DAY PLUS 91 - OCTOBER 16, 2008

I apologize for not blogging. The days have been going by very quickly since we've been home. Mr. T and I spend 2 days a week at Cheo....getting blood work done, changing his dressing and getting a check-up. Then we have a tutor coming to the house twice a week. The rest of the time is spent in doling out medication 4 times a day, and cleaning, cleaning, cleaning.

(I also had to wait a month to buy a new tower (hard drive) My computer was fried).

I live in a very old house in the country. We have many windows that should be replaced and we heat with wood and oil....which makes for a very dusty house. Every day there is a new coat of dust over everything....and I start cleaning all over again.

We had the rugs removed before we got got home...which helps a lot...but still there is so much dust that accumulates while we sleep.

So far....we've been very fortunate. Mr. T's blood counts keep improving week by week. His energy and appetite improves daily. As of next week....we will no longer have to go for check-ups twice a week. We will only go for check-ups once a week on a Monday. That's great news!

I haven't blogged for awhile......I have been so busy cleaning, giving Mr. T his medications, preparing a low-bacteria diet...and doing the thousand other chores that is needed to make this home run efficiently.

I've also been walking & sleeping on eggshells.....always wondering if I made the right decision in bringing Mr. T home......questioning every cough, sniffle and ache. So far....so good!

When I hear from other mothers at Cheo......that the hospital is crawling with disease...they have had to put kids with infectious disease on the oncology unit for lack of beds......... parents on the oncology floor have had to isolate their own kids in fear that their kids would get sicker....well then...I feel that just maybe I did make the right decision.

We have been home now for over a month....and still I feel overwhelmed. I still haven't seen my doctor or dentist....I still haven't slept for 8 hours straight, I haven't read a book or seen a movie........and I probably won't for awhile yet. I'm not complaining......we have been blessed.....at least we're home and things are going well. There are some mothers right now with their children at Sick Kids waiting to be transferred back to Cheo...if everything goes well......and so I pray for them each and every night...for a safe journey home.

Again......I apologize for not blogging sooner.....

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.

OH NO......YOU'VE GOT TO BE KIDDING!

I don't believe this!!!! On Friday, when Dr. R came to visit us...she mentionned vaguely about '100 days after transplant' we need to be in-hospital. I replied..."WHAT DID YOU SAY?? Don't even go there!"....and with that she said....'Well, tomorrow Dr. B will be on and she's in charge of transplants so she is the one to ask.'

We came here to Cheo because we were told that it was wise to make sure that Mr. T got a clean bill of health....and what was another week?? maybe only 2 or 3 days...and we were fine with that. We were told if Mr. T did not need platelets or blood products...and his counts were good....we could go HOME and come to clinic twice a week.

We had plans!! Mr. T wrote on MSN...(I'll be home in 3 days). We were looking forward to going home....and everyone was looking forward to us coming home! Hubby and Uncle have been very busy in the past 3 weeks. They removed all the carpeting from my house and put in hardwood floors...better to control the dust & germs. They painted all the upstairs and freshened up the house. They worked non-stop in preparation of our coming home.

My granddaughter is so happy that finally we'll be home. She tells me everyday how much she misses us. It's been a very difficult 5 months for her.

But the flippin' plan has changed.....

When Dr. B walked in...I said.."I'm glad to see you....as YOU are going to tell us what DAY we'll be going home this week."

Then the fun began.......first she told us...that NO...she wasn't in charge...It was Dr. R that was in charge....and we both looked at her and said......"DON'T EVEN GO THERE - Dr. R said YOU are in charge. It's very confusing if the doctors don't know who's in charge.

Yes..I was upset...very upset and I let them know that I didn't appreciate being told at this late stage of the game that we would have to stay an additional 2 months. They believe that Mr. T is high-risk for infections....and seeing that we live 1- 1/2 hrs away......if he should get a fever...it would really soar before we could get here and Mr. T would end up in ICU or worse.

I understand their concern.......I understand there is a chance of this happening....I understand that Mr. T's health takes priority........BUT WHY THE HELL DIDN'T ANYBODY TELL US BEFORE THIS???

Why did they pick NOW to tell us? If they would have told me this last month...I would have prepared mentally & emotionally for it.........and so would Mr. T.

Mr. T was so excited that when his Uncle drove us here from Toronto...he told his uncle to bring home all his play systems and games...as we would be following shortly. He sent everything home in anticipation of the big day. Even when we got here...the staff asked how long we would be here...and we replied...oh, just a few days for a check-up and we're on our way. Nobody told us different. We were led to believe that if Mr. T was not attached to any pole....we were on our way. Everyone encouraged our thinking and beliefs. Even the interlink nurse said she would make sure to get in touch with the tutor for this week.

Well....to say I LOST IT........is putting it mildly! I let the staff know that there was a 'complete lack of communication' here.......nobody was on the same page.......hell...they weren't even reading the same book. There is no excuse for this! On top of that....'to be passing the buck' and not taking ownership...blaming each other....not knowing who was in charge.....is too much!

Then one of the Dr's said..."I don't like it when you raise your voice at me....so keep it down!"

Whoa......I told him....'Too damn bad what you don't like....we don't like being told one thing...and now that's changed. I am damn upset and I won't apologize for it. When I get angry or upset...I get louder...and that's fine too. I'm allowed to be angry...I'm allowed to be upset....and if it bothers him......too damn bad! I'm not in a popularity contest here!

We were led to believe if everything went well......and it did.....and if Mr. T did not need platelets or blood products...that we'd go home and come twice a week for check-ups. Nobody told us different....up till this week....when it finally occurred to them...that I live 1- 1/2 hrs away.

At this late stage of the game....we should have known what was expected of us....everybody knew our plans and nobody said a thing.....not till we asked what day we were going home!

As it stands now....we plan to be in-hospital for another week. Then we will stay at Ronald Mcdonald house for 2 months and just come here twice a week for check-ups. Mr. T is not happy about this. He was told that he would have to stay in the room at RMH...no socializing...he would have to eat in the room as well. We would get his Uncle to bring up his game systems and games and television set. He'd rather stay in the hospital...and have people come in and out of the room...and go to the playroom...but thats not feasible. They need the bed here. For Mr. T...this would be like going from a jail cell to solitary....and I'm very upset for him. He had plans to go fishing and getting his hunting licence. All this will have to wait.

Friday....Mr. T had an x-ray done...they noticed a small spot on his right lung....so today we went for another x-ray. We don't know the results yet.

T's counts continue upward....his appetite is back...he's eating and drinking well...and for this I'm truly grateful.

DAY PLUS 43 - AUGUST 29, 2008

We are now back at Cheo Hospital. What a nice warm reception we got. We arrived Wednesday at 7 p.m., and they already had a room prepared with his name on the door.

Mr. T was very pleased to be back here. By 9 p.m....both of us were sound asleep.

The next morning the doctors were in to see us., and so was the dietician and the pharmacist. The plan is to get Mr. T eating on a regular basis, adjust his diabetic medication as he is no longer on insulin and get an x-ray of his chest, so that we can go home next week with a clean bill of health.

I am so glad to be back here. The Oncology team is great. I have confidence in them. They all work closely together and make sure you understand everything. They answer all your questions, sit with you and explain what each medication is for...and what the plan is...so that you will feel confident going home. I can't say enough about Cheo. This is a wonderful, caring hospital for kids.

At Sick Kids, when you asked for the daily counts, they gave you a small slip of paper 3" x 3", with a few counts hand-written down. It didn't show 'what' the counts should be, or what was the norm. I found this very confusing...and the nurses didn't know either. These were the numbers they copied from the computer.

Here at Cheo when you ask for the blood counts, they give you a computerized print-out, a full sheet of paper with all the numbers and next to it in brackets what the normal numbers should be.

Today's counts:

WBC 8.71 (4.5-13.0)

Hgb 107 (120-160)

Platelets 132 (150-450)

Neutro-polys 5.75 (1.8-8.0)

These numbers are amazing! It's like holding the winning lottery numbers! Mr. T has not received platelets or blood products in the past 3 weeks. Although I know our journey is far from over...I can't help but be excited. Mr. T will have to be monitored closely, and follow a low-bacteria diet as well as a diabetic diet, and for 6 months stay close to home as he is high-risk for infection......but after all he's been through, this will be a piece of cake!

Hopefully I'll be blogging from home this time next week!

As for Mr. T......he is very cranky! He still is bothered with his right eye. They gave him Polysporin eye drops for the irritation caused by the shingles. His right eye is extremely sensitive to light (photo-sensitive)....so its difficult for him to watch television or play games. This also causes severe headaches...which they treat with Gabapentin & hydro-morphine. We have been away from home for 152 days....so he has every right to be cranky. The eye irritation shoud be gone in a week and so will we! We are on our way..........

DAY PLUS 40 - AUGUST 26, 2008

Although Mr. T still has a terrible cough.....they are letting us go back to Cheo tomorrow. We didn't get any results back from the lab yet....but doctors here know that the medical staff at Cheo can take care of any problems that Mr. T has.

He is still very sensitive to any light....and uses special eyedrops but we can still travel.

We will be a lot closer to home. My son is coming to get us tomorrow and will drive us to Cheo in Ottawa. I don't imagine we will stay there for too long....maybe 3 or 4 days. Once they give Mr. T a clean bill of health...they will send us home. As of tomorrow....we will have been gone from home for 150 days. That's a long time!

Although I did enjoy Toronto...its time to get back home!

I will continue to blog once I get there......and let you know how Mr. T is doing. I've got a lot of packing to do!