DAY PLUS 91 - OCTOBER 16, 2008

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

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

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

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

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

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

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

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

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

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

DAY PLUS 53 - SEPTEMBER 8, 2008

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

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

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

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

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

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

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

DAY PLUS 49 - SEPTEMBER 4, 2008

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

DAY PLUS 46 - SEPTEMBER 1, 2008

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

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

His counts continue to improve daily:

WBC - 7.31 normal range (4.5-13.0)

Hgb - 103 (120-160)

Platelets - 170 (150-450)

Neutropolys - 4.57 (1.8-8.0)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

DAY PLUS 43 - AUGUST 29, 2008

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

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

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

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

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

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

Today's counts:

WBC 8.71 (4.5-13.0)

Hgb 107 (120-160)

Platelets 132 (150-450)

Neutro-polys 5.75 (1.8-8.0)

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

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

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

DAY PLUS 40 - AUGUST 26, 2008

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

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

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

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

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

DAY PLUS 39 - AUGUST 25, 2008

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...........

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

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

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

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

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.............

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

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

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

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

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

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

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

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

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....

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

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!

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

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

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

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

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

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

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

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

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????

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...

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!

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

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

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

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

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

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

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

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

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.