Last week Ben moved from the first phase of his treatment, Chemo Blocks, into the second, Maintenance. It is a significant change and one that is a little scary.
Nine months ago, when we found out Ben had t-cell lymphoblastic lymphoma, our lives changed. To say that the last nine months have been stressful would be an understatement of gigantic proportions. Ben has been on an ever-changing, intense chemo protocol, with all the highs and lows that come with it. He has been through allergic reactions, steroid side effects, seemingly constant nausea, strange food cravings (pickles, olives, and so much cheese), wild energy swings, low blood counts, multiple hospital stays, and, yeah, it is has been crazy. But, praise God, Ben is doing well, and he has moved into the second phase: Maintenace.
What does that mean? It means a lot less clinic visits. A LOT LESS. And that is taking some getting used to.
For the last ten months, Ben has had up to five clinic visits a week for infusions, injections, and blood draws. In this next chapter, that slows dramatically. If all goes according to plan, Ben will only need to visit the clinic once a month. I can't begin to explain how awesome that is. The clinic is an hour to an hour and a half away. It's a lot of time in the car and a lot of needles.
Ben is very, very happy to be at home. His little brother is super excited to have him back, but it is a bit freaky for mom and dad.
Since we found out about Ben's cancer, his blood has been monitored almost constantly. Doctors have listened to his chest and felt the lymph nodes in his neck at least weekly. He has been a bubble boy, under a microscope. And while that has been hard, there was great reassurance in knowing it was going on. The dramatic reduction in all of that activity is a little unsettling.
It is hard not to worry that the cancer we have been fighting, might begin to fight back. It is terrifying not to know. The rational person in me knows that there is only a minimal chance that that could happen at this point. Still, the irrational one can't help but worry because there is a small chance that it could happen.
I keep returning to Christ's words about worry in Matthew 6:27,
Can any of you by worrying add a single moment to your life-span?
I'm trying to relax and enjoy having my boy back. I am trying to trust that God is faithful and that the protocol Ben is on is doing what it is supposed to do. Maintenance is long. Ben will continue this phase until September of 2021. We will get used to it, and the scary will fade as time goes by.
And being in Maintenance doesn't mean that Ben is not on chemo anymore. He is. It just means the way he gets the chemo, and the intensity of it changes. Instead of infusions and injections, Ben now takes,
a daily chemo pill,
another one weekly,
oral steroids five days a month.
And, At his monthly clinic visit he gets a spinal infusion of chemo, and intravenous infusions.
It's still a lot, but it is less intense, and while he doesn't feel perfect, he feels better. His immune system will be suppressed, but it shouldn't crash. He can start to do some of the things four-year-olds do. We may even be able to remove the port from his chest, and once that is out, he can do swim lessons, sports, and even go to pre-school in the fall. That is amazing. It is also terrifying.
Change is scary. Getting stronger means letting go of some of the support, but our goal has always been a happy, healthy life. And this is just the next step.
God is faithful,
Chris