Chemo, Round 2, Sort Of…

OK.

{Deep cleansing breath}

We’re overdue for an update, I know, and I’m sorry, but…

{Deep cleansing breath}

Ian went back in-patient at Minneapolis Children’s Hospital last Monday morning. He started off the day with a round of heart testing, as he’s been having some serious racing heart issues for the past couple weeks. The chemotherapy drug he recieved last month can have cardio side-effects, so it was good to get checked out before getting another round. All of his tests looked good (tilt test, EKG, and echo), so his chemo finally started going in the mid-afternoon. He got a dose Monday afternoon and another dose 24 hrs later on Tuesday afternoon. He needed to stay in-hospital for another 24 hrs or so, on IV fluids, before coming home Wednesday afternoon.

He tolerated the treatment as well as can be expected. The meds kept the extreme nausea at bay, though he promptly lost his apetite, and is just now (last Friday afternoon, when I started writing this…) getting a bit of it back. By a bit, I mean just a bit. He is definitely not eating like a typical 6′ 2″ teenage boy! He was down a couple pounds already, so now he’ll really have some weight to gain back. Time to start pumping him full of calorie-dense smoothies again!

The Children’s Oncology Group treatment plan for Ian’s “Average-risk Classic-type Medulloblastoma” typically consists of 9 rounds of maintenance chemotherapy (after surgery, followed by 6 weeks of radiation along with 6 weeks of Vincristine) – 2 A cycles, followed by a B cycle, repeated 3 times to equal 9 rounds. With Ian’s reaction to the Vincristine he received during his Proton Therapy, no one was comfortable moving right into an A cycle, which contains more Vincristine, another drug called Lomustine, and Cisplatin. Cisplatin may be one of the wonder drugs for treating Medulloblastoma, but it that has been shown to cause neuro-toxicity problems similar to the effects of the Vincristine, and then some. After spending 3 weeks in-patient for severe neuropathy pain, followed by 2 weeks in-patient at a rehab facility to try to get a jump-start on regaining some of the ground he lost in his brain-injury recovery while laid up in bed for so long in pain, the last thing Ian needed was any more nerve damage… 

We actually had a very prominent doctor from St. Jude’s tell Ian’s main oncologist that if Ian were his patient, he wouldn’t give him any further treatment- it was causing too much damage. They ran some chromosomal breakage studies/tests, and his level of spontaneous breakage, before they used the breaking agent, was alarmingly high. He was tested for various chromosomal breakage syndromes, those tests came back negative, which is good, because those syndromes come with a whole host of other problems, many fatal. The problem with the negative test results is that no one knows why he would have such a high level of spontaneous chromosomal breakage, and no one really knows what it means, and no one knows how much more damage assaulting his system with more chemo will do…

If high levels of chromosomal breakage can lead to cancer, and if treatment for him causes even more chromosomal breakage…?

Secondary cancers are already a risk with his treatments, and his treatmens could be raising that risk even further…?

{Deep cleansing breath}

Can you see why every step of this has been so hard?

Our plan (if you can even call it that), which is being made one step at a time as we go, was to skip the A cycles, at least for now, and start in with a B cycle (Cyclophosphamide, MESNA, & Vincristine), which is actually only a partial B cycle, as Vincristine has been taken off the table. Everyone agrees (and believe me, a LOT of doctors have been consulted on this one) that Ian should not get any more Vincristine, which, in addition to the 6 doses he received during radiation, he was “supposed” to get 24 more times (3 times each A cycle & 2 times each B cycle)…

How much less effective will his treatment be without those 24 doses of Vincristine?

No one knows.

There is no way to know…

Again with the hard.

Round 1 went OK.

OK is a relative term.

He developed quiet a headache after about 12 hours. The nausea wasn’t too bad. The anti-nausea meds were doing their job, because he didn’t vomit until some days later, after he had stopped taking them since he was feeling so fine… His appetite took a dive for a while. His energy level tanked. His physical therapists noted a significant decrease in strength, and they even reported a decrease in his balance. On about Day 14, when his counts bottomed out, his fatigue was pretty overwhelming. His counts took a week longer than they had expected to rebound enough to be able to receive any more chemo. It’s not uncommon to have to wait an extra week, or more, especially towards the end of treatment, after several round of chemo have basically worn out the bone marrow… It was a little surprising to be slow to bounce back after the 1st Round, and a light round at that, but this is Ian, and nothing has been “typical”. Did it have something to do with his chromosomal breakage issue? We don’t really know, but it wasn’t too bad, he didn’t end up needing any blood or platelets, so all-in-all things looked OK.

And… so… we went ahead with Round 2, which was was another “B light” cycle.

Today (Tuesday) is Day 9 & he’ll have counts checked tomorrow.

He was feeling OK for the first week, but he’s definitely losing steam now. His fatigue has increased, his dizziness has increased, and he’s complaining of a headache.

Basically, he feels like crud.

I hate that he is going through this. I hate that he needs chemotherapy. I hate that he has cancer. I hate that the kind of cancer he has damages the brain. I hate that surgery damaged his brain further. I hate that radiation damaged his brain even further. I hate that he still struggles to relearn to walk. I hate that he still struggles to pronounce words, to feed himself, to type, to do so many simple things that the rest of us never think twice about doing.

I hate that I can’t make it better.

I can hold him and hug on him when he cries. I can encourage him to keep working on his exercises. I can pray over him, and with him, and for him.

But I can’t make him better.

I can’t make the cancer go away.

I can’t make the brain injury heal.

But I can love him…

…and I can trust Him.

Let go, and let God!

Tagged as: cancer, chemotherapy, Ian