DAY PLUS 53 - SEPTEMBER 8, 2008

Today we are going home. This morning we walked over to Cheo...and we talked to the doctor. She doesn't think we should go home.....not till we reach 100 days after transplant. It didn't matter what I said...she feels very strongly that we should stay close to the hospital. She told us a story of another child who lived 2 hours from the hospital....and got an infection after her bone marrow transplant.....and died. She lived too far from the hospital.....so the doctor couldn't and wouldn't give her permission for us to leave. The doctor does agree that hospitals are crawling with germs...it's not safe there for my grandson.......so she wants us to stay at Ronald Mcdonald House. I understand the doctor's fears. We live 1 1/2 hrs away from the hospital.....so yes....she has a real concern....but the other options are not acceptable. Her words scared me.......but what I read in the papers scared me a lot more. If the doctor's intentions were to scare me.......it worked. I'm deathly afraid of what could happen.....and every day I walk on eggshells......I would put Martha Stewart to shame.....the way I clean and scour every day...and make everyone wash their hands for 3 minutes a gazillion times a day....but I'm doing what I feel is best for my grandson.

I told the doctor I have kept my grandson safe from all harm since he was 2 years old......and I don't intend to stop now. His safety takes precedence over everything. I have no control over visitors at Ronald Mcdonald House......which they have a lot of......groups of people touring the house.....cleaners....teams of volunteers who cook for families.....and right now the house is under renovation...so there is drywall and insulation issues as well. Unless I had a self-contained apartment with cooking facilities, tv and cable....I would be endangering him there....and that's not possible. The hospital has no funds for this and neither do I.

Finally..... the doctor let us go home.....after I signed a waiver.

I'm going by my gut......I feel that I could keep my grandson safer at home....there are no visitors to my house.....my grandson can go from the livingroom to the dining room and to the kitchen....he can sit on the deck and enjoy the view, he can ride his bike every day......he can enjoy his movies from the privacy of his bedroom......I can control the cleanliness........but I can't do that at Ronald Mcdonald House. And of course...there is a shortage of beds at the hospital....so that's not an option.

This past summer......3 teenagers died at the General Hospital here in Ottawa......after their bone marrow transplant. One of 13, 15 & 16. I knew the girl of 16.....and my heart breaks for the mother and the pain she is going through. These 3 kids caught a virus at the hospital after their transplant.......and their immune system wasn't able to fight it. The 3 teenagers that died were all in their early teen's.....and they died in July and August of this year....while we were in
Toronto at Sick Kids. We chose not to have the bone marrow transplant done in Ottawa......and I'm really glad we did.

I'm hoping that I can keep my grandson safer. I can't control the environment at the hospital and neither at Ronald Mcdonald house.....but I can control the cleanliness of my home.......and make sure no visitors come to our house till they decide he is safe enough to go to school. For the next 6 months he will be tutored at home.

I also believe that my grandson's mental and emotional health are just as important as his physical health......and if he is happy at home.......he will heal much faster from his ordeal. Let's hope that I'm right.

DAY PLUS 49 - SEPTEMBER 4, 2008

We are now staying at rmh (Ronald Mcdonald House) in Ottawa. We have a very nice room here, very clean & air-conditioned.
Mr. T continues to do very well. His counts are coming up all the time. It is very difficult keeping him in his room. He contstantly wants to go to the kitchen to eat or to get snacks. I have asked the doctors to rethink their decision....as I can't control the level of cleanliness in the house as there are too many families staying here......while I CAN control the amount of visitors to my house. They will let me know next Monday if we can leave to go home and come back once a week for his blood work. It may be twice a week when there are other clinics to attend. It will be really great to finally get home.

DAY PLUS 46 - SEPTEMBER 1, 2008

Today is a much better day. Mr. T is not upset any longer. He realizes that the Oncology Team is very concerned for him and want to keep him safe and he knows the time will go by quickly.

After the 2nd xray.....they tell me he has a spot on his right lung which they think is a collapsed lung from being 5 months in bed. They don't know if the cough he has is caused by the collapsed lung....or did it cause the cough? What came first...the chicken or the egg sort of thing. To remedy that...he is using a contraption called an incentive insperameter that he blows into every couple of hours to strengthen that lung. In 2 days he will get another xray to see if there is any improvement.

His counts continue to improve daily:

WBC - 7.31 normal range (4.5-13.0)

Hgb - 103 (120-160)

Platelets - 170 (150-450)

Neutropolys - 4.57 (1.8-8.0)

Mr. T's appetite is back to normal. He is eating 3 meals a day and drinking plenty. He can only eat what is on the hospital menu....no ordering out...no restaurant food as he is on a low-bacteria diet. Although he's not too happy about his choices...he is following orders.

This being the long holiday weekend...we won't know what the overall plan is till Tuesday or Wednesday. They will try to provide home-care for Mr. T....but it may not be possible as I live in a village. We'll see.