Friday, October 16, 2009

Craptaculous

It's been an... interesting week, if by interesting one means mind-bogglingly awful and life-altering. Suffice it to say that many, many big changes are in store for my family and me over the next 8 or 9 months, one way or another.

The Boy is fine. Not great, but fine. He was supposed to start chemo on Thursday, but he didn't. His platelet levels are too low. They checked again today because his counts have had a tendency to suddenly jump huge numbers, but getting from 73 to 100 in one day is a little too much to ask. So, we're looking at a Monday admittance for chemo. That's frustrating, because Grandma & Grandpa are here from Pittsburgh because Grandpa has business in New York City over the weekend.

Updating a couple of dangling plot threads: The audiologist that examined The Boy was mistaken in quite a few areas. The doctors WILL adjust his chemotherapy to try to minimize further hearing damage, and they WILL fit him with corrective hearing aids when necessary and adjust them as necessary instead of waiting. That's a good thing. That doesn't change the rest of it - that he hears like a 40-year old man and that his hearing is likely to deteriorate further.

We've discovered several children in The Boy's same treatment plan that have ended treatment, generally around a year after treatment began, because their counts just stopped regenerating. We're not at that point with The Boy yet, although we will note that he's been on a 4-week chemo cycle instead of a 3-week chemo cycle since June or July. Some of that was due to the effects of the staph infections in his first port, but all of the chemos since August have been on 4-week rotations as well. On one hand, I'd love to stop chemo because I'm tired of pumping my baby full of chemicals that damage his growth, hearing, limbs, and development. On the other hand, I'd really love to have a baby living with us rather than dead of cancer. Gripping hand, the doctors have lead us well, up through this point.

We'll see what happens. Have no fear, gentle reader: you will be kept informed. I need this outlet, to express my feelings and thoughts as we progress further through The Boy's treatments. We're in a really down and depressed state at this point, but I again will count my blessings: I have a great wife, and we have wonderful friends and gorgeous babies.

6 comments:

The Reluctant Crunchy Mama said...

This is a stupid-sounding question, but how does The Boy's oncologist/oncology team determine how many chemo cycles he needs? Why 30 cycles? Does he/she have any data to back up that specific number of cycles? The kids that stopped after one year... How are they doing? Are they ok? Is it too soon to tell? Is it just the frustrating waiting/statistics game? Keeping you guys in my thoughts always... Try to get yourself some Boy therapy! I hear it does wonderful things!

the mol said...

This relapse protocol is called Stratum-C and it was written for a study group of patients. The Boy is not on a study. The study was written with 30 cycles of chemo, plus radiation. Every move made has been made with The Boy's team consulting with several experts before proceeding.

The one girl who was on this protocol for about a year is 2 years off treatment and still NED. Other kids were on a shorter but more aggressive relapse protocol called UH-1, which included Carboplatin, Etoposide, and Cyclophosphamide (Cytoxan) as the boy gets, PLUS, Doxorubicin and Vincristine, which he already had in his first regimen (entitled DD4A).

Does that help?

Sarah R said...

You are in my thoughts and prayers every single day.

The Reluctant Crunchy Mama said...

I was just curious... Musical Daddy's post earlier today made me wonder, specifically the fact that some kids' counts were not bouncing back. You mentioned another regimen, shorter and more aggressive... Wow... The Boy doesn't get much of a break in between treatments as it is... I wish I had a ton of money to throw at cancer research...

Musical Daddy said...

Funny you should mention that... apparently, the government had allotted for around $350 million for pediatric cancer research. They haven't paid one nickel of that, yet. So, you HAVE created a ton of money for cancer research. They're just sitting on it.

The Reluctant Crunchy Mama said...

Great... Freakin' heroes... They set some money aside; that is a start. But when will it be put to good use? Crazy idea... There must be someone who has been touched by cancer, a senator, a representative... I wonder how we could find out who that is. And, I wonder if multiple people writing that person might do anything. Trying to think of what us citizens could do to help little ones with cancer...