I woke up at eight thirty. I was going to have a shower before Alex woke up, but Charlie was fixing the bathtub drain. He wanted to have a bath and a shower. Charlie has a rash on his legs.
Alex woke up and I gave him his breakfast, I got him dressed as well. I finally was able to have my shower just after nine o’clock.
We have to be at the hospital at ten o’clock. We’ll be late for sure.
We got to the hospital after ten o’clock. We hadn’t been there long when Martina asked Alex to come and have his I.V. put in. Martina took blood and Alex tried to pull away. We had to hold Alex really tight. These days he pulls away more than he use to. Not long after Alex had the I.V. in, he complained that his arm hurt. Heather checked Alex’s arm but she said it was okay.
We saw Dr S about half an hour later. She said Alex’s HGB and platelet count were very low. His HGB was 5.5 and platelet count was 18,000. I was shocked to think that Alex’s blood count was so low. He looked like he was okay. I know because he’s been on Cyclophosphamide and ARA-C that his blood count goes down but I didn’t think it would be that low. I felt like I did when we first came to the hospital back in April.
We then waited for the blood to come. Around noon the blood came they were about to start it when I told Heather that Alex’s I.V. still was hurting him. Martina checked it and said it would have to come out. Heather took it out and Alex screamed that it hurts when it comes out. Lenore put in another I.V., she had to warm Alex’s arms up first.
Charlie went to the pharmacy, came back and got lunch from himself and Alex.
Dr S gave us another prescription. She said because Alex probably doesn’t have any ANC the antibiotic would fight off any infection. Dr S also said that Alex might experience some pain in his legs.
I went to the pharmacy, they said they would add it to the other prescription. They said it would be ready around two o’clock.
I came back with my lunch. I phoned Mom to let her know we were still at the hospital. Mom invited Alex and myself for dinner. Charlie asked me to ask Dad if he would drive Charlie to work. When we came to the hospital this morning Charlie didn’t want to bring both cars. He figured he could get a ride to work and home. I think it would have been a lot easier if we had brought both cars, we wouldn’t have had to bother Dad. Dad said it was okay. Charlie left after two o’clock, he had gotten the prescription earlier.
Sheila the nurse was teasing Alex, she said to Alex oh that’s my hat. Alex got quite mad at her. Sometimes I think she goes a bit too far. We left around four o’clock. As Alex was getting his sticker Sheila started teasing Alex again. Now she told Alex that I was her Mommy. This time she went overboard. She came with us all the way to the elevators. I was beginning to wonder about her, she was really weird.
We had dinner at Mom and Dad’s. I gave Alex his medicine, Alex went to sleep after dinner. The new antibiotic Orbenin has to be given every six hours. Heather said Alex would have to be woken up in the middle of the night. Mom suggested I give Alex his medicine at six and twelve o’clock a.m. and p.m. That way I wouldn’t have to wake him up in the middle of the night.
Charlie phone around eight o’clock, he wants me to pick him up. I really don’t feel like waiting until eleven o’clock but I don’t seem to have much choice. Charlie doesn’t seem to realize how much pressure and strain I’m under. I know we’re both going through the same thing, but I feel that I get a lot more of the responsibility. I have to give Alex his medicine, get him dressed, brush his teeth, get him some of his meals, entertain him, get him ready for bed (even on weekends) and read him stories. As well as keeping up the housework which I find impossible right now. Ever since Alex became sick I have felt tired and it doesn’t seem to matter how much sleep I get I’m still tired.
Alex and I picked Charlie up and came home. We gave Alex his medicine at midnight. Alex had fallen asleep so we had to wake him up. He was furious, it’s hard for him to understand why he has to take the new medicine so often.
I cleaned up the kitchen and then I went to bed it was after one o’clock.
Tests
WBC .4
HGB 5.5
Platelets 18,000
ANC 0 WBC too low to count
Medicine
Bactrim 9:00 a.m. ----- 6:00 p.m.
Orbenin ------ 6:00 p.m.
Temperature 36.81C 9:09 a.m.
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