****I wrote this nearly three weeks ago... Just as I was adding pictures and links my internet pooped out and I so frustrated I walked away until now... major slacker. :)****
Carter's, overall, doing awesome. He "passed" Consolidation (the second cycle of chemotherapy) on Monday and started Interim Maintanence 1, which *should* be two months long. "Should" means that as long as he passes his counts every 10 days he will receive two different types of chemo: Vincristine and Methotrexate. I was so excited to receive the good news that his counts were high enough to start IM. After he received both of these meds on Monday, the doctor called with some blood test results. Before he gets the meds they check his blood along other things.
One of the "other things" is checking how his liver is holding up. They don't get those results until the end of the day. The past month his liver counts have been kinda high... like 7 times what they normally are. That is kind of expected with the chemotherapy he has been taking at home every night (Mercaptipurine). But, even still, 7 times is high for that. Normally one of his liver counts (there are two types of ways they test it) should be 25. Last week at chemo it was 172. High, right? This week, BEFORE they pumped him full of meds, it was 873!!!! (***Update: As of May 26th it was down to 555.) When the doctor called she said had she known his liver counts before he got his chemo there is NO WAY she would have given them to him. This will NOT cause permanent liver damage, but it will push his chemo back (my guess) at least 10 days... which means 10 more days he'll have to wait until he starts school.
Dr. Reaves (who I'm pretty sure walks on water) also told us to expect Carter to fail his blood counts at least once, if not more often... now I'm wondering if not only are we going to have to make sure he passes his blood counts, but will we also have to watch his liver counts. I mean, don't we need our livers to be functioning?
And the worst part (to me) is that the med he was taking this last month which was causing the aggravated liver is one he will have to start taking again in a few months and take until his treatment is DONE! That means at LEAST 2 years!!!!! BUMMER! It makes his tummy a little upset. It makes him throw up some times. Because it's chemotherapy, we canNOT touch it. It can make us very sick if we do. We have to dump the pill into a medicine cup and Carter has to eat it out of there. He also has to take it two hours after he east dinner so if we have a late dinner we have to wake him up to take it. It's so annoying. And, apparently, it tastes gross. (Haven't tried it.)
Dr Cook, his other oncologist (also a water-walker), said to not plan on Carter going back to school until JANUARY..... His comment was met with complete silence from me (me, speechless?... odd, right?). I literally just stared at him. I thought (I think it was more hope than anything) he would be going back in the fall with the other kids. Nope. The worst part of chemo is coming up in about 3 months. There's a 5 week period that is super rough on the kids. That will fall in the beginning of the school year... IF Carter passes his counts continuously between now and then. The more his chemo is pushed back, the more the hard part of chemo is pushed back... and the later he goes back to school. Dr. Reaves (who is the less conservative of the two doctors) said Carter may be able to go back a little earlier if he's doing well. I think the absolute earliest will be October. And that's if things go smoothly... Suck nugget.
Although his liver is in poor condition right now, his spirits are as high as ever. He's THRILLED he only has to go to chemo every 10 days instead of every week. He's looking forward to his birthday next month and I'm finally backing off of the whole "you can't touch a single person" thing. He's getting healthy enough, and familiar enough with what he needs to do to stay clean, that we are talking about having a friend over every now and then. We frequently talk of what he wants to do for Make-A-Wish. We talk about how he'll get his port out when he's nine and then he'll be all cured. As always, his attitude amazes me. He brags about how he's had more surgeries than I have.
At the end of each cycle of chemo we celebrate with a cake. We write the name of the cycle on the cake and we put a candle on it (I think the bakery people think I'm nuts for writing things like "Consolodation" on a cake!). The candle number represents which cycle he has just completed. I'm SO proud of him and how far he's come. I'm so proud of him for not being angry about this whole thing (who knows if and when that day will come). I know he's going to turn out to be an amazing man... just like his daddy!
These are from a month ago when he finished Induction, his first cycle of Chemo (which lasted a month). You can see the chubs in his cheeks from the steroids.