Thursday, April 21, 2016

Diagnosis Leukemia; April 21, 1987

My husband and I took Alex to Dr. W. today. Alex had two colds and a third cold was starting. He had become very clumsy and had a lot of bruises on his body. Alex's skin coloring had become very pale. He also was very tired and needed to be held all the time.

After Dr. W checked Alex he said he thought Alex's blood count would be very low maybe around 6 and it should be 12. The doctor could feel his liver and his spleen.

Dr W said Alex was very sick and within the next twenty four hours we were to take him to the hospital. Dr O would check him and do some blood tests.

We took Alex to the hospital not long after we saw Dr W. Once we were upstairs in the Children's ward, I had a hard time controlling my emotions. My husband, Charlie* said "What's wrong with you, Alex is just having a few tests." I didn't like to tell him but I feared the news would be bad. How could I say I fear he has Cancer? How could I his mother think that?

Between 6 and 6:30 pm, Dr O came to tell us the results of the blood test. Charlie had gone to the cafeteria. Dr. O said he would come back. Dr O came back about 30 minutes later. He told us the blood test showed that Alex has Leukemia. Charlie said "I don't think I heard you correctly." The doctor said "Your son has Leukemia." I felt like I was having an out of body experience. I went numb and felt like I had floated to the ceiling. I was now looking down at myself, Charlie and the doctor.

At nine o'clock the nurses put an I.V. into Alex's arm. It took four tries before the nurses were able to get the needle in okay.

It was a terrible night, Alex woke up about every hour screaming. He was having nightmares about being poked by the nurses.

Dr. O told us Alex would be transferred to Children's Hospital tomorrow and they would do some more tests. A bone marrow test would confirm that Alex has Leukemia and would also tell the strain of Leukemia.

Dr. O said Leukemia has a 90% chance of being cured.

* the name has been changed

Diagnosis Leukemia; 1987

My son Alex was diagnosed with Leukemia when he was 3 years old. He was diagnosed in 1987. I kept a journal during that time, I would like to share those entries with you. If I can help one person going through the heartache of having a child diagnosed with Leukemia, then it is worth it.

My journal entries will be titled Diagnosis: Leukemia and the date of the journal entry.

Wednesday, July 16, 2014

Diagnosis; Leukemia; July 14, 2014

It has now been 24 years since Alex stopped Chemotherapy. A lot has changed since then. Alex is now 30 years old and is working full time. He lives with his girlfriend.

Charlie and I separated in 2002 and were divorced in 2005. Samantha and I moved in with my father in 2002. My mother passed away in 2000 from a stroke. We lived with my father until 2008, he passed away in June of that year.

I started working full time in 2001. I had one relationship that ended badly before finding true love in 2008. I married again in 2009 and live with my husband in Saskatchewan. I am working part time and am the proud owner of five pugs. I have a page about the dogs on Facebook.

Samantha is working in retail part time and shares a town house with a couple.

Alex doesn’t remember very much about his treatment or any of the many procedures he had to endure. I think it is very fortunate. Most of the treatment and procedures were from the age of 3 to the age of 6. So I guess that is why. It is my understanding that most people don’t remember much before the age of 5.

Alex is suppose to go to the doctor yearly for check ups, I leave that up to him. The hospital contacted us when Alex was about 9 or 10. It was the research department at UBC Hospital. They wanted to know if Alex would participate in an exercise program. They wanted children who had been diagnosed with cancer to participate in their program. They had to use an exercise bike, they were monitored for breathing, blood pressure and pulse. I asked Alex and he wanted to participate. The women that were in charge were very impressed with Alex’s physical endurance. They said he was in very good physical shape and was in a minority. The majority of the children that were in the program, were not in very good physical shape. They thanked me for letting Alex become so active. I said well it’s pretty hard to keep Alex away from the things he loves to do. He loves playing street hockey and riding his bike, he’s an outdoors kind of person. They said most parents don’t let their children do any physical activities. They are afraid to let them do anything for fear they hurt themselves.

Life sure didn’t turn out like I thought it would. I never thought we would have to go through such a difficult time. As I was entering my blog daily, it would take me back. I could still visualize each time Alex went to the hospital. It was very painful time and the pain would come back. I found it quite depressing entering the journal. My hope has always been to help other people who might be going through a similar situation. In closing, I would like to thank everyone for taking the time to read my journal, liking different posts and the many comments. Blessings to you all!

Diagnosis: Leukemia; July 13, 1990

Well we’ve waited since Monday to hear the results. I was told to phone in the afternoon. So I figure to phone at three o’clock.

I phoned at three the receptionist said the doctor wasn’t there but would phone me back.

I phoned again at four o’clock. The receptionist said didn’t the doctor phone you? I said no. She looked for the doctor but he still wasn’t there. She said I’ll get the doctor to phone you back.

I phoned for the third time at four forty five and finally talked to the doctor. I had gotten a different receptionist and she said probably the test results haven’t come back yet. I said Dr. S said they would be in today and I’m not waiting over the weekend.

Finally I talked to a doctor. It wasn’t Dr. S but I couldn’t remember her name. She read Alex’s file and told me a lot of medical jargon. I asked her what it meant. She said Alex’s LP wasn’t normal but was normal for being on Chemo and no cancer cells appeared in the LP or BM test. Alex would stop all his treatment but would still take Bactrim. She said Alex could resume most activities which included swimming. She also said Alex would have to be checked regularly and thoroughly checked as well.

Boy was that a relief this week has been extremely difficult waiting to hear the news. Especially when Dr. S said if he phoned on Wednesday it would mean Alex would have to under go more treatment and the cancer cells were back. So when Wednesday came I couldn’t wait to get out of the house. Then on Friday I thought maybe Dr. S forgot to phone and it might be bad news. It’s incredible what runs through your mind.

I told Alex the doctor said the tests were okay and he could go back to swimming. Alex said ALRIGHT! He sure has missed going swimming the last three years.

No Tests

No Medication

Thursday, July 10, 2014

Diagnosis: Leukemia; July 8-9, 1990

July 8, 1990

Samantha ate at nine, one, and six o’clock.

I haven’t told Alex what is going to happen tomorrow at the hospital. It’s too bad he’ll have to have a bone marrow and a spinal tap.

I find it extremely hard not know what’s going to happen and that we won’t know right away.

Hopefully Alex won’t be too difficult to handle but I know he won’t want it done.

No Tests

Medication

Mercaptopurine ------ ----- 9:00 p.m.

July 9, 1990

I woke up at seven o’clock to the alarm. I had a shower, got dressed and made our breakfast.

Samantha was just waking up so I fed her before we left for the hospital. Charlie is staying home with Samantha. Charlie thought if I too k Alex I would be able to handle him better.

We saw Dr. S before Alex had his blood test. He first checked Alex all over. The doctor said if the BM and LP were okay Alex would still have to have blood tests. For the first three months they would check him over very thoroughly. Then he could have his blood tests at the family doctors for two months and come back to the hospital on the third month. Alex would do that for a year then he would come every six months for two years. So lets get this straight, start month one, two and three go to the hospital. Four and five family doctor. Six hospital. Seven and eight family doctor, nine hospital. Ten and eleven family doctor. Twelve hospital. On the following two years he would go to the hospital every six months but would have to see the family doctor every month for blood tests.

Before Alex had his blood test he said he wanted to get something to eat. Unfortunately Mary called him in and then Dr. S said they were ready for him. Alex threw himself on the floor and said he had to have something to eat. I told Dr. S we had a problem that Alex was too hungry! He said we could get something for Alex and to tell him when we’re ready. Mary still had quite a time with Alex and he wouldn’t listen to me at all.

Alex had his snack then it was time for his LP and BM. It didn’t start off too good. As soon as the doctor put his fingers on Alex’s back he started to scream and he didn’t stop. I was holding Alex during his LP, he was pushing so much I thought I was going to end up on the floor. I tried reasoning with Alex but he just wouldn’t listen. Somehow or other we got through it. After the LP Alex said he was finished and started to get up to leave the room. We told him he still had to have a BM but he said no he wasn’t having it.

During the BM Alex was so mad that he started to shake his whole body. As I’ve said before there just wasn’t any reasoning with him.

When it was finally over Dr. S said if he phoned in a couple of days it would mean Alex would have to come back for more treatment. If I didn’t hear anything to phone on Friday he should have the results by then.

Alex laid down on a bed for an hour then we were able to leave.

I left Alex while he was laying down to go to the pharmacy and buy some goodies for Alex at the store.

We got home around two o’clock. I’m exhausted from the whole ordeal. Now we have to wait for the results that sure will be difficult.

Tests

WBC 3.0
HGB 13.1
Platelets 379
ANC N/A

Tuesday, June 24, 2014

Diagnosis: Leukemia; June 22-30, 1990

June 22, 1990

Samantha ate at eight, eleven two and six o’clock.

Alex went to school today.

No Tests

Medication

Bactrim 10:30 a.m. ----- ------ 8:30 p.m.
Mercaptopurine ------- ------ 8:30 p.m.

June 23, 1990

Samantha ate at eight, eleven two and six o’clock.

It’s Charlie’s birthday today. He’s 41 today. I invited Mom and Dad over for dinner. I made an Angel Food birthday cake.

Mom phoned this morning and asked if we were doing anything this morning. I said no I don’t think so. She said meet us at Dream Carpets, we want to buy you carpeting for your house. I said are you sure? I was really shocked they would want to buy us carpeting. It’s an expensive thing to buy. So we meet them at the store and we finally decided on the carpeting. Charlie wasn’t too happy with the store and he kept on telling me he wasn’t getting any carpeting. I thought give me a break we don’t have to pay for it and he’s complaining already.

No Tests

Medication

Mercaptopurine ------- ------ 8:30 p.m.

June 24, 1990

Samantha ate at eight, eleven two and six o’clock.

In the afternoon we went out and then for dinner.

No Tests

Medication

Mercaptopurine ------- ------ 9:00 p.m.

June 25, 1990

Samantha ate at eight, eleven two and six o’clock.

There’s no school today, it’s Professional day. It sure is nice when Alex is off school.

No Tests

Medication

Bactrim 11:00 a.m. ----- ------ 9:00 p.m.
Mercaptopurine ------- ------ 9:00 p.m.
Methotrexiate ------ ----- 9:00 p.m.

June 26, 1990

Samantha ate at eight, eleven two and six o’clock.

Alex went to school today. This is the last week of school, I can hardly wait!

No Tests

Medication

Mercaptopurine ------- ------ 8:30 p.m.

June 27, 1990

Samantha ate at eight, eleven two and six o’clock.

We went to the doctors at eleven o’clock. Alex had been sick yesterday and I wanted Dr. C to check him. Alex threw up last night but he’s okay this morning. Dr. C said his stomach was making gurgling which meant Alex had the flu. I told Dr. C that Alex’s eye is itchy and red. Dr. C said Alex’s eye is infected.

In the afternoon we went to a picnic. It was for the kindergarten and their buddies (grade 5’s) the kids had a good time playing in the playground and the wading pool. We stayed until two thirty and came home.

Charlie got ready to go to work.

No Tests

Medication

Sod Sol ------ ----- 8:00 p.m.
Bactrim 9:00 a.m. ----- ------ 8:30 p.m.
Mercaptopurine ------- ------ 8:30 p.m.

June 28, 1990


Samantha ate at eight, eleven two and six o’clock.

This is the last day of school for the kindergarteners.

No Tests

Medication

Sod Sol 9:00 a.m. 3:00 p.m. 9:00 p.m.
Bactrim 10:00 a.m. ----- ------ 9:00 p.m.
Mercaptopurine ------- ------ 8:30 p.m.

June 29, 1990

Samantha ate at eight, twelve and six o’clock.

We saw Dr. C at ten thirty this morning. She said to keep using the eye drops for Alex’s eye infections. I told her it’s really difficult getting the drops in his eye. Alex says it really hurts when it goes in. Dr. C said I’m really surprised with all the tests Alex, you’ve had to have. I wouldn’t think it would bother you.

Dr C said Samantha is doing better she’s really starting to fill out. I asked Dr. C if Samantha could go to three feedings. She seems to be eating better now. She said that would be fine. She wants to see them both in a month.

No Tests

Medication

Sod Sol 8:30 a.m. 3:00 p.m. 9:00 p.m.
Bactrim 8:30 a.m. ----- ------ 9:00 p.m.
Mercaptopurine ------- ------ 8:30 p.m.

June 30, 1990

Samantha ate at eight, twelve and six o’clock.


No Tests

Medication

Sod Sol 10:00 a.m. ------- 8:30 p.m.
Mercaptopurine ------- ------ 8:30 p.m.

Monday, June 16, 2014

Diagnosis: Leukemia; July 1-7, 1990

July 1, 1990

It’s Canada’s birthday today. Mom and Dad invited us over for dinner.

Samantha ate at eight, twelve and six o’clock.

The salesman from Dream Carpets came to measure the house today. He told us he needed a cheque for all the amount not including the labour. Charlie told him he didn’t want to do that as he’s had problems in the past with companies going bankrupt and he didn’t get anything. The salesman was pretty annoyed and said you should have checked with the Better Business Bureau. He claimed his company was very reliable and he still needed a cheque before the carpeting could be laid.

When we told Mom and Dad we needed a cheque for the full amount Dad said no way! I explained to them that the salesman said they wouldn’t lay the carpeting without the money. They sure weren’t happy. Later I told Mom about the salesman saying Charlie should have phoned the Better Business Bureau. Mom said tomorrow I’m phoning them.

We went to Mom and Dad’s at four thirty. I fed Samantha after we had our dinner. We came home around nine o’clock.



No Tests

Medication

Sod Sol 11:00 a.m. ------ 9:00 p.m.
Mercaptopurine ------ ----- 9:00 p.m.

July 2, 1990

Samantha ate at nine, one and six o’clock.

Alex seems to be having fun playing with the other kids. I’m just glad I don’t have to go to the school to pick him up. I don’t mind going to the school but some of the mothers are such snobs it’s unbelievable. I couldn’t never understand people like that.

This morning Mom phones to tell us she cancelled the order with Dream Carpets. The Better Business Bureau said they’ve had six complaints so far this year and most of the people still didn’t get the job done right. Mom said she put a stop payment on the deposit cheque.

They asked us to meet them at another carpeting place. It’s call J & R Carpeting. What a difference in the two stores. Dream Carpets was such a dump, the ceiling was leaking and they had junk all over the place.

We picked out the carpeting and the salesman said he would be out to measure tomorrow.

No Tests

Medication

Bactrim 10:00 a.m. ------ 8:30 p.m.
Mercaptopurine ------ ----- 9:00 p.m.
Methotrexiate ------ ------ 8:30 p.m.

July 3, 1990

Samantha ate at eight, twelve and six o’clock.

The salesman came this morning to measure for the carpeting. He told us the baseboards should come off. Charlie doesn’t want to take them off.

Mom phoned to tell me the salesman phoned them. He said I don’t think your son-in-law understood that the baseboards have to come off. I said he told us it would look better not that they had to come off.

Charlie took them off but with a lot of grumbling.

Then the fun began we had to get everything out of the living room, dining room, Alex’s room and Samantha’s room. What a job it’s like moving all over again.

Anyways today finally came for them to lay the carpeting. Charlie had quite a few arguments with the layers. It didn’t help that they both smoked, luckily not in the house, they had their radio on and the one guy was singing away.

Alex, Samantha and I went to Mom and Dad’s for awhile. We all came back so Charlie could go to work.

The layers finally finished at six o’clock and Mom and Dad left shortly afterwards.

They had to glue the carpet to the stairs because of the ceramic tiles. The smell was something awful almost made me ill.

No Tests

Medication

Mercaptopurine ------. ----- 8:30 p.m.

July 4, 1990

Samantha ate at nine, one and six o’clock.

Now the fun begins on getting the house back in order. Yesterday Mom helped me vacuum the carpet bits up and there was a lot.

No tests

Medication

Bactrim 11:00 a.m. ------ 9:00 p.m.
Mercaptopurine ------ ----- 9:00 p.m.

July 5, 1990

Samantha ate at nine, cone, and six o’clock.

It sure is nice having carpeting throughout the whole house. Especially in Samantha’s room. The floor really creaked before the carpeting was laid. It was hardwood floors under the carpet. Alex would run down the hall and then slide the rest of the way into the living room. He also slipped many times on the stairs on the ceramic tile. I thought it was a strange place for ceramic tiles.

It’s going to take awhile to get everything put away.

No Tests

Medication

Mercaptopurine ------ ----- 8:30 p.m.

July 6, 1990

It’s Mom’s birthday today, we’re having them over for dinner tomorrow. Charlie is on afternoon shift this week.

I phoned Mom to wish her a HAPPY BIRTHDAY!

Alex, Samantha and I went to McDonald’s drive through and came home.

No Tests

Medication

Bactrim 10:00 a.m. ------- 9:00 p.m.
Mercaptopurine ------ ----- 9:00 p.m.

July 7, 1990

Samantha ate at nine, one and six o’clock.

I’ve been busy getting the house ready for Mom and Dad. Alex likes it when I make a cake and he puts sprinkles on the icing.

They came over around five and left at nine o’clock.

No Tests

Medication

Mercaptopurine ------ ----- 9:00 p.m.