Well, Matthew has completed the first month of his Maintenance phase of treatment. It wasn't as bad as I thought it would be. In my mom's support group, there are several moms whose kids are just a couple of months ahead of Matthew, and they are all struggling. They all got the highest arm of treatment in the study randomization. That means twice the amount of Methotrexate. All of them are feeling worse now than they did through the rest of treatment. I feel so bad for these poor kids! Maintenance is a long time for them to feel like this! For most of them it will make up roughly half of their lives before it's through. Watching these cuties struggle, I was really afraid about Maintenance, and I was nervous to start it.
I'm grateful that Matthew randomized into the standard arm of treatment, and I'm grateful that he's handling it so well.
The doctor's appointment went really well. We went to visit a friend in ICS before his appointment. This poor kiddo has had a really rough go of it, and is in the midst of a rough couple of weeks, so Matthew and I went to the dollar store and bought him a bunch of things that he could do in his bed for fun. Matthew was excited to give him his gift, but he was not excited to be in an ICS room again. Every time we try to visit someone, he won't go in further than the door area. I think he's afraid we'll make him stay. Anyway, after our friend checked out his gifts, and picked the first thing he wanted to do, Matthew was done. He didn't want to stay and play at all, because he was too uncomfortable in the ICS room. I can understand that. I didn't want to push him.
Since we had over half an hour left before his appointment, we went downstairs to the cafeteria and got some snacks, then we went outside to eat them. I think it helped him feel a little less stressed to be outside in the sun and fresh air. We stayed out there until Justin came, and then we all went inside together.
The checkup was a pretty typical one. We talked about how he's managing, and the doctor said she was very pleased with his progress. She said it was just fantastic to see how he seems to be feeling. We talked about my pregnancy, and she said that the only precautions I really need to take are to wear gloves when I handle his pills or body fluids (like if he were to wet the bed, I should wear gloves when I change the sheets). We talked about his Make-A-Wish trip, and she said it should be fine for him to go. She said she had recently sent back all the paperwork.
Then the nurse came in and accessed his port. Since we left the house so early for his appointment, I hadn't put any Emla cream on his port site. That's a numbing cream we use, but it has to be on for an hour before port access for it to work, and it can't be on for longer than an hour and a half, I think. Anyway, instead, we used what they call the freezy spray. It's fast acting, but Matthew hates it. He was more nervous about his port access than usual anyway, because it's been a month. So it was kind of rough, and he cried for a while after, but when he stopped crying, he was really over it, and he was okay again. The nurse took his blood for labs, and then we went back to infusion.
Watching the nurse give the chemo was more bothersome to me than I expected. It's interesting how quickly you become desensitized to those things, and how quickly that goes away when it isn't happening daily or weekly anymore.
Anyway, after a quick push of chemo (Vincristine) and some things that clean out his port, we were done. We left, and headed out to pick up Mikey from his carpool. On the way home, I called the clinic to find out about his counts. It was rather surprising!
White Blood Count: 5.2
Hemoglobin: 11.9
Hematocrit: 36.6
Platelets: 344
ANC: 4.6 (or 4600)
These are the counts of a completely healthy child. The doctor said these are fantastic counts, and she can't believe they're this high. Also, I was mistaken - they don't adjust the meds for high counts during the first round of Maintenance. So, we're 30-ish days into this round, and we have until day 84 before it ends, and we don't have to worry about them upping his meds until at least then. The only time they adjust them during the first round is if the counts have tanked. This means we get to continue just letting Matthew be healthy for a couple of months. What a wonderful thing!
Also, she said that he can go back to church and daycare. He's so excited, he can barely contain himself. It's time for me to find full time work, if for no other reason than to fund his time at the daycare.
He's on day 3 of 5 on his steroid pulse right now. The food thing has been apparent, but not obnoxious, as of yet. He did cry for pizza and breadsticks last night, and even though we are trying to be really careful with money, Justin finally gave in and sent the girls for a $5 pizza. Thankfully, his mood hasn't really been affected much by the steroids this week. He's more antsy, and has a shorter attention span, but that's about it.
Last night, Miss Caroline came for his weekly pre-school lesson. The last time she was here, she was working with him on letter recognition, and he said to her, "W-H-Y spells why. Like Superwhy!" She was shocked. She couldn't believe he was spelling small words like that. So this week, instead of letter recognition activities, she brought small work activities. He didn't have much of an attention span, but she got him to pay attention to it for 5 or 10 minutes. The activity was a paper that had A and T printed on it, and then she brought little squares of paper with different letters printed on them. You would put the random letter in front of the AT, and see if it made a word. It took her about two words to get him to understand the activity (something she didn't expect to happen at all, because that's so advanced for him), and then he just started sounding out the words on his own. C-A-T spells cat, and so on. She was floored. It'll be interesting to see what happens with him. She said soon, she's going to have to bring him books to read to her. I'm so grateful that she comes, and keeps working with him so he won't miss out on the preschool he was getting at the daycare. What a wonderful woman she is!
So, for now, we're looking forward to church, and I'm trying to figure out what to do about my work situation. I'll update again soon.
No comments:
Post a Comment