Alex came into our bed in the middle of the night. I got up at four o’clock and looked outside the sky was black, it looked like there was going to be a storm.
I woke up at 8:30 a.m. and the sky was clear, it was nice and sunny.
I had breakfast, I gave Alex his breakfast and medicine. I cleaned up the house, Charlie left to go to the bank. I had a shower and got dressed.
Alex had been complaining around nine o’clock that he wanted me to hold him. He looked tired so I told him to go to bed. I read him a story and told him to rest. He was annoyed that he had to go to bed but he fell asleep in about fifteen minutes.
After my shower I cleaned the stove and the counter tops.
At twelve o’clock Alex woke up. He wanted me to hold him, he seems to want to be held a lot lately. Shortly after Alex woke up, Paul, Holly and Jay arrived. They’re on their way back home. The stopped to see us as it’s on their way.
They thought Alex looked pretty good, the same as the last time they saw him except he has less hair now. They were all quite concerned about his condition which is really nice to see.
They left about an hour later. Alex and I watched a video on TV. Charlie went outside to cut the lawn.
After we finished watching the video Alex wanted to go to the store. We went and returned the videos then we went into 7-11. Alex wanted to buy something.
We came home and went out for dinner. We went to Lee’s Garden, it sure was nice to go out for dinner. A few people looked at Alex, it seemed like they were curious about Alex’s hair loss. Afterwards we went to the mall. We came home around eight o’clock. I started to pack, we’re going to go to Kamloops tomorrow.
Alex had his medicine, then I gave him a bath. I got him ready for bed and read him a story. Alex went to bed around nine o’clock.
I did the rest of the packing and went to bed around twelve o’clock.
No tests
Medicine
Septra 8:30 a.m. ------ 9:15 p.m.
Mercaptopurine ------ ------ 8:15 p.m.
Prednisone 8:30 a.m. 2:45 p.m. 8:15 p.m.
Temperature 35.66 8:30 a.m. 36.16C 2:45 p.m. 36.79C 8:15 p.m.
Saturday, July 30, 2011
Friday, July 29, 2011
Diagnosis: Leukemia; July 29, 1987
Alex came into bed last night and I woke up in the middle of the night. I decided to go to Alex’s bed and sleep.
Alex woke me up at eight o’clock. We had breakfast and I cleaned up the house. I cleaned the bathrooms. I had a shower and got dressed. I made the mistake of telling Alex that we were going to Marla’s. He complained all day that he wanted to go. Then at lunch time he said he didn’t want to go to Lanie’s. He said he wanted to play with Kurt. I told him if he didn’t go to Lanie’s he would be staying home. Alex said he wanted to go to Lanie’s.
We went there at one o’clock. Alex kept on checking to make sure I was still there. He seems to be very tired, I think yesterday was too much for him. We left at three thirty, Alex said he wanted to go to Toy City. We went to the video store, London Drugs, then we went to Toy City. Alex couldn’t make up his mind what he wanted. We almost left without anything.
We got home after five o’clock, Alex fell asleep in the car. I put him into his bed. Charlie had dinner after we got home, he started his holidays on Monday. I waited until Alex woke up. I wrote in the journal from just after five to almost seven o’clock.
Alex and I had dinner, he complained all the time that he was hungry, he couldn’t wait for his food.
After dinner we all went for a walk. Then we watched videos on TV
Joan phoned at 9:30 p.m. to thank us for the blanket for Paige. She said Paige had a reaction to her shot.
Alex was complaining that he wanted to go to bed but Charlie didn’t get him ready. Charlie told Alex to tell me to get off the phone. I got off the phone and got Alex ready for bed. I watched the rest of the video and went to bed.
No tests
Medicine
Septra 8:00 a.m. ------ 8:30 p.m.
Mercaptopurine ------ ------ 8:30 p.m.
Prednisone 8:00 a.m. 2:00 p.m. 8:30 p.m.
Temperature 36.98C 8:10 a.m. 36.28C 12:10 p.m.
Alex woke me up at eight o’clock. We had breakfast and I cleaned up the house. I cleaned the bathrooms. I had a shower and got dressed. I made the mistake of telling Alex that we were going to Marla’s. He complained all day that he wanted to go. Then at lunch time he said he didn’t want to go to Lanie’s. He said he wanted to play with Kurt. I told him if he didn’t go to Lanie’s he would be staying home. Alex said he wanted to go to Lanie’s.
We went there at one o’clock. Alex kept on checking to make sure I was still there. He seems to be very tired, I think yesterday was too much for him. We left at three thirty, Alex said he wanted to go to Toy City. We went to the video store, London Drugs, then we went to Toy City. Alex couldn’t make up his mind what he wanted. We almost left without anything.
We got home after five o’clock, Alex fell asleep in the car. I put him into his bed. Charlie had dinner after we got home, he started his holidays on Monday. I waited until Alex woke up. I wrote in the journal from just after five to almost seven o’clock.
Alex and I had dinner, he complained all the time that he was hungry, he couldn’t wait for his food.
After dinner we all went for a walk. Then we watched videos on TV
Joan phoned at 9:30 p.m. to thank us for the blanket for Paige. She said Paige had a reaction to her shot.
Alex was complaining that he wanted to go to bed but Charlie didn’t get him ready. Charlie told Alex to tell me to get off the phone. I got off the phone and got Alex ready for bed. I watched the rest of the video and went to bed.
No tests
Medicine
Septra 8:00 a.m. ------ 8:30 p.m.
Mercaptopurine ------ ------ 8:30 p.m.
Prednisone 8:00 a.m. 2:00 p.m. 8:30 p.m.
Temperature 36.98C 8:10 a.m. 36.28C 12:10 p.m.
Thursday, July 28, 2011
Diagnosis: Leukemia; July 28, 1987
I woke up at eight o’clock. I had breakfast, Charlie had gotten Alex his breakfast. I was going to do some house cleaning but Charlie had told Alex that we were going to go to the beach today. When Alex heard that he wanted to go right away.
Charlie figured it would probably be better to go early that way there wouldn’t be too many people.
We went to White Pine Beach in Port Moody. Alex sure was excited to go, he brought his pale and shovels. He dug and built sandcastles almost the whole time we were there. It was really hard to get Alex to leave. We told Alex we were going to McDonald’s. He finally said okay let’s go. We went to McDonalds and ate inside then we went home.
Now that Alex is allowed to do more things he wants to do everything at once. When we left the hospital yesterday he said let’s go to Auntie Blair’s place. He was quite annoyed that they weren’t home.
When we got home from McDonald’s Alex wanted to ride his bike outside. Then he wanted to play with his dump truck, cement truck, and his scooper outside.
Alex fell asleep at four thirty while watching TV.
I had to wake Alex up at six o’clock for dinner. He was really cranky that he was woken up. Alex complained all through dinner.
After dinner we all went for a walk.
When we came back, Alex watched TV and I went and had a bath. My hip was bothering me so I laid on our bed with Alex.
Alex went to bed around ten o’clock. I went to bed at 10:30 p.m.
No tests
Medicine
Septra 8:15 a.m. ----- 8:30 p.m.
Mercaptopurine ------ ----- 8:30 p.m.
Prednisone 8:15 a.m. 2:05 p.m. 8:30 p.m.
Temperature 36.79C 8:30 a.m. 36.47C 2:30 p.m. 9:15 p.m.
Charlie figured it would probably be better to go early that way there wouldn’t be too many people.
We went to White Pine Beach in Port Moody. Alex sure was excited to go, he brought his pale and shovels. He dug and built sandcastles almost the whole time we were there. It was really hard to get Alex to leave. We told Alex we were going to McDonald’s. He finally said okay let’s go. We went to McDonalds and ate inside then we went home.
Now that Alex is allowed to do more things he wants to do everything at once. When we left the hospital yesterday he said let’s go to Auntie Blair’s place. He was quite annoyed that they weren’t home.
When we got home from McDonald’s Alex wanted to ride his bike outside. Then he wanted to play with his dump truck, cement truck, and his scooper outside.
Alex fell asleep at four thirty while watching TV.
I had to wake Alex up at six o’clock for dinner. He was really cranky that he was woken up. Alex complained all through dinner.
After dinner we all went for a walk.
When we came back, Alex watched TV and I went and had a bath. My hip was bothering me so I laid on our bed with Alex.
Alex went to bed around ten o’clock. I went to bed at 10:30 p.m.
No tests
Medicine
Septra 8:15 a.m. ----- 8:30 p.m.
Mercaptopurine ------ ----- 8:30 p.m.
Prednisone 8:15 a.m. 2:05 p.m. 8:30 p.m.
Temperature 36.79C 8:30 a.m. 36.47C 2:30 p.m. 9:15 p.m.
Wednesday, July 27, 2011
Diagnosis: Leukemia; July 27,1987
I woke up after eight o’clock and as soon as I got out of bed Alex got up as well. I got Alex his breakfast and gave him his medicine. He wanted to get dressed right away. Then I had a shower and got dressed.
We left the house for the hospital at 9:20 a.m. We got to the hospital at ten o’clock. Alex had his blood test at 10:30 a.m.
Janice came and talked with us. I told her that they don’t give us enough information about what we should be doing. I also told her that I had kept Alex quiet the whole week and I was hoping that it would help Alex’s blood to come up. She said I should talk to the doctor about it. She made no comment about the lack of information, it seems like Janice doesn’t want to get involved.
I asked a nurse if Alex’s blood count had come back yet. The nurse said yes and gave me the computer sheet. She also said they were going ahead with the LP and Alex would start maintenance. Boy that sure was a relief off my mind.
Charlie went to get Alex his lunch, he wasn’t gone any time when Lorraine said they were ready to do Alex’s LP. This place really amazes me they don’t even warn you when they’ll be doing anything. I knew Alex would be having an LP if his blood count was up but I expected the doctor to come and tell us that it was okay to go ahead. I then had to go and look for Charlie, Alex won’t go into the treatment room without both of us. Charlie was just on his way back. We took Alex into the treatment room and Dr S told us Alex’s blood count was okay to go ahead. I told Dr S what I had done last week with keeping Alex quiet and I was wondering if that was why Alex’s ANC had come up so much. She said oh no it has nothing to do with it. When the bone marrow decides to repair itself it does and nothing you do will make any difference. The way she talked it was like you must be kidding what a weird idea.
I still think keeping Alex quiet really helped his blood to come up like it did.
Alex had an LP, he seems to be getting worse during the LP. He fights now when he has it done. He knows what’s going to happen when he goes into the treatment room.
Dr S said the next time Alex has an LP he’ll have to have medication to calm him down. She said he’s getting strong and is harder to control. I can’t reason with him he just won’t listen.
Alex picked a toy out of the box, the treasure chest, then we got him to lie down for about an hour.
At 1:15 p.m. Lenore gave Alex the Vincristine IV push. The first time she put it in his arm, he screamed that it really hurt. He didn’t stop until she took it out. Lenore said Alex never complained before, so she thought it must be in wrong. Lenore took it out and tried the other arm, but he did the same thing he screamed and screamed. Lenore put 20cc of water in to make sure it was okay then she put the Vincristine in. If it had been in wrong it would of hurt when the Vincristine went in.
After that we left, we went to Mom and Dad’s. They asked us to stay for dinner. Alex fell asleep not long after we got there. I put him in Mom and Dad’s bedroom.
Friends of Mom and Dad’s dropped by, they knew them from Sun Vista RV Resort in Yuma Arizona.
We left at eight o’clock, we had to keep Alex awake until nine o’clock to give him his medicine.
Alex went to bed shortly after nine o’clock.
I went to bed around eleven o’clock.
Tests
WBC 4.1
HGB 12.1
Platelets 474,000
ANC 2050
Medicine
Septra 8:50 a.m. ----- 9:00 p.m.
Mercaptopurine ----- ----- 9:00 p.m.
Prednisone ----- 4:00 p.m. 9:00 p.m.
Temperature 36.40 8:50 a.m. 36.18C 9:00 p.m.
We left the house for the hospital at 9:20 a.m. We got to the hospital at ten o’clock. Alex had his blood test at 10:30 a.m.
Janice came and talked with us. I told her that they don’t give us enough information about what we should be doing. I also told her that I had kept Alex quiet the whole week and I was hoping that it would help Alex’s blood to come up. She said I should talk to the doctor about it. She made no comment about the lack of information, it seems like Janice doesn’t want to get involved.
I asked a nurse if Alex’s blood count had come back yet. The nurse said yes and gave me the computer sheet. She also said they were going ahead with the LP and Alex would start maintenance. Boy that sure was a relief off my mind.
Charlie went to get Alex his lunch, he wasn’t gone any time when Lorraine said they were ready to do Alex’s LP. This place really amazes me they don’t even warn you when they’ll be doing anything. I knew Alex would be having an LP if his blood count was up but I expected the doctor to come and tell us that it was okay to go ahead. I then had to go and look for Charlie, Alex won’t go into the treatment room without both of us. Charlie was just on his way back. We took Alex into the treatment room and Dr S told us Alex’s blood count was okay to go ahead. I told Dr S what I had done last week with keeping Alex quiet and I was wondering if that was why Alex’s ANC had come up so much. She said oh no it has nothing to do with it. When the bone marrow decides to repair itself it does and nothing you do will make any difference. The way she talked it was like you must be kidding what a weird idea.
I still think keeping Alex quiet really helped his blood to come up like it did.
Alex had an LP, he seems to be getting worse during the LP. He fights now when he has it done. He knows what’s going to happen when he goes into the treatment room.
Dr S said the next time Alex has an LP he’ll have to have medication to calm him down. She said he’s getting strong and is harder to control. I can’t reason with him he just won’t listen.
Alex picked a toy out of the box, the treasure chest, then we got him to lie down for about an hour.
At 1:15 p.m. Lenore gave Alex the Vincristine IV push. The first time she put it in his arm, he screamed that it really hurt. He didn’t stop until she took it out. Lenore said Alex never complained before, so she thought it must be in wrong. Lenore took it out and tried the other arm, but he did the same thing he screamed and screamed. Lenore put 20cc of water in to make sure it was okay then she put the Vincristine in. If it had been in wrong it would of hurt when the Vincristine went in.
After that we left, we went to Mom and Dad’s. They asked us to stay for dinner. Alex fell asleep not long after we got there. I put him in Mom and Dad’s bedroom.
Friends of Mom and Dad’s dropped by, they knew them from Sun Vista RV Resort in Yuma Arizona.
We left at eight o’clock, we had to keep Alex awake until nine o’clock to give him his medicine.
Alex went to bed shortly after nine o’clock.
I went to bed around eleven o’clock.
Tests
WBC 4.1
HGB 12.1
Platelets 474,000
ANC 2050
Medicine
Septra 8:50 a.m. ----- 9:00 p.m.
Mercaptopurine ----- ----- 9:00 p.m.
Prednisone ----- 4:00 p.m. 9:00 p.m.
Temperature 36.40 8:50 a.m. 36.18C 9:00 p.m.
Diagnosis: Leukemia; July 26, 1987
At one o’clock the next door neighbour woke us up again, they did this last night as well. They stood outside talking to their guests, Kelly heard them and he started barking. Alex woke up as well and climbed into our bed.
I woke up at three o’clock, Alex was kicking me in the stomach. I went into Alex’s bed it took me a while before I was able to fall asleep.
At seven o’clock Alex woke up and said he wanted to watch Mr Dressup. I put the TV on for him then I went and laid down. Then Alex asked me to come and play with him. Charlie came in and told me to go to bed. I didn’t sleep very long as the electrician came and Alex was making a lot of noise.
I sure am tired, not a very good night sleep.
I gave Alex a medical kit, he seemed really thrilled to get it. Alex asked me to open the box, then he wanted to practice on me.
I had breakfast, Charlie had already gotten Alex his breakfast. I played with Alex all morning long.
After twelve o’clock Shirley dropped by with Monique. She stayed for about an hour.
I played with Alex part of the afternoon. At 1:30 p.m. I told him to watch TV for awhile. This didn’t last long!
Charlie came back from grocery shopping. I did the laundry, the dishes and vacuumed the house. After doing this I had a shower and got dressed. I started dinner then Alex came in and asked me to make dinner as he was hungry.
We had dinner at 5:30 p.m., after dinner Alex complained that his stomach hurt. He asked me to hold him and then he promptly fell asleep. I put Alex in our bed as his sheets were in the wash.
Not long after Charlie fell asleep, what a pair!
Alex woke up before eight o’clock. I gave him his medicine. Alex went to sleep around ten o’clock.
I went to sleep shortly afterwards.
No tests
Medicine
Septra 9:45 a.m. ----- 7:30 p.m.
Temperature 36.14C 9:45 a.m. 36.59C 1:10 p.m. 36.38C 7:30 p.m.
I woke up at three o’clock, Alex was kicking me in the stomach. I went into Alex’s bed it took me a while before I was able to fall asleep.
At seven o’clock Alex woke up and said he wanted to watch Mr Dressup. I put the TV on for him then I went and laid down. Then Alex asked me to come and play with him. Charlie came in and told me to go to bed. I didn’t sleep very long as the electrician came and Alex was making a lot of noise.
I sure am tired, not a very good night sleep.
I gave Alex a medical kit, he seemed really thrilled to get it. Alex asked me to open the box, then he wanted to practice on me.
I had breakfast, Charlie had already gotten Alex his breakfast. I played with Alex all morning long.
After twelve o’clock Shirley dropped by with Monique. She stayed for about an hour.
I played with Alex part of the afternoon. At 1:30 p.m. I told him to watch TV for awhile. This didn’t last long!
Charlie came back from grocery shopping. I did the laundry, the dishes and vacuumed the house. After doing this I had a shower and got dressed. I started dinner then Alex came in and asked me to make dinner as he was hungry.
We had dinner at 5:30 p.m., after dinner Alex complained that his stomach hurt. He asked me to hold him and then he promptly fell asleep. I put Alex in our bed as his sheets were in the wash.
Not long after Charlie fell asleep, what a pair!
Alex woke up before eight o’clock. I gave him his medicine. Alex went to sleep around ten o’clock.
I went to sleep shortly afterwards.
No tests
Medicine
Septra 9:45 a.m. ----- 7:30 p.m.
Temperature 36.14C 9:45 a.m. 36.59C 1:10 p.m. 36.38C 7:30 p.m.
Tuesday, July 26, 2011
Diagnosis: Leukemia; July 25, 1987
Alex came into our room around eight o’clock. He said how come Kelly’s not in my room. I told him Kelly was barking last night so I took him out. Alex said oh and went back to bed.
I woke up at nine o’clock. I made everyone waffles for breakfast.
Charlie went out to look for bathroom fixtures, for the downstairs bathroom.
I gave Alex his surprise and then I gave him a shower. I played with Alex most of the morning and early afternoon. We had lunch at one o’clock.
I went out at two thirty and come home around three thirty.
I started dinner at four thirty, in between cooking I played with Alex.
We had dinner before six o’clock. After dinner Alex watched TV, at 7:30 p.m. I gave Alex a bath. I got him ready for bed, Charlie brushed his teeth. I read him a story and he played with his cars for awhile. I couldn’t believe it when I went into Alex’s room. He had put away all the cars and was fast asleep in his bed.
I wrote in the journal for about half an hour.
I watched a video until 10:30 p.m., then I finished writing in the journal. It’s almost eleven o’clock, time for me to go to bed.
No tests
Medicine
Septra 10:30 p.m. ----- 7:00 p.m.
Temperature 36.17C 10:30 a.m. 36.52C 4:30 p.m.
I woke up at nine o’clock. I made everyone waffles for breakfast.
Charlie went out to look for bathroom fixtures, for the downstairs bathroom.
I gave Alex his surprise and then I gave him a shower. I played with Alex most of the morning and early afternoon. We had lunch at one o’clock.
I went out at two thirty and come home around three thirty.
I started dinner at four thirty, in between cooking I played with Alex.
We had dinner before six o’clock. After dinner Alex watched TV, at 7:30 p.m. I gave Alex a bath. I got him ready for bed, Charlie brushed his teeth. I read him a story and he played with his cars for awhile. I couldn’t believe it when I went into Alex’s room. He had put away all the cars and was fast asleep in his bed.
I wrote in the journal for about half an hour.
I watched a video until 10:30 p.m., then I finished writing in the journal. It’s almost eleven o’clock, time for me to go to bed.
No tests
Medicine
Septra 10:30 p.m. ----- 7:00 p.m.
Temperature 36.17C 10:30 a.m. 36.52C 4:30 p.m.
Sunday, July 24, 2011
Diagnosis: Leukemia; July 24, 1987
I woke up at nine o’clock. I hadn’t even had breakfast yet when Alex asked me to play with him. I told him I was going to have breakfast first. He said NO, I want you to play with me. He did this throughout the whole day. I wouldn’t mind playing with Alex if he wouldn’t pester me all day long.
I had breakfast and got dressed. Charlie had gotten Alex his breakfast. I got Alex dressed. Charlie went out to the bank.
I felt really drained today like I had no energy at all. Alex played on and off. Charlie came back at 10:45 a.m. and got ready to go to work. They asked him to come in at noon.
I tried putting Alex down for a nap before one o’clock., but he wouldn’t go to sleep. Alex seemed very hard to handle today. I think he’s just really bored. He’s use to doing so much it’s been really hard on him.
Alex didn’t believe me that Charlie would be home before dinner. Charlie got home at four o’clock and we had dinner after five o’clock. I did the dishes and got ready to go out. I had about enough today, it was really hard to handle. Really quite depressing when you think of it, sometimes I can hardly wait to get out.
I came home at 8:30 p.m. I gave Alex a bath. He screamed he didn’t want a bath. He went into his room and threw his sitn’drive. It broke in half and I told Alex that I wouldn’t buy him another one. He said that’s okay I didn’t like it anyways. What can I say!
Alex asked Charlie to brush his teeth and read him a story. Alex came and gave me a hug and kiss. He can be such a sweet child when he wants to, I really love him so much.
Alex was asleep by nine o’clock. I went and watched TV for an hour or so. Then I wrote in the journal for about an hour. It’s after eleven o’clock, I’m going to bed soon.
No tests
Medicine
Septra 9:50 a.m. ----- 7:30 p.m.
Temperature 36.49C 10:00 a.m. 35.70C 9:00 p.m.
I had breakfast and got dressed. Charlie had gotten Alex his breakfast. I got Alex dressed. Charlie went out to the bank.
I felt really drained today like I had no energy at all. Alex played on and off. Charlie came back at 10:45 a.m. and got ready to go to work. They asked him to come in at noon.
I tried putting Alex down for a nap before one o’clock., but he wouldn’t go to sleep. Alex seemed very hard to handle today. I think he’s just really bored. He’s use to doing so much it’s been really hard on him.
Alex didn’t believe me that Charlie would be home before dinner. Charlie got home at four o’clock and we had dinner after five o’clock. I did the dishes and got ready to go out. I had about enough today, it was really hard to handle. Really quite depressing when you think of it, sometimes I can hardly wait to get out.
I came home at 8:30 p.m. I gave Alex a bath. He screamed he didn’t want a bath. He went into his room and threw his sitn’drive. It broke in half and I told Alex that I wouldn’t buy him another one. He said that’s okay I didn’t like it anyways. What can I say!
Alex asked Charlie to brush his teeth and read him a story. Alex came and gave me a hug and kiss. He can be such a sweet child when he wants to, I really love him so much.
Alex was asleep by nine o’clock. I went and watched TV for an hour or so. Then I wrote in the journal for about an hour. It’s after eleven o’clock, I’m going to bed soon.
No tests
Medicine
Septra 9:50 a.m. ----- 7:30 p.m.
Temperature 36.49C 10:00 a.m. 35.70C 9:00 p.m.
Saturday, July 23, 2011
Diagnosis: Leukemia; July 23, 1987
Alex woke me up this morning at six o’clock. He was calling Mama, Mama. I went into his room and he went back to sleep once he saw me. Unfortunately this woke Charlie up and he didn’t go back to sleep.
Charlie took my car in to be repaired.
Alex and I woke up at ten o’clock. It was good for Alex to have a long sleep. I sure hope his blood is up on Monday. It’s been weighing heavy on my mind all week. I have a feeling that Alex was playing too hard because the time he started playing really hard like he use to his blood count started dropping. His ANC was 696,416,55 and 155. It was after his ANC was 696 that Alex has become so active. Sure hope I’m right. This week he’s been indoors and playing quite quietly.
We had breakfast, Charlie brought pastries from China Town. I had a shower and got dressed. Then I got Alex to have a shower, dressed and I did his laundry. Charlie went outside to do the lawn.
I went out and returned the video. I came home around 2:30 p.m. Charlie got ready for work and left.
Alex was watching a video, I gave him a present. He was really excited and played with it all day.
Alex wanted a snack so I gave him carrot sticks. I read him some stories while he ate. I did the dishes then I started dinner. We had dinner after five o’clock. Alex watched a video after dinner. I did the dinner dishes and when I checked on Alex he was asleep. I woke him up and gave him his medicine. I thought he would go back to sleep but he was wide awake.
We played with his new toys and at seven o’clock I gave him a bath. I got Alex ready for bed.
I had quite a time getting him to pick up his toys but he finally did it. I read him a story and told him to go to sleep. Alex said he couldn’t go to sleep, there were monsters in his room, the blinds were the wrong way and finally he needed Kelly in his room. I changed the blinds and brought Kelly in.
I watched TV and wrote in the journal for about an hour.
It’s almost eleven o’clock, I’m going to bed soon.
No tests
Medicine
Septra 10:00 a.m. ----- 6:30 p.m.
Temperature 36.58C 10:40 a.m. 36.29C 5:00 p.m. 36.50C 7:00 p.m.
Charlie took my car in to be repaired.
Alex and I woke up at ten o’clock. It was good for Alex to have a long sleep. I sure hope his blood is up on Monday. It’s been weighing heavy on my mind all week. I have a feeling that Alex was playing too hard because the time he started playing really hard like he use to his blood count started dropping. His ANC was 696,416,55 and 155. It was after his ANC was 696 that Alex has become so active. Sure hope I’m right. This week he’s been indoors and playing quite quietly.
We had breakfast, Charlie brought pastries from China Town. I had a shower and got dressed. Then I got Alex to have a shower, dressed and I did his laundry. Charlie went outside to do the lawn.
I went out and returned the video. I came home around 2:30 p.m. Charlie got ready for work and left.
Alex was watching a video, I gave him a present. He was really excited and played with it all day.
Alex wanted a snack so I gave him carrot sticks. I read him some stories while he ate. I did the dishes then I started dinner. We had dinner after five o’clock. Alex watched a video after dinner. I did the dinner dishes and when I checked on Alex he was asleep. I woke him up and gave him his medicine. I thought he would go back to sleep but he was wide awake.
We played with his new toys and at seven o’clock I gave him a bath. I got Alex ready for bed.
I had quite a time getting him to pick up his toys but he finally did it. I read him a story and told him to go to sleep. Alex said he couldn’t go to sleep, there were monsters in his room, the blinds were the wrong way and finally he needed Kelly in his room. I changed the blinds and brought Kelly in.
I watched TV and wrote in the journal for about an hour.
It’s almost eleven o’clock, I’m going to bed soon.
No tests
Medicine
Septra 10:00 a.m. ----- 6:30 p.m.
Temperature 36.58C 10:40 a.m. 36.29C 5:00 p.m. 36.50C 7:00 p.m.
Friday, July 22, 2011
Diagnosis: Leukemia; July 22, 1987
I woke Charlie up before seven o’clock, he said he would get up early and wait for Brent. Aaron came at 7:20 a.m. and dropped Brent off. Alex was awake, they went and played together. Charlie had told me to go back to bed. I slept until nine o’clock.
Alex and Brent made sparkle stars and pictures. Then they had a snack and played some more. I gave them lunch and after lunch they watched a video.
I went out and returned the video. I came home before two o’clock. I had told Brent and Alex to put away all the toys. The had made a real mess of Alex’s room and I wanted them put away before I got back. When I got back they hadn’t done any of it. I told them to clean up night now. Alex and I had a disagreement. He said the toys were too heavy for him to put away. I took him into our bedroom and I told him he would have to stay there until he calmed down. He was crying so much he was almost hysterical. Alex finally calmed down and apologized.
I iced the cupcakes and we sang HAPPY BIRTHDAY to Brent. I had put a candle on Brent’s cupcake.
Alex and Brent watched TV, Alex fell asleep at 3:30 p.m. After awhile Brent played video games. At 4:30 p.m. Brent wanted to go outside and ride Alex’s bike. At 4:45 p.m. I told Brent to come in, we went and woke Alex up. Shirley arrived shortly after. They left at 5:30 p.m.
I gave Alex another surprise, I spent about half an hour putting it together. We had dinner after six o’clock.
Alex played with his new toy for quite awhile. I gave Alex a bath at nine o’clock. I had put the sprinkler on earlier so I moved them. I got Alex ready for bed, I told him he could watch TV.
I wrote in the journal for about an hour.
Alex went to bed at eleven o’clock. It’s 11:10 p.m. I’ll go to bed soon.
No tests
Medicine
Septra 9:30 a.m. ----- 8:00 p.m.
Temperature 36.91C 9:30 a.m. 36.27C 8:00 p.m.
Alex and Brent made sparkle stars and pictures. Then they had a snack and played some more. I gave them lunch and after lunch they watched a video.
I went out and returned the video. I came home before two o’clock. I had told Brent and Alex to put away all the toys. The had made a real mess of Alex’s room and I wanted them put away before I got back. When I got back they hadn’t done any of it. I told them to clean up night now. Alex and I had a disagreement. He said the toys were too heavy for him to put away. I took him into our bedroom and I told him he would have to stay there until he calmed down. He was crying so much he was almost hysterical. Alex finally calmed down and apologized.
I iced the cupcakes and we sang HAPPY BIRTHDAY to Brent. I had put a candle on Brent’s cupcake.
Alex and Brent watched TV, Alex fell asleep at 3:30 p.m. After awhile Brent played video games. At 4:30 p.m. Brent wanted to go outside and ride Alex’s bike. At 4:45 p.m. I told Brent to come in, we went and woke Alex up. Shirley arrived shortly after. They left at 5:30 p.m.
I gave Alex another surprise, I spent about half an hour putting it together. We had dinner after six o’clock.
Alex played with his new toy for quite awhile. I gave Alex a bath at nine o’clock. I had put the sprinkler on earlier so I moved them. I got Alex ready for bed, I told him he could watch TV.
I wrote in the journal for about an hour.
Alex went to bed at eleven o’clock. It’s 11:10 p.m. I’ll go to bed soon.
No tests
Medicine
Septra 9:30 a.m. ----- 8:00 p.m.
Temperature 36.91C 9:30 a.m. 36.27C 8:00 p.m.
Thursday, July 21, 2011
Diagnosis Leukemia; July 21, 1987
It’s our anniversary today, eight years! It’s hard to believe.
Alex came into bed around one o’clock. He cried a little bit but the pain in his legs seems to have lessened.
I woke up before nine o’clock. I heard Alex and Charlie talking. I had my breakfast and got Alex a sandwich. I got dressed and started vacuuming the house.
Charlie went out shopping. I finished vacuuming and then I washed all the floors. I went out around one o’clock. By the time I came back it was time for Charlie to go to work.
Alex watched a video and after it was over he said so what are we going to do now. I told him there was a surprise in the spare room. He grinned away and went and got his prize.
I went and started cooking dinner. I told Alex if he brought his new books into the kitchen I would read them. He went and got his books, I read them in between cooking dinner. We had dinner at 5:30 p.m.
After dinner we made cupcakes, tomorrow Brent is coming over. Alex said he wants to have a party, since it’s Brent’s birthday on Saturday.
Alex had a bath at seven o’clock and got ready for bed. Alex and I put away his toys then I read him a story. Alex said he couldn’t sleep but it looks more like he doesn’t want to sleep yet. I told him I would be back in a couple of minutes to sit with him but he was fast asleep.
I watched TV for awhile then I cleaned up the kitchen. I wrote in the journal for about an hour. I’m going to bed soon.
No tests
Medicine
Septra 9:30 a.m. ------- 7:30 p.m.
Temperature 36.47C 10:00 a.m. 36.47C 4:00 p.m. 36.78C 7:45 p.m.
Alex came into bed around one o’clock. He cried a little bit but the pain in his legs seems to have lessened.
I woke up before nine o’clock. I heard Alex and Charlie talking. I had my breakfast and got Alex a sandwich. I got dressed and started vacuuming the house.
Charlie went out shopping. I finished vacuuming and then I washed all the floors. I went out around one o’clock. By the time I came back it was time for Charlie to go to work.
Alex watched a video and after it was over he said so what are we going to do now. I told him there was a surprise in the spare room. He grinned away and went and got his prize.
I went and started cooking dinner. I told Alex if he brought his new books into the kitchen I would read them. He went and got his books, I read them in between cooking dinner. We had dinner at 5:30 p.m.
After dinner we made cupcakes, tomorrow Brent is coming over. Alex said he wants to have a party, since it’s Brent’s birthday on Saturday.
Alex had a bath at seven o’clock and got ready for bed. Alex and I put away his toys then I read him a story. Alex said he couldn’t sleep but it looks more like he doesn’t want to sleep yet. I told him I would be back in a couple of minutes to sit with him but he was fast asleep.
I watched TV for awhile then I cleaned up the kitchen. I wrote in the journal for about an hour. I’m going to bed soon.
No tests
Medicine
Septra 9:30 a.m. ------- 7:30 p.m.
Temperature 36.47C 10:00 a.m. 36.47C 4:00 p.m. 36.78C 7:45 p.m.
Wednesday, July 20, 2011
Diagnosis: Leukemia; July 20,1987
The alarm went off at eight o’clock but I fell asleep and woke up at 8:30 a.m. Alex was still asleep in our bed, he’s still kicking me when he’s asleep.
I got up and had a shower. Charlie woke Alex up, I got Alex dressed. I gave Alex his breakfast and medicine.
We left the house for the hospital at 9:30 a.m. The hospital wasn’t very busy so we didn’t have to wait long.
Jeanie, the social worker came and talked to us for awhile. I told her how frustrated I was about the way I was told Alex would be starting chemo. That it’s very hard now knowing from one day to the next how he’ll be. All she said was that’s too bad. She really disappointed me and I thought she would of at least had an answer.
Dr S told us that Alex’s blood test showed that his ANC was 155. She said it was too low for Alex to start chemo. Dr S said we would have to wait until next week and if it wasn’t up by then they would have to find out why. She said it should be up by next week and if it wasn’t that meant that there might be something wrong with Alex’s WBC.
Here I thought Alex was doing so well on his therapy, it’s very worrisome for me. I’ve been upset all day by it, I just don’t know what to expect. I was depressed all day.
We stopped at Shanghai and got lunch. We arrived home around twelve o’clock. We had lunch then I went out shopping.
I came home before two o’clock. Alex was playing in the spare room. Charlie left for work, Alex is watching a video.
Alex seemed a bit bored so I told him there was a surprise in the spare room. His whole face lit up, it was a joy just to see him like that. He was really excited with his new toy. Alex played with it until dinner time.
We had dinner after five o’clock. After dinner we played together for awhile, then I gave Alex a bath. I got Alex ready for bed, put the sprinkler on, cleaned up the house, did the dishes, played groceries with him and then let him listen to a tape before he went to bed. He said he couldn’t sleep but I told him the doctor said he needed lots of rest and if he didn’t his blood wouldn’t come up, he might have to stay in the hospital. He didn’t like that but he finally went to sleep.
I wrote in the journal for about half an hour.
I watched a video, Jumpin’ Jack Flash. What a great movie, I sure enjoyed it. It really helped to bring me up.
Alex woke up at 10:45 p.m., he said he was thirsty. I got him a glass of lemonade. Then he asked when Charlie would be home, I told him soon. Alex went back to sleep. I finished watching the video and wrote in the journal for a few more minutes.
It’s 11:15 p.m., time for bed.
Tests
WBC 1.5
HGB 10.1
Platelets 475,000
ANC 155
Medicine
Bactrim 8:30 p.m. ----- 6:00 p.m.
Temperature 36.68C *:30 p.m. 36.72C 4:50 p.m.
I got up and had a shower. Charlie woke Alex up, I got Alex dressed. I gave Alex his breakfast and medicine.
We left the house for the hospital at 9:30 a.m. The hospital wasn’t very busy so we didn’t have to wait long.
Jeanie, the social worker came and talked to us for awhile. I told her how frustrated I was about the way I was told Alex would be starting chemo. That it’s very hard now knowing from one day to the next how he’ll be. All she said was that’s too bad. She really disappointed me and I thought she would of at least had an answer.
Dr S told us that Alex’s blood test showed that his ANC was 155. She said it was too low for Alex to start chemo. Dr S said we would have to wait until next week and if it wasn’t up by then they would have to find out why. She said it should be up by next week and if it wasn’t that meant that there might be something wrong with Alex’s WBC.
Here I thought Alex was doing so well on his therapy, it’s very worrisome for me. I’ve been upset all day by it, I just don’t know what to expect. I was depressed all day.
We stopped at Shanghai and got lunch. We arrived home around twelve o’clock. We had lunch then I went out shopping.
I came home before two o’clock. Alex was playing in the spare room. Charlie left for work, Alex is watching a video.
Alex seemed a bit bored so I told him there was a surprise in the spare room. His whole face lit up, it was a joy just to see him like that. He was really excited with his new toy. Alex played with it until dinner time.
We had dinner after five o’clock. After dinner we played together for awhile, then I gave Alex a bath. I got Alex ready for bed, put the sprinkler on, cleaned up the house, did the dishes, played groceries with him and then let him listen to a tape before he went to bed. He said he couldn’t sleep but I told him the doctor said he needed lots of rest and if he didn’t his blood wouldn’t come up, he might have to stay in the hospital. He didn’t like that but he finally went to sleep.
I wrote in the journal for about half an hour.
I watched a video, Jumpin’ Jack Flash. What a great movie, I sure enjoyed it. It really helped to bring me up.
Alex woke up at 10:45 p.m., he said he was thirsty. I got him a glass of lemonade. Then he asked when Charlie would be home, I told him soon. Alex went back to sleep. I finished watching the video and wrote in the journal for a few more minutes.
It’s 11:15 p.m., time for bed.
Tests
WBC 1.5
HGB 10.1
Platelets 475,000
ANC 155
Medicine
Bactrim 8:30 p.m. ----- 6:00 p.m.
Temperature 36.68C *:30 p.m. 36.72C 4:50 p.m.
Diagnosis: Leukemia; July 19, 1987
I woke up at eight o’clock. Alex had woken me up at three o’clock this morning. He said his legs hurt. I gave him some Tempra then we went back to sleep.
I had a shower then I got ready. Shirley came at 9:30 a.m. and we went to English Bay. The Sea Festival is on right now, actually today is the last day.
We walked along the beach but not much was happening. We walked over to Frisco’s and had brunch. Then we walked back to the car and drove to Kitsalino Beach to watch the bathtub’s come in. Around three o’clock we went back to English Bay and walked around for awhile. We went to a Greek restaurant and had dinner. We left around five o’clock.
I got home at 6:30 p.m., it was a really good day for me. I didn’t have anyone asking me anything or telling me to do something. I had a bath when I got home, Charlie and Alex were out.
About ten minutes after I got home Charlie and Alex came back. Charlie did everything he could to annoy me, he thinks everything is a big joke. It made me feel as though he had ruined my day. You would think he could at least ask if I had a good time but oh no he has to irritate me.
Charlie and Alex had dinner while I went out to the sundeck and wrote in the journal.
Charlie went grocery shopping, I cleaned up the house. Alex had his bath and got his pajamas on. Alex went to bed around ten o’clock.
I wrote in the journal until after eleven o’clock. I hadn’t done any writing since last Thursday so I had a lot of writing to do.
It’s now 11:15 p.m. I’ll go to bed soon.
No tests
Medicine
Bactrim 8:30 a.m. ----- 8:00 p.m.
Temperature 36.31C 8:30 a.m. 36.76C 8:00 p.m.
I had a shower then I got ready. Shirley came at 9:30 a.m. and we went to English Bay. The Sea Festival is on right now, actually today is the last day.
We walked along the beach but not much was happening. We walked over to Frisco’s and had brunch. Then we walked back to the car and drove to Kitsalino Beach to watch the bathtub’s come in. Around three o’clock we went back to English Bay and walked around for awhile. We went to a Greek restaurant and had dinner. We left around five o’clock.
I got home at 6:30 p.m., it was a really good day for me. I didn’t have anyone asking me anything or telling me to do something. I had a bath when I got home, Charlie and Alex were out.
About ten minutes after I got home Charlie and Alex came back. Charlie did everything he could to annoy me, he thinks everything is a big joke. It made me feel as though he had ruined my day. You would think he could at least ask if I had a good time but oh no he has to irritate me.
Charlie and Alex had dinner while I went out to the sundeck and wrote in the journal.
Charlie went grocery shopping, I cleaned up the house. Alex had his bath and got his pajamas on. Alex went to bed around ten o’clock.
I wrote in the journal until after eleven o’clock. I hadn’t done any writing since last Thursday so I had a lot of writing to do.
It’s now 11:15 p.m. I’ll go to bed soon.
No tests
Medicine
Bactrim 8:30 a.m. ----- 8:00 p.m.
Temperature 36.31C 8:30 a.m. 36.76C 8:00 p.m.
Tuesday, July 19, 2011
Diagnosis Leukemia; July 18, 1987
I woke up around nine o’clock. Charlie went out shopping, Alex and I cleaned up the house.
Alex had woken up in the middle of the night. He woke up at one o’clock crying, he said his feet hurt. I talked him into taking some Tempra. Alex said he still couldn’t sleep, so to keep his mind off it we watched TV. Alex wanted to sleep in our bed so we went to sleep around 2:30 a.m.
Alex had a sandwich around eleven o’clock. He was very cranky, he had very little sleep.
Charlie went outside to do gardening, there is a lot of weeds in between the two fences. Alex and I went outside with Charlie but all Alex did was argue with me. So I told him he had to go for a nap. Alex screamed and yelled after I put him into his room. He yelled for about half an hour. Just after he had settled down Charlie went into his room and said I thought you were going to come and help me. I yelled at Charlie, what are you doing I just got Alex settled down. Charlie was taken back but I wanted Alex to have a nap or else we wouldn’t be able to go out. Alex must have been really tired because he stayed in his bed. Alex had a nap for a couple of hours.
I went outside to help Charlie and I came in at three o’clock.
Shirley phoned, we’re going to go out together tomorrow for the day. I can hardly wait!
I had a shower then I went to wake Alex up. Alex hadn’t had his medicine from this morning yet. I had to get Charlie to help me.
Mom phoned and asked us for dinner. We left before four o’clock. Alex complained the whole time through dinner. He said he didn’t like chicken it was yucky. He said the size of the food was too big. Dad said let him go hungry it’s just not worth it.
At about nine o’clock Alex said he wanted to go home, so we left.
Alex had his medicine when we got home. He went to bed around eleven o’clock. I tided up the house and packed a bag for tomorrow.
I went to bed after eleven o’clock.
No tests
Medicine
Bactrim ------ 3:10 p.m. 10:00 p.m.
Temperature 36.21C 3:10 p.m. 36.28C 10:00 p.m.
Alex had woken up in the middle of the night. He woke up at one o’clock crying, he said his feet hurt. I talked him into taking some Tempra. Alex said he still couldn’t sleep, so to keep his mind off it we watched TV. Alex wanted to sleep in our bed so we went to sleep around 2:30 a.m.
Alex had a sandwich around eleven o’clock. He was very cranky, he had very little sleep.
Charlie went outside to do gardening, there is a lot of weeds in between the two fences. Alex and I went outside with Charlie but all Alex did was argue with me. So I told him he had to go for a nap. Alex screamed and yelled after I put him into his room. He yelled for about half an hour. Just after he had settled down Charlie went into his room and said I thought you were going to come and help me. I yelled at Charlie, what are you doing I just got Alex settled down. Charlie was taken back but I wanted Alex to have a nap or else we wouldn’t be able to go out. Alex must have been really tired because he stayed in his bed. Alex had a nap for a couple of hours.
I went outside to help Charlie and I came in at three o’clock.
Shirley phoned, we’re going to go out together tomorrow for the day. I can hardly wait!
I had a shower then I went to wake Alex up. Alex hadn’t had his medicine from this morning yet. I had to get Charlie to help me.
Mom phoned and asked us for dinner. We left before four o’clock. Alex complained the whole time through dinner. He said he didn’t like chicken it was yucky. He said the size of the food was too big. Dad said let him go hungry it’s just not worth it.
At about nine o’clock Alex said he wanted to go home, so we left.
Alex had his medicine when we got home. He went to bed around eleven o’clock. I tided up the house and packed a bag for tomorrow.
I went to bed after eleven o’clock.
No tests
Medicine
Bactrim ------ 3:10 p.m. 10:00 p.m.
Temperature 36.21C 3:10 p.m. 36.28C 10:00 p.m.
Sunday, July 17, 2011
Diagnosis: Leukemia; July 17, 1987
Alex woke up in the middle of the night crying. I went into his room, he was asleep but he kept on crying. I patted him on his back and he went back to sleep.
I went back to sleep and woke up at nine o’clock. I cleaned the bathrooms, had a shower and got dressed. I made lunch, tidied up the house.
Charlie went out shopping and when he came back I went out.
I went to the bank, Toy City, the mall and Consumers. We got a family allowance cheque so I told Alex he could buy something with the money. I bought Alex toy groceries and a battery operated car. Alex was really excited to get the new toys. He asked who’s toys they were. I told him they’re yours, he said WOW!
Charlie went out to buy dinner, we ate around six o’clock. After dinner we went for a walk.
Alex and I watched TV and played until it was time for him to go to bed. Alex went to bed around nine o’clock.
I cleaned up the house and went to bed after eleven o’clock.
No tests
Medicine
Bactria 10:00 a.m. ----- 8:00 p.m.
Temperature 36.77C 10:00 a.m. 36.40C 5:30 p.m. 36.29C 8:00 p.m.
I went back to sleep and woke up at nine o’clock. I cleaned the bathrooms, had a shower and got dressed. I made lunch, tidied up the house.
Charlie went out shopping and when he came back I went out.
I went to the bank, Toy City, the mall and Consumers. We got a family allowance cheque so I told Alex he could buy something with the money. I bought Alex toy groceries and a battery operated car. Alex was really excited to get the new toys. He asked who’s toys they were. I told him they’re yours, he said WOW!
Charlie went out to buy dinner, we ate around six o’clock. After dinner we went for a walk.
Alex and I watched TV and played until it was time for him to go to bed. Alex went to bed around nine o’clock.
I cleaned up the house and went to bed after eleven o’clock.
No tests
Medicine
Bactria 10:00 a.m. ----- 8:00 p.m.
Temperature 36.77C 10:00 a.m. 36.40C 5:30 p.m. 36.29C 8:00 p.m.
Diagnois: Leukemia; July 16, 1987
Alex woke me up at ten o’clock, I told him he had to have a bath. Alex cried and cried, I don’t want a bath he said. I told him I was going to throw him into the bathtub. Alex ran and got into the bathtub, he thought that was a big joke.
Charlie went to the dentist. Alex was very upset that Charlie didn’t give him a kiss and a hug before he left. I took Alex out of the tub and got him dry. I got him dressed and then we had breakfast. I got dressed and did the laundry. Then I cleaned up the house, did the dishes, put the dishwasher on and put away Alex’s clothes.
We had lunch and then Alex watched Curious George on TV.
I made rice crispies squares and Charlie left for work. Alex played in his room for awhile. We went for a walk at four o’clock.
Shirley, Brent and Monique came around five o’clock. I went to McDonald’s and got our dinner. After dinner we went outside, Alex and Brent took turns riding Alex’s bike. We came in before seven o’clock.
Alex and Brent played in Alex’s room. Shirley, Brent and Monique left after eight o’clock.
Alex went to bed shortly after they went.
I wrote in the journal for about half an hour. I watered the lawn from eight until ten o’clock. I’ll go to bed soon, it’s almost eleven o’clock.
No tests
Medicine
Bactrim 10:00 a.m. ----- 8:20 p.m.
Temperature 36.26C 8:27 p.m.
Charlie went to the dentist. Alex was very upset that Charlie didn’t give him a kiss and a hug before he left. I took Alex out of the tub and got him dry. I got him dressed and then we had breakfast. I got dressed and did the laundry. Then I cleaned up the house, did the dishes, put the dishwasher on and put away Alex’s clothes.
We had lunch and then Alex watched Curious George on TV.
I made rice crispies squares and Charlie left for work. Alex played in his room for awhile. We went for a walk at four o’clock.
Shirley, Brent and Monique came around five o’clock. I went to McDonald’s and got our dinner. After dinner we went outside, Alex and Brent took turns riding Alex’s bike. We came in before seven o’clock.
Alex and Brent played in Alex’s room. Shirley, Brent and Monique left after eight o’clock.
Alex went to bed shortly after they went.
I wrote in the journal for about half an hour. I watered the lawn from eight until ten o’clock. I’ll go to bed soon, it’s almost eleven o’clock.
No tests
Medicine
Bactrim 10:00 a.m. ----- 8:20 p.m.
Temperature 36.26C 8:27 p.m.
Saturday, July 16, 2011
Diagnosis: Leukemia; July 15, 1987
The telephone woke me up at nine o’clock this morning. Charlie was hammering downstairs which actually woke me up previously. The phone call was from the dentist to remind Charlie he has an appointment tomorrow.
I had breakfast and made Alex his breakfast. I went downstairs to see how Charlie was doing. He said I should go and see Marla this morning. I phoned Marla and she said she would be home this morning. I told her I would be over in about half an hour. I had a shower and get ready to go.
I had a really good visit, it was nice to be with someone else who I can talk about anything.
I came home before one o’clock. Lanie lent Alex some more toys. Alex was quite excited about this and played quite well most of the afternoon.
We had dinner at five o’clock. Charlie was home so it made things a lot easier.
Shirley phoned around seven o’clock, she said she could bring Brent over tomorrow night. She asked if she should come over or if they should just drop Brent off. I teased her, I told her if you don’t want to come that’s fine. Shirley said well I was just there on Monday I thought maybe you wouldn’t want my company. I started to laugh. She said you little brat! Shirley said she’ll be over tomorrow night around five o’clock.
We went to Mom and Dad’s, Charlie wanted to watch the Sea Festival fireworks. They were really good, Alex really enjoyed them.
We got home before midnight. Alex was asleep, I put him in his bed. I went to bed shortly afterwards.
No tests
Medicine
Bactrim 9:15 a.m. ----- 8:00 p.m.
Temperature 36.53C 9:15 p.m. 36.59 4:30 p.m. 36.17C 8:00 p.m.
I had breakfast and made Alex his breakfast. I went downstairs to see how Charlie was doing. He said I should go and see Marla this morning. I phoned Marla and she said she would be home this morning. I told her I would be over in about half an hour. I had a shower and get ready to go.
I had a really good visit, it was nice to be with someone else who I can talk about anything.
I came home before one o’clock. Lanie lent Alex some more toys. Alex was quite excited about this and played quite well most of the afternoon.
We had dinner at five o’clock. Charlie was home so it made things a lot easier.
Shirley phoned around seven o’clock, she said she could bring Brent over tomorrow night. She asked if she should come over or if they should just drop Brent off. I teased her, I told her if you don’t want to come that’s fine. Shirley said well I was just there on Monday I thought maybe you wouldn’t want my company. I started to laugh. She said you little brat! Shirley said she’ll be over tomorrow night around five o’clock.
We went to Mom and Dad’s, Charlie wanted to watch the Sea Festival fireworks. They were really good, Alex really enjoyed them.
We got home before midnight. Alex was asleep, I put him in his bed. I went to bed shortly afterwards.
No tests
Medicine
Bactrim 9:15 a.m. ----- 8:00 p.m.
Temperature 36.53C 9:15 p.m. 36.59 4:30 p.m. 36.17C 8:00 p.m.
Thursday, July 14, 2011
Diagnosis: Leukemia; July 14, 1987
I woke up around nine o’clock. I got dressed and had breakfast. Later I cleaned all the floors.
Charlie went out shopping. Alex had a shower after I finished doing the floors.
I went out shopping when Charlie came back. I bought Lanie, Paxton and Robert’s birthday presents.
I got home after one o’clock. I phoned Marla and told her Alex couldn’t come to Lanie’s party. I told her I would phone tomorrow and see if she was home. I planned to bring all the stuff back that Lanie lent Alex and also bring over their birthday presents.
It feels like things are getting worse for me. It’s getting harder and harder to keep Alex amused. I feel so tired today, even more so than usual.
Alex and I had dinner at five o’clock. He talked throughout the whole dinner. I told him to be quiet. Alex told me I have to talk, you know I have to talk.
Charlie came home before six o’clock.
I had a lot of trouble with Alex. He didn’t want me to come near him. He wanted Charlie to give him his medicine and to put him to bed. Alex cried so hard he became hysterical. I told him to stop crying, he called me a few names and threw a couple of things at me. By the time it was over I was furious. There’s nothing I can do with him.
I went to London Drugs and came home after nine o’clock.
I wrote in the journal when I came home. It was pretty difficult to write. I felt sick, Alex had upset me so much.
I went to bed around eleven o’clock.
No tests
Medicine
Bactrim 9:15 a.m. ----- 8:00 p.m.
Temperature 36.45C 9:40 a.m. 36.60 4:30 p.m.
Charlie went out shopping. Alex had a shower after I finished doing the floors.
I went out shopping when Charlie came back. I bought Lanie, Paxton and Robert’s birthday presents.
I got home after one o’clock. I phoned Marla and told her Alex couldn’t come to Lanie’s party. I told her I would phone tomorrow and see if she was home. I planned to bring all the stuff back that Lanie lent Alex and also bring over their birthday presents.
It feels like things are getting worse for me. It’s getting harder and harder to keep Alex amused. I feel so tired today, even more so than usual.
Alex and I had dinner at five o’clock. He talked throughout the whole dinner. I told him to be quiet. Alex told me I have to talk, you know I have to talk.
Charlie came home before six o’clock.
I had a lot of trouble with Alex. He didn’t want me to come near him. He wanted Charlie to give him his medicine and to put him to bed. Alex cried so hard he became hysterical. I told him to stop crying, he called me a few names and threw a couple of things at me. By the time it was over I was furious. There’s nothing I can do with him.
I went to London Drugs and came home after nine o’clock.
I wrote in the journal when I came home. It was pretty difficult to write. I felt sick, Alex had upset me so much.
I went to bed around eleven o’clock.
No tests
Medicine
Bactrim 9:15 a.m. ----- 8:00 p.m.
Temperature 36.45C 9:40 a.m. 36.60 4:30 p.m.
Wednesday, July 13, 2011
Diagnosis: Leukemia; July 13, 1987
I slept in Alex’s bed last night. I got up at six o’clock, Charlie and Alex were still asleep. I had breakfast then I had a shower. Charlie got up at seven o’clock. I had to wake Alex up. I gave him his medicine and he had breakfast. Then I gave Alex a bath before we went to the hospital.
We left after eight o’clock and we got to the hospital before nine o’clock. As usual we had to wait, we waited about half an hour before Alex had his blood taken. Dr S said Alex’s blood count was down and he wouldn’t be able to start maintenance or have his LP today. She said we would have to wait another week. Dr S said we wouldn’t know when Alex’s blood count would be up. It would be just a wait and see thing. I find it quite frustrating not know what to expect from week to week. Alex’s ANC is very low and he shouldn’t come in contact with too many people.
We got home after eleven o’clock.
I don’t know what it is but Alex is always after me it seems. He wants me to do this and do that. He continually talks to me. I wonder when I’ll feel more like myself. I’m always tired.
Marla phoned and invited Alex to Lanie’s birthday party I told her I would phone her back and let her know if he could go. Marla said Paxton had to go to the hospital for some tests. His growth rate is very low and when he does grow he losses weight. I really felt for her, it reminded me of when we went to the hospital in the beginning when Alex was first sick. I was upset by the whole thing.
I went to the mall and did some shopping. Mostly it was to get away from it all. When I got home, I went outside and did some gardening.
Alex wanted me to play with him. We went to the backyard, Alex played in his swimming pool.
We had dinner around five o’clock. Shirley dropped by at six o’clock. She thought if we hadn’t had dinner we could order something in. I made her dinner. Shirley left at nine thirty.
I cleaned up the house and went to bed after eleven o’clock.
Tests
WBC 1.1
HGB 8.4
Platelets 362,0000
ANC 55
Medicine
Bactrim 7:30 a.m. ------ 7:30 p.m.
Temperature 36.96C 4:00 p.m. 36.79C 9:45 p.m.
We left after eight o’clock and we got to the hospital before nine o’clock. As usual we had to wait, we waited about half an hour before Alex had his blood taken. Dr S said Alex’s blood count was down and he wouldn’t be able to start maintenance or have his LP today. She said we would have to wait another week. Dr S said we wouldn’t know when Alex’s blood count would be up. It would be just a wait and see thing. I find it quite frustrating not know what to expect from week to week. Alex’s ANC is very low and he shouldn’t come in contact with too many people.
We got home after eleven o’clock.
I don’t know what it is but Alex is always after me it seems. He wants me to do this and do that. He continually talks to me. I wonder when I’ll feel more like myself. I’m always tired.
Marla phoned and invited Alex to Lanie’s birthday party I told her I would phone her back and let her know if he could go. Marla said Paxton had to go to the hospital for some tests. His growth rate is very low and when he does grow he losses weight. I really felt for her, it reminded me of when we went to the hospital in the beginning when Alex was first sick. I was upset by the whole thing.
I went to the mall and did some shopping. Mostly it was to get away from it all. When I got home, I went outside and did some gardening.
Alex wanted me to play with him. We went to the backyard, Alex played in his swimming pool.
We had dinner around five o’clock. Shirley dropped by at six o’clock. She thought if we hadn’t had dinner we could order something in. I made her dinner. Shirley left at nine thirty.
I cleaned up the house and went to bed after eleven o’clock.
Tests
WBC 1.1
HGB 8.4
Platelets 362,0000
ANC 55
Medicine
Bactrim 7:30 a.m. ------ 7:30 p.m.
Temperature 36.96C 4:00 p.m. 36.79C 9:45 p.m.
Diagnosis: Leukemial; July 12, 1987
I slept in until eleven o’clock. It was nice to sleep in for a change. Mind you for a couple of hours this morning Alex was kicking me and lying across my head. Not a very restful sleep this morning. At eight o’clock Alex asked me to come and play cars with him. I told him I was too tired and that I was not getting out of bed. He told me I could go back to bed after I played with him!
At eleven o’clock., I made breakfast. Charlie went grocery shopping.
Charlie phoned Dad and asked him to come over and help him with the drywall. Charlie asked them for dinner but Mom said no. Dad came over at 1:30 p.m. they started doing the drywall.
Alex, Kelly and I went for a walk. Dad and Charlie finished the drywall at four o’clock. Dad left just after four o’clock. I phoned Mom to let her know Dad had left.
Alex sure has had a lot of energy lately. He runs around the house like anything. Before he got sick he went to gym classes, swimming classes, and an occasional course at the recreation centre. He also saw one of his friends usually once a week. No wonder he has so much energy.
We had dinner after five o’clock, before that the ice cream truck came. Alex was so excited to see the ice cream truck. Charlie went and got us all one.
We went for a drive at seven o’clock. Alex fell asleep on the way home, luckily I gave Alex his medicine before we left. I put Alex in his bed when we came home.
We watched TV and I did the laundry. I also washed the dishes.
Alex woke up at ten o’clock. He went to sleep too early no doubt. Charlie said he’ll watch Alex so I can go to bed.
It’s eleven o’clock now. I’ll go to bed now.
No tests
Medicine
Bactrim 11:50 a.m. ----- 6:30 p.m.
Temperature 36.37C 11:50 a.m. ----- 36. 58C 6:30 p.m.
At eleven o’clock., I made breakfast. Charlie went grocery shopping.
Charlie phoned Dad and asked him to come over and help him with the drywall. Charlie asked them for dinner but Mom said no. Dad came over at 1:30 p.m. they started doing the drywall.
Alex, Kelly and I went for a walk. Dad and Charlie finished the drywall at four o’clock. Dad left just after four o’clock. I phoned Mom to let her know Dad had left.
Alex sure has had a lot of energy lately. He runs around the house like anything. Before he got sick he went to gym classes, swimming classes, and an occasional course at the recreation centre. He also saw one of his friends usually once a week. No wonder he has so much energy.
We had dinner after five o’clock, before that the ice cream truck came. Alex was so excited to see the ice cream truck. Charlie went and got us all one.
We went for a drive at seven o’clock. Alex fell asleep on the way home, luckily I gave Alex his medicine before we left. I put Alex in his bed when we came home.
We watched TV and I did the laundry. I also washed the dishes.
Alex woke up at ten o’clock. He went to sleep too early no doubt. Charlie said he’ll watch Alex so I can go to bed.
It’s eleven o’clock now. I’ll go to bed now.
No tests
Medicine
Bactrim 11:50 a.m. ----- 6:30 p.m.
Temperature 36.37C 11:50 a.m. ----- 36. 58C 6:30 p.m.
Tuesday, July 12, 2011
Diagnosis: Leukemia; July 11, 1987
Alex woke me up at nine o’clock. Charlie had told Alex it was late and I should get out of bed.
Charlie and I made breakfast, Alex had toast. We all went downstairs, Charlie worked on the frame work. I cleaned up the basement. Then we went and cleaned up the garage. We hung a lot of the stuff up. Charlie swept one side and I swept the other side. It sure looks a lot better.
We went to Burger King and McDonalds’ for dinner. Then we went to Mom and Dad’s. We hadn’t been there very long when Alex said he had to go home. I told him no that we had just got there. Alex started to cry he said he wanted to go home and play. I told him if we went home he would go to bed. I took him into Mom and Dad’s bedroom and told him to lie down. Alex started to cry again. Dad came in and talked to him, I went back into the dining room.
Dad told him a story which seemed to help Alex. I think Alex was just tired. We left at ten o’clock, Alex fell asleep on the way home. I put Alex to bed when we got home.
I went to bed around midnight.
No tests
Medicine
Bactrim 10:00 a.m. ------ 10:00 p.m.
Temperature 36.25C 11:30 a.m. 37.07C 7:00 p.m. 36.71C 10:00 p.m.
Charlie and I made breakfast, Alex had toast. We all went downstairs, Charlie worked on the frame work. I cleaned up the basement. Then we went and cleaned up the garage. We hung a lot of the stuff up. Charlie swept one side and I swept the other side. It sure looks a lot better.
We went to Burger King and McDonalds’ for dinner. Then we went to Mom and Dad’s. We hadn’t been there very long when Alex said he had to go home. I told him no that we had just got there. Alex started to cry he said he wanted to go home and play. I told him if we went home he would go to bed. I took him into Mom and Dad’s bedroom and told him to lie down. Alex started to cry again. Dad came in and talked to him, I went back into the dining room.
Dad told him a story which seemed to help Alex. I think Alex was just tired. We left at ten o’clock, Alex fell asleep on the way home. I put Alex to bed when we got home.
I went to bed around midnight.
No tests
Medicine
Bactrim 10:00 a.m. ------ 10:00 p.m.
Temperature 36.25C 11:30 a.m. 37.07C 7:00 p.m. 36.71C 10:00 p.m.
Monday, July 11, 2011
Diagnosis: Leukemia; July 10, 1987
Alex woke me up at nine o’clock. He told me the sun was up and I should get out of bed.
Charlie went to the bank and the grocery store. Alex and I had breakfast.
I cleaned house and then I washed the floors. Charlie came home and went to cut the lawn. Alex went out with him.
I had a shower and got dressed. I went outside and stayed with Alex while Charlie finished cutting the lawn. I swept in front of the door and the driveway. A woman stopped in front of the house and asked about the siding.
I went and had lunch then I went to the mall. Charlie made a big deal about it. It seems like he thinks it’s really easy for me to stay home. Everyone needs to go out and see other people, even it’s only to go shopping.
I came home before two o’clock. Alex, Kelly and I went for a walk. Alex and I played with his cars when we got back. We went to MacDonald’s for dinner then we went to Lions Park. There weren’t too many people there, I made sure we stayed away from them. Most people were at the other end of the park from us. After awhile kids started coming down to where we were, so I told Alex we had to leave. Alex said okay. Alex wanted to go for a drive. We came home before six o’clock. Alex fell asleep on the way home, I put him in his bed.
I woke Alex up at seven o’clock to take his medicine. He was furious, he said I scared him. I don’t know how I could of done that. I do what I usually do, I talk to him until he wakes up. Alex went to sleep after he had his medicine.
Alex woke up at eight o’clock and had a snack. We watched TV and wrote in his activity book until eleven o’clock. I’m now getting him ready for bed. I’m going to bed soon.
No tests
Medicine
Bactrim 9:00 a.m. ------7:00 p.m.
Temperature 36.97C 10:15 a.m. 36.77C 3:20 p.m. 36.46C 9:40 p.m.
Charlie went to the bank and the grocery store. Alex and I had breakfast.
I cleaned house and then I washed the floors. Charlie came home and went to cut the lawn. Alex went out with him.
I had a shower and got dressed. I went outside and stayed with Alex while Charlie finished cutting the lawn. I swept in front of the door and the driveway. A woman stopped in front of the house and asked about the siding.
I went and had lunch then I went to the mall. Charlie made a big deal about it. It seems like he thinks it’s really easy for me to stay home. Everyone needs to go out and see other people, even it’s only to go shopping.
I came home before two o’clock. Alex, Kelly and I went for a walk. Alex and I played with his cars when we got back. We went to MacDonald’s for dinner then we went to Lions Park. There weren’t too many people there, I made sure we stayed away from them. Most people were at the other end of the park from us. After awhile kids started coming down to where we were, so I told Alex we had to leave. Alex said okay. Alex wanted to go for a drive. We came home before six o’clock. Alex fell asleep on the way home, I put him in his bed.
I woke Alex up at seven o’clock to take his medicine. He was furious, he said I scared him. I don’t know how I could of done that. I do what I usually do, I talk to him until he wakes up. Alex went to sleep after he had his medicine.
Alex woke up at eight o’clock and had a snack. We watched TV and wrote in his activity book until eleven o’clock. I’m now getting him ready for bed. I’m going to bed soon.
No tests
Medicine
Bactrim 9:00 a.m. ------7:00 p.m.
Temperature 36.97C 10:15 a.m. 36.77C 3:20 p.m. 36.46C 9:40 p.m.
Sunday, July 10, 2011
Diagnosis: Leukemia; July 9, 1987
Alex woke me up at nine o’clock. He told me Charlie needed my help downstairs. I got up and made our breakfasts. Charlie called me and I went downstairs to help him with the drywall.
The plant by the stairs has a mushroom growing out of the bottom of the pot. It sure is weird, this is all I need. If Alex had gotten a hold of it, it could have been very harmful The mushrooms were a dark yellow. I took them out of the pot and threw them in the garage.
I had a shower and got dressed. I went out to the mall. I hadn’t been out since Tuesday, I really needed the break. I was finally able to find a pair of thongs for Alex. I had a drawing of his foot and luckily I got the right size. I came home before two o’clock and had my lunch.
Charlie went to work and I cleaned up the house. I vacuumed the house.
Alex and I had dinner around five o’clock. After dinner we watched TV for awhile then we went for a walk. We did some gardening, we came in at 7:40 p.m. I gave Alex a bath. Alex said I need to have a bath, I’m dirty! We had a snack then Alex asked me to read him a story before he went to sleep. I told him to pick up his toys and I would read him a story. It took him about an hour to do it! I read him his story and he was asleep before ten o’clock.
I wrote in the journal for about half an hour.
I did the dishes and took the garbage downstairs. It’s 10:25 p.m., I’m going to go to bed soon.
No tests
Medicine
Bactrim 11:30 a.m. ------ 8:00 p.m.
Temperature 36.79C 11:30 a.m. 36.25C 8:30 p.m.
The plant by the stairs has a mushroom growing out of the bottom of the pot. It sure is weird, this is all I need. If Alex had gotten a hold of it, it could have been very harmful The mushrooms were a dark yellow. I took them out of the pot and threw them in the garage.
I had a shower and got dressed. I went out to the mall. I hadn’t been out since Tuesday, I really needed the break. I was finally able to find a pair of thongs for Alex. I had a drawing of his foot and luckily I got the right size. I came home before two o’clock and had my lunch.
Charlie went to work and I cleaned up the house. I vacuumed the house.
Alex and I had dinner around five o’clock. After dinner we watched TV for awhile then we went for a walk. We did some gardening, we came in at 7:40 p.m. I gave Alex a bath. Alex said I need to have a bath, I’m dirty! We had a snack then Alex asked me to read him a story before he went to sleep. I told him to pick up his toys and I would read him a story. It took him about an hour to do it! I read him his story and he was asleep before ten o’clock.
I wrote in the journal for about half an hour.
I did the dishes and took the garbage downstairs. It’s 10:25 p.m., I’m going to go to bed soon.
No tests
Medicine
Bactrim 11:30 a.m. ------ 8:00 p.m.
Temperature 36.79C 11:30 a.m. 36.25C 8:30 p.m.
Saturday, July 9, 2011
Diagnosis: Leukemia; July 8, 1987
I had a hard time falling asleep last night as I had a nap in the afternoon. Alex crawled into bed before one o’clock. I think I fell asleep after one o’clock.
Alex woke me up at nine o’clock. He told me he wanted to get dressed. I got up, Alex had dressed himself. We had breakfast and I cleaned up the house. I dusted most of the furniture.
Charlie came home, he had gone to the dentist for a root canal. His mouth was really sore.
Alex had lunch with Charlie, while I finished dusting. I had a shower and then had lunch.
Charlie left for work around 2:30 p.m. Alex played while I made macaroni and cheese.
Alex and I played games until dinner time. We had dinner around five o’clock. After dinner we looked at photos and I wrote on them and put them in the photo album.
I got Alex ready for bed at seven o’clock. Alex wanted me to read him a story. I told him to pick up all his toys. He did it, it took him a long time but he finally got it done. Alex was asleep before eight o’clock.
I watched TV for awhile then I did the dishes. I wrote in the journal for about 15 minutes. It’s 10:10 p.m., I’ll be going to bed soon.
No tests
Medicine
Bactrim 10:00 a.m. ----- 6:30 p.m.
Temperature 36.58C 6:50 p.m.
Alex woke me up at nine o’clock. He told me he wanted to get dressed. I got up, Alex had dressed himself. We had breakfast and I cleaned up the house. I dusted most of the furniture.
Charlie came home, he had gone to the dentist for a root canal. His mouth was really sore.
Alex had lunch with Charlie, while I finished dusting. I had a shower and then had lunch.
Charlie left for work around 2:30 p.m. Alex played while I made macaroni and cheese.
Alex and I played games until dinner time. We had dinner around five o’clock. After dinner we looked at photos and I wrote on them and put them in the photo album.
I got Alex ready for bed at seven o’clock. Alex wanted me to read him a story. I told him to pick up all his toys. He did it, it took him a long time but he finally got it done. Alex was asleep before eight o’clock.
I watched TV for awhile then I did the dishes. I wrote in the journal for about 15 minutes. It’s 10:10 p.m., I’ll be going to bed soon.
No tests
Medicine
Bactrim 10:00 a.m. ----- 6:30 p.m.
Temperature 36.58C 6:50 p.m.
Friday, July 8, 2011
Diagnosis: Leukemia; July 7, 1987
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.
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.
Wednesday, July 6, 2011
Diagnosis: Leukemia; July 6, 1987
It’s Mom’s Birthday today!
I woke up at six o’clock and woke Alex up to have his medicine. Alex said he wanted Charlie. I got the medicine ready while Alex went and got Charlie.
Alex and I went back to bed. Charlie went into Alex’s bed. Alex and Charlie woke me up at nine o’clock. I felt like I could sleep a couple more hours. It took me awhile to get out of bed.
Charlie went to the mall and Save-on-Foods. We waited for Charlie to come back before we made breakfast, as there wasn’t any bread. Alex watched TV and I cleaned up the house and did the laundry.
Charlie came home, Alex and I put away the groceries. Alex wanted a cheese sandwich. He played with his cars and trucks in his room.
I had lunch and went to the mall afterwards. I don’t know what it is but things have been getting to me. It was good to get away from it all. I came home around two o’clock.
I made a stew and put it in the crock pot, then I made a meatloaf. I want to have a few things made and put in the freezer. Lately I haven’t felt like cooking, I feel so drained by the afternoon.
Alex played in his room most of the afternoon. Before dinner he watched the Elephant Show. Alex had dinner at five o’clock, I had it around six o’clock. After dinner Alex and I did some colouring. Then he played in his room for awhile, I did the dishes and finished doing the stew.
Alex watched Mr Dressup until 8:30 p.m. He had a bath and went to bed. I cleaned up Alex’s room. As usual he said he couldn’t do it. So there was no story, it sounds mean but he has to learn to clean up his room.
Alex was asleep by nine o’clock. I had a snack and watched TV. I wrote in the journal for about half an hour. It’s 10:45 p.m., I’ll wait until midnight and give Alex his medicine then I’ll go to bed.
No tests
Medicine
Bactrim 10:45 a.m. ------ 7:47 p.m.
Orbenin 12:00 a.m. 6:00 a.m. 12:00 p.m. 6:20 p.m.
Temperature 36.32C 10:50 a.m. 36.16C 6:35 p.m. 36.44C 9:00 p.m.
I woke up at six o’clock and woke Alex up to have his medicine. Alex said he wanted Charlie. I got the medicine ready while Alex went and got Charlie.
Alex and I went back to bed. Charlie went into Alex’s bed. Alex and Charlie woke me up at nine o’clock. I felt like I could sleep a couple more hours. It took me awhile to get out of bed.
Charlie went to the mall and Save-on-Foods. We waited for Charlie to come back before we made breakfast, as there wasn’t any bread. Alex watched TV and I cleaned up the house and did the laundry.
Charlie came home, Alex and I put away the groceries. Alex wanted a cheese sandwich. He played with his cars and trucks in his room.
I had lunch and went to the mall afterwards. I don’t know what it is but things have been getting to me. It was good to get away from it all. I came home around two o’clock.
I made a stew and put it in the crock pot, then I made a meatloaf. I want to have a few things made and put in the freezer. Lately I haven’t felt like cooking, I feel so drained by the afternoon.
Alex played in his room most of the afternoon. Before dinner he watched the Elephant Show. Alex had dinner at five o’clock, I had it around six o’clock. After dinner Alex and I did some colouring. Then he played in his room for awhile, I did the dishes and finished doing the stew.
Alex watched Mr Dressup until 8:30 p.m. He had a bath and went to bed. I cleaned up Alex’s room. As usual he said he couldn’t do it. So there was no story, it sounds mean but he has to learn to clean up his room.
Alex was asleep by nine o’clock. I had a snack and watched TV. I wrote in the journal for about half an hour. It’s 10:45 p.m., I’ll wait until midnight and give Alex his medicine then I’ll go to bed.
No tests
Medicine
Bactrim 10:45 a.m. ------ 7:47 p.m.
Orbenin 12:00 a.m. 6:00 a.m. 12:00 p.m. 6:20 p.m.
Temperature 36.32C 10:50 a.m. 36.16C 6:35 p.m. 36.44C 9:00 p.m.
Tuesday, July 5, 2011
Diagnosis: Leukemia; July 5, 1987
I stayed up until 1 a.m. this morning to give Alex his medicine, he had his last medicine at 7 p.m. I went to bed and got up at 6:30 a.m. to give Alex his medicine. Alex asked Charlie to come and hold him.
Alex came into bed with me, he said he couldn’t sleep in his bed it’s too lumpy. Charlie went into Alex’s bed. Alex woke me up after ten o’clock. I could hardly keep my eyes open. I felt like I could sleep for a few more hours but Alex was determined I was to get out of bed.
Alex wanted a cheese bun for breakfast and I had waffles.
Charlie had gone to Lumberland and bought two doors for the rooms downstairs. One for the laundry and the other for the bathroom.
I had a shower and got dressed. We left before one o’clock, and picked up Mom’s birthday cake. We got to Mom and Dad’s after two o’clock.
At three o’clock Alex threw up, Dad had given him some lemonade and Dad thinks after tasting it himself later that it was bad. We had dinner around five o’clock and had birthday cake for dessert. Alex had diarrhea shortly after dinner. We left around nine o’clock and got home before ten o’clock.
I had a bath, I felt like I was going to fall asleep, so the bath helped me revive.
I was just starting to write in the journal when Shirley dropped by. I was in my bathrobe, so I went to change while Charlie answered the door. Shirley left around midnight and I then woke Alex up to give him his medicine. He didn’t want it at all. Alex had only been asleep for a few hours. It’s pretty difficult for him to take his medicine when he’s half asleep.
Charlie and Alex went to bed. I wrote in the journal for about fifteen minutes. I’m going to try and put Alex back into his own bed. It’s 12:30 a.m. and I going to go to bed.
No tests
Medicine
Bactrim 10:45 a.m. ------ 8:30 p.m.
Orbenin 1: 00 a.m. 6:40 a.m. 12:30 p.m. 6:15 p.m.
Temperature 36.44C 10:45 a.m. 36.64C 12:30 p.m. 36.54C 4:10 p.m.
Alex came into bed with me, he said he couldn’t sleep in his bed it’s too lumpy. Charlie went into Alex’s bed. Alex woke me up after ten o’clock. I could hardly keep my eyes open. I felt like I could sleep for a few more hours but Alex was determined I was to get out of bed.
Alex wanted a cheese bun for breakfast and I had waffles.
Charlie had gone to Lumberland and bought two doors for the rooms downstairs. One for the laundry and the other for the bathroom.
I had a shower and got dressed. We left before one o’clock, and picked up Mom’s birthday cake. We got to Mom and Dad’s after two o’clock.
At three o’clock Alex threw up, Dad had given him some lemonade and Dad thinks after tasting it himself later that it was bad. We had dinner around five o’clock and had birthday cake for dessert. Alex had diarrhea shortly after dinner. We left around nine o’clock and got home before ten o’clock.
I had a bath, I felt like I was going to fall asleep, so the bath helped me revive.
I was just starting to write in the journal when Shirley dropped by. I was in my bathrobe, so I went to change while Charlie answered the door. Shirley left around midnight and I then woke Alex up to give him his medicine. He didn’t want it at all. Alex had only been asleep for a few hours. It’s pretty difficult for him to take his medicine when he’s half asleep.
Charlie and Alex went to bed. I wrote in the journal for about fifteen minutes. I’m going to try and put Alex back into his own bed. It’s 12:30 a.m. and I going to go to bed.
No tests
Medicine
Bactrim 10:45 a.m. ------ 8:30 p.m.
Orbenin 1: 00 a.m. 6:40 a.m. 12:30 p.m. 6:15 p.m.
Temperature 36.44C 10:45 a.m. 36.64C 12:30 p.m. 36.54C 4:10 p.m.
Leukemia: Diagnosis; July 4, 1987
I gave Alex his medicine at midnight and 6:40 a.m. I must have been really tired because I didn’t hear the alarm go off. I woke up at 6:35 a.m. Alex came into bed with me, Charlie went into Alex’s bed. Alex and I slept until 11:30 a.m.
Mom phoned to tell us Geordie, their Yorkshire Terrier had been sick last night. I think they put too much flea stuff on him.
Alex and I had breakfast and then got dressed.
I went out in the afternoon to buy Kelly dog food. I bought Alex a car and a game. I came home around four o’clock.
Charlie went and bought a take out from Sek Kee. We had dinner around five o’clock. After dinner I went downstairs and swept the floor and moved some of the stuff. Charlie had been working on the drywall this afternoon and he’s ready to do the frame for the laundry room.
Alex and I had a snack and watched TV. Alex played for awhile and I gave him a bath at eight o’clock. I read Alex a story and he went to bed after nine o’clock. Alex played with his new car in bed. He was asleep before ten o’clock.
I read for awhile then I wrote in the journal for about half an hour.
No tests
Medicine
Bactrim ------ 1:00 p.m. 9:30 p.m.
Orbenin 12:00 a.m. 6:40 a.m. 12:24 p.m. 7:00 p.m.
Temperature 36.63C 12:32 p.m. 36.50C 9:54 p.m.
Mom phoned to tell us Geordie, their Yorkshire Terrier had been sick last night. I think they put too much flea stuff on him.
Alex and I had breakfast and then got dressed.
I went out in the afternoon to buy Kelly dog food. I bought Alex a car and a game. I came home around four o’clock.
Charlie went and bought a take out from Sek Kee. We had dinner around five o’clock. After dinner I went downstairs and swept the floor and moved some of the stuff. Charlie had been working on the drywall this afternoon and he’s ready to do the frame for the laundry room.
Alex and I had a snack and watched TV. Alex played for awhile and I gave him a bath at eight o’clock. I read Alex a story and he went to bed after nine o’clock. Alex played with his new car in bed. He was asleep before ten o’clock.
I read for awhile then I wrote in the journal for about half an hour.
No tests
Medicine
Bactrim ------ 1:00 p.m. 9:30 p.m.
Orbenin 12:00 a.m. 6:40 a.m. 12:24 p.m. 7:00 p.m.
Temperature 36.63C 12:32 p.m. 36.50C 9:54 p.m.
Sunday, July 3, 2011
Diagnosis: Leukemia; July 3, 1987
I had given Alex his medicine at midnight. The alarm clock went off at 5:45 a.m. I got up and got Alex his medicine and a drink. Alex was really good, he didn’t complain at all, he said he wanted to go to the kitchen to have his medicine so he wouldn’t spill the medicine on the bed. Alex went back to bed
I wasn’t going to go back to bed but I was so tired I did. I woke up at 7:20 p.m. I didn’t have much time. I knew we would be late. I had a shower and got dressed.
I woke Alex up and gave him his medicine, Bactrim. The I got him dressed. Charlie was asleep in Alex’s bed, I asked Charlie if he was coming to the hospital. He said he would come later.
Alex and I left after eight o’clock. We got to the hospital at 8:45 a.m. We didn’t have to wait long. Mary came to tell us she was ready to do Alex’s blood test. Alex didn’t complain at all when he got his finger pricked. When we were waiting for Mary to put the band aid on she put Alex’s blood in a machine. She then keyed in Alex’s code and within a few minutes the machine showed what Alex’s blood was. It was amazing that it comes up so fast. Alex’s blood is up, so he doesn’t need a transfusion today. I sure was glad of that I’m so tired and it’s so much nicer to be at home.
I phoned Charlie, it took me three times before I could get him. I told him we would be home soon. We got home before ten o’clock. Charlie was giving Kelly a flea bath. Hopefully Kelly won’t get anymore fleas.
I went out at ten thirty, I felt I really needed a break. Everything is starting to get to me. Sometimes I feel like I could just scream. I feel totally frustrated. The hospital has such a lousy system. They change the appointment times or dates, don’t tell me what the medicine will do, it’s side effects, even the way they had us change doctors. I found that very irritating. Dr S said one day way back did Dr R tell you he wants me to look after Alex. We said no he didn’t say anything. Then Dr R comes over and then tells us. Surely they can plan things a little better. I like Dr S she’s quite easy to take to but it was very poorly done. Don’t get me wrong I’m extremely grateful for the care Alex is receiving.
Anyways I went to the bank and the mall. I bought a present for Mom from Alex. I bought Alex some colored paper, tissue paper and glue. I thought we could do a picture this afternoon.
I came home before one o’clock. As I came in the door, Alex told me a guy had come and delivered some wood for the bathroom.
I had my lunch, Alex and Charlie had already eaten. Charlie and Alex went for a drive. My car has been smelling, it smells like burnt rubber to me.
I phoned Mom to let her know Alex didn’t need a transfusion. Charlie and Alex came back when I was still on the phone. Charlie said he was going to take my car for an oil change. He came back after two o’clock. They told him something else was wrong with the car. Charlie said he’ll probably take it in tomorrow.
Charlie left for work before three o’clock.
Alex and I made a picture with the new supplies. I cut the tissue paper and he did all the gluing and placement of the paper. Then we went down to the basement and wrote on the chalk board. We brought the board upstairs as it’s too messy and dirty downstairs for Alex to be down there. Once Charlie has finished with the drywall it should be okay.
I started cooking dinner and we had dinner at five o’clock. It seems like around five o’clock to seven o’clock I feel like I could fall asleep. I watched TV while Alex played. He started to fall asleep at six o’clock but I woke him up to have his medicine. After that he was fine, he played until eight o’clock.
I told him to clean up his room and I would read him a story. He told me he couldn’t do it. I said if you get them off the shelves you can put them away. He said I only have two arms!
Alex fooled around for about fifteen minutes. I told him to get into bed since he wasn’t going to clean up his room. Alex fell asleep before eight o’clock. I watched TV until after nine o’clock and cleaned up the house, mostly putting away Alex’s toys. Then I wrote in the journal for about forty five minutes.
It sure is lonely at night, I wished there was someone to talk to, but there’s really no one to talk to about all my troubles. It makes me feel really depressed. Most of my friends are married and I hate to bother them when there husbands are home.
It’s ten o’clock, I’ll wait until midnight when I give Alex his medicine and then go to bed.
Tests
WBC 1.2
HGB 9.9
Platelets 39,000
ANC 696
Medicine
Bactrim 8:00 a.m. ----- 7:00 p.m.
Orbenin 12:00 a.m. 6:00 a.m. 12:00 p.m. 6:00 p.m.
Temperature 36.82C 7:00 p.m.
I wasn’t going to go back to bed but I was so tired I did. I woke up at 7:20 p.m. I didn’t have much time. I knew we would be late. I had a shower and got dressed.
I woke Alex up and gave him his medicine, Bactrim. The I got him dressed. Charlie was asleep in Alex’s bed, I asked Charlie if he was coming to the hospital. He said he would come later.
Alex and I left after eight o’clock. We got to the hospital at 8:45 a.m. We didn’t have to wait long. Mary came to tell us she was ready to do Alex’s blood test. Alex didn’t complain at all when he got his finger pricked. When we were waiting for Mary to put the band aid on she put Alex’s blood in a machine. She then keyed in Alex’s code and within a few minutes the machine showed what Alex’s blood was. It was amazing that it comes up so fast. Alex’s blood is up, so he doesn’t need a transfusion today. I sure was glad of that I’m so tired and it’s so much nicer to be at home.
I phoned Charlie, it took me three times before I could get him. I told him we would be home soon. We got home before ten o’clock. Charlie was giving Kelly a flea bath. Hopefully Kelly won’t get anymore fleas.
I went out at ten thirty, I felt I really needed a break. Everything is starting to get to me. Sometimes I feel like I could just scream. I feel totally frustrated. The hospital has such a lousy system. They change the appointment times or dates, don’t tell me what the medicine will do, it’s side effects, even the way they had us change doctors. I found that very irritating. Dr S said one day way back did Dr R tell you he wants me to look after Alex. We said no he didn’t say anything. Then Dr R comes over and then tells us. Surely they can plan things a little better. I like Dr S she’s quite easy to take to but it was very poorly done. Don’t get me wrong I’m extremely grateful for the care Alex is receiving.
Anyways I went to the bank and the mall. I bought a present for Mom from Alex. I bought Alex some colored paper, tissue paper and glue. I thought we could do a picture this afternoon.
I came home before one o’clock. As I came in the door, Alex told me a guy had come and delivered some wood for the bathroom.
I had my lunch, Alex and Charlie had already eaten. Charlie and Alex went for a drive. My car has been smelling, it smells like burnt rubber to me.
I phoned Mom to let her know Alex didn’t need a transfusion. Charlie and Alex came back when I was still on the phone. Charlie said he was going to take my car for an oil change. He came back after two o’clock. They told him something else was wrong with the car. Charlie said he’ll probably take it in tomorrow.
Charlie left for work before three o’clock.
Alex and I made a picture with the new supplies. I cut the tissue paper and he did all the gluing and placement of the paper. Then we went down to the basement and wrote on the chalk board. We brought the board upstairs as it’s too messy and dirty downstairs for Alex to be down there. Once Charlie has finished with the drywall it should be okay.
I started cooking dinner and we had dinner at five o’clock. It seems like around five o’clock to seven o’clock I feel like I could fall asleep. I watched TV while Alex played. He started to fall asleep at six o’clock but I woke him up to have his medicine. After that he was fine, he played until eight o’clock.
I told him to clean up his room and I would read him a story. He told me he couldn’t do it. I said if you get them off the shelves you can put them away. He said I only have two arms!
Alex fooled around for about fifteen minutes. I told him to get into bed since he wasn’t going to clean up his room. Alex fell asleep before eight o’clock. I watched TV until after nine o’clock and cleaned up the house, mostly putting away Alex’s toys. Then I wrote in the journal for about forty five minutes.
It sure is lonely at night, I wished there was someone to talk to, but there’s really no one to talk to about all my troubles. It makes me feel really depressed. Most of my friends are married and I hate to bother them when there husbands are home.
It’s ten o’clock, I’ll wait until midnight when I give Alex his medicine and then go to bed.
Tests
WBC 1.2
HGB 9.9
Platelets 39,000
ANC 696
Medicine
Bactrim 8:00 a.m. ----- 7:00 p.m.
Orbenin 12:00 a.m. 6:00 a.m. 12:00 p.m. 6:00 p.m.
Temperature 36.82C 7:00 p.m.
Diagnosis: Leukemia; July 2, 1987
The alarm went off at 5:45 a.m. I got out of bed and got Alex his medicine. Alex slept in our bed last night. Charlie held Alex while I gave him his medicine. I brought Alex a drink to wash it down. We all went back to sleep.
I woke up at ten o’clock, I was about to have a shower but Alex woke up. I made Alex breakfast, he wanted cold cereal. I made myself French toast and then Alex wanted some.
Alex and I didn’t do much, we played a few games and watched TV. I felt really tired and I had cramps.
Charlie went and had his hair permed. He phoned and I told him I found a flea on my foot. I asked him to buy Kelly a flea collar and soap. After Charlie came home he went to the bank. I thought we could pay the taxes at the bank, since it said that on the back of the form. Charlie was mad when he came back. He got ready for work and left.
I made Alex dinner, I thought if he had dinner early he wouldn’t have diarrhea when he had his medicine. He had diarrehea after his noon medicine. Just after he had his dinner at four o’clock Alex had diarrhea.
Alex played for awhile and he asked me to play with him. We played with the puzzles.
I got Alex ready for bed after seven o’clock. He was asleep before eight o’clock.
I wrote in the journal most of the night. I hadn’t written in the journal for three days. I cleaned up the house and put away the towels. It’s 11:30 p.m., I have to wait until midnight to give Alex his medicine.
We have to be at the hospital at 8:30 a.m. tomorrow. I’ll have to be up at six o’clock tomorrow to give Alex his medicine and there’s no point I guess to go back to bed.
No tests
Medicine
Bactrim 10:30 a.m. ----- 7:15 p.m.
Orbenin 12:00 a.m. 6:00 a.m. 12:00 p.m. 6:00 p.m.
Temperature 36.49C 12:00 a.m. 36.98C 10:30 a.m. 36.97C 1:00 p.m. 36.45C 7:15 p.m.
I woke up at ten o’clock, I was about to have a shower but Alex woke up. I made Alex breakfast, he wanted cold cereal. I made myself French toast and then Alex wanted some.
Alex and I didn’t do much, we played a few games and watched TV. I felt really tired and I had cramps.
Charlie went and had his hair permed. He phoned and I told him I found a flea on my foot. I asked him to buy Kelly a flea collar and soap. After Charlie came home he went to the bank. I thought we could pay the taxes at the bank, since it said that on the back of the form. Charlie was mad when he came back. He got ready for work and left.
I made Alex dinner, I thought if he had dinner early he wouldn’t have diarrhea when he had his medicine. He had diarrehea after his noon medicine. Just after he had his dinner at four o’clock Alex had diarrhea.
Alex played for awhile and he asked me to play with him. We played with the puzzles.
I got Alex ready for bed after seven o’clock. He was asleep before eight o’clock.
I wrote in the journal most of the night. I hadn’t written in the journal for three days. I cleaned up the house and put away the towels. It’s 11:30 p.m., I have to wait until midnight to give Alex his medicine.
We have to be at the hospital at 8:30 a.m. tomorrow. I’ll have to be up at six o’clock tomorrow to give Alex his medicine and there’s no point I guess to go back to bed.
No tests
Medicine
Bactrim 10:30 a.m. ----- 7:15 p.m.
Orbenin 12:00 a.m. 6:00 a.m. 12:00 p.m. 6:00 p.m.
Temperature 36.49C 12:00 a.m. 36.98C 10:30 a.m. 36.97C 1:00 p.m. 36.45C 7:15 p.m.
Saturday, July 2, 2011
Diagnosis Leukemia; July 1, 1987
Happy Birthday Canada! I had set the alarm for 5:45 a.m., I got up at six o’clock. I woke Alex up but there was no way I could give him the medicine by myself. Alex was fighting too much, he said I’ve had enough medicine, I don’t need anymore. Charlie helped me and then we went back to sleep. Alex wanted me to play with him but I told him to come into bed with us.
I slept until nine o’clock, I let Alex sleep as long as he wanted to.
I had breakfast and Alex woke up at ten thirty. Charlie had gone out and bought a medicine applicator. At the pharmacy they gave us a teaspoon but it’s too difficult to give Alex his medicine.
I gave Alex his medicine, just after he had the Orbenin he had diarrhea.
We left for Mom and Dad’s at two o’clock. Mom told Alex we could have a birthday party since it was Canada’s Birthday. Alex was really excited about that. He wanted to bring his party hats and horns. Charlie thought it was silly but Alex and I didn’t, we brought them anyways.
We got there around three o’clock. We had dinner at five o’clock, Alex had diarrhea just after he ate.
At 10:15 p.m. there was to be fireworks, we waited for them. Alex had gone to sleep around eight o’clock. The fireworks didn’t start until 10:45 p.m. Alex woke up at 10:50 p.m. so he was lucky, he was able to see the fireworks. He was really cute he said, look at that one its green or wow look at that one. He said you know when we heard the fireworks at Expo outside there was a loud bang. I said yes, like a boom.
We left when the fireworks were over. We got home before midnight, Alex was wide awake when we got home. He wanted a snack, I gave him his medicine and then I got him ready for bed.
I went to bed at one o’clock.
No tests
Medicine
Bactrim 10:40 a.m. ----- 6:00 p.m.
Orbenin 12:00 a.m. 6:00 a.m. 12:00 p.m. 6:00 p.m.
Temperature 34.52C 12:00 a.m. 36.25C 10:45 a.m. 36.28C 12:30 p.m. 36.61C 6:00 p.m.
I slept until nine o’clock, I let Alex sleep as long as he wanted to.
I had breakfast and Alex woke up at ten thirty. Charlie had gone out and bought a medicine applicator. At the pharmacy they gave us a teaspoon but it’s too difficult to give Alex his medicine.
I gave Alex his medicine, just after he had the Orbenin he had diarrhea.
We left for Mom and Dad’s at two o’clock. Mom told Alex we could have a birthday party since it was Canada’s Birthday. Alex was really excited about that. He wanted to bring his party hats and horns. Charlie thought it was silly but Alex and I didn’t, we brought them anyways.
We got there around three o’clock. We had dinner at five o’clock, Alex had diarrhea just after he ate.
At 10:15 p.m. there was to be fireworks, we waited for them. Alex had gone to sleep around eight o’clock. The fireworks didn’t start until 10:45 p.m. Alex woke up at 10:50 p.m. so he was lucky, he was able to see the fireworks. He was really cute he said, look at that one its green or wow look at that one. He said you know when we heard the fireworks at Expo outside there was a loud bang. I said yes, like a boom.
We left when the fireworks were over. We got home before midnight, Alex was wide awake when we got home. He wanted a snack, I gave him his medicine and then I got him ready for bed.
I went to bed at one o’clock.
No tests
Medicine
Bactrim 10:40 a.m. ----- 6:00 p.m.
Orbenin 12:00 a.m. 6:00 a.m. 12:00 p.m. 6:00 p.m.
Temperature 34.52C 12:00 a.m. 36.25C 10:45 a.m. 36.28C 12:30 p.m. 36.61C 6:00 p.m.
Friday, July 1, 2011
Diagnosis: Leukemia; June 30, 1987
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.
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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