Had another talk with Wes’ oncologist at this week’s clinic appointment about life after chemo. He will get his Hickman (central line) out on February 28th, when he is already going to be sedated for his monthly retinal exam. That will give him 4 weeks after his last round of chemo to get his final kidney function test, another MRI, and labs for the normal checking of blood counts after chemo.
Then the oncologists want to see him every 3 months for an MRI and check-up. The eye doctors want to see him every month for a retinal exam.
I asked a lot of questions about reoccurence and whether we need to be worried about that enlarged pineal gland. Dr. Speak Softly says that she is not concerned that his cancer will become trilateral, meaning involving the pineal gland. Trilateral retinoblastoma is so difficult to treat, she feels that if his cancer was trilateral he wouldn’t have had such a fantastic response to chemo. She said we could talk about reoccurence rates next week, but the hope is that if another tumor shows up (and this is probable) it is caught very early in the monthly retinal exams and they can zap it with cryotherapy or laser therapy.
She and my mother-in-law assure me that I will live through the anxiety of those monthly exams, and I will learn to live with the worry of reoccurance.
I’m just not sure when we can exhale. When can we say we are safe? With a chance of a second cancer – anywhere in his body, and at any time in his life – how do you stop worrying? How do you stop the “what ifs” (what if another tumor shows up and it is in his line of vision where cryotherapy and laser therapy are near impossible)? How does this compare with the normal worries of a mom about their kids’ safety?
What do we call this thing after we are done with chemo – he “had cancer” or he “has cancer but it’s in remission” or he “has cancer but it’s very well treated and his prognosis is good”?
Dr. Speak Softly said, and I quote, that Wes’ response to treatment has been “remarkable”. That’s my boy. Remarkable.
Here is a video of him while we are giving him his blood building medicine (GCSF) one night this week. It is very hard for him to sit still for that 30 minutes or so. We try anything to keep him entertained and happy.