JULY 4, 2008 - LAST DAY AT CHEO.

It's our last day today! We have been here at Cheo for 96 days. Mr. T is sad as he doesn't want to leave....he likes it here & wishes he could have his bone marrow transplant here, but they don't do transplants. There is a good possibility that we will come back here after his transplant.

The nurses gave him blood to make sure his levels are high enough to travel.

We are going over to Ronald Mcdonald House later today.

It's always sad saying good-bye. Mr. T has known the nurses here since he was 10 yrs old...to many children here...Cheo is like a 2nd home. When you stay at a hospital for any extended time...you get to know the nurses really well. They have been great! There is a wonderful rapport between the kids and the nurses & doctors that you don't see anywhere else!

JULY 3, 2008

Mr. T was starving today. He had to fast from midnight till 1 p.m today till they brought him down to surgery. He was in surgery till 4 p.m....and they brought him to his room at 4:45. He had a bone marrow aspiration done and then had some cavities filled and one extraction. The nurses told him soft foods only for 2 days but at 6 he had 2 double cheeseburgers and fries from Mcdonald's and he ate everything. You just can't keep a hungry boy down! I'll know the results of his bone marrow test tomorrow. As far as I know...if the results are good.....we can go to Ronald Mcdonald House for a day....and leave from there and go to Toronto on Saturday.

They tell me his counts are normal...or they are to be expected:

Hemoglobin is 74*

Platelets are 93*

Neutro-polys are 13*

Did u notice his neutro-polys were 0.55 yesterday and today they are only 0.13*. What's with that? I'll have to speak to his Dr. tomorrow.

Today is our 95th day here......and we are anxious to move on.

JULY 2, 2008

Mr. T just wants to sleep all day! He wasn't a very Happy Camper when he found out they had 3 tests arranged for him. In the morning we went down for an ultrasound of his abdomen. Later in the afternoon he had another echo-cardiogram done as well as an ECG. All these tests have to be current before we can leave this week.

I can understand how he feels sometimes. He just wants all this to end. I keep telling him we're half-way there...you can't give up now! He's extremely sore in the chest area, and does not like being prodded and poked constantly. There are some mornings I wish I could sleep in as well!

Wow! His neutro-polys are flying!

Today's counts are:

Hemoglobin is 77*

Platelets are 102*

Neutro-polys are 0.55*

CANADA DAY....JULY 1, 2008

Today is Canada Day...and the weather is beautiful. Lately it's been raining every single day in Ottawa. I swear the weather is fixed....and we know who's fixing it. Mr. T is not in a party mood. He is suffering more today than yesterday. You can't go near him.... if a nurse touches him...he's screaming in pain and hollering for morphine.

And we have a VERY GOOD REASON TO CELEBRATE! His neutro-polys went from 0.15 to 0.69 OVERNIGHT!

Now that's a very good reason to sing and dance....but Mr. T couldn't care less.

He really did kick up a fuss when they insisted that he had to go for sinus x-rays. He didn't even want to go by wheelchair or leave his bed at all. I really don't blame him.....but there is so much to do and so little time left.

His counts for today are:

Hemoglobin is 79*

Platelets are 67*

Neutro-polys are 0.69

At least I have a reason to celebrate CANADA DAY!

MONDAY. JUNE 30, 2008

Today.....although his neutro-polys were only 0.15....they went ahead and took out his port and put in a broviac. Guess they didn't want to wait till it was 0.2 We don't have much time left before we go to Toronto...and they want to make sure he heals well. Mr. T went into surgery at 10 a.m. and didn't come out till after 2 p.m. I was wondering what was taking him so long....when Dr. Ruben had told me it should only take an hour and a half.

Apparently when his Port came out...he tried unsuccessfully to put in the Broviac on the same side...but he couldn't. Some blood vessels had collapsed so he had to put the Broviac into the right side of his chest.

Mr. T was extremely sore and on morphine all day. His chest was all bandaged up on both sides...and he refused to eat or drink.

He slept all day on his back.

Today his counts were:

Hemoglobin is 85*

Platelets are 53*

Neutro-polys are 0.15*

It's going to be a rough night!

SUNDAY, JUNE 29, 2008

Neutro-polys are doubling. Today they are 0.10. That is great! Hopefully they will be high enough this week to get his broviac in before we leave for Toronto.

Today his counts are:
Hemoglobin is 85*
Platelets are 40*
Neutro-polys are 0.10
Today we are here 91 days......and Mr. T is not a Happy Camper at all! He was really hoping to get some time home before our admitting date. Well...that's not going to happen. We will leave straight from here on Saturday the 5th...in order to be admitted at Toronto Sick Kids on July 6th.
No.....Mr. T is not taking it well. After 3 months here mainly in isolation....he knows he will have to go through another 3 months there in isolation, barring all complications. And the Oncology team 'insists' that he knows what he will be going through..and it won't be fun. He knows he will have to get much sicker in order to get better. He is not looking forward to the trip or the stay at Sick Kids. I don't blame him. He has the right to his pain and anger & frustrations. No child should go through this....but unfortunately....many of them do. After this bone marrow ordeal....I hope & pray that Mr. T has many great years ahead of him.

FRIDAY, JUNE 27, 2008

Today...his neutro-polys are 0.05

This is going really slow. Not much to do but wait and hope.

Hemoglobin is 92*

Platelets are 30

Neutro Polys are 0.05*

Mr. T's appetite is still good...and his glucose is under control.