This past week, we finally finished up all of Chase’s follow up appointments from his January MRI. I never get tired of seeing him interact with his doctors. This time, he brought his St. Baldrick’s cape (a gift from the staff for his ambassador year) and his new Spider-Man mask. He ran through the halls saying “Zoom! Pow!” until he tired of people talking to him, and then, stripping off his costume, he lurked in the clinic doorway and made silly faces at any doctors or nurses he saw in the hallway. He also tried very hard to tell one of the doctors the new “knock-knock” joke he’d just learned from his kindergarten teacher (“Orange you glad I didn’t say ‘banana’?) and it was something of a fruit basket upset that was pure awesome and complete Chase. Life is never dull, that’s for sure.
Despite the good results of his January MRI, there are several continuing issues. After two years of stability, Chase’s hearing loss has gotten worse. Also, his growth has almost completely fallen off the charts – introducing conversations about the potential need for growth hormones. This is something for which Chase is potentially an excellent candidate, but something that also holds a very real threat of secondary cancers. (deep breath and lots of prayer…)
Before the end of July, Chase needs to do the following:
- Have two separate surgeries on both of his eyes to remove treatment-induced cataracts that will leave him with the eyes of a 45-year-old (even after the surgery)
- Have an echo to check his heart for chemo damage
- Have a bone scan to check the age of his bones (a prerequisite for the growth hormone discussion)
- Have a consult with his ENT to determine if he needs surgery to remove his ear tubes (they’ve been in for two years now and are showing signs of wear in his ears)
- Possibly have an ear surgery
- Have another audiology test to determine if he needs some type of hearing assistance
- Have blood work done for at least two of his doctors
- Have a full brain/spine MRI
- Meet with his neuro-oncology team
- Meet with his neurosurgeon
- Meet with his endocrinologist
And all of this is in addition to the behavior therapy consultations he needs, the IEP meetings, and the weekly speech, occupational, and physical therapy needs.
What a laundry list. I spent nearly three hours on the phone one morning just setting up appointments and coordinating with hospital staff and dates. Currently, my calendar makes me want to go hide somewhere.
The danger in making a list public is that someone always has a longer and more complicated inventory of things to accomplish. Maybe it’s you. Maybe you’re looking at my “Chase list” and thinking: “Wow, she has no idea…” – and you’d probably be right, but I made this list up and wrote about it for two reasons…well, three, really.
- Pray for us. The decisions ahead regarding growth hormone are not to be taken lightly and feel like some of the most weighty things we’ve talked about since the decision to radiate Chase’s brain.
- God is faithful. I need to remember this when I look at all the next few months will hold. He’s seen us through this far and He’s not about to stop now.
- Hug a cancer survivor. Today, please. This is what “survival” looks like. It’s a weird medical purgatory where you’re not really in treatment, but you’re definitely not out of needing help either. So hug them close and tell them they’re amazing because the battle wounds are real and never quite go away.
Tying it in: Chase’s appointment list reminds me of my life. Too much, too complicated, too crazy… How do I reconcile all the broken? How do I best understand what God wants for me? …for our family? This is the moment by moment nature of it all. I need to lean in; seek Him. Thankfully, He isn’t done with me yet. …with any of us yet. The list is in His hands; life is in His hands.
“And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6
Moment by moment…
{Below: some pictures from our clinic day at the hospital}
