As many of you know, after months of every six-week-scans, Chase was granted a three month reprieve which will be up in a few short weeks. March has been an amazing, breath-taking month and we’ve been honored to be a part of several St. Baldrick’s and Lurie events already this year.
One of our favorite events has been visiting schools in our district for shave events. Watching children donate their hair for other children takes my breath away. There is no guile, just love and caring with the greatest commitment. The first school we visited, Chase had determined to say something but in the face of the entire student body, staff, and parents, he decided to stay quiet. I can’t blame him – I was a little terrified too. However, last week, at our final event for March, he opted to speak and in a gym full of children, staff, and parents, he found words about St. Baldrick’s being a special thing…and then, simply, this tiny 5-year-old with a microphone in his hands voiced the best words: “Thank you.”
In some ways, March has really been a month about hair. We’ve had the shaving events including Aidan’s shaving, and for the first time, Chase spoke about not having his. It was “crazy hair night” in the kid’s church programs and while Aid’s full, thick hair easily stood on end with a little gel and styling, when Chase asked for the same style, he expected the same look, and instead, he looked a little like Baby Jack-Jack from the Incredibles – with a single tuft of hair off the crown of his head. We all thought he looked awesome. We all thought he knew. It wasn’t until that night, as he looked in the mirror, that he fully voiced and realized his difference in this area. “I want my hair to look like Aidan’s! It doesn’t work! [he smacked his head with the palm of his hand] It’s just my same, stupid baseball. Don’t talk to me about it right now. I’m very angry.” This was the first time Bob and I have ever heard Chase voice discontent with his differences. It was both heartbreaking and impactful for us as moments like this one reiterate that we made huge medical decisions which will never stop greatly effecting his daily life.
It was during these same weeks that I received an email from Chase’s school about hair. Kids in his class were beginning to ask more questions about Chase and why he didn’t have hair like them, so, last week, we went into the school with a program designed to educate and answer questions and the woman read a story about a boy named Billy, and she brought a bald doll on whom all the children practiced cleaning central lines, and then Chase got up and showed his class some pictures – pictures you all know by heart – of Dr. Lulla and surgery days and hospital days, and he explained each one in his own way and the kids sat and listened. And then, because they’re five and they’re wonderful, they fixated on Chase getting to do special things in the hospital and when we reminded them that hospitals try and make it special because Chase couldn’t do “normal” things like swim and be outside when he was having chemo, it reminded them how much they all like to swim and be outside and though it turned out a little like nailing jello to a wall, it was precious and real because Chase stood up in front of them and talked about a part of who he was and is.
Courtesy of Lurie Children’s and LaSalle Bank, March also brought another first for Chase: a Chicago Bulls game. I wish you all could have been there the minute he stepped into the crowd on the edge of the box and took in the fullness as a visiting choir sang the national anthem, sound and song echoing off the rafters as the lights glowed around. He’s learned how to wear a hat to cover his ears which greatly decreases his over-stimulation and helps him enjoy large, loud moments and his eyes were huge and awe-filled as he turned and screamed “This is awesome!”.
It was also during this time that Chase lost a cancer friend. They only met a handful of times, but Rusty and his family have always gone before us and encouraged us so. And that losing season brought up lots of questions for him again. One afternoon, the day before Rusty passed, Chase “composed” a message to him on the computer and then we sat on the couch and talked and he asked if he was going to die soon too because he has cancer and chemo and talks to Dr. Lulla like Rusty. Some day, I will write about this conversation, but today, I can’t. There were lots of tears that day – for us, for Rusty, for this broken world – but there was also joy in talking through this not being the end. To be able to speak about these things was bittersweet and we count ourselves beyond blessed to have known Rusty and been encouraged by his story.
Finally, this March time has been an up and down time with some anxiety as Chase has had some health issues that we’ve been monitoring. He’s complained of headaches and frequent stomach aches, failed his eye exam, and then, started tripping and falling quite a bit. It became apparent within a few days that he had an issue with his ear, and while that has now cleared up and he seems more steady most of the time, we continue to watch his sleep patterns, appetite, and speech, as he hasn’t been himself at times – to the point of effecting his school schedule. All of these symptoms can be normal, or they can be very not normal. Which is both comforting and deeply terrifying because we never know when he can’t remember his birthday if it’s because he’s five or because he has cancer. We know that the MRI is soon and that if it’s a cancer concern, his symptoms will become more apparent. And so, as always, we wait…one part scoffing at how silly and over-concerned we feel, and one part with the silent “what if?” question.
But for today, in this moment, he’s fine. In fact, I recently found him hiding under the desk in the living room with his father’s electric razor trying to give himself an even more bald head. So, we close this crazy month and look forward to more Spring and the weekend celebration that life is ours and death has no hold, and we take each breathing day…
…moment by moment.