I woke Alex up at midnight and gave him his medicine. He went back to sleep in his own bed. I slept in, I woke up at 7:55 a.m. I went and woke Charlie up. I got dressed and woke Alex up. I gave Alex his medicine and he promptly dropped a cup of juice on the floor. It’s going to be one of those days. I got Alex dressed and we left the house at 8:30 a.m.
We got to the hospital at 9:15 a.m. We were suppose to be there at 8:30 a.m. but they didn’t say anything.
As usual we waited and waited. I was getting really annoyed, they don’t tell us anything. I asked Lorraine if Alex would have a sedative and wasn’t he schedule to have Vincristine. She said Oh I really don’t know, I guess I should check. I couldn’t believe it.
We just were kept waiting and waiting. Finally I asked another nurse and she found out right away.
Dr S then came and explained to us that a Bone Marrow is not as bad as having an LP. She said Alex wouldn’t need a sedative, they usually only give them sedatives in the beginning. Why don’t they explain things better. We should have been told these things before. Just like the Vincrisitne, I thought Alex would have to have an I.V. but Lorraine said it was an I.V. push.
Lorraine said Alex would only have a BM as his counts were down. Two student nurses watched while Alex had his BM. Alex was very good through it . We showed him some books and Charlie blew bubbles. Alex said he couldn’t blow. They finished the BM and we left. We come back on Friday and if Alex’s blood count is up, he’ll have an LP and Vincristine.
We came home, Alex feel asleep on the way home. I went to put him in his bed when we got home and he had a fit. He said what are you doing, I don’t want to go to bed. I said I thought you were tired.
I feel like I’ve about had it. I’m so tired it’s not funny. Last night I knew I was tired when I brought Alex’s laundry upstairs. I started putting them away when I realized they were dirty. I hadn’t washed them yet!
Charlie made Alex lunch, and I had lunch. I went and laid down after lunch. I slept until Charlie left for work.
Alex played in his room most of the afternoon. It took me awhile to wake up.
I phoned the hospital this afternoon to get Alex’s blood count. Lorraine answered the phone, I almost burst out laughing. I thought she probably won’t be able to find it! Martina told me Alex’s counts, the only ones that aren’t up are the WBC and ANC. That surprised me I thought his platelets were down and that’s why treatment hadn’t started. Who knows they never tell me anything, I have to pry it out of them.
It seems to me that they don’t care that much about the parents. I know the child comes first but they should think about the parents too. It’s the whole family that’s affected. They’re causing a lot of pain when it’s not needed. Sometimes I’m so frustrated I feel physically ill.
Alex had dinner after five o’clock. I just had a snack, I still feel frustrated from this morning. When I feel this way I usually eat junk food.
Alex wants to play lite brite before he goes to bed but I told him to clean up his room first. It took him a long time but he did it. He must really like lite brite.
I got Alex ready for bed, he was asleep around nine o’clock. I watched TV for awhile, TV is really boring now. Everything is a repeat. I put on a Tina Turner tape and wrote in the journal. I’ll go to bed around eleven o’clock.
Tests
WBC 1.3
HGB 8.9
Platelets 117,000
ANC 415
Medicine
Bactrim 8:10 a.m. ----- 7:50 p.m.
Orbenin 8:10 a.m.
Temperature 36.08C 8:10 a.m. 36.20C 4:10 p.m.
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