Tough Times

Okay, I've been avoiding this post because it's going to be hard for everyone to read. But I know everyone also wants to be updated, and I want to keep a good record - for better or worse. So, here goes.

Matthew has had a really rough couple of weeks. Doxorubicin is awful, nasty stuff! When he was on the steroids, we thought he was whiny because of them, but it never stopped after the steroids did, so I think it's just that he feels like crap. I'd be whiny too. He sometimes goes a whole day without eating anything. He's really tired - sleeping an extra 3 hours some nights, and sometimes adding a 2-3 hour nap. He's looking thin again. And paler. What's the worst, though, is that he's sick to his stomach. And it's totally unpredictable.

He's had two doses of Doxorubicin so far. The first time, he woke up in the middle of the night - roughly 14 hours after his treatment - and threw up like crazy all night. It took about 8 hours of anti-nausea medicines to get it under control. Then, we kept giving the nausea meds for a couple of days, just to be sure.

The second time on the Doxo, we gave him anti-nausea meds for the first 3 days religiously. 3 different meds - 2 at the earliest interval allowed (Zofran and Ativan) and 1 as a back up, in case the two weren't enough (Benadryl). When we slowed down on the meds, he got sick for the whole afternoon. 3 days after the treatment! So, we're still trying to figure out the best way to manage the nausea.

He's had low grade fevers, which always make me nervous. His fevers have stayed in the 99.something range - the highest being 99.9 degrees. They told us in the beginning that if his fevers were above 100 for an hour, we should call, but if they were over 101, we should g0 to the ER. But when they're 99, you just wait and watch. So, it's just enough to make me nervous, and put me on alert. I guess that's better than the alternative - a higher temp would likely hospitalize him.

The extra sleeping makes me sad. He used to be so busy, I couldn't even get him to bed at his regular bedtime. I always had to struggle for like an hour to get him to bed, which was frustrating, for sure, but now he's so tired he puts himself to bed, and sometimes it's as much as 2 and a half hours early. I think it's sad. Before, I would have longed for that, but now, It just reminds me of how fragile he is. How weak these drugs make him. I hate it.

He's had a couple of especially rough days. On these days, you know he's suffering and doesn't know how to verbalize it. He won't let us leave him alone - even for a minute. If he's watching TV, he wants someone to watch with him. It's not good enough to be in the same room doing your own thing - like getting on the computer. You have to sit and watch with him. I fell asleep during one of these days, and he got really upset with me. On these days, if he's eating, you are required to share his meal, if he's playing, you are required to play with him. He must be with someone at all times. I decided that's his way of asking us not to make him go through it alone, and we are doing our best to accommodate his requests, because we can't imagine how hard this must be for him, and he has no way of telling us.

My heart breaks for him. My sweet little boy. He has always been so charming, so charismatic, so happy, independent and headstrong. Now, he's fragile and tired, and desperately avoids being alone. I hope in the end, he can find his true self again. I hope we all can.

The one silver lining is that I have started counting the weeks to Maintenance. It helps me see a light at the end of this dark tunnel.

He has 14 more weeks to go until Maintenance.

Even though we totally can't afford it, we're talking about taking a family vacation this summer. We have a friend whose family lives on a huge piece of land in Southern Oregon - in a town I love from my childhood, Bandon. She has invited us to go with her this summer, so that might be one way to make it happen. But also, we're hoping that when we sign Matthew up for Make-A-Wish, a trip will be what he wants. He talks about the beach often, he loved it so much last year. So, I do think that's a real possibility. I don't know how you get a four year old to understand the depth of being granted ANY wish he wants. We'll play it by ear when we get there, though. I want it to be HIS wish.

For now, I cling to that countdown. 14 more weeks. It doesn't mean he'll be done, it just means it won't be so rigorous. But it's a big milestone, and I really need to look forward to it.

So, here's to week 15! The first week with no doctors, no CBC, no pokes. Spring will bring so much more than nicer weather to the Burr household. Better times are coming.