Collin and I definitely enjoyed our short time at home. We did a lot of laughing, and spent as much time together as a family as we could. Monday August 30 was Neya's first day of first grade, and Collin was so excited to go see the big yellow bus when I told him we were taking Neya to the bus stop that he wouldn't eat any more breakfast; he pointed to the door and wanted to leave right away! After we waved goodbye to the bus, we went to Collin's clinic appointment where they took vitals and drew labs for his readmission to the hospital the next day. His weight was up to 25 pounds, which is the highest it's ever been! He's been eating well; he seems to be eating the amount he used to before he got sick. Granted it may not always be the healthiest food, but if he wants to eat something, I give it to him. He still gets the tube feed over night, but I dropped him back down to one can of formula instead of two since he seemed to be eating and drinking so well. Bill and I have also noticed that he seems to be having an easier time handling different textures and larger bites, and seems to be gagging a lot less.
Tuesday (Round 5, Day 0) morning we again put Neya on the bus, and then waited for the hospital to call and tell us they were ready for us to come over. I was hoping it would be early in the day so that Bill could help move us back in before having to pick Neya up from school, and so that hopefully Collin's chemo could get started before 4:00 am. They called us just before lunchtime, so we loaded the cars with the bins of toys, the high chair, and the clothes we would need for the next few weeks and headed back to the hospital. We got settled in and unpacked, had lunch, and later Bill picked Neya up from school and brought her to the hospital. We all ate dinner together, and then Bill and Neya left early enought that they could get home and Neya could get to bed by 8:00 pm. When Bill and Neya left, Collin cried and pointed to the door, probably telling me he wanted to go home too. I just hugged him and told him I was staying with him. The pre-hydration fluids were hung at 5:30 pm, and then the chemo started at 10:00 pm. That night Collin got Cisplatin. We didn't give him his tube feeding overnight to hopefully prevent some vomiting.
Collin slept pretty well Tuesday night, and was very excited to see the breakfast tray come in the morning. He ate all of his breakfast and part of mine, but unfortunately he didn't keep it down. Later he ate just as well for lunch and dinner, and luckily didn't throw up any more. Overall he had a good day Wednesday (Round 5, Day 1). We played a lot, and he had a good nap in the afternoon. He was excited to see Bill and Neya Wednesday evening, and luckily didn't cry when they left. His chemo started a bit later Wednesday night due to an equipment malfunction that caused the Mesna, the rescue agent for the Cytoxan, to spill, so chemo was delayed an hour and a half until they got more Mesna. In the end it was no big deal; the doctor assured me the small delay wouldn't impact the effectiveness of the treatment, and I was glad that Collin got another decent night's sleep. I was afraid that having his blood pressure taken regularly through the infusion of Cytoxan would wake him up, along with having to have regular diaper changes due to all of the fluids he was receiving. So he received Etoposide and Cytoxan, along with the Mesna, and he will receive the same three drugs tonight (Round 5, Day 2).
Today was another pretty good day. Collin seemed a bit more clingy than usual whenever anyone came into the room; usually in retrospect I realize the increased clingyness happens when he's not feeling well. Maybe he was nauseous, or maybe his gums are hurting (he is starting to cut two-year molars). But he played well, pulled himself up to stand during his OT session, and ate well at all meals-with no vomiting today. More than once I noticed his left eye seemed to be turned in less, and when I mentioned it to his oncologist, she said perhaps Vincristine toxicity is starting to wear off (if that's what was causing that eye to turn in in the first place). He also had another good nap this afternoon, and is sleeping peacefully as I type this. Hopefully he will sleep through the chemo tonight, and we will both get some good rest!
good to hear!!
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