YOUNG WARRIOR...

DAY PLUS 91 - OCTOBER 16, 2008

2008-10-16T21:22:00.005-04:00

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

2008-09-19T20:22:00.008-04:00

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

2008-09-04T13:09:00.002-04:00

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

2008-09-01T08:47:00.003-04:00

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!

2008-08-31T09:53:00.004-04:00

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

2008-08-29T08:51:00.004-04:00

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

2008-08-26T18:38:00.005-04:00

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!

DAY PLUS 39 - AUGUST 25, 2008

2008-08-25T16:46:00.006-04:00

A doctor finally came to see Mr. T yesterday at 4...........over 24 hrs after I asked for a doctor. He didn't seem too concerned because Mr. T had no fever or runny nose.
This morning when our primary doctor came back from vacation...I let him know my concerns. A cold can easily lead to pneumonia and ICU and much worse. This happened at Cheo when he got HAP (hospital acquired pneumonia).
Our doctor said I had every reason to be concerned and right away ordered a nasal swab test...and had him cough into a specimen jar and we are waiting on results from the lab. The doctor is also calling Cheo to find out if they have a bed for Mr. T. They don't want me to go straight home as I still live 1 1/2 hrs from the hospital....and Mr. T is still very high risk for infections. Better safe than sorry.
This afternoon they informed me...that Mr. T was one of the patients here who ate Maple Leaf products the very first week we came here...so he will also be carefully monitored for LISTERIA....which can lead to fevers, severe headaches and nausea.

Apparently many consumers got very sick and a number of them died from ingesting products made at the Maple Leaf plant here in North York, Toronto.

Patients contract listeriosis after consuming foods contaminated with listeria monocytogenes.
Public health officials have warned that food contaminated with listeria may not look or smell like it has spoiled.
Listeriosis can cause flu-like symptoms, such as a stiff neck, headache, nausea and fever.
Healthy individuals may remain symptom-free. However, pregnant women, the elderly and people with weakened immune systems are at greatest risk.

THE good news...is Mr. T's counts continue to rise. His WBC (white blood cells) are 8.9 from 7.9 and his Neutropolys are 5.89 from 2.78.
Today he had chicken noodle soup for breakfast, and the same for lunch and he's drinking a lot more. Because of his cold...he is not permitted to walk the halls, but at least he's watching television now and playing games. I should know by Wednesday if we are staying or going. Chances are we'll be leaving at the end of the week if there aren't anymore complications.

THAT'S IT...........

2008-08-24T10:06:00.004-04:00

What do I have to do to get a doctor to check out Mr. T?? We are still waiting to see a bloody doctor.........agh!!

I think the nurse is getting frustrated with me. She keeps telling me the doctor is doing rounds....the doctor is with a patient....the doctor knows...the doctor will come by.........the doctor is on break!

All morning...Mr. T has been throwing up phlegm and coughing. I am positive that there is something on his chest. They keep telling me not to worry as he doesn't have a fever. This could have been prevented if someone would have listened to me early in the week. No wonder he doesn't want to eat or drink!

Now Mr. T is frustrated and crying....he just wants to go home and he knows this cough will hold him back.

DAY PLUS 37 - AUGUST 23, 2008

2008-08-23T22:28:00.007-04:00

Today wasn't a good day! Mr. T threw up a few times....so breakfast was out! And because he didn't drink his quota today...they had to hook him back up to the saline......so no exercise either.

It seems like 1 step forward and 2 back.....but I'm not complaining. We're getting there slow but sure.
He did have 2 cans of diet ginger ale at 335 ml each.......but that's still not enough...they want him to drink at least 1,000 ml! I'm not going to push it....he cried from frustration....he thinks I'm pushing him too much to eat and drink...just because I want to get home soon.......and I assured him that's not the case. I'm just following the Dr's orders. But perhaps it is too much for Mr. T....maybe his body needs more time to recuperate, and he's extremely frustrated that he can't do what we demand..... and thats okay with me. Iknow we're on the last leg of our journey.....so I'm willing to let Mr. T go at his own pace. I think we are both frustrated & very homesick.

Today he also tried to eat....2 oz of chicken and a bite of a roasted potato...and a handful of chips.

4 days ago...I told his nurse that I thought Mr. T was coming down with a cold.....but unless he has a drippy nose or fever...they don't do anything. The next day...I told the nurse...I think his cough is worse....still....if he has no fever, no phlegm, well they don't bother.

Today...Mr. T was coughing a lot more....so this time I insisted that I want the Doctor to check him out.....his cough sounds phlegmy to me!
She told the doctor on call at 4 p.m.......and we waited & waited......and waited.
Everytime she came into the room...I asked her if the doctor was coming as I don't like the sound of his cough....a harsh, dry hacking cough.........and yes, she said...he was coming any time now.
My constant fear is that a simple cough can turn into pneumonia.......and we don't want or need any complications right now.........and still we waited. It is now 9 p.m.....and still no doctor.

Yes it is a Saturday.....so there is less staff.......I understand that...and this is a large hospital...so we have to be patient.

DAY PLUS 36 - AUGUST 22, 2008

2008-08-22T09:53:00.006-04:00

Today's counts are very confusing. White blood cells are 4.8...down from 6.5 & Neutropolys are 2.78...down from 3.54. They say its normal for the numbers to fluctuate....then why have they not been fluctuating in the past 2 weeks...they were just going one way and that was up?? I really think the lab can make mistakes or the blood test wasn't a good one. Our nurse today tells me they look for consistency and patterns...to look for a trend. If the numbers keep going down...then they want to know why! I will be closely watching the numbers in the next few days....and they'd better be going up!

I understand this could also happen if you have a viral infection. Hmmm!
Yesterday Mr. T did have breakfast but threw it up. Later he ate one pierogi and kept that down. He is trying.

Today he ate one bite of waffles and said they had a metallic taste. The 3 cookies he ate were fine...and so was the Oh Henry! He is drinking a lot more fluid as well.. If he keeps this up...we are sure to go home by Tuesday or Wednesday.

The physiotherapist came to see us today. She gave Mr. T some homework to do till Monday. He is to go for a 10 min. walk (in the halls) twice a day....as well as some calf stretches and one flight of stairs a day.

Today we walked the hallways.....he wasn't attached to the machine.....he wore a mask....he did some stretching exercises with the therapist....he was on the computer for a few hours as well. I'm very happy with his attempts at walking and eating.

Finally.....we are getting ready to go home!

DAY PLUS 34 - AUGUST 20, 2008

2008-08-20T17:23:00.004-04:00

So far...so good! The numbers are amazing...his counts keep going up. Mr. T's white blood cells are 5.2 from 4.1.
Neutropolys were 2.53 and now they are a whopping 3.54!
Dr. Sam told us T does not have GVH (graft versus host)...but he does have a viral infection from the stool sample and there is nothing to do for that. We can even go home with a viral infection.
We are still waiting for the opthamologist to come and see him as his eye is very red and caused him pain...but he hasn't come yet.
His doctor told me that Mr. T can now eat and drink whatever he wants...but he doesn't want to.
They advise not to have dairy foods right now with diarrhea. I'm trying to encourage him to have soup or crackers or even toast...he says he might tomorrow.
This afternoon we went for a pantamidine test....this is a treatment to discourage pneumonia on his lungs.
He asked me to buy him peanuts...so I bought 3 different kinds...and he's eating cashews. It's a start!

DAY PLUS 33 - AUGUST 19, 2008

2008-08-19T18:29:00.003-04:00

We are still waiting on results from the lab. Mr. T is still not eating or drinking and they advise me not to push it. He was sick this morning...throwing up bile. I hope tomorrow he feels like drinking. He will see the physiotherapist tomorrow as well as the eye doctor. His right eye is still red and sore from the shingles.

He watched television all morning, played a game on his PS3 and beat me at Crazy Eight's!

KIND OF CONFUSED.............

2008-08-18T14:48:00.003-04:00

I really don't know what to think. This morning when Dr. Doyle did his rounds....he would not talk about discharge...not until we get results back from the lab. When a doctor says...you have to be patient...these things take time......that means you will definitely stay awhile.

This afternoon...Dr. Samira came to see us........and she said...because his stool is not runny...there is no reason why we won't be discharged this weekend. Just for today to remain in isolation and either today or tomorrow a physiotherapist will come see us to prepare Mr. T for going home this weekend.

So who do I believe? and what do I believe??

I don't know if we're coming or going....and I wish the doctors were a little more sure of themselves. You really don't have much confidence in someone who's always sitting on the fence. How can they be on the same team...with such drastically different opinions? Makes you wonder..........

I really want to believe that WE ARE GOING HOME! So...I will believe Dr. Samira...even though she does look like Janet Jackson! If she looked like Michael.......forget it!

DAY PLUS 32 - AUGUST 18, 2008

2008-08-18T12:04:00.004-04:00

Today they will send samples of stool to the lab - the Dr thinks the diarrhea could be signs of Graft versus Host disease where the donor cells attack the body. We will know the results of this in a few days. Hopefully the results will be negative...but till then they don't want him to eat or drink!

The good news is that his neutropolys have doubled. They went from 1.01 to 2.53 and his WBC are 4.2.

Mr. T begged the doctor to please let him go home...and the doctor explained that its not a good idea right now....and to just be patient for a little while longer!

So...although we are still in a step-down room....Mr. T is in isolation again...they don't want him leaving his room.......and I have to wear the dreaded yellow gown again! Oh well...it could be worse!

At least being in this room...Mr. T's mood & attitude has improved. He's trying to stay up longer in the day & is now watching television. Baby steps all the way!

DAY PLUS 31 - AUGUST 17, 2008

2008-08-17T18:32:00.006-04:00

I need to be patient...I expect too much! Today...Mr. T didn't feel good. He threw up twice this morning (bile) and refused to eat. Later I pushed him in his wheelchair around the hallway twice...and even that was a lot. He was crying with muscle pain...needed hot packs on his legs & hydromorphone for the pain as well as gravol & ativan for nausea. I ran a hot tub for him...and that seemed to help a bit.
Mr. T has lost a lot of muscle in his arms and legs from being in bed so much...so it will take time to strengthen him once again. He promised that tomorrow he will walk a bit on his own. One day at a time!

DAY PLUS 30 - AUGUST 16, 2008

2008-08-16T15:41:00.005-04:00

Great day today! Mr. T was up bright and early....and had breakfast! He ate all his cereal and had a raison & cinnamon bagel w/butter and ate everything! I thought for sure he would have to give it the old heave-ho....but not really. The food stayed down. Then he played his PS3 games till lunchtime. Finally!
For awhile there...he had his days & nights reversed....maybe he's getting back on track now.
His WBC's are 2.9 ...
Also today....no more hydromorphone through his line. If he needs it he will have to take the medication orally. No more Stat probe on his toe....that's gone as well. Every day...small changes & baby steps till we can run...............all the way home!

DAY PLUS 29 - AUGUST 15, 2008

2008-08-15T13:37:00.003-04:00

It keeps getting better! The neutropolys are 1.01 today. Mr. T is feeling better...he was playing PS3 games all morning.

This afternoon we moved to a step-down room! No more wearing yellow gowns! We're getting closer to our goal every day! Just baby steps for now!

The shingles rash is clearing up nicely and he's no longer contagious. Mr. T has not eaten yet...but I'm sure that will be the next step.

His Uncle came to visit with Mr. T's sister and brought him more games for his PS3...and encouraged him to start eating and drinking more.

DAY PLUS 27 - AUGUST 13, 2008

2008-08-13T10:59:00.006-04:00

Today neutropolys went from 0.51 to 0.78. Yahoo! Yippee! Hot diggety-dawg! White blood cells are 2.7.
Mr. T did drink a bottle of iced tea this morning...but still refuses to eat. As anybody who has dealt with him knows how very hard-headed he is!
All day long I kept the television on the Food Network channel...and as well...I ate in his room with much moaning & groaning and smacking of the lips & drank or should I say slurped my drinks with a straw. Yes, I know the visuals are scary! But I'm desperate to get him eating again.
We will be out of isolation and into a step-down room on Friday!
Finally....out of solitary! Before you know it.....we'll be home-ward bound!
Isn't it amazing that he had the bone marrow transplant on July 17th....and we are not even a month....and Mr. T is doing so good?? I believe that its not only the medical care Mr. T received...but its also the 'power of prayer'. Prayer is the best medecine!

DAY PLUS 26 - AUGUST 12, 2008

2008-08-12T17:00:00.005-04:00

Today...Mr. T's white blood cells are 2.2. This morning he woke up and started playing his PS3 for an hour. That's a good sign! Today...they will remove the TPN just in the daytime....and as well cut back on the hydro-morphone.

Also....Mr. T received a gift from the nurses and staff at Cheo hospital in Ottawa. He was thrilled when he read the card they all signed and left comments of encouragement and cheer for him. They must know him really well as they sent him a Manga binder and also Manga sketchbook with markers and crayons. They even sent me candy!
He felt really good to hear that they were all thinking of him and wishing him well.
He said......"tell NOAH TO THANK EVERYONE FOR ME" and I'll see them soon.

I'll be really anxious to see what his neutropolys are tomorrow.
They only do the bloodwork for that on Monday's, Wednesdays & Fridays.

DAY PLUS 25 - AUGUST 11, 2008

2008-08-11T18:02:00.005-04:00

Whoo hoo! I'm doing a happy dance! Great day today! The counts are coming up very nicely. WBC (white blood cells) are up to 1.9 and the polys.......are wayyyy up! From 0.18 to 0.51! We would be officially out of this isolation room at 0.5 but Mr. T still shows an infection in his stools.......but still........in a few days the infection will go....and so will we.

I am so excited......finally I can see the light and its getting bigger & brighter. Today I spoke to the Dr.....they have stopped the vancomycin as well as 2 other antibiotics. They will start to slow down the hydromorphone which is very addictive. And the Dr wants my grandson to start drinking and eating in preparation of going home. Hopefully...if everything goes well...I can see us leave in 2 weeks......the Dr. never said 2 weeks....but I don't see why not.

One Endo Dr. here said she doesn't see why we can't leave in 1 week...but I don't think that is realistic. He has to start eating and drinking....get rid of any infections....and get his platelets up...get off insulin and the TPN....so 2 weeks is more realistic. Also we may not be going home...but back to Cheo which is a lot closer to home...but that's okay with me. If everything goes well with Mr. T we may go straight home and visit the hospital twice a week for check-ups. So...it's anybody's guess right now...but we're getting closer to our goal.

I can't wait....even Mr. T is starting to realize that its not just wishful thinking....this is really happening. He even suggested to the nurse that she can take him off TPN....but of course she can't till he starts drinking & eating.

Hopefully I can convince him to start drinking a little more...and perhaps in a day or so...he can start on food. Just baby steps.

We may still get to enjoy some summer at home....yahoo!

DAY PLUS 24 - AUGUST 10, 2008

2008-08-10T22:23:00.006-04:00

Agh! Still no internet...so I can only post for a few minutes. It keeps getting better. Mr. T's WBC (white blood cells) are 1.5 today.....and his neutropolys are still 0.18. I will know the new numbers tomorrow afternoon.

I expect his neutropolys to be way up!.

I spoke to a doctor tonight who was on call...and he said....don't start packing yet....Mr. T has to start eating and drinking on his own before we can hope to get discharged....as well, he has to be off the infusions.

Tee has been sleeping alot....with the help of hydromorphone, benadryl and gravol. We hope to start getting him off these addictive drugs this week. I'm hoping they can start to ease up on it.

Of course with the TPN he has no appetite or thirst....I keep asking him if he wants anything to eat or drink....and of course he refuses. After awhile your body just forgets to eat or drink. I'm going to have to start being a nag and encourage him to eat on his own...so we can eventually get back to eating and drinking again.

Will have more news tomorrow.

I AM VERY THANKFUL....

2008-08-09T14:41:00.000-04:00

Today I am very grateful for all the people that are praying for Mr. T. Thank you so much for your prayers, comments and support. It's working....so please keep it up! I keep up-dating Mr. T's blog as I know so many of you read it. I don't know if I would continue to blog if nobody commented. Thank you as well to those who don't wish to comment...I know you do read and wish us well on our journey to better health.

Although we have been away from home for over 4 months now....and we are very homesick....I am still grateful that Mr. T is doing so well compared to a lot of children here. We WILL get to go home and I can't say the same for all the kids here. There are many people here who are a lot worse off than we are. There are parents here who have had to give up their homes and their jobs in order to be with their sick child. I have met others with 2, 3 or 4 other children to take care of as well.

I am blessed that my humble home is paid for and I have no mortgage. My granddaughter is being taken care of by my neice and she is having a fun summer with daycamp, swimming & activities to keep her happy & busy. Younger son and his wife will go and get my granddaughter in a few weeks and get her ready for school at the end of August if I'm not home in time to do it.

I'm also grateful for my sister-in-law who works at long-term care and keeps a close eye on my mother who has congenital heart failure. She does her laundry, takes care of her needs, and spoils her while I'm away.

There is so much to be grateful for. I'm glad it's summer. This would be much more difficult on all of us if it was winter. I'm glad to be in downtown Toronto, so close to everything! I'm grateful to be in good health....and I'm so grateful to be able to take care of my grandchild.

Walking around downtown Toronto....you can't help but notice the homeless people who ask for change or a cigarette....and my heart goes out to them. There but for the grace of God go I......you can't help but think that they are somebody's son, daughter, father or brother. I am grateful that I can give them a cigarette or a dollar.

I'm grateful for Ronald Mcdonald House....Dominion store, World's Biggest bookstore, hotdog stands, laptops & cellphones!

I'm grateful that I've met so many wonderful caring parents. They show real strength & courage, day after day, with nothing but HOPE to keep them going. The real hero's are the children...all of them.....they have suffered so much and still, their indomitable spirits refuse to give up. They know that life is precious & sacred...they are true warriors in every sense of the word.
And I'm very grateful for the wonderful doctors & nurses we have here at Sick Kids. Some days go by quickly.......and some days just drag...but I can see the light at the end of the tunnel! We are getting there......one day at a time!

Thank you friends and bloggers. We appreciate your comments, prayers and warm wishes. Keep it up......don't stop now.....we're almost there!

DAY PLUS 22 - AUGUST 8, 2008

2008-08-08T12:30:00.003-04:00

I can't post any pics as I'm using the computer at RMH. Internet is not working at the Sick Kids Hospital. Just to let you know that I am so encouraged by the numbers. Very good news!

Mr. T's white blood cells (WBC) are 0.7 today. Yesterday they were 0.4.......and also we are finally seeing some Neutropolys........Yahoo! Today they are 0.18...........which means that he is in the process of engraftment.
As soon as he has 0.5 neutropolys,...we can go to a step-down room!
The only thing we have to worry about right now.......is GVH disease. When his white blood cells come up.......we want to have some Graft versus Host but not too much of it...as this can cause serious problems.
They will keep a very close eye on Mr. T over the next several weeks. Too much Graft versus host can result in liver damage. This is when the blood donor cells attack his system and can result in organ failure or he can easily end up in ICU.
I truly hope that my Mr. T can sail through the GVH as he has so many other things.

Day Plus 28 they will do a test to determine what percentage of bone marrow donor he has....hopefully it will be 100% donor and none of his!

BEGGARS CAN'T BE CHOOSERS!

2008-08-06T18:00:00.003-04:00

It took me exactly 3 weeks to get a room at RMH (Ronald Mcdonald House). They only have 28 rooms available and too many families in need of a room. I have to admit that upon seeing the house...getting a tour...it was a bit of a disappointment. A far cry from the Westin Hotel at Harbourfront.

I did speak to a young couple who had gotten a room at RMH a few days before me....and they weren't impressed to say the least. The very 1st night they spent there...they were so exhausted at midnight that they just fell into bed. The next morning while making the bed...they saw that the bedspread had a huge bloodstain on it(on the underside of the cover)...and then noticed other old stains on the sheets. The wife broke down in tears and wanted to go back to the hotel...but they couldn't afford it. The husband kept saying...'oh please let it be blood from a little kids nose'!

I advised them to go buy sheets and pillows. If spending a little money meant they got a good nights sleep....well then its worth it. The young couple ran to buy sheets, pillows and a blanket at Walmart.

It's not the staff who does the laundry. You have the 'honor' system there. All families are expected to do their own laundry, bedding and make sure to leave the room as clean as possible for the next family.

You can just imagine if a family stays from 3 to 6 months with children....there will be stains to contend with, and some people are just cleaner than others.

I had decided to check it out...before spending any money needlessly. Well it didn't take me long to find a Sears store. I bought queen size sheets, pillows, and a blanket. Yes...this is a double bed...but I will be bringing my sheets home when I leave.

Every room comes equipped with a television set, free cable and a VCR....as well as a telephone for local calls and an alarm clock.

Several people have asked me how I like the RMH and how it compares to a hotel. Well there is no comparison. A few of the parents will soon be coming here shortly from Ottawa. And yes, I have told them to bring their own linen & towels. Well....I'm not terribly fussy. As long as I have a clean bed and bathroom, I'm happy. In describing the house....I would use the terms old, grungy, shabby, grimy and in need of fresh paint everywhere. Let's not forget that RMH depends on donations for everything from painting, caulking tubs, repairs, linen, towels & so much more.

As you can see...the furniture is painted grey and the walls are papered which adds to the gloominess of the room.

The wonderful thing about RMH is that its an 8 minute walk for me....so no buses or cabs to take.

Yes I did take pictures....as I find a picture says a lot....and I won't be accused of exaggerating! Also don't forget.....to some people....living here is better than what they have at home....and to some....a lot worse! To each his own! To many of us....this is home away from home! You make the best of it. Just shut up and deal with it!

Downstairs they have 3 separate stand-in kitchens in one to serve the families. The one thing that makes the eating area so forbidding is the pipes running through the room at the ceiling...and then again a fresh coat of paint would do wonders here. The fridge and stove & microwave in each kitchen are new and spotless. Each room has a cupboard for your groceries that you can lock. They tell you to put name tags on anything you put in the fridges...but then again....things do go missing.

The chairs in the eating area have been painted bright to make the room look cosier......but instead the room just looks crowded and cluttered.

They have a deck at the back of the house with a covered deck that is used for the smokers....or families that want to bbq.

Because the deck is at the back of the house...you don't get much of a breeze. Again...this area is small & grungy....an area where all the families go to smoke, talk or just sit.

Yes....that 'is' a baby walker you see in the picture.

It totally amazes me that there are families that will sit out there for hours on end....smoking with their young children around. Some kids have just gotten a heart transplant, kidney transplant or bone marrow transplant......and yet the parents will sit there and let their kids suck in 2nd hand smoke....and sit with them at the table.

Some of the parents even hold their kids while they chain-smoke. Young mothers are out there smoking with baby strollers.

There is no sign on the door...stating that only adults of 18 or older are welcome on the deck.

I suppose that I'm just as bad...as I feel like saying something...but at the same time...I don't want to make waves. If you're that ignorant.....that you would smoke with your kids out there.....I don't think you would welcome my criticism.

I am not in any way putting down RMH. It's a home for many families while we go through tough ordeals here in Toronto. Just be prepared. Do as you would in a motel...bring your own sheets and pillows. Also....some RMH's are much newer than this one...and are better funded. That's the bottom line.....it's all about money.

I hope you enjoyed your visit! If you have anything to donate....whether its goods or service....please don't forget your local RMH.

DAY PLUS 20 - AUG. 6, 2008

2008-08-06T14:28:00.003-04:00

Today the WBC (white blood cells) are 0.3. That is very encouraging.

It's been 5 days now that Mr. T has spiked fevers...the tylenol seems to help.

Although he is very crabby....today he played one of his new games on his PS3 for half an hour.

As you can see the Shingles is mostly on the right side of his forehead and his right eye is swollen.

They continue to give him Gabapentin for the pain.

They tell me that on Day 28 they will do a blood test called Chimerisms to check the percentage of donor engraftment. At that time they hope to see 95-98% donor engraftment. This means that most of his cells will be from the donor. We wait patiently for his counts to come up.

DAY PLUS 19 - AUGUST 5, 2008

2008-08-04T19:59:00.007-04:00

Once again....the WBC (white blood cells) are at 0.2. Last night Mr. T was hallucinating! He said it was very scary. I spoke to the doctor...and she said it was the hydromorphone that was causing the hallucinations. They had changed from morphine as the morphine was making him too itchy. They gave him Benadryl for the itchiness...but it wore off in an hour...and he was still very itchy and they couldn't give him anymore Benadryl for hours...so that's the reason they switched to hydromorphone.

Now the hydromorphone is causing him to hallucinate.....which makes him jump up... out of breath and really scared.

It's very difficult to find a drug to fit the need. Every medication has side effects. They will continue with the hydromorphone and hope he gets used to it...as long as he knows he is hallucinating...that nothing is real.

Mr. T continues to spike fevers. This morning he was 38.9 again. And now he's 39.4. This morning he had an x-ray in his tiny room........and later he had an ultrasound done. I'll know the results by tomorrow.

While these tests were being done (I can't stay in the room)....I went to Future Shop and bought him Call of Duty 4, and Heavenly Sword for his PS3. I hope he can start playing his games in a few days. Right now he just wants to sleep.

DAY PLUS 18 - AUGUST 4, 2008

2008-08-03T20:22:00.005-04:00

We hardly slept last night...woke every hr. to take Mr. T's temperature.

Last night his temperature continued to increase. It was 39.2 & they treated that with Tylenol.

This morning Mr. T was 38.6 & again he received Tylenol.

Today his WBC (white blood cells) is 0.2 again. Once he gets to 0.5 we can go to a step-down room where the rules aren't as strict. We are looking forward to moving out of our cell.

Mr. T is on new antibiotics because of his spiking a fever.

He now gets...ciproflaxacin...vancomycin again & meropenum. The anti-fungal he is getting is called caspofungin & his c-diff is Metronidazole.

He now gets 300 cc of Gabapentin for his nerve pain...and I think this is helping as he is not asking for hydromorphone as much.

Even though he sleeps a lot...I can see he is feeling much better...he is not waking evey hour in need of medication.

DAY PLUS 17 - AUGUST 3, 2008

2008-08-03T11:42:00.007-04:00

WBC is 0.1 today...the same as yesterday. Mr. T is still in a lot of pain. They are changing the Gabapentin from 100 mg to 300 mg. He has started to throw up again...but this is because of the pain & the medication....as it is clear bile...not blood!

Mr. T slept all day.....I think he over-did himself yesterday when he had visit. Time to rest and recuperate.

Now he has a temperature......38.9........and the beat goes on & on & on.....

PS3

2008-08-03T11:12:00.004-04:00

Today...Mr. T's biological grandfather came to visit from Edmonton. This is his mother's dad! He did come to visit him 8 years ago when Mr. T was 5 yrs old.

I had just learned lately that this grandfather had received donations from his community....3 years ago when Mr. T was first diagnosed with leukemia. I really don't know what amount the community had raised for Mr. T....

The grandfather asked Mr. T what he really would like as a gift. When Mr. T told his grandfather today that he wanted a PS3...his grandfather went down to the Future Shop on Yonge & Dundas and bought him one. He also got him 2 games to go with the system. Better late than never.

Mr. T was too sick to be entertaining anyone...but he did sit up and talk for half an hour....and made a half-hearted attempt to play a game.

He is very impressed with the new system....he thanked his grandfather profusely for it. I'm sure when Mr. T feels better...he will make much use of it.

Now he has every system available....and all the latest games as well.

DAY PLUS 16 - AUGUST 2, 2008

2008-08-02T08:49:00.008-04:00

This is definitely not a good day! Mr. T received more platelets as well as blood transfusion this morning. That's a lot of additional liquid on-board. Then they started him on Lasix...as his kidneys are retaining fluid.

March 31st...Mr. T weighed 85k......today he is down to 72k.....he hasn't eaten in 13 days now. I'm definitely in agreement with others....that if your child is going through cancer treatment or a bone marrow transplant....it is a definite advantage if your child is overweight. We have seen many children after a transplant....they barely have the strength to get through this ordeal. Mr. T still looks very good regardless of what he's been through so far.
His white blood cells are 0.1 today. He will also need potassium as his levels are too low. The Lasix removes it from the body...so he will get a bolus to replace it
His mouth sores are gone....thats because his counts are coming up.
This chicken pox virus threw us for a loop.....but I have faith that Mr. T will get through this as he has gotten through every challenge up to now. Patience & perseverance will be our allies!

DAY PLUS 15 - AUGUST 1, 2008

2008-08-02T08:40:00.004-04:00

Drugs and more drugs! Today they started him on Amitriptyline for the Zoster virus...as well as Gabapentin 100 mg. He is getting 3cc of hydromorphone every hour as well as his other medications.
His rash over his right eye has turned to oozing blisters. They are hoping that the virus (chicken pox) will clear up within 48 - 72 hours.
Mr. T likes his room dark and no noise. The pain he has is very similar to migraine pain. Noise & light can affect it. We keep the room as dark and quiet as we can.
Hydromorphone doesn't take away his pain....it just knocks him out...and when he wakes up...the pain is still there. There is nothing you can do but wait and hope it goes away on its own.
The only good thing about today is his white blood cells (WBC) are up to 0.2. This gives me hope!
Kidneys are still retaining fluid.

DAY PLUS 14 - JULY 31, 2008

2008-08-01T08:09:00.007-04:00

Day 14 came in with a vengeance. Mr. T had a rash over his right eye for the past few days. This morning he had a lot of pain in that area. I noticed that his eyebrow and eyelid were swollen...so I told the nurse I wanted to see the doctor. As soon as Dr. D came in.......he said.."That's Zoster...Shingles...he has the chicken pox virus!"

Right away they started him on verconazole and acyclovir as this is a viral infection. Chicken pox can be deadly for bone marrow transplant patients as they have no immune system to guard against it.

Once you have chicken pox as a child....it lies dormant in your nervous system for years and shows up when it wants to. The pain is excruciating! Mr. T can't stand the light in his face or eyes...or loud noises.

They moved in another clothes hamper (in our cell) so that my gowns can go directly into it as well as Mr. T's bedding. Now I'm in a lot of pain from constantly whacking my ankles on all the sharp objects in this room. I also have to bathe him wearing gloves as this viral infection can be only transmitted through contact.

Later we had to go down to Nuclear Medecine to have a GFR done. This is done to determine why he is retaining fluid in his kidneys.

Glomerular filtration rate (GFR) is the volume of fluid filtered from the renal (kidney) glomerular capillaries into the Bowman's capsule per unit time.[1]
Glomerular filtration rate (GFR) can be calculated by measuring any chemical that has a steady level in the blood, and is freely filtered but neither reabsorbed nor secreted by the kidneys. The rate therefore measured is the quantity of the substance in the urine that originated from a calculable volume of blood.

Renal function, in nephrology, is an indication of the state of the kidney and its role in renal physiology. Glomerular filtration rate (GFR) describes the flow rate of filtered fluid through the kidney. Creatinine clearance rate (CCr) is the volume of blood plasma that is cleared of creatinine per unit time and is a useful measure for approximating the GFR. Both GFR and CCr may be accurately calculated by comparative measurements of substances in the blood and urine, or estimated by formulas using just a blood test result (eGFR and eCCr).
The results of these tests are important in assessing the excretory function of the kidneys. For example, grading of chronic renal insufficiency and dosage of drugs that are primarily excreted via urine are based on GFR (or creatinine clearance).

Up to now....Mr. T hasn't been really sick...aside from the diarrhea and throwing up constantly. Now the real fight begins!

They will be giving him back his PCA. They took it away 2 days ago...as they felt he wasn't using it enough...and didn't want him to rely on it.

Now because of the excruciating pain......they will give it back & he can adjust the hydromorphone he receives.

PCA stands for “Patient Controlled Analgesia.” This type of pain control allows the patient to self-administer effective doses of medicine for pain. The pain medications are given to the patient through an IV (which means “intravenous” or “in the vein”). When the patient feels pain and needs pain relief from the medication, then he or she pushes a small button that is connected to a pump device that controls the IV at the bedside. By pressing this button, the pain medication is automatically delivered into the patient’s vein. When the medication arrives in the veins, it travels throughout the body and pain relief begins to work. Because the PCA enables the patient to control his or her own pain as needed, the patient does not have to rely on the nursing staff to administer the needed drug.

Dr. M from Cheo came to visit us again today. It is so nice to see a familiar face. Mr. T hopes (he insists) to go back to Cheo as soon as possible. I think she was shocked to see him with Shingles. She told us to insist that he get pain medication when he needs it. He was only getting 1cc every hour of hydromorphone and now he will be getting 2cc. Even putting a cold pack on his forehead is painful. For several days now...Mr. T doesn't watch television. He sleeps and wakes only when the pain is too hard to handle or to urinate.

Let the battle begin!

ARE YOU MAN ENOUGH????

2008-07-30T09:40:00.006-04:00

Don't you just love that advertisement? I saw it on the following website on Men & Nursing.

http://www.menstuff.org/issues/byissue/malenurses.html

We need more men in this wonderful profession. Men have so much to offer and male nurses have been getting a bad rap for a long time. This is not a profession that is just for females...it takes guts & courage & strength to do this job. I know that Mr. T loves the male nurses at Cheo....he will listen to them more than he does the females. I think that has a lot to do with him missing & needing a male mentor in his life.

The same applies here at Toronto Sick Kids. Thank God for Francis & others. They have a wonderful rapport with the kids. The kids really need to have a good relationship with the nurses, as they are hospitalized for long periods.

Don't get me wrong.....the female nurses are great too! Mr. T gets along with all of them, some better than others. Age has nothing to do with it. You can have some young nurses who act very old...........and some older nurses who are very young at heart.

I'd be fibbing if I said I never had a run-in with a nurse or doctor....but fortunately those experiences are very few.

In every profession....you will meet someone who doesn't like their job....or shouldn't be working with kids....and unfortunately I have met a few....and Unfortunately...they met me! (Both Dr's & Nurses).

I'd better stop now before I put my foot in my mouth. Enough said!

Let me say though....that the majority of nurses I've met....like 99%.... are wonderful, caring, compassionate, hard-working, inspiring, funny, thoughtful,giving,intelligent people that I am very proud to know!

A LOT OF MEDICATION...

2008-07-29T19:58:00.004-04:00

No wonder Mr. T is tired. This is a list of medication that Mr. T is taking...and this can change momentarily.

Antibiotics: vancomycin, tazocin, ciprocoxacin and metronidazole (flagyl).

He also takes Tacro which is an immune suppressant as well as benadryl, gravol and ativan as needed in his line. He takes nifedipine for high blood pressure and pantoprazole which is a high-class antacid. Then he gets hydromorphone to control pain (pump)...insulin and TPN & Lipids. All these medications...although needed have serious side effects & some have long-term side effects.

Mr. T's favorite DOC (drug of choice) is gravol. It calms his stomach & always helps him sleep. Some of the nurses tried to tell him that gravol & benedryl are the same....and he will argue with them. He prefers gravol........and when he takes it.......it ALWAYS makes me feel better too!

He gets platelets as well as blood every 2nd day or as needed.

GREAT BALLS OF FIRE!

2008-07-29T19:11:00.005-04:00

Would you look at the size of that meatball? next to my cellphone? That was my lunch! I have never seen a meatball that big! Only $2.69 but very filling.
I bought it at the deli counter at the Dominion Store which is open 24 hrs a day.
It was really good! The sign said 'Greek Meatballs'. They are a mixture of meat and rice & very tender! Only thing missing is the chilies!
I can't wait till Mr. T can eat again....Toronto has so many wonderful foods to try.

DAY PLUS 12 - JULY 29, 2008

2008-07-29T12:22:00.005-04:00

Mr. T's WBC (white blood counts) went down. They are 0.1 today.
He has been throwing up all day....and sleeping! He keeps throwing up blood....they think its a bleeding ulcer....what's next? They want to start a new medication to stop him from throwing up blood....but he doesn't want to take it. He told them in no uncertain terms to get lost....he wasn't going to be poked with anything else!! I told them to let him sleep...perhaps after a nap he would be in a better frame of mind. There is nothing I can say or do to make him feel better. Some days are like that...and yes cancer sucks, chemo sucks and it sucks to be him! Right now it sucks to be me too!
Now I'll stop whining!

REST....REPLENISH & RECOVER - DAY PLUS 11

2008-07-28T12:00:00.007-04:00

Dr. D came by this morning while Mr. T slept....and he said this is the time to rest, replenish & recover. He also said that Mr. T 'just may be in the process of engraftment' as the white cells are 0.2??? Can that be possible...or is it a false reading?? they don't really know....but that would be really great though! It would be quite early as we are only Day Plus 11...but anything is possible! He will come by later and let me know if his neutropolys are up as well. There are people here who are a week ahead of us...and they have no counts whatsoever! The team keep reminding me that 'no 2 kids are alike' & that everyone is different. And yes...I will clutch that straw as tentative as it is!

Also he is no longer retaining fluid on board. Liver enzymes are slightly elevated...so they will keep a close eye on his liver.
The other day when he was peeing blood I called the night doctor on call to check Mr. T....and she had told me it was from the mucositis. This Dr. does work on all the floors not just Bone Marrow...so maybe that's why she wasn't too informed.
Well...I have always believed that nurses know best. Today a nurse told me in detail...that mucositis affects the gastric system....in other words...from the mouth to the butt. It cannot affect the penis or urine.
Mr. T's urine was brassy red from blood in his kidneys.....and he pukes up red which is the mucositis. Hopefully they can clear that up soon!

DAY PLUS 10 - JULY 27, 2008

2008-07-27T10:07:00.007-04:00

Today they tell me that it's not a 'low-grade infection' he has. His urea level is higher than normal. It's a SERIOUS infection....so they will do an ultra-sound later today in his room as they are worried about his kidneys! I have been telling them that in the past whenever Vancomysin was given...there was damage done to his kidneys...we ended up in ICU & Mr. T was on dialysis.....but what do I know eh???

Also after doing urine and blood tests......it's NOT the mucositis in his urine or penis. They say that the blood showing is from the kidneys....so more tests will have to be done today. No wonder he feels crappy & tired!

His kidney's are retaining fluid. They can tell this by his weight. He is not peeing out as much as he takes in. The nurse says he may have an extra quart of fluid on board??
They will give Mr. T more platelets today. He receives them every 2nd day.
He is taking 3 different antibiotics now....vancomycin every 18 hours...Tazocin every 8 hrs...and Ceprofloxacin every 12 hours.
He won't eat or drink....his mouth sore's and throat sores are bothering him. I can't even eat in front of him....just the smell of food will make him throw up. I have to go to the parents lounge to eat.
He has been sleeping a lot...and he passes the time either watching movies, painting or sketching and organizing his chaotic cards into a binder.
We could have had a video phone set up so that family could call us and see us in our room at Sick Kids and we could see them. After speaking to other parents...I decided not to. It may be a benefit for some...but not for others....especially the teenagers.
I know if his Papa spoke to him about fishing & hunting...or his dad or Uncle were there...Mr. T would be so homesick...he would cry & feel more lonesome than normal. Ignorance is bliss....sometimes!
Our waiting game continues....one day at a time!

DAY PLUS 9 - JULY 26, 2008

2008-07-26T13:46:00.005-04:00

Last night Mr. T threw up several times during the night and again this morning. They started him on Vancomysin...an antibiotic, as he has a low-grade infection. Last night while he bathed himself...he noticed blood around his penis....so I called the doctor. They said its mucositis as it can spread throughout your body....and suggested he drink a lot of liquids????? He's not drinking at all....he gets all his fluids through I.V.

Yesterday I had bought Mr. T the game cards he wanted called Chaotic. Today...while he slept...I went and got more cards and a binder w/pockets so he can keep his cards clean & organized. 401 Games is 2 blocks down on Yonge and has everything for gamers. I should be getting a discount with all the stuff I have bought there! You can find anything you want in Toronto. It's a wonderful big city that hardly ever sleeps.
This afternoon....Mr. T woke up and worked on his cards....organizing them and putting them in his album....but then he went back to sleep. He is taking a lot of medication right now...so sleep is the best cure! Hopefully...he will feel better tomorrow!

DAY PLUS 8 - JULY 25, 2008

2008-07-25T09:13:00.003-04:00

What a crazy week! I'm so glad it's Friday....the mouth sore's continue to get worse each day. Now its difficult for Mr. T to drink anything even water....and you'd better believe when Mr. T can't eat or drink......he's not a Happy Camper!
They tell us that once his counts come back...the mouth sore's will disappear. Till then he controls the pain with the morphine pump. We continue with the foot soaks...mouth rinses & lots of morphine.
I had asked the Child care Specialist for Paint by Numbers for him. Sometimes when you do something like that...it can take your mind off your body...and the different aches & pains you're going through. Right now he's totally absorbed in the painting & much calmer.

DAY PLUS 7 - JULY 24, 2008

2008-07-25T08:59:00.004-04:00

The mouth sore's are worse today...some in his throat which makes it difficult to swallow. Mood swings are worse too......so bad that I've been taking a lot of walks lately. Mr. T doesn't understand what's happening. He snaps at people...then cries because he hurt their feelings. Even when we assure him that we understand and it's okay...he feels so bad for mistreating or yelling at anyone. The nurses here are very patient & understanding & they encourage me to go for a coffee or take a break when Mr. T is acting in a difficult way. I've been to the Eaton Centre several times....as well as the huge Sears store there. Also...a few blocks away they have the World's Biggest Bookstore....(I'm in heaven)...this book store is a block long and 2 stories tall. You can browse there for hours!

Mr. T has a recurring infection in his big toe....so he has many foot soaks with saline...every 3 hours...followed with Polysporin & gauze.

Today Mr. T's mood lifted quite a bit. His Uncle had downloaded him a lot of good movies....and he really enjoyed THE LOVE GURU. He watched it 3 times....and laughed so much....I had to watch it too. Get ready to laugh your socks off!

DAY PLUS 6 - JULY 23, 2008

2008-07-25T08:39:00.003-04:00

Mr. T is very crabby today. Crabby, cranky, angry, weepy & sleepy. Anything at all can cause him to cry and then he gets angry. No win situation. Even opening the light can cause him to yell that we startled him. These steroids play havoc with a person's moods and behavior. There is nothing positive to say about it. When Mr. T flies off the handle...I quietly leave the room and go for a walk or a coffee. We are just taking it one day at a time.

MUCOSITIS - JULY 22, 2008

2008-07-23T11:51:00.005-04:00

Mr. T got mucositis today. We were expecting the mouth sores to start. He was very lucky so far. All you can do is follow good hygiene....and use mouth-rinses 4 to 6 times a day. Morphine is used for pain....and nothing else you can do about them. In time...when his counts start to rise...the mouth sores will go away on their own.

Cancer patients undergoing chemotherapy usually become symptomatic four to five days after beginning treatment, reaching a peak at around day 10, and then slowly improving over the course of a few weeks. Mucositis associated with radiotherapy usually appears at the end of the second week of treatment and may last for six to eight weeks.
As a result of cell death in reaction to chemo- or radio-therapy, the mucosal lining of the mouth becomes thin, may slough off and then become red, inflamed and ulcerated. The ulcers may become covered by a yellowish white fibrin clot called a pseudomembrane. Peripheral erythema is usually present. Ulcers may range from 0.5 cm to greater than 4 cm. Oral mucositis can be severely painful. The degree of pain is usually related to the extent of the tissue damage. Pain is often described as a burning sensation accompanied by reddening. Due to pain, the patient may experience trouble speaking, eating, or even opening the mouth.
Dysgeusia, or an alteration in taste perception, is common, especially for those who are receiving concomitant radiation therapy to the neck and mouth area. "Taste blindness," or an altered sense of taste, is a temporary condition that occurs because of effects on taste buds that are mostly located in the tongue. Sometimes, only partial recovery of taste occurs. Common complaints are of food tasting too sweet or too bitter or of a continuous metallic taste.

[edit] Diagnosis
Diagnosis is based on the symptoms the patient is experiencing and the appearance of the tissues of the mouth following chemotherapy, bone marrow transplants or radiotherapy. Red burn-like sores or ulcers throughout the mouth is enough to diagnose mucositis.

[edit] Treatment
Treatment of mucositis is mainly supportive. Oral hygiene is the mainstay of treatment; patients are encouraged to clean their mouth every four hours and at bedtime, more often if the mucositis becomes worse. Water-soluble jellies can be used to lubricate the mouth. Salt mouthwash can soothe the pain and keep food particles clear so as to avoid infection. Patients are also encouraged to drink plenty of liquids, at least three liters a day, and avoid alcohol. Citrus fruits, alcohol, and foods that are hot are all known to aggravate mucositis lesions. Medicinal mouthwashes may be used such as Chlorhexidine gluconate and viscous Lidocain for relief of pain. Palifermin, brand name "Kepivance", is a human KGF (keratinocyte growth factor) that has shown to enhance epithelial cell proliferation, differentiation, and migration. Experimental therapies have been reported, including the use of cytokines and other modifiers of inflammation (eg, IL-1, IL-11, TGF-beta3), amino acid supplementation (eg, glutamine), vitamins, colony-stimulating factors, cryotherapy, and laser therapy. Symptomatic relief of the pain of oral mucositis is provided by barrier protection agents such as "Gelclair." This viscous oral gel can be diluted and used as an oral rinse. The film forming agents within Gelclair coat the oral mucosa shielding ulcerated tissues and protecting exposed nerve endings.

[edit] Complications
Sores or ulcerations can become infected by virus, bacteria or fungus. Pain and loss of taste perception makes it more difficult to eat, which leads to weight loss. Ulcers may act as a site for local infection and a portal of entry for oral flora that, in some instances, may cause septicemia (especially in immunosuppressed patients). Approximately half of all patients who receive chemotherapy develop such severe OM that it becomes dose-limiting such that the patient's cancer treatment must be modified, compromising the prognosis.

DAY PLUS 5 - JULY 22, 2008

2008-07-22T09:18:00.005-04:00

Today...Mr. T's platelets were 15...so the nurse gave him more platelets. Also his neutropolys are now at ZERO. When the neutropolys rise...I will know that the engraftment process starts...they tell me that could take a long time.

He was so itchy today - they say that's one of the side effects of the morphine. They gave him benadryl and that works instantly.
His mouth sores are bothering him. Using mouthwash helps a little and good oral hygiene as well.

DAY PLUS 4 - JULY 21, 2008

2008-07-21T21:16:00.002-04:00

Today...the nurses installed a morphine pump...so that Mr. T can control it himself. He's happy about that. Now he no longer has to call a nurse and wait for the medication.
It was a good day! He still has some diarrhea...but its getting better. No fevers...means no infections. Right now...Infection is the enemy...we don't want or need any infections now.
His glucose is under control & he has no appetite while he is on TPN.
The day was spent watching movies and cartoons. Mr. T remains in good spirits.

DAY PLUS 3 - JULY 20, 2008

2008-07-21T11:23:00.004-04:00

This is the smallest room I've ever seen. I think the main reason is that its much easier to control the air in a small room. In these isolation rooms...the air changes 500 times per hour. I sit in that black chair all day long...and at night I remove the chair..so that I can set up a cot in that space. It's a very tight squeeze. Then you have to lay on the cot in order to put a sheet on it...and if you need to go down the hall to a washroom...you have to scoot to the end of the bed in order to get out of the room. Oh and you also have to sleep in a hospital gown over your pajama's as well.

Although Mr. T still has diarrhea...he did eat some beef jerky today and a few sour candies.
They continue to give him morphine, gravol, ondanestrone, methotrexate, tacro, insulin and some chemo to offset the Graft versus Host.
Mr T is too tired to play his games...but he does watch television & sleeps a lot.

DAY PLUS 2 - JULY 19, 2008

2008-07-21T11:08:00.005-04:00

Mr. T monitors his own sugar glucose. He has his own 'One Step' glucose meter and pokes himself 4 or 5 times a day. His glucose goal is between 6 & 12...and so far it's good. This way they know how to adjust his insulin levels.

Today he started having diarrhea. I expected this to happen...that's why they told us to bring triple underwear. They have given him Ativan in his line to help with the cramps. He also bathes himself everyday. There is no washroom in this small isolation room...only a potty chair.

After bathing...I change his sheets daily. He sleeps on a very comfortable mattress. It's a RIK mattress used for patients in long-term...extremely heavy but very comfortable.

So far...no fever or infections and for that I'm thankful. The first 2 to 3 weeks are critical. They also give him a bit of chemo for Graft versus Host disease as well as anti-rejection drugs. They tell me Mr. T is a very good patient. He co-operates, does his blood sugars when asked and keeps his body as clean as possible, washing well after using the potty, using toothettes to clean his mouth as well as doing his mouth rinses many times a day to safeguard against mucositis... mouth sores.

He cannot use his own toothbrush or toothpaste here...as a toothbrush can cause his gums to bleed. Even toilet paper can be rough....I had to buy wipes at Shoppers Drug Mart....they are softer and will keep the area cleaner. All these routine chore's does help to pass the time.

His neutropolys haven't hit bottom yet...but they will.....and then it will take quite a long time for them to come up once again. One day at a time!

DAY PLUS ONE - JULY 18, 2008

2008-07-21T11:01:00.005-04:00

Today they started Mr. T on anti-rejection drugs like Methotrexate. As soon as he received it...he got sinus headache's, pain in his nose and eye's...which they gave him morphine for.

Although he is on tpn as well....he still has his appetite. He had waffle's today and Crystal Lite...otherwise he just wants to sleep. All these drugs and chemo cause him to be very tired. They monitor his sugar glucose every day as well as his weight. Since March 31st he has only lost 25 lbs which is very good. He still weighs 73k.

This is the vitamins he receives. It does look very yellow.

And this is the food. It looks like a thick white paste.

DAY ZERO- JULY 17, 2008

2008-07-19T09:44:00.007-04:00

It was a very busy day today. The nurse showed me how to wash up before I could enter the isolation room, clean nails, wash hands & put on a gown...each & everytime I walk in the room. I also had to wipe down all his games, play systems & personal things.

He received his bone marrow transplant at 2:40 p.m. I sat at Mr. T's bedside and we held hands and said a prayer...thanking the anonymous bone marrow donor for donating their marrow in the hopes that a child could live. Somewhere there is a donor with a sore hip...they are well aware that their bone marrow is going to a child somewhere. I would just like them to know how very thankful we are....without this marrow...Mr. T wouldn't have a chance. Now he has a very good chance....and for that I thank them from the bottom of my heart. I won't be able to know who that person is until Mr. T is cancer free....and that's 5 years. Then it will be up to them if they want to meet with Mr. T.

He received 5 bags of bone marrow.....875ml and it took exactly 4 hours. Along with that he received anti-rejection drugs. Everything went really well. The nurse monitored his blood pressure constantly as well as his vitals. When it was over...he ordered 9 toasts with peanut butter and milk....and I thought he wouldn't be able to eat? Every child is different...there are no 2 alike....and neither is the way they respond to a transplant.

BONE MARROW TRANSPLANT DAY! JULY 17, 2008 - DAY ZERO.

2008-07-17T14:26:00.000-04:00

THE TRANSPLANT
A day or two following the chemotherapy and/or radiation treatment, the transplant will occur. The bone marrow is infused into the patient intravenously in much the same way that any blood product is given. The transplant is not a surgical procedure. It takes place in the patient's room, not an operating room.
Patients are checked frequently for signs of fever, chills, hives and chest pains while the bone marrow is being infused. When the transplant is completed, the days and weeks of waiting begin.

ENGRAFTMENT
The two to four weeks immediately following transplant are the most critical. The high-dose chemotherapy and/or radiation given to the patient during conditioning will have destroyed the patient's bone marrow, crippling the body's "immune" or defense system. As the patient waits for the transplanted bone marrow to migrate to the cavities of the large bones, set up housekeeping or "engraft," and begin producing normal blood cells, he or she will be very susceptible to infection and excessive bleeding. Multiple antibiotics and blood transfusions will be administered to the patient to help prevent and fight infection. Transfusions of platelets will be given to prevent bleeding. Allogeneic patients will receive additional medications to prevent and control graft-versus-host disease.
Extraordinary precautions will be taken to minimize the patient's exposure to viruses and bacteria. Visitors and hospital personnel will wash their hands with antiseptic soap and, in some cases, wear protective gowns, gloves and/or masks while in the patient's room. Fresh fruits, vegetables, plants and cut flowers will be prohibited in the patient's room since they often carry fungi and bacteria that pose a risk of infection. When leaving the room, the patient may wear a mask, gown and gloves as a barrier against bacteria and virus, and as a reminder to others that he or she is susceptible to infection. Blood samples will be taken daily to determine whether or not engraftment has occurred and to monitor organ function. When the transplanted bone marrow finally engrafts and begins producing normal blood cells, the patient will gradually be taken off the antibiotics, and blood and platelet transfusions will generally no longer be required. once the bone marrow is producing a sufficient number of healthy red blood cells, white blood cells and platelets, the patient will be discharged from the hospital, provided no other complications have developed. BMT patients typically spend four to eight weeks in the hospital.
WHAT A PATIENT FEELS DURING THE TRANSPLANT
A bone marrow transplant is a physically, emotionally, and psychologically taxing procedure for both the patient and family. A patient needs and should seek as much help as possible to cope with the experience. "Toughing it out" on your own is not the smartest way to cope with the transplant experience.
The bone marrow transplant is a debilitating experience. Imagine the symptoms of a severe case of the flu - nausea, vomiting, fever, diarrhea, extreme weakness. Now imagine what it's like to cope with the symptoms not just for several days, but for several weeks. That approximates what a BMT patient experiences during hospitalization.

During this period the patient will feel very sick and weak. Walking, sitting up in bed for long periods of time, reading books, talking on the phone, visiting with friends or even watching TV may require more energy than the patient has to spare.
Complications can develop after a bone marrow transplant such as infection, bleeding, graft-versus-host disease, or liver disease, which can create additional discomfort. The pain, however, is usually controllable by medication. In addition, mouth sores can develop that make eating and swallowing uncomfortable. Temporary mental confusion sometimes occurs and can be quite frightening for the patient who may not realize it's only temporary. The medical staff will help the patient deal with these problems.
HANDLING EMOTIONAL STRESS
In addition to the physical discomfort associated with the transplant experiance there is emotional and psychological discomfort as well. Some patients find the emotional and psychological stress more problematic than the physical discomfort.
The psychological and emotional stress stems from several factors. First, patients undergoing transplants are already traumatized by the news that they have a life-threatening disease. While the transplant offers hope for their recovery, the prospect of undergoing a long, arduous medical procedure is still not pleasant and there's no guarantee of success.
Second, patients undergoing a transplant can feel quite isolated. The special precautions taken to guard against infection while the immune system is impaired can leave a patient feeling detached from the rest of the world and cut off from normal human contact. The patient is housed in a private room, sometimes with special air-filtering equipment to purify the air. The number of visitors is restricted and visitors are asked to wear gloves, masks and/or other protective clothing to inhibit the spread of bacteria and virus while visiting the patient. When the patient leaves the room, he or she may be required to wear a protective mask, gown and/or gloves as a barrier against infection. This feeling of isolation comes at the very time in a patient's life when familiar surroundings and close physical contact with family and friends are most needed.
'Helplessness" is also a common feeling among bone marrow transplant patients, which can breed further feelings of anger or resentment. For many, it's unnerveing to be totally dependent on strangers for survival, no matter how competent they may be. The fact that most patients are unfamiliar with the medical jargon used to describe the transplant procedure compounds the feeling of helplessness. Some also find it embarrassing to be dependent on strangers for help with basic daily functions such as using the washroom.

The long weeks of waiting for the transplanted marrow to engraft, for blood counts to return to safe levels, and for side effects to disappear increase the emotional trauma. Recovery can be like a roller coaster ride: one day a patient may feel much better, only to awake the next day feeling as sick as ever.
LEAVING THE HOSPITAL
After being discharged from the hospital, a patient continues recovery at home (or at lodging near the transplant center if the patient is from out of town) for two to four months. Though patients will be well enough to leave the hospital, their recovery will be far from over. For the first several weeks the patient may be too weak to do much more than sleep, sit up, and walk a bit around the house. Frequent visits to the hospital or associated clinic will be required to monitor the patient's progress, and to administer any medications and/or blood products needed. It can take six months or more from the day of transplant before a patient is ready to fully resume normal activities.
During this period, the patient's white blood cell counts are often too low to provide normal protection against the viruses and bacteria encountered in everyday life. Contact with the general public is therefore restricted. Crowded movie theaters, grocery stores, department stores, etc. are places recovering BMT patients avoid during their recuperation. Often patients will wear protective masks when venturing outside the home.
A patient will return to the hospital or clinic as an outpatient several times a week for monitoring, blood transfusions, and administration of other drugs as needed. Eventually, the patient becomes strong enough to resume a normal routine and to look forward to a productive, healthy life.
LIFE AFTER TRANSPLANT
It can take as long as a year for the new bone marrow to function normally. Patients are closely monitored during this time to identify any infections or complications that may develop.

Life after transplant can be both exhilarating and worrisome. On the one hand, it's exciting to be alive after being so close to death. Most patients find their quality of life improved after transplant.
Nonetheless, there is always the worry that relapse will occur. Furthermore, innocent statements or events can sometimes conjure up unpleasant memories of the transplant experience long after the patient has recovered. It can take a long time for the patient to come to grips with these difficulties.
IS IT WORTH IT?
Yes! For most patients contemplating a bone marrow transplant, the alternative is near-certain death. Despite the fact that the transplant can be a trying experience, most find that the pleasure that comes from being alive and healthy after the transplant is well worth the effort.

WEDNESDAY - JUNE 16, 2008

2008-07-16T21:55:00.004-04:00

Today Mr. T was sad. When I asked him if he was nervous about tomorrow and the transplant...he started to cry. I told him that it wouldn't hurt at all...it's just like getting blood or platelets through your line. That's not the scary part at all....the worst part is in the recovery...and the waiting to see if his body will accept the new bone marrow. I'm nervous as well...but I don't show it. I have complete faith in these doctors. They know what they're doing. They will move us by noon tomorrow to an isolation room...as it will take 4 to 5 hrs to give him the bone marrow transplant through his line.
I will post more information about the bone marrow transplant later. Right now I have some packing to do...and storing what I can in the locker they loaned me. We won't be able to take all our things into the isolation room.
I want to thank everyone who has been praying for Mr. T. We appreciate each and everyone of you who have given us strength & hope on his journey. Thank you.

TUESDAY - JUNE 15, 2008

2008-07-16T21:50:00.004-04:00

This is the last day for the chemo! For the past 2 days Mr. T has not eaten much, and he has lost weight as well. They make sure he urinates every 2 hours whether he wants to or not...as this chemo can cause a lot of harm to his kidneys. He is very cranky and short-tempered. When he's like that I go for a walk & have a coffee. I imagine I'd be very cranky as well if I had to go through just half of what he has been through in the past 4 months.

He is also very tired from the effects of chemo. Tomorrow is a day of rest....he won't get any medication or insulin.

SUNDAY - JULY 13, 2008

2008-07-15T22:27:00.004-04:00

Not a very good day. Mr. T did eat several times...but it didn't stay down for long. That is wicked stuff. He only gets the chemo once a day but it sure isn't pleasant. The steroid he is getting also causes mood swings...from angry to cranky and back. Hopefully this will be over soon.

SATURDAY - JULY 12, 2008 'NASTY CHEMO'

2008-07-15T22:10:00.004-04:00

Today Mr. T starts the nasty chemo called 'cyclophosphamide'. He will get this drug once a day for 4 days. There is nothing nice to say about this drug...it's a poison...but it's necessary. It's a very strong chemo drug...meant to destroy his immune system in preparation for his bone marrow transplant. Along with this drug...Mr. T will also take Dexamethasone which is a steroid.

Many people taking cyclophosphamide do not have serious side effects. Side-effects include chemotherapy-induced nausea and vomiting (CINV), bone marrow suppression, stomach ache, diarrhea, darkening of the skin/nails, alopecia (hair loss), changes in color and texture of the hair, and lethargy. Hemorrhagic cystitis is a frequent complication, but this is prevented by adequate fluid intake and Mesna (sodium 2-mercaptoethane sulfonate). Mesna is a sulfhydryl donor and binds acrolein.
Cyclophosphamide is itself carcinogenic, potentially causing transitional cell carcinoma of the bladder as a long-term complication. It can lower the body's ability to fight an infection. It can cause temporary or (rarely) permanent sterility. Although it is used to treat cancer, it may increase the risk of developing another form of cancer, sometimes months to years after treatment.
Other (serious) side effects include:
pink/bloody urine,
unusual decrease in the amount of urine,
mouth sores,
unusual tiredness or weakness,
joint pain,
easy bruising/bleeding,
stopping of menstrual periods,
existing wounds that are slow healing.

Today Mr. T ordered breakfast from the menu...then he had a small pepperoni pizza followed by a 6 inch meatball sub & later he had 2 hotdogs from the vendor. Right after he threw up everything! They gave him gravol...and then morphine.

Later he asked me to get him Timbits which he kept down. I had thought or believed that he would be a lot sicker...but so far...so good! Every kid is different. Some kids are very sick when they are on this drug...and others seem to sail through it. You just never know!

GIRL'S NIGHT OUT........

2008-07-15T18:13:00.007-04:00

Today my neice Jo & her daughter...came to see us. I met them at the Westin Hotel at 6:30. It's been 2 years since I saw them last. She had asked if this was a good time to visit and I told her that actually...this was the best time. Mr. T will get his bone marrow transplant on the 17th...where they will move us to an isolation room...and he won't be leaving that room till he is well....perhaps a month...maybe longer. That goes the same for me....I will be in isolation with him. If he is not well, I won't be leaving him alone. Right now he hasn't started the nasty chemo yet....he's eating & playing his games...so its the perfect time for company. Also when he enters that room...his immune system will be wiped clean from the chemo....and it won't be a good idea for me to have company & take a chance on bringing in any germs or colds.
I will have a room at the Westin Hotel till August 3rd....or until I can get a room at Ronald Mcdonald House up the street. There is a long waiting list at Ronald Mcdonald for a room there. They have 28 rooms and all of them are booked solid. Every day you have to call and let them know that you are still on the waiting list. If you don't call.....they will assume you made other arrangements.
You 'have' to have a room while you are here for the 3 months. After being here for a week...you do want to have a good nights sleep and shower...and you need a place to store your clothing and bathroom stuff.
Once Mr. T goes into an isolation room on the 17th...there will be no room for my stuff. That's one of the reasons why you need to have a room while you are here.
We slept at the Westin the 1st night we arrived in Toronto....and I stayed there with my neice & grand-neice when they arrived as well. Otherwise I stay with Mr. T in his room.

My neice took me to the 'Old Spaghetti Factory' to eat. We had wine and pasta...and I enjoyed every bit of it. It was so nice seeing her and her daughter again. I would post a pic...but I don't think she would appreciate it. We had a great time 'catching up'...a lot of laughs and girl talk. Later we walked for miles before calling it a night. At the Westin we ended up talking till we fell asleep.

Early Friday we had breakfast at Sick Kids...and visited Mr. T. My neice was allowed to visit him as I had her name on the visitor's list....but her daughter wasn't allowed on the unit. Mr. T was allowed to go and see his cousin though in the Parents Lounge at the end of the hall. They just don't want kids on the unit itself. He really enjoyed their visit...he didn't want the visit to end. My neice went and bought him a double whopper at Burger King....and we talked & laughed for awhile. Mr. T was in a great mood...and happy to get company.
Later when Mr. T was playing his games on the computer....we walked over to the Eaton Centre. My grand-neice is 13 (going on 16) so she had some serious shopping to do. She had saved up her baby-sitting money and needed summer clothes. Right across from the Eaton Center is a store called 'Forever 21' ...great clothes at cheap prices. The store was packed with teenage girls.
I bought a dress and a skirt for my granddaughter....and my grand-neice bought herself some very nice clothes. She has great taste for her age.
Later we stopped at Mr. Green Jeans to eat. I had to try the 'edamame' appetizer. Hot soybeans with seasalt...and then had a sirloin burger. Great food. I remember going there 16 yrs ago.
My neice gave me a $100 gift certificate to Chapters....and it didn't take me long to spend it. I bought 4 books of Jodi Picoult's that I haven't read yet. Once you read one of her books...you are hooked. I bought Mr. T some art books and my neice got him sketching pencils, sketch books and erasors at Currys art store on Yonge street. We must have walked for miles and miles that day...and we all have blisters to prove it.
We went back to Sick Kids and spent more time with Mr. T and gave him the gifts we bought. He likes to sketch his gaming hero's as well as Manga characters...and now is the time for it while he sits in isolation.
Later we went back to the Westin to drop off our things....and then decided to enjoy the night life. Again we walked for miles....and we ate at the International Food Festival & visited all the vendor booths there. Next time I'll wear my sneakers. Although it was quite late...there were crowds of people everywhere. Toronto is a tourist mecca.....there is so much going on all the time...we saw mime's, and street musicians all over...vendor's and food at every corner. I'm sure we burned off everything we ate and more.
But what a great time I had....I haven't had a girls night out in ages. I was sorry to see my neice & grandneice leave the next day...but I know I'll be seeing them again soon. My granddaughter will be going to stay with my neice Jo next weekend. She'll be staying with them for 6 weeks...going to daycamp with her cousin...and enjoying her summer. My neice will also bring the girls to see me & Mr. T every 2nd or 3rd week...as she only lives an hour away. There will be more 'Girl's nights out' coming up. I hear the Caribana is coming to town early August and I hope I get to see it....people come from all over the world for the Caribana parade.
Everything depends on the success of Mr. T's bone marrow transplant. Let's hope he sails smoothly through this ordeal with little or no complications. Then we'll have something to celebrate!

THURSDAY - JULY 10, 2008

2008-07-15T17:58:00.004-04:00

Mr. T feels much better today. He is getting used to the medication and so far...he's not sick. He still has pain in his jaw from the extraction and fillings last week...and he gets codeine for that.

Today he had a good day! The male nurse came and played Halo 3 with him several times today...so Mr. T is starting to enjoy himself.

When I saw he was busy with his game....I went to do the laundry. The interlink nurse at Cheo had arranged for the parents here to do their laundry at The Residence, which is a hotel across the street from Sick Kids. There is no laundry facility here at Sick Kids.

As long as you have a 'Parent Pass' from Sick Kids...they will let you do your laundry there. It is not very expensive. It costs $2.25 to wash and $1.75 to dry your clothes...and the dryer lasts an hr.

Mr. T is eating well and sleeping well. It's a good thing the machine's beep loud.....as I have to wake up and use the call-bell to let the nurse know. Mr. T can sleep through anything..but of course...he's a teenager now!

TUESDAY - JULY 8, 2008

2008-07-15T16:21:00.015-04:00

It's only our 3rd day here...and Mr. T is homesick. He has been away from home for more than 100 days now...and he doesn't like it here. He doesn't want to do anything but stay in bed.
Although he is on the Bone Marrow Unit...he can walk the halls...go to the playroom when its open or watch a movie. But he doesn't want to. He wants to stay in bed with the computer & watch television at the same time. He says the only good thing about this hospital is the food.

I think he's worried about the bone marrow transplant. I have assured him that everything will work out...but I know its normal to worry.

At Cheo...he didn't like the kid's menu...there weren't too many choices....but here at Sick Kids they have a great menu as well as restaurants to choose from. There are so many choices....it's hard to make up your mind.
While we are in Room 70 in the step-down room...he can eat anything he wants. Once he has his bone marrow on the 17th...he won't be able to. He will only eat what is on the menu. I won't be able to bring him in food and he won't be allowed take-out or hot-dogs because of bacteria.
I took picture's of the menu so you can see the choices he has. He can eat off this menu 'Only' from the 17th of July on....

Mr. T knows that he can't have restaurant food after the 17th so he is taking advantage of it. The first day he ordered tortilla's on the menu....and made his own tortilla's with scrambled egg and ham and bacon. He also had 'make your own taco's'. They send up whatever you order and you can make it yourself. They also have 'make your own pizza, and pasta. I will bring back a copy of this menu to Cheo...as they are looking into changing their menu.

Mr. T loves BurgerKing as well. I've been going down every day to get him a double whopper combo or a triple whopper. He may as well enjoy the food while he can.

Also I think it's a law in Toronto that once you visit you must have a hotdog or Italian Sausage at a vendor. They have these carts everywhere in Toronto. You can get a footlong hotdog for $2.50 and a sausage is $3.00.
Don't bother telling us what the ingredients are...they are great!

You can be sure when Mr. T is not having Whoppers...he's having hotdogs.

Toronto is definitely a 'foodies' heaven. Everywhere you look are restaurants & vendors. People walk the streets eating or drinking & talking on cell phones. This is fast-food paradise...and fitness centers everywhere as well. I think they're trying to tell us something. You want to eat - you have to pay the price!

MONDAY - JULY 7, 2008

2008-07-15T16:12:00.004-04:00

Today Mr. T starts treatment.

He was given Busulfan as well as Phenytoin.

Busulfan is a chemotherapy drug that is a cell cycle non-specific alkylating agent (slows the growth of cancer cells). More specifically it belongs to a subclass of alkylating agents known as alkyl sulfonates. Currently, its main uses are in bone marrow transplantation, especially in chronic myelogenous leukemia (CML), where it is used as a conditioning drug. Busulfan can control tumor burden but cannot prevent transformation or correct cytogenic abnormalities. Though not as common, it may also be used for Chronic Lymphocytic Leukemia (CLL).

He will be receiving Busulfan for 4 days. So far the medication is not making him sick.

Mr. T has a wonderful appetite....and although he is homesick & wants to go back to Cheo...he is still enjoying his X-box as well as the computer games., and of course the food.

WE MEET THE TEAM & GET INTERNET...

2008-07-15T12:42:00.008-04:00

Early Monday we met the team. Dr. G is the primary doctor on the bone marrow transplant team. I had already spoken to him at Cheo when I had a tele-conference meeting a few weeks ago....he inspires confidence & takes the time to answer any & all questions. Now I got to meet him in person as well as the other doctors on the team, and various other specialists from Endocrinology and Infectious diseases. It's difficult to remember everyone's name...but in time, I'm sure I will. We also met a few people from the Child care specialists who try and make a child's stay here at Sick Kids as stress-free as possible. One of them took Mr. T on a tour so he could see the Starlight Room on the 9th floor. This is a safe play area where kids can go on-line or play X-box with other kids or do 'Arts & Crafts'. He can also borrow movies and books as needed.

They also have 'music therapy' here. What is it? Music therapy is the use of music to promote, maintain & restore psychological, physical, emotional & spiritual health. It is a recognized professional discipline in over 70 countries worldwide. Ruth Roberts is an accredited music therapist at Sick Kids. She plays the guitar, piano & flute. Any child here can benefit from music therapy. Activities may include singing, songwriting, playing instruments, story-telling, improvising, listening, drawing or moving to music. During the session, a care-giver can take a much-needed break, go for a walk or do their laundry. As soon as Ruth heard that Mr. T is interested in guitar lessons...she loaned him a guitar to practice with. Mr. T is quite good so far. He did take guitar in Junior High for a few months and I can see he has natural talent for it.

When I told the Child Care Specialist that Mr. T enjoyed sketching...she brought him a sketch pad so he can draw while he's here. Everyone is bending backwards to make Mr. T's stay here as comfortable as possible. He keeps comparing Toronto Sick Kids to Cheo as that's the only hospital he's ever been at. Hopefully in a few days he will change his mind and see that this is a very nice hospital...only bigger.

At first it was difficult to get hi-speed internet...but it's very important to have it while you are here. While away from home...it is the cheapest way to keep in touch with loved one's and friends. Rogers was too expensive...they charged a set-up fee as well as a package deal, and so was Distributel. Opening a new account with Bell would be too expensive. I would have to open a new account as well as take a package deal.

Also Mr. T has a couple of computer games that he enjoys which cost me $60 for a year membership and from time to time we upgrade his game with new characters or weapons.

We finally found a cheaper alternative. Toronto Hydro has a site called onezone.ca that charges $30 a month for high-speed, with no set-up fee or contract. Yippee!

So far so good! One day at a time!

MONDAY - JULY 7, 2008 - ROOM WITH A VIEW...

2008-07-15T12:23:00.007-04:00

This is our room at Toronto Sick Kids. As you can see it's quite a big room. Mr. T has a television set, X-box and DVD player as well as a ton of the latest games., and of course his laptop. Candlelighter's is an organization in Ottawa that helps families with kids that have cancer. They have loaned Mr. T a Dell laptop while he is in treatment. He can use the laptop till he is able to attend school full-time. He loves it. Right now he spends more time on his laptop than gaming. He talks to friends & family on MSN as well as play interactive games on-line.

And the cot I sleep on is very comfortable compared to the bed-chair at Cheo. It goes to prove that you can sleep just about anywhere if you're really tired.

On the left is the view from Cheo when we were on 4North for many months. We had a view of the rooftops!!! Finally...(at right) this is the view from Toronto Sick kids on the 8th floor. I can look out for hours just watching the traffic and people coming & going. There are many hospitals in this area. The Toronto General is right across and just down the street is the Mount Sinai Hospital.

JULY 6, 2008 - TORONTO SICK KIDS.

2008-07-15T09:56:00.004-04:00

Toronto Sick Kids is a huge hospital compared to Cheo. The grandkids were amazed at the sheer size of it. On the main floor they have a large cafeteria, The Terrace... where you can choose to eat from many different restaurants. They also have Starbucks, Tim Horton's, BurgerKing & a soup & sandwich restaurant.
The elevators in the Atrium are made of glass so as you go up to different levels you can see below you. It's modern, kid-friendly and very clean.
We decided to have breakfast before admitting Mr. T.
Mr. T refused to eat. He decided at first glance that he was having none of this hospital. We begged & pleaded & nagged....but nothing doing. I think Mr. T was afraid...and I don't blame him. The size alone of Sick Kids can be intimidating for someone coming from a small hospital. Finally we let him sit at the terrace, while we went to get breakfast. When we got back with our food...Mr. T was just sitting there looking so alone and sad. He wanted to go back to Cheo.
His Uncle assured him that this was just another step on his journey to good health. He explained to him that this transplant was necessary for Mr. T to have in order for him to live a long, healthy life.
I told my grandson...that I was well aware of his feelings of sadness & anger...and that he had every right to feel that way...but we were a team...and the plan was to get Mr. T well and get him home....and we needed him as the primary team member to co-operate & help us get the plan on the road. I told him this could be a wonderful experience or a dreadful one...depending on our attitude. Is our glass half-empty or half-full? It didn't take long for Mr. T to decide. He was back in good spirits in no time at all.
As soon as we got up to 8B - the Bone Marrow Unit....they were expecting us. Right away they showed us to our room. And we're in Room 70! At Cheo...we had Room 7...and at Ronald Mcdonald House we had Room 7. It seems the number 7 keeps coming up! They call this a 'step-down' room. We will be in this room till he has the bone marrow transplant on July 17th.
I am able to sleep in this room. They have a steel built-in cot with a mattress for me to sleep on...and drawers underneath for storage. He also has a bathroom which I can't use...because when you are receiving chemo....your urine is very strong...and it could be dangerous to use the same facilities. There is a shower & bathroom in the hallway for parents & caregivers to use.
My son & his wife are allowed on the Unit...but sadly...Mr. T's sister wasn't. She had to wait outside the Unit while T's uncle set up his X-box and games. Only people on the visiting list are allowed to enter the unit...no children under 18. They feel it might compromise the health of the children here. After all Mr. T has been through....we wouldn't want to endanger his health at this point. We're on our way....to new beginnings!

JULY 5, 2008 - TORONTO

2008-07-15T09:39:00.003-04:00

I woke up at 6 a.m., to clean our room at Ronald Mcdonald House and pack the rest of our things. Again we had to say good-bye to the wonderful parents I had spent a lot of time with at RMH and the friendly staff here all wishing us success in Toronto.
Mr. T's uncle & aunt came to pick us up at 11 a.m with Mr. T's sister of course. I wanted his sister to come along with us so she could see where we would be living for the next 3 months.
We managed to stuff 3 months of living in his trunk & of course I had to leave some books behind. It was a gorgeous day. I sat in back with my 2 grandkids and we enjoyed the long drive to Toronto. Half-way there we stopped at Denny's to eat & use the facilities. After 3 months at Cheo...it was so nice to see people & traffic everywhere.
Because we stopped several times along the way...we arrived about 7 p.m. and spent the night at the Westin Harbourfront Hotel in Toronto. What a beautiful hotel...right on the waterfront.
We had pizza and later took a walk along the Queen's Quay and watched the boats come and go....and later had ice cream cones. Along the boardwalk we saw mime's and vendors & musicians entertaining the crowds of people. The grandkids enjoyed it immensely as they never really spent much time in a city.
Everybody was hot & tired...after we took our shower....it didn't take us long to fall asleep in an air-conditioned hotel room. Tomorrow we get to see Toronto Sick Kids for the 1st time.

JULY 4, 2008 - LAST DAY AT CHEO.

2008-07-15T09:19:00.003-04:00

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

2008-07-03T19:30:00.004-04:00

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

2008-07-03T08:53:00.004-04:00

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

2008-07-02T19:33:00.005-04:00

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

2008-07-02T19:23:00.003-04:00

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

2008-07-02T14:03:00.006-04:00

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

2008-07-01T19:03:00.003-04:00

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.

WEDNESDAY, JUNE 25, 2008

2008-06-25T17:03:00.004-04:00

Another good day! The neutro-polys are at 0.03 today....so they are coming up....slow but sure!

Mr. T was very happy today. His best friend Jacob came to see him. Wednesday morning's they have a parent-support group here where you can have coffee, muffins or fruit and get to know the other parents and just relax.

So I left the boys to their games and relaxed with the other parents. There is much to do in preparation for Toronto...so its nice to take a break and talk to adults for a change., compare notes, share ideas & support each other. I have learned more from the other parents than I have from the medical staff!

His counts for today are:

Hemoglobin is 98*

Platelets are 35*

Neutro-polys are 0.03*

TUESDAY, JUNE 24, 2008

2008-06-24T19:18:00.002-04:00

Today has been a good day! Finally we have one little neutro-poly. It's been such a long wait....but this is the start! Hopefully they will zoom up so we can manage to get home for a few days!

Today is our 86th day here...and Mr. T is losing patience. He has been very cranky lately. Teens like to have some control...so when the drs tell him to do something, or the dietician suggests something....he refuses. And if I agree with them....well he thinks I'm on their side. It's very difficult to be here for a long time and in isolation...so I understand well how he feels.

It seems all the parents of teens have been having a hard time with their kids. And of course when the kids don't feel well...and are good and tired of being poked and prodded constantly...well who do you think gets the worst of it??

I've seen parents cry in the hallway.....after being told by their child to 'get lost' or 'I don't need you'...or 'I hate you'......it can be very difficult.

When Mr. T is having a bad day.......I tell him I'm leaving and I'll be back later......this helps to diffuse the situation. He has time to calm down and think and I will go over to Ronald Mcdonald house and use the treadmill or read.

When I come back...Mr. T apologizes...asks for a hug......and everything is fine. We all need to vent...and he has every right to be angry or sad or lonely. But he has no right to take it out on me or the nurses.

You really can't take it personal...if you did...you'd be a basket case. We all have bad days and moreso if you're in the hospital.

His glucose levels are under control. We manage to keep them between 5 & 7 and he still manages to have pizza & low-fat Pringles chips.

Hemoglobin is 94*

Platelets is 37*

Neutro Polys are 0.01* Yahoo!

STANLEY CUP....

2008-06-20T16:52:00.008-04:00

Ottawa's greatest treasure....the Stanley Cup came to visit the children at Cheo Hospital and Ronald Mcdonald house today. The kids who were in isolation....like Mr. T.....got to hold the cup in their room.

It was very impressive. It is 116 years old...it's almost 3 feet tall and weighs 35 lbs.

You can touch it or kiss it...but you can't carry it! (in case you drop it).

Even the handler...the guy who brings the cup to the hospital, schools and centers wears white gloves. The cup is stored in a special travelling case on wheels to protect it. Everybody was excited to see it...the kids, the nurses, the parents and staff. Canadians love their hockey! Nothing compares to Hockey Night in Canada!

The Stanley Cup (French: La Coupe Stanley) is an ice hockey club championship trophy, awarded annually to the National Hockey League (NHL) playoffs champion. It is commonly referred to as The Cup, The Holy Grail, or facetiously (chiefly by sportswriters) as Lord Stanley's Mug.[1] The Stanley Cup is surrounded by numerous legends and traditions, the oldest of which is the celebratory drinking of champagne out of the cup by the winning team. Unlike the trophies awarded by the other three major professional sports leagues of North America, a new Stanley Cup is not made each year; Cup winners keep it until a new champion is crowned. It is the only trophy in professional sports that has the name of the winning players, coaches, management, and club staff engraved on it.[2] The original bowl was made of silver and has a dimension of 18.5 centimeters (7.28 inches) in height and 29 centimeters (11.42 inches) in diameter. The current Stanley Cup is made of silver and nickel alloy. Today, it has a height of 89.54 centimeters (35.25 inches) and weighs 15.5 kilograms (34.5 lb).[3]
The Stanley Cup is the oldest professional sports trophy in North America.

FRIDAY, JUNE 20, 2008

2008-06-20T12:01:00.005-04:00

82 DAYS and his neutro-polys haven't come up yet! Mr. T has been going through many tests getting ready for transplant. This morning he had a GFR which is Glomerular Filtration Rate which is done to see if his kidneys are functioning well.

This afternoon he also had a PFT which is a Pulmonary Function Test done to check his lungs.

He will also get platelets as well as he is very low. So far his mood and attitude is very good. The doctors told me that if his neutro-polys don't come up....we may not get to go home. We may go straight to Toronto....but I haven't told him yet. He would be really disappointed. They can't put off the date of the bone marrow transplant....well they could if they had to...but not for a visit home. There is so much planning involved in setting up a date for a transplant.

Today his counts are:

Hemoglobin is 90*

Platelets are 13*

Neutro-polys are 0.00*

WEDNESDAY, JUNE 18, 2008

2008-06-18T17:05:00.004-04:00

We are patiently waiting! Today is our 80th day here! They tell me that each time Mr. T has chemo it takes longer for his neutro-polys to come up again. Every day I ask for his counts and hope that today is the day! The nurses tell us that we have to do a 'neutro-poly dance' in order for them to come up. We are singing and dancing here in the hope of jogging those stubborn polys! We are more than ready to move on & out!

The minute his neutro-polys are 0.2 Mr. T can get the port out and the broviac in......then he will get whatever dental care he needs. Once he gets the bone marrow transplant...he can't get any dental care for a year...so we need to take care of that here. Then we can go across the street to Ronald Mcdonald house till his counts go up to 0.5............and then HOME SWEET HOME! for a little break till our admitting date in Toronto....which was changed to July 6th.

Today we went for an ecocardiogram just to check that everything is fine for the broviac implant. It's just like an ultra-sound of the heart. You can actually see the blood flushing the heart....like a heart on fire. It's really neat!

Today his counts are:

Hemoglobin is 85*

Platelets are 29*

Neutro-polys are 0.00*

Mr. T's appetite is back in full force. I'm really happy about that. I've been told he won't be eating much in Toronto....so I'm glad he's building up his strength now.

SATURDAY, JUNE 10, 2008

2008-06-14T10:50:00.003-04:00

Mr. T. is doing much better. He's been eating for the past few days! He's gained 1 lb..and his appetite is coming back. He is now eating cereal for breakfast with fruit....but I have to order his lunch and supper. He refuses to eat the hospital food or freezer meals.

Last night his sister came for the weekend. He was happy to see her....he gave her a stuffed white shi-tzu for graduation (that he received as a gift from the playroom)...she has wanted a real one for the longest time...but that will have to wait a year after his Bone Marrow Transplant. She loves it...she slept with it last night and today she's carrying it around with her. When Mr. T went to the computer she rushed and got clean sheets, pillow slips and made his bed fresh for him. Right now she is in the playroom, working on some project for her brother. You can see she misses him terribly.

It's too bad Mr. T can't get a day pass! Today from 3 p.m. to 7 p.m....the Thrillusionists (a magic show) will put on a magic show for the families at Ronald Mcdonald house....as well, Jason Spezza of the Ottawa Senators will be there.........and 3 chefs from Boston Pizza will prepare the snacks and the supper for all the residents. Yes I will take pics....and get an autograph from Jason Spezza for T. & for other kids on the unit who are neutro-penic....and I'll bring him back some pizza as well.

We are very patiently waiting for his counts to come up. The doctor told us anyday now!

Mr. T is usually always in a good mood. But Thursday he was feeling really down. Nothing I could say or do could change that! The nurses even tried to boost his spirits but he was having none of it.

Then....one of his buddies....Brianna called him and they talked for awhile and suddenly he was back to his old self again. It was great hearing him laugh about his friends latest exploits. I know it involved spitballs!

As soon as his counts come up a bit...I am trying to get other boys his age come into his room to play games...as he has 2 controller's...and I'll tactfully disappear.

Kids.....sorry..'Teens' need to be alone (hang or is it chill) with their peers once in awhile to feel normal without their Nanny around.

I'm going to be multi-lingual when I finally get home. I'm learning computer jargon, medical jargon, & teen talk. So far...teen talk is the toughest....as it changes 'radically dude'!

FINALLY......

2008-06-12T10:55:00.003-04:00

For the past 2 days...Mr. T has been eating! 2 Boosts in the morning with a boiled egg. Lunch is jello...another Boost. And each night I have been ordering chicken from St. Huberts BBQ. He has 1/4 chicken breast with fries....another Boost in the evening and a handful of almonds.

When we were admitted he was 179 lbs...now he is 162. It's good to lose weight but not the way he's been doing it. They need to build him up for the ordeal ahead. There is nothing like a tube down your nose to make you see the light. I understand how difficult it must be to eat when you have no hunger whatsoever....but slowly & surely his appetite will come back.

His dietician brought him Carnation Strawberry in a can...and he seems to prefer those to Boost....but she wants him to eat protein as well as carbs to get enough calories in him. I don't care if it maxes me out....I'll get him whatever he wants to eat...as much as he wants. Right now they are not too concerned with his sugars...they just want to see him eat.....but of course I can't buy him chocolate bars, icecream or bags of candy.

We are still waiting for his counts to come up in order for him to get his broviac in....dental work done....and hopefully get home for a break. It's so nice to see him eating again. At least he is making an effort.

Today his counts are:

Hemoglobin is 105*

Platelets are 17* (he's been getting platelets every day)

Neutro-polys are still 0.00*

UP YOUR NOSE.........

2008-06-09T18:06:00.002-04:00

For several days now...Mr. T has made a light-hearted attempt to drink Boost. The 1st day he had 2 bottles which equal to 500 calories and the next day he had only one. Nobody can live on 250 calories. They say a boy his age needs at least 2500 calories. They are trying to build him up for the bone marrow transplant coming up.

After 15 days of fasting...your brain no longer gets the message that you're hungry....you just don't want to eat or drink.

So after many warnings...the Oncology Team and the dietician ordered that the tube be inserted.

To say Mr. T. put up a fight is putting it mildly. He let them know 'loud and clear' that they should all go work in a prison....seeing that they were so good at torturing people....and he was having none of it.

They all took turns pleading their case...the doctor, the nurses., and the dietician. They explained that they didn't want to do this...but they had to...that it was imperative to build up his strength for the bone marrow transplant.

After much pleading....okay bribery....(I promised him a game)...assuring him that the tube was just a temporary measure till his appetite started kicking in....then he agreed!

Of course he had to let them all know that I told him horror stories about the feeding tube...and I admit...I did! I'm ashamed of myself!

After several weeks of begging him to eat...I told him in no uncertain terms....."Listen..you have a small nose...and they have a big hose! You know the saying...up your nose with a rubber hose? Well where do you think they got that saying?"

Yes...I told him that.....in order to get him to eat...and instead it back-fired on me.

I told him I exaggerated as usual...and the nurse brought the tube in and showed him how thin it was...and how exactly it would be inserted...and this would take the stress off of him. We were game to go!

Tube feeding provides nutrition to patients who are unable or unwilling to eat food. Conditions where tube feeding is considered include protein-energy malnutrition, liver or kidney failure, coma, or in patients who cannot chew or swallow (dysphagia) due to stroke, brain tumor, or head injury. Patients who are receiving radiation therapy or chemotherapy treatments for cancer may also be candidates for tube feedings.

I didn't know till later...that the nurses had picked a straw to see who would do it...nobody likes to insert a tube in a child.

The 1st attempt wasn't good. Mr. T was calm...I was ready with the water and straw...as she inserted the tube....he was to drink and swallow enabling the tube to go down his throat to his stomach.

Then the volatile puking started...and with vomit down his chest...on his p.j.'s..and all over the sheets...he continued to sip and swallow...and the nurse continued trying to insert the tube....and still the 'spewing' didn't stop. When the nurse saw this wasn't working...she pulled it out.

This is not what they intended. He can't afford to be throwing up like that. Some kids can accept the tube well....and some can't.

Once the nurse told the doctor what happened....they all came in to apologize to Mr. T....they all felt so bad that he had such a hard time. It was not their intention to cause him pain.

While Mr. T washed and changed into fresh clothes....I changed his bedding.

Finally his dietician came in.......and he promised her that tomorrow he would do his best to start eating properly.

She would like to see him have at least 3 cans of Boost...interspersed with protein or healthy snacks and I'm to write down everything he eats and drinks.

A feeding tube can be a sure-fire incentive to eat. Let's see how he does tomorrow!

Oh...by the way....he did not forget that I promised him a game! Thank Goodness he only wants 'Saints Row' for the xbox 360 which is only $20. at Toys R Us! Yes...I will get it for him....I feel guilty enough scaring him with rubber hose stories! How mature is that??

SUNDAY, JUNE 8, 2008

2008-06-08T15:45:00.004-04:00

Some good news! His leg is getting better so there will be no need for surgery. They continue to keep a close eye on it. They have his blood pressure stable. The doctors don't know why Mr. T lost 6 lbs in one day...they say there is nothing wrong with his kidneys...but they will weigh him every day.

Today he refuses the Boost...he will not drink or eat....so I'm sure by tomorrow they will put in a tube...he's got to get his nutrients in somehow.

No amount of begging, bribing or threatening helps. Extremely frustrating.

He continues to get platelets every day as his are very low.

I suppose with all the medications in his system....he's just not hungry....and he continues to throw up, so they give him gravol.

His counts today are:

Hemoglobin is 84*

Platelets are 24*

Neutro-polys are 0.00*

I'm hoping tomorrow will be a better day for Mr. T.

FRIDAY, JUNE 6, 2008

2008-06-06T19:50:00.008-04:00

I really don't know what to think anymore. Mr. T has always bounced back from his chemo treatments but not this time. It's been a constant struggle trying to get him to eat. Finally one of the mothers here told me to try Boost drinks. As soon as the Dr. came with the team...I suggested it...and they think its a great idea. (Why haven't they suggested this?) This way he would get all his nutrients in a drink...and it comes in 3 flavors. So at lunchtime he drank at least half of one. I'm very shocked and so is the staff. They all know that Mr. T can out eat anyone. He's a veritable eating machine...so are most boys his age. But not this time...he is just not interested in food at all. They stopped the Nabilone..but that didn't help.

Here he is going down for an MRI with his favorite afghan.

Since Monday he was complaining about his left leg. Since he got the last chemo treatment in the big muscle of his thigh...(Asperiginase) he's been getting morphine for the pain. Wednesday his leg was red and inflamed a bit....so his Dr. had an X-ray done....it seemed to be worse on Thursday...so we went for an ultra-sound. The results showed an infection so an antibiotic was ordered.

This morning I noticed his leg seemed to be redder and very hot to the touch. As soon as I informed the Dr...they sent us for an MRI.

When we got back to our room....all hell broke loose. His oncologist was here...then we had a visit from the infectious disease doctors. It seems there is an infection in the muscle under the skin....and they were very worried about it. They are afraid if it spreads they will have to do surgery! They really scared me when they used the term...'flesh-eating disease'!

The surgeon then came and checked his leg...and circled it with ink...ordered a different antibiotic and told me we will keep a constant watch on his leg. If the infection spreads or the redness...he will be rushed to surgery so they can cut open his leg and clean the infection. This flesh-eating disease could be caused by a low immune system as well as chemo drugs. The surgeon also said no food or drink because he may go to surgery! (He's fine with that!)

The first circle was drawn on Wednesday....the outer circle was drawn today. I sure hope it doesn't spread. He doesn't need anymore complications.

On top of that when he fell asleep his blood pressure went from 120 to 170/76. Whoa there!

Right away the nurse gave him Fenofibrate and his b.p. came down.

Then we got him up in a wheelchair...his leg is too sore to walk on...and weighed him.

Since yesterday he lost 6 lbs! That's impossible!

He hasn't been eating or drinking. This is a real cause for concern!

In the past...when he took Vancomycin it had caused damage to his liver and kidneys and he needed dialysis & a catheter!

He has been urinating a lot....so thats another thing we need to watch closely! How can anyone lose 6 lbs in one day?? No wonder he doesn't want to eat or play his games.

Also in September...they were supposed to put a broviac in his chest. Someone got confused and they put in a port instead. I remember when he came out of the operating room....I remarked....where's the broviac? and the Dr. after looking at the order had said...'Oops'. Well...what was done was done! Mistakes do happen!
Now they tell me that when his neutro-polys are up to 0.20 he has to get the port out and the broviac put in. The doctor at Toronto Sick Kids insists that they need a broviac in order to give him the medication he will need there. So...there will be no swimming whenever we get to go home.

This is a port. Once it is in your chest you don't see it at all. The nurses have to feel with their fingers where it is in order to access it. Most kids don't like it...as it sometimes moves and is on a slant...so it may take 3 or 4 tries before a nurse gets the needle in....and much screaming on the patients part. You can go swimming with this port or take a shower.

This is a broviac. It has 2 lines that come out of your chest. This is easier to access or to give chemotherapy or any medication. You can't take a shower or swim with a broviac. Kids like it because it is easily accessed without causing any pain to the patient.

Someone sent me an email last week wondering what do the parents 'do' here....they must be awfully bored??

Let me assure you.....the parents are never bored! We are home-sick, heart-sick, sad, lonely, confused, frustrated, angry, hopeful, fearful.....one day we're up and the next day we're down. We support each other, we share in each others hopes, we encourage each other, babysit each other's kids to let someone go for a coffee or cigarette or maybe lunch, share our pain with each other and our successes.......but No....we're never bored!

We wait on doctors, pharmacists, dieticians, etc...and rush our kids to dental, x-ray, ultra-sound, radiation, MRI's. We try and make sense of the mounds of paperwork we receive. We keep notes on our childs health status from day to day....their b.p., blood counts,sugars and try to keep our children fed and comfortable. We order their food and make their beds...we run to get them treats or movies they want from the playroom. We play games with our children, try to keep them entertained and happy and try to stay in a positive frame of mind regardless of how we really feel.

We eat when we can and sleep when we can.....but No...we are never bored!

WEDNESDAY, JUNE 4, 2008.

2008-06-04T17:12:00.004-04:00

I have tried everything under the sun to get Mr. T to eat...but he has no appetite whatsoever. This is very frustrating. We have never had this problem before. You would think that the Nabilone would give him the munchies. His Dr tells him that if she doesn't see him start to eat properly...she has no choice but to feed him by tube. So far we got him to eat cereal once a day...but thats not enough.

Because of the chemo...everything has a metallic taste and he refuses to eat.

I ran to get him a simple egg-salad sandwich...and he said it was disgusting.

Then he agreed to eat peanut butter on toast......the kitchen said because of allergies...no peanut butter. The nurse ran to see if there was any in the nurse's kitchen....but no.

I took the bus to the mall and got him a jar....I was desperate for him to eat some protein. When I got back and spread it on his toast....he said it wasn't peanut butter and refused to eat it. Then he agreed to waffles & syrup....same thing, it went in the garbage.

I even bought his favorite....meatball sub and pizza.....in the garbage!

Finally I went and bought him 2 Bionical kits.......and told him he couldn't have them till he ate!

These are kits of ugly creatures you put together.....and hospital gift stores charge an arm and a leg! But it worked!

He then agreed to have chocolate milk, blueberry muffin, pancakes and a rice krispie square. The doctors tell us this is not enough...he needs real food and protein in order to build himself up for the bone marrow transplant that comes next month. I understand its difficult to eat when you don't feel good...but he has to...or he will be force-fed, and thats not good. They also won't let us go home for a break unless he's eating normally.

So, it's a constant battle of wills. At the same time...they don't want him eating junk food because of his sugars & triglycerides.

I have been begging, whining, pleading, bribing, arguing, demanding, reasoning.........did I say begging???? I can't afford the bribery every day either.

It really is a battle of wills. I have told him repeatedly that we will never go home unless he starts eating to build himself up. They will not let him go home with a tube down his throat....and they will have to do this to make sure he is getting the nutrients he needs!

Everybody tells me that Nabilone (medecinal marijuana) gives you the munchies....well it hasn't worked for him. Maybe we should give him the real thing....and give me the Nabilone!

Okay...I'll stop whining now!

66 days (but who's counting)

Hemoglobin is 74*

Platelets are 36*

Neutro-Polys are 0.01

(they have to hit 0.00 and then they will start to go up)

SUNDAY JUNE 1, 2008

2008-06-01T07:58:00.004-04:00

The Nabilone is working! No more puking...but Mr. T hasn't started eating yet. This is his 10th day of fasting.

Yesterday he got his last chemo treatment....Asperaginase in the large muscle of his leg. He has been having fevers though..up to 40.7 which they have been treating with Tylenol. He is so medicated that all he does is sleep....while I do crosswords or read and try to make sure he's comfortable. Yesterday he received 750 ml of blood and more platelets.

Today he received more platelets and they started him on Voriconazole which is an anti-fungal drug.

Finally tonight he had a small box of Fruit Loops......I had to beg him to eat, as I know darn well that they will put a tube down his nose if he doesn't. Hopefully he can keep that down.

He is finally watching a litte bit of television which is a big improvement compared to the past week.

His counts haven't fully dropped yet....but they will.

Today his counts are:

Hemoglobin is 76*

Platelets are 17*

Neutro-polys are 0.46*

And he's starting to eat. That's a good sign!

FRIDAY MAY 30, 2008

2008-05-30T19:46:00.004-04:00

Today wasn't any better! Mr. T woke up with a fever....pain in his leg...nausea and so the day went! He slept all day long hooked up to one drug or another.

The nurse had to wake him up to take his oral meds and do his stats but thats about it.

He wouldn't wake up or watch television or play games. He's just too sick.

Tonight they are trying another medication called Nabilone.

'Nabilone is chemically related to marijuana and belongs to the class of medications called cannabinoids. It is used to treat severe nausea & vomiting in people undergoing cancer chemotherapy. It works in centers of the brain to reduce nausea & cause sedation. Maybe it will get him to eat tomorrow. I understand it is also a big help to anorexics, Aids patients and other delibitating diseases.

Actually its better known as 'medical marijuana'. If it relieves his nausea and stimulates his appetite....I'm in favor of it!

I can't even eat in front of him......just the smell of food will make him puke...so I run to eat lunch for 5 minutes and hurry back....so when the machines beep I can buzz the nurses as he doesn't hear the machines. He's knocked out on Benadryl & Morphine & so many other pills.

He also had platelets today because his platelets are low and yesterday he had a bad nosebleed.

Hopefully we both can get some rest tonight.

THURSDAY....MAY 29, 2008

2008-05-29T09:22:00.003-04:00

Today will be exactly a week since Mr. T stopped eating. He had a boiled egg last Thursday morning. I've been trying to get him to eat but to no avail. I am not allowed to use the 'f' word in front of him...and I mean 'Food'.
The Drs want to see him start eating but he's just too sick to even try. He continues to need gravol and ondanestron for his stomach....and doesn't even want to play x-box or watch television.
Today they are starting his last chemo treatment and I'm excited about that. It will start today and end on Saturday....then we wait for his counts to come up.

When someone gets chemo it wipes out all your counts....everything will hit bottom....and then you wait for the counts to come up again!

Right now...his counts are:
Hemoglobin is 86*
Platelets are 57*
Neutro-polys are 0.46*

But his neutro-polys will take a dive after this chemo treatment.....go right down to 0.00 and very slowly they are expected to come up again.

They tell us that when his neutro-polys are 0.20.......we can stay at Ronald Mcdonald House.....and go back and forth for blood work......and when they hit 0.50........WE CAN GO HOME!!
Well....just for a little break before we head to Toronto for 7 to 8 weeks.
We are really looking forward to going home even if its only for 4 or 5 days....that would be Heaven!
Today is our 60th day here!
Mr. T is well aware that even if he will get to go home for a break, he can't go anywhere...and we have to limit the number of people that come over.
But he can have his best friends over....he can swim with them or game with them...have a few of his friends sleep-over (if they are not sick & if they don't have anyone sick at home) and have BBQ's every day.
This is all providing that his counts come up and there are no complications along the way!

The hospital gave us 'tentative' dates for Toronto. Admission will be July 7th....and Bone Marrow Transplant will be July 11th...providing everything goes well. Now...if we can just get through this last chemo session. I'm hoping it will go better than last weekend!

HAPPY BIRTHDAY SWEET THIRTEEN!!

2008-05-25T10:18:00.005-04:00

It's been a horrible night....fevers, diarrhea, puking and hallucinating! Not a very great way to start your birthday! The nurses were really sweet...they all marched in this morning at 7....singing 'Happy Birthday' to Mr. T...they did get a smile out of him with their carrying on and dancing around the room!

There will be no birthday cake...he doesn't want one..and I can't even mention the word 'food'...it seems to trigger his stomach. How much bile can a person actually throw up?

He woke up with fever but by noon-time his fever broke and he was able to sit up when his Uncle came in...and open his presents!

I was hoping to take some pics of him...but when he spotted the camera....he got upset with me...and warned me...'NO PICS NANNY'!...so I had to respect his wishes.

When a teenager is sick...they sure don't want you taking their picture and posting it...and I can understand that!

His Uncle gave him a 'Grand Theft Auto' lock box with key...and the game ProStreet Need for Speed for the X-box....and a mini mouse for his laptop which is really cute. It changes colors and has a retractable cord.

I got him the Ironman game for the X-box.

Also...his Uncle had gone shopping a few days prior with a lovely lady from the Wish Foundation...and they picked him out a Shamano Fishing Rod (most expensive in the store) as well as a Shamano Reel...a huge tackle box with the latest lure's, and a large net and also a special bag to pack his lunch when he goes fishing....and 2 really expensive sleeping bags for camping out.

All of this stuff was bought at Le Baron which is one of the biggest 'Hunting & Fishing' Sports shops in Ottawa.

And to top it all off.......he received $550 dollars of gift certificates to be spent on anything he wants at Le Baron whenever he's well enough to go shopping with his Uncle. Was he ever impressed! He was grinning from ear to ear....just thinking of all the stuff he could get for that amount!

Ronald Mcdonald house gave Mr. T a '6 in 1' game set...so we can play Backgammon or Checkers here at the hospital. Mr. T knows that when we finally get home...we will celebrate his birthday with a BBQ and have all his friends over.

Yesterday when I was in the middle of this post.....we lost the internet for the rest of the day...so I'm posting late.

Today is Tuesday and Mr. T has not eaten or drank anything since last Thursday. I'm hoping his appetite comes back soon.

I hope he never goes through another weekend like the last one. I slept sitting up in the chair (I used to think that was impossible) because I was afraid with high fevers and hallucinating that he would rip his lines out.

I'm really glad to see he's feeling much better.

IT JUST KEEPS GETTING WORSE....

2008-05-24T18:47:00.004-04:00

They gave Mr. T his last chemo for this week around 11 a.m....and right away he got much worse. He started getting chest pain...his oxygen dropped so he needed an oxygen mask, temperature skyrocketed to 40.9 and his blood pressure dropped really low. Right away they moved out the other child in his room and isolated him. The SPOT team rushed in....and started doing tests on him....checking his heart and oxygen and doing more culture's.

For 2 hours we had a team in the room....checking everything and finally they did x-rays of his chest and stomach. All they can give him for the fever is Tylenol but only every 4 hours. Now he has diarrhea as well.

Because he hasn't eaten in more than 24 hrs...he's puking up bile. They sent his culture's to the lab...then they gave him blood transfusions as his hemoglobin is too low.

The tylenol helps a little....his temperature goes down to 39.7 and within the hour its back up to 40....and we have to wait for 4 hrs for more Tylenol.

He has so many bags attached to him...he's getting bolus's..and antibiotics like Vancomycin which they have to watch carefully so that he doesn't get renal failure....oh boy...he is in such misery.

He'll have the chills and minutes later..he'll be burning up. I've never seen his temperature go up to 40.9...ever. This is a 1st.

They say the fevers are the cause of the chemo....the 'cytarabine'...but I'm thinking that maybe his counts were too low to start the 2nd cycle of chemo...but what do I know?

They are giving him everything they can for the nausea....Gravol...they're pushing it into his line...they give him Benadryl and Odanestron....and still, nothing seems to help.

The SPOT team will be back later to check on him.

He was just raving while he was wide awake....talking about dangerous snakes, duels and asking for ketchup. I know that's because of the fevers........and now they tell me that it takes a couple of DAYS for the antibiotics to work! I was hoping the fevers would break real soon so we all could get some sleep!

Mr. T asked me if he was going to die.......and I told him....'No...don't plan on it...you've got a lot of living to do yet...tomorrow will be a better day...we just have to get through this, and we will!'.......That's a tough question to answer when you see him suffering so much.

Rubbing his back seems to help a bit, cold cloths on his forehead too when he's burning up....and warm blankets when he's freezing!

I know that God will get him through this ordeal....I just don't understand why kids have to suffer!

So many people out there are 'living to die' and these kids are 'dying to live'! Where's the justice?

I hope Mr. T has a good night and a better day tomorrow....his Birthday!

MAY 24, 2008

2008-05-24T08:53:00.005-04:00

Chemo is horrible. Actually...it's a poison. The problem with the medication is in order to kill the bad cells....it also kills the good cells.

The side effects of cytaribine are fevers and nausea. Last night his fever went up to 40.3. He really should be isolated in a private room....but there is no rooms available. There is a shortage of everything here...including pillows!

Mr. T is so sick with chills and fever and puking...that he finds it very hard to tolerate the little boy in his room. The child is only 3 yrs old....but the mother reads children stories in a squeaky loud voice.....and when she's not...the little lad is watching Disney movies. I'm ready to choke the Wigglies....the chipmunks...Barney...and Sponge Bob crappy pants! Over and over all day long! At the same time...the mother is on her cell phone constantly!

Mr. T keeps putting the pillow over his head....and I tell him to just be patient. It's very difficult to be kind & understanding when all you want is sleep and quiet! Okay....I'll stop the whining now!

Since yesterday....Mr. T won't eat or drink anything!

I'm really hoping that tomorrow will be a better day.......because it's a very SPECIAL DAY!

Mr. T's birthday is tomorrow.......and you're only THIRTEEN once!

I have a few surprises in store for him! Let you know tomorrow!

YAHOO....

2008-05-22T15:22:00.005-04:00

We are back at Cheo. Although Mr. T's counts are not over 1.00....they are only 0.74....they called us to come in. They want to go ahead with the 2nd cycle of chemotherapy....his counts have taken too long to come up. The sooner we get this done....the better!
Today he will start his chemo....hopefully everything will go well! We are getting Mr. T's sugars under control. Since Friday...they have been between 5 & 7...and that's where the endocrinologist wants it. Smaller portions and healthier choices.
And I'm glad to be back here...as I will have access to high-speed in our hospital room.....so both of us can have our laptops on.
If everything goes as planned....Mr. T's chemo will take 2 weeks...then 2 weeks for his counts to come up again....and hopefully we can go home for a few days before we head to Toronto! So...bring it on!!

MAY 18, 2008

2008-05-18T09:57:00.004-04:00

I haven't been able to post all week! We were sent to Ronald Mcdonald House because there is a shortage of beds....and Mr. T's counts are not high enough to start his 2nd cycle of chemo....but his counts are too low to go home for a break. His neutro-polys are up to 0.38* and they need to be 1.00* in order to start the 2nd round of chemo.

There is a lot of construction going on at Ronald Mcdonald House...they are putting in all new heaters and air-conditioners in the rooms...so the internet is down.

It is boring for Tayten here...as there is no kids his age to play with...so his days are spent playing games or watching television by himself.

He still walks over to Cheo for school....and for blood work and to see the endocrinologist. We haven't had much good news there.

Mr. T is now DIABETIC. His triglycerides should be between 0.4 - 1.4 and they are 17.69....and no that is not a typo. That number is way over the top. Friday we spent all afternoon with the endocrinologist, a diabetic nurse and a diabetic dietician. Mr. T now has a OneStep glucose meter to check his blood twice a day. He was shown how to do it himself so he could take part in monitoring his own blood sugars. He checks his blood 1st thing in the morning and before supper and enters the number into a book. Also he is on Metformin and another medication to adjust his blood sugars....as well as a special diet which he's not too happy about.

All these problems stem from his immune system which is compromised. We're hoping that with medication and diet we can get his blood sugars under control.

Mr. T hasn't complained about no pop drinks....as long as he can have Crystal Lite in his water...he's okay with that.

We have to watch the fat content and sugars in all his food...which means reading Labels constantly. Also we have to watch portion control! That doesn't make for a very 'happy camper'.

He hasn't complained about switching to brown bread, or having 2 strips of turkey bacon instead of the real thing...but he does miss chips and icecream. There is a no-sugar icecream available but its high in fat. This week I will go to Loblaw's and check out their diabetic section and try t0 make his diet a little more fun. I know they do have diabetic jams and cookie's. Now if only someone can come up with diabetic chips...life would be grand!

SCHOOL DAZE!!!

2008-05-12T14:09:00.005-04:00

Thanks to the Western Quebec School Board.....Mr. T can now attend school. ....(when he's feeling good). Of course he doesn't like the idea one bit! They have a classroom on the 5th floor.....and he only needs to attend from 1p.m. to 3 p.m. each day...and of course he has homework. His teacher Heather is really nice.

She's funny, smart and very excited about teaching....and a whole lot of fun as well! To give you an example........on Mr. T's 1st day she gave him a Juggling Kit! It includes a book on 'how to juggle' and 3 colored balls. His first assignment was to learn how to juggle and write an essay on it! Now....that's fun!

Mr. T is doing well. His counts are coming up.....verrrrry slooooowly!

Hemoglobin is 94*

Platelets are 72*

Neutro-polys are 0.18*

Somehow his glucose levels are out of whack! Yesterday 15 and today 19....and No....he hasn't had any pop, candy or junk! They will do further tests to find out why.

Tomorrow he gets another bone marrow aspiration.

MAY 8, 2008

2008-05-08T19:56:00.003-04:00

Great day today. Mr. T's blood counts keep going up........and that's a good thing!

Hemoglobin is 101* normal is (120-160)

Platelets are 45* normal is (150-450)

Neutro-polys are 0.05* normal is (1.8-8.0)

For a few hours a day they detach him from his I.V pole so he can walk around and go to the playroom. His appetite is great and so is his attitude!

A GREAT BIG THANK YOU.......

2008-05-07T18:00:00.006-04:00

to PONTIAC HIGH SCHOOL! On Monday....the guidance counsellor, Ms. Dubeau came for a visit and brought Mr. T.......500 stars that the students made! Wow....were we ever impressed!

Pontiac High School is a little school with a BIG HEART!

It is easy to see that a lot of love and labor went into the making of each star. To think that each and every student and teacher took the time to make Mr. T a star is truly awe-inspiring!

Mr. T had a big smile on his face just knowing that everybody was thinking about him and wishing him god-speed on his way to recovery. Mr. T spent most of the afternoon checking each and every star that was made for him.

If we weren't moved so much from room to room.....I would be happy to put all the stars on the wall as a wonderful reminder that we have so many people praying for Mr. T. If we get in a private room again....I will put the stars everywhere and take a picture for all of you.

Not only did they make a star to give him hope and strength.....but the students also had several fund-raisers.......and they raised...(drum roll please) $1,020.00 to help with our expenses when we go to Toronto for his bone marrow transplant.

That is truly a blessing. Thank you Pontiac High School for your hard work, your donations and your continuous prayers. There is strength in numbers.....and with all of you behind us....Mr. T will get through this ordeal with flying colors.

We thank you from the bottom of our hearts!

FINALLY.............MAY 5, 2008

2008-05-05T19:04:00.004-04:00

Mr. T's counts are coming up!
Hemoglobin is 59*
Platelets are 22*
Neutro-polys are 0.02*

Today he received 3 units of blood as well as platelets....but his neutro-polys are 0.02! When they are 1.00 Mr. T can start his 2nd cycle of chemo.....and then we'll get to go home for a few days before we continue to Toronto Sick Kids for the transplant.
Mr. T is feeling great. His appetite is good....and he is going to the playroom twice a day to play 'Rock Band'.
He's also been staying up late burning the midnight oil playing 'Grand Theft Auto 4'! This game should be 'adult restricted'.....I need earplugs....lots of swearing and violence!

APRIL 30, 2008

2008-05-01T09:19:00.003-04:00

Today we have been here 31 days. Because of a shortage of beds....they have moved us to a double room. Mr. T now shares his room with a 14 yr old boy....who loves 'gaming'. Now, the nurses on the Unit call this the 'Party Room'! If they are not gaming....they are playing music. The other boy has lymphoma.......but that doesn't stop him. They stay up as long as they can...till about 1 a.m....and then sleep in. I guess Mr. T is practicing to be a teenager! And his appetite is back in full force.
We are still waiting for his counts to come up! Party on....boys!!

Hemoglobin is 114*
Platelets are 18*
Neutro-polys are still 0.00*

APRIL 28, 2008

2008-04-29T08:27:00.003-04:00

Good day today! The doctors allowed Mr. T out of his room so he went to the playroom and played Rock Band with other kids. Although he is still in isolation they want him to move around....walk around the unit or go to the playroom....if not...they worry he may get clots. And we don't need anymore problems!

We are still waiting for his counts to come up. Today he ate well. He had a good breakfast and dinner that I bought from the cafeteria....as he still refuses to eat off the free menu. You can get very tired of cheeseburgers and fries, hotdogs, & poutines. Mr. T has always had a good appetite. I don't worry when he doesn't eat for a few days. He makes up for it real fast. In the past month he has only lost 6 pounds.

They are trying to find a new anti-fungal medication for him to take. When he takes Amphoteracine-b.....it affects his kidney's.......then they tried Ceftazidine....but it affects his liver.....
He has to have an anti-fungal medication which keeps away the fevers. This is absolutely necessary when your immune system is compromised. Let's hope they find one that doesn't have severe side effects.

Today:
Hemoglobin is 89*
Platelets are 41*
Neutro-polys are 0.00*

APRIL 26, 2008

2008-04-26T10:11:00.005-04:00

Food is not staying down! Everything seems to come up. Mr. T will feel better once his counts come up.

That's what we are waiting for. Still no appetite!

Hemoglobin is 86*

Platelets are 13*

Neutro-polys are 0.00*

Today he received platelets.

APRIL 23, 2008

2008-04-23T19:20:00.003-04:00

We are still in isolation..and waiting for his counts to come up.

Hemoglobin is 88*

Platelets are 15*

Neutro-polys are still 0.00*

Mr. T doesn't want to eat.......he continues to feel nauseous. He has ondanestron and gravol all day long. He's refusing to let the nurses put the blood pressure cuff on him because of pain in his arm muscles. They have been putting the cuff on his leg but that doesn't give an accurate reading. This could be due to a low calcium level. Today they did another ultra-sound to see if there is any change in his kidneys.

Mr. T just wants to sleep.....he's not interested in television or his games. Hopefully he will feel better when his counts start coming up.

SORRY!!!

2008-04-20T19:04:00.003-04:00

For those of you who have left a comment.......I'M SORRY! I didn't realize that I had to allow 'comments'.....and I'm not at home to get the emails.

I corrected that! Now you can leave a comment if you wish!

I truly appreciate all the warm thoughts and prayers coming our way! Thank You!

APRIL 20, 2008

2008-04-20T17:20:00.005-04:00

The past 2 days have been very difficult. Mr. T has had a lot of bone pain in his arms and legs....caused by the chemo....high potassium levels....and nausea. He's had a lot of terrible medications.....like vancomysin, ondanesetron, benadryl, tylenol, gravol, 'shake n bake' and more!
They noticed that the 'amphoteracin b' was causing kidney damage......so they stopped it.....and now they give him a new antibiotic called 'ceftazidime' and a new anti-fungal medication called 'caspofungin' which doesn't have severe side effects.
Mr. T's Uncle came up Friday night and gave him a buzz cut....as his hair was falling out from the chemo. Hair was getting into his food and drink and the pillowslips were covered in hair. I will post a pic when he is feeling better.
We have to wait till his blood counts are up in order to get the 2nd cycle of chemo treatment.

Hemoglobin is 81*
Platelets are 12* - yesterday he got 2 units of blood and platelets
Neutro polys are still 0.00* - platelets today as well

His Uncle also brought him the game Devil May Cry for his Xbox 360....which he will enjoy when he's feeling better.
Monday....a physio therapist will come in the morning.....as the Doctor is concerned that if he doesn't move his legs (too painful).....he will get blood clots.

APRIL 18, 2008

2008-04-18T10:19:00.006-04:00

The past 2 days have been horrible. The medication amphoteracine b is horrible. Not only did Mr. T get chills and fever...but also terrible nosebleeds. Yesterday the first nose bleed was for 50 minutes. Then the nurse has to order platelets.....and that can take awhile. His 2nd nosebleed of the day was for an hour and a half. There was a constant flow of blood in the bowl...although Mr. T as well as the nurse took turns holding his nose firmly to stop the flow (which didn't work) and ice on his neck. At the same time.....Mr. T was suctioning the blood out of his throat with a suction tube that looks like something a dentist would use.

Of course Mr.T. didn't want me taking pictures of him with a nosebleed...but I did manage to take a picture of the suction cup full of blood attached to the wall. This is the blood he suctioned from his throat.......it says 1,000 ml....and he also filled up 2 blue basins with blood. That's a lot of blood! At the same time he was getting the rigors (shaking) from that horrible drug. What a mess! Blood all over the blankets....bloody facecloths, bowls of blood and him shaking uncontrollably........while we wait forever it seems for them to deliver platelets. Later he had a fever of 38.9.

At that point he had 2 doses of demerol, benadryl, tylenol........and later morphine. The morphine helps with the aches and pains he has in his arms and legs from the chemo. It is such a relief to see him sleep without shaking or bleeding or puking!

Hemoglobin is 81*

Platelets are 18*

Neutro-polys are 0.00*

No....we are definitely not having fun!