a US Congressman signing the STAR Act – thousands upon thousands of dollars have gone to change the outcomes. This is amazing!
Talking about St. Baldrick’s at Madison Elementary
As 2015 comes to a close, we acknowledge the hard things that have brought us to this point, revel in the joy that keeps us going, are deeply thankful for all the ones around us, and look expectantly to 2016 for all that it will hold.
Good morning! I’m over on the St. Baldrick’s Foundation blog this morning, talking about Chase’s amazing meeting with Rep. Peter Roskam earlier this fall. Join me to read what the US Congress heard about Chase!
Here, I’ll get you started… click on the link below for the full post:
“Over the years, there have been long days and trying times that I want to get up and shout, “This is so hard!” Times when I want to pull out the soapbox for what affects my family, and talk about the lack of funding for childhood cancer research.
Most days, I don’t shout our struggle because we all have something to shout. We all struggle.
Which makes it all the more precious when someone else steps in to shout it for you.
One September morning, I sat in a school gym. The whole family sat in metal folding chairs forming a small arc against the front wall, while hundreds of children and teachers sat on the floor facing us.
The principal stood to welcome everyone in her beautiful red shoes. As she spoke, there was a murmur of activity in the hall outside the gym, and the crowd gathered at the doorway parted for a single, quiet man…”
![April and Isaac in the play room - Day #23 [photo credit: April Adamo Schippers]](https://i0.wp.com/www.chaseawaycancer.com/wp-content/uploads/2016/04/12115627_10207303122992704_468185666555167580_n.jpg)
