WAITING & HOPING...

There is not much to tell you....Mr. T and I have been going for bi-monthly appointments at the Children's Hospital for his phlebotomy treatments. This is the treatment used to remove iron from the blood. They tell us that the treatment is going well...they hope that by January he will no longer need them. It appears that the treatment is working....the amount of iron in his blood has been returning to normal...so that's something to look forward to.

As for the bloodwork.....his readings have been going down as well...very 'slowly'...but gradually...which means his platelets are 50*...normal is in the range of 150-450........and his neutro-polys are 1.75* and normal is 1.8-8.0...........so you can see they are lower than normal.

Mr. T. feels good....he is looking forward to Christmas.......even though his immune system is taking a beating.....he has the perpetual cough...but no fever.....he has to use his puffer every day....no exertion...no shoveling? no vacuuming?? but he sure can reach for the cookie jar!!

We are patiently waiting for a bone marrow match. As you know...Mr. T's name is in the bone marrow registry......this is a world-wide registry....and I have faith that they will find a bone marrow match very soon.

Unfortunately....his biological dad was not a match....I've been told that 70% of biological parents aren't a match......and that's why we have a registry.

Hopefully.....Mr. T. will find a match in the New Year! That's my Christmas Wish!

Right now...Mr. T. is not thinking about that at all......he's hoping that Santa brings him Guitar Hero 3 for Christmas.....and Nanny is hoping she gets 'earplugs'!!

Let's pray that Nanny gets her wish and Mr. T as well!

IT'S ABOUT TIME....

I'm sorry! It's been awhile since we last posted anything. No news is good news..right?

We've been playing a 'waiting' game. As you know we found Mr. T's dad...Fred....and he was more than happy to get tested to see if he would be a bone marrow match.

The Winnipeg Hospital was very obliging...although it took several weeks to set it up. They sent a nurse out to the reserve...8 hours away...so that Fred wouldn't have to make the trip and they took a blood test. Then we had to wait 3 weeks for the results. Fred was very anxious. He called me often to see if I had any news.

Yesterday...I found out that No...he isn't a match. Fred is very disappointed. I told him...not to feel bad...70% of parents aren't a match. Mr. T's name is in the world-wide registry and as soon as they find a match we will be called and told to 'Come on down'. I hope it's not before Christmas. I would love to spend Christmas at home with my family.

In the past 2 months...Mr. T. and I go to the Children's every 2nd Tuesday for bloodwork & for his plebotomy treatment. That's where they take 2 cups of blood from him...hoping to get rid of the extra iron in his liver which could be deadly. This should continue till January '08.

Next Tuesday, the 27th November...he will have another bone marrow test done (to see if there are more cancer cells in his body) ..more bloodwork and another phlebotomy treatment.

Lately his immune system has weakened. His neutro-polys which should be between 1.8 - 8.0.....is now at 50. Under 25 he will need blood & platelets transfusion.

Since August all the numbers have been going down....from hemoglobin to platelets, neutro-polys which you need to clot your blood, etc.

At this time of the year....I worry....about colds that can turn into pneumonia...nose-bleeds that won't stop....dry air from heating our homes.

Those are the major things to worry about....bruising, pneumonia, bleeding!

And hopefully they will find a bone marrow match.....after Christmas!

Looking at Mr. T...he looks like any other normal 12 yr old. He enjoys school...having his friends over...he is learning how to play the guitar.....and he's now taking home-ec in school....which he loves. He is now busy making his Christmas list. Ouch!

I will keep you up-dated.

WE DID IT....

Yes...I have found Mr. T's biological dad. I'd like to say it was my 'psychic abilities' or 'sheer genius' but I'd be lying to you. It was plain old work and perseverance...that's all it was...and maybe a little luck thrown in. If I learned anything from this experience is 'never say never' ...no matter who you are and no matter where you live...if somebody wants to find you they will.

Now my son is calling me 'the dawg'! You can run...but you can't hide! So back off 'Dog the Bounty Hunter' eat your heart out!

It wasn't too hard! I entered the name 'Francois' in Canada 411...and got a list of names to start with.... looking in the area of Winnipeg, Nelson House and Norway House and all the Indian reservations. With each number I called...I hoped to get in touch with a cousin or an Aunt or Uncle that would be related somehow......and that's exactly what happened. I happened to call a cousin of his....at first she was hesitant...not knowing if I was a bill collector or looking for child support. When I explained the situation...that we were hoping to find a bone marrow match...she went out of her way to help me. She told me to look at Norway House which is an Indian Reservation outside of Winnipeg. She went as far as to tell me...that Fred's mother was living there on the reserve...but she didn't have a phone. From that information alone..I sent a letter to the band police via email....and a few days after I got a call from a lady officer telling me that Yes....the lady did live there...and Eureka!! so did her son, Fred Francois. This lady officer made sure to deliver my letter to the mother of Fred and the same day...late at night...Fred called me!

He called me at 12:30 at night...I was so thrilled and excited. Finally...I was talking to Mr. T's biological dad. He was more than anxious to help out in any way he could. Even though it would mean an 8 hr drive to Winnipeg, (the closest big city) to get tested.... he was more than happy to do so.

I found out a bit of his medical history....he is 40 and suffers from diabetes and epilepsy...which is good to know. I told him that the Oncology Team would be in touch and they would have him tested at the closest hospital to see if he would be a good bone marrow match.

I was so excited I couldn't go back to sleep for hours. This is a win/win situation! If he is a bone marrow match....great...and if not...he can help me get Mr. T an Indian card which will help with all his dental and medical bills.

Fred told me to his knowledge he has 9 kids in all! From the age of 8 to 22. The head nurse was thrilled when she found out...but I told her Fred doesn't have custody of any of these kids...so it's not up to him to decide if they are to be tested or not. I know that the nurse was thinking...the more, the merrier. It does happen that sometimes both parents aren't a match ..that's why they will test other children from the parents....and if not...then they have to go to the worldwide bone marrow registry to find a match...but still.... there is a chance that he just might be 'the' perfect match. Wouldn't that be great?

Everything happens for a reason...I don't believe in coincidences! Hopefully one day Mr. T. can meet his biological dad and perhaps find out about his ancestors and meet his other siblings...and know his roots. We all have a need to know where we come from...in order to know where we're headed. I have spoken to Mr. T about his roots...and he is curious...so hopefully one day when Mr. T is ready....he can meet his father and learn about his roots and culture. I will let you know what happens.....just stay tuned!

For those of you that are looking for a loved one or family member or friend...I say...Never Give Up.....follow your heart...and follow the clue's. Nobody can go through life without leaving clues like breadcrumbs behind them. Start with what you know...and go from there. Where there's a will....there's a way. You'll find it.

NOW WE KNOW....

what the diagnosis is.... Mr. T has been diagnosed with 'Mylodysplastic Syndrome'. In plain english it means 'sick bone marrow'. October 2nd was a very long day. First there was blood work....then Mr. T. had his bone marrow aspiration. They tried to give him a lumbar puncture but he had problems breathing so the anesthesiologist had the doctor stop. The results of the bone marrow aspiration was the same as previous weeks results. They can see cancer cells but they haven't moved much....they go from 3% to 6% and back down again...which tells them that he has a sick bone marrow. The Oncology team told us that the only way to correct this is to have a bone marrow transplant....so that is the plan. They have sent all the results to a crytogenetics lab...and regardless of the lab results...they will go ahead with a bone marrow transplant. We await the results...as this will tell the Team what program to follow....In 2 to 3 weeks they will call us in for a meeting....and start the plan in action.

We know that we will stay at the hospital and they will try to get rid of the cancer cells...then we will be transferred to Toronto Sick Kids for the bone marrow transplant. They told us to expect to be away from home for several months...2 to 3 months depending on his health.

Late in the day he had 2 more cups of blood removed.....they are still trying to remove iron from his liver....which made him sick and dizzy but thankfully....Mr. T's appetite is quite good!

Mr. T is anxious to get the show on the road. He wants the bone marrow transplant. He is tired of appointments, missing school, blood work, bone marrow tests and just wants to be a normal kid.

I don't blame him at all....he knows that his bone marrow is not normal.....and he believes with a new bone marrow he can lead a normal life.....a life without cancer, needles and chemo.

I'm glad that Mr. T and I get to spend 2 or 3 more weeks at home..to prepare ourselves mentally and emotionally for the ordeal ahead.

Thank you for all the prayers and good wishes you have sent our way. We are so happy to have the support and encouragement from all the wonderful bloggers that will be with us on our journey to good health. Together we can make it happen!

WHERE'S MY DADDY?

We know 'who' Mr. T's daddy is...but 'where' is he? That's the question. 13 years ago...a young lady of 15 met a 27 year old gent...and a child was born. 'Mr. T'. When this man heard the young woman was pregnant.....he left...he was concerned about his age and her age. He knew she was pregnant...but he doesn't know he has a son. When Mr. T. was 6 months old...my son met this young lady...fell in love...(I became an instant grandma) and 2 years later they had a daughter. I now have 2 grandkids.

When Mr. T. was first diagnosed with Leukemia...his birth mother was tested to see if she could possibly be a bone marrow donor (if needed) ...and so was his half-brother and half-sister...but unfortunately they didn't match.

A month ago...the Oncology Team asked me if it was possible to find the biological father?? I asked them if it was absolutely necessary?? I'm a firm believer in the adage..'if it's not broke...don't fix it'....and the team told me that yes...it was a good idea to pursue it. They told me that the 'father' may not be a match...but then again he just 'might' be...and it was worthwhile to find him. We also know that he has 2 other daughters that are older than Mr. T. somewhere in Canada....and they as well just might be a donor match. So the hunt is on!

Oh and also....even if the biological father is not a match....we can ask him to sign a form stating that he is the biological father....and this will give Mr. T. the rights to get an Indian Card.
My son...the adopted father...has no medical insurance or drug plan. This Indian card would benefit Mr. T. in so many ways.

Because Mr. T received 6 months of aggressive chemo...his teeth suffered. (Chemo dries out the mouth, bacteria thrives and causes havoc on teeth). He needs $1400 of dental surgery right now...and more in the future. This is just for 6 tiny cavities not seen by the eye. Also., some of the cancer drugs are not fully covered by his health card. From what I understand...an Indian card would help with the dental work...chemo medication...transportation to and from apts...rental of any medical equipment he may need now or in the future & tutors if needed while in the hospital.

As you can see...it has not been a smooth journey for my Young Warrior! I believe he should have his Indian Card...it's his right and his heritage. Mr. T's mother is Caucasion and his father is Cree. The oncology team has told me that it is more difficult to find a bone marrow donor if you are of mixed heritage. Your chances are much better if both of your parents are caucasian.

Perhaps someone out there can help me find his father?? or tell me how to go about it??

His father's name is FRED FRANCOIS...he is a Cree Indian and approximately 40 years old. When Mr. T's mother met him 13 years ago...he was working as a 'carny' in the fair..travelling all over Canada and the States..but mainly in Canada. He did move around a lot...so I don't think he does the same work..most probably he's a laborer. Mr. T's mother tells me that Fred Francois just moved around from place to place and worked in labor or construction. She believes that his family came from western Canada...possibly Edmonton, Saskatchewan, Manitoba...etc. And that when she knew him he had 2 daughters (from different women) ...who would now be 18 or 20...so possibly he has more children now.


It is possible that we're looking for a 'needle in a haystack'...but I believe in miracle's. If you have any idea's or suggestions on how I can find his father...please let me know..I welcome any thoughts you may have.
I have entered the name 'Francois' in Canada 411...for different provinces...and I have quite a list of names. I am calling each person hoping that maybe they are somehow related and know how to get in touch with this man. I do have a telephone plan...600 minutes for $26...so I am making good use of it. Any idea's??

ANTICIPATION!

So far...so good! Mr. T's apt on Sept 18th went as well as it should. Once again they took blood from him...this time 2 cups. We also had blood work done. We saw the head of the oncology team...and she 'anticipates' (what a horrible word) that on our next apt...Oct. 2nd..that we will stay at the hospital. Once again she warned us...'come prepared to stay awhile'...but then again it depends.

I asked her "is it possible that the number can stay the same for a long time?" and she said. "No."

I asked her if it was possible that the numbers would go back to zero??? maybe? miraculously? and she said..."No."

Well...doctor's may not believe in miracle's...but I do! You never know. You can't believe everything you hear.

Looking at the blood work and the numbers...she 'anticipates' that the cancer cells will have spread by his next apt. Mr. T. will have a bone marrow aspiration done that morning, more blood work...and that will tell us how many cancer cells are in his bone marrow. If the number is 20 and up....we stay...if not we can go home and wait. Right now his platelet count is at 58....under 25 they will give him platelets and blood. The normal range is between 150-450.

Mr. T does have a bad cold...but they listened to his lungs...and they don't seem to be worried about it. Otherwise.... he has been going to school....football games...after-school activities, biking and eating me out of house and home. There are many things I'm thankful for. I'm thankful that we do have these 2 weeks at home. I believe that if God is willing....anything is possible.

Football Season!

Mr. T is on the Football Team. Although he is not allowed any contact sports because of his port-a-cath, he was given several jobs. He is Mascot, Water boy, and Equipment Manager. He is thrilled! And he gets to go on all the trips with the team! Nothing like a Title to make you feel better.



And I get to pick him up when they have a game, and dish out money for meals.



Mr. T. gave me a title...Mascot maid!

ANOTHER BMA!

This morning we had another Bone marrow aspiration. This test is done to see if the cancer cells have grown. I have mentionned that Mr. T's cancer blasts were at 10. When they are at 20..he will start the chemotherapy. So far, the Oncology team are very happy that the blasts haven't spread yet. Their main concern is to get the iron out of his blood. Once he starts chemo...the iron will increase....not decrease...so its' imperitive to lose the iron now!

Well... good news! The results of the BMA were good! The blasts haven't changed....they are still at 10....which means there is no movement in the blasts. So...cancer cells haven't spread yet...but they do anticipate that they will. They tell me that this is a 'good thing'. . ..While they remain inactive...this gives the team a chance to get rid of the excess iron in Mr. T.'s blood. And they are trying hard with the chelation therapy and the 'removing of the blood' therapy. With each day comes a new challenge.

The Oncology Team thinks this is great! They need the time to get rid of the iron. They know that as soon as chemo starts and they have to give Mr. T. blood transfusions.....well, the iron will accumulate once again...and this can prove to be dangerous for him. They (the team) hope that it continues like this....they want to be able to continue to remove the excess iron without having to start chemo...and so far....so good!

And so we can go home till the 18th!!!! Yahoo! Mr. T. can go to school and get home-care till we come back for further tests. The Team call Mr. T. an 'enigma' (something puzzling, mysterious or inexplicable) but I can explain it. The reason Mr. T's cells haven't budged is because of all the people out there praying for him...and his Magic Afghan that is full of love and prayer. The doctors don't seem to care for my explanation but then again, they have been wrong in the past.

As long as Mr. T's cells don't spread...he can lead a normal life. Well he isn't allowed any contact sports because of his port-a-cath, but he can do gym...and we do have to watch for bleeding or bruising. The Oncology Team tells us that once the cells are there....they do anticipate that they will grow. That's the word they use...'anticipate'.....what they mean is....it will happen....but till then we can enjoy some semblance of a normal life! So excuse me while I go pack! And don't stop praying!

WHAT'S FOR DINNER?

The menu can get to be monotonous if it is the same thing every day! All kids at the Children's Hospital eat for FREE...as long as they are admitted to the hospital. You can order breakfast, lunch and dinner and snacks till 7 p.m. every day. The menu never changes. The portions remain the same. All pasta comes from a can....and the same with soups. As you can see when looking at the menu...its not really healthy! They serve kids french fries, poutine's...and cheeseburgers or chicken fingers...everything is breaded. The only thing that is healthy are the fruits they offer or the small salads and juice.

Everything can get tiresome after awhile. The main goal of the hospital is to get kids to eat no matter what. When undergoing chemo...a child will lose their appetite....and the best way to encourage them to eat is to let them have hotdogs, cheeseburgers, pizza, chicken fingers, etc.

But Mr. T. is used to home cooking. He loves home-made soup, lasagna, chicken & mashed potato's, shepherd's pie and beef stew! And he loves fettucine alfredo! There is a Mr. Sub at the hospital...it serves submarine sandwiches and pizza 7 days a week till 11 p.m. They get their pizza from Pizza Pizza and their subs are inferior to Subway's but better than the children's menu. The hospital also has a cafeteria that is only open 5 days a week from 8 a.m. till 6 p.m...and every day they offer a salad bar....a main dish...(lasagna, spaghetti, chinese, stirfry, home-made soup, etc) and a dessert bar! So, of course Mr. T. prefers the cafeteria....and shuns the children's menu!

Mr. T. and I are not in agreement! I told him if he eats his breakfast and lunch on the kid's menu...I will buy his dinner! I will not budge! Mr. T. is very convincing...and headstrong..but so am I! "No can do"...said I!

Mr. T argued that he would 'die' eating hospital food (he says they getter better food in jail) little does he know 'he's right'....so far this morning he had 2 bagels with cream cheese and chocolate milk and for lunch he had (canned soup) yech! and grilled cheese, pudding and milk....and he is still breathing!!

If you click on the menu...you can see what's available!

OH DEAR!

This morning after blood work was done...the doctor came to tell us that Mr. T had sugar in his urine & blood! Not a good thing! Mr. T. did put on a lot of weight since last year. The doctor's are well aware that most of the weight gain was caused by cancer drugs.... kidney and liver dysfunction and being sedentary. Last night he had to fast once again so they could test his blood and urine this morning. Again they saw signs of diabetes....which we must take control over right now or else. Mr. T. just can't afford to have any more complications. So no more treats or pop. He can have one diet drink a day.....and no candy or junk food. He doesn't mind....as long as he can have real food from the cafeteria and not on the Children's Menu...he's happy. We are hoping that the Discharge Team can find a way for Mr. T. to get his chelation therapy at home while we wait for the cancer blasts to increase.
Slow and steady wins the race!

UNHAPPY NURSES!

This is the reason the male nurse's aren't happy! The Hospital received new call button's this week...but the male nurse's do not approve of them! We have 4 male nurse's on the Oncology floor....and now you know why!
The nurse's all agree...the button is sexist. One male nurse told me he just does not look good in a skirt! He does have skinny legs. Mr. T. thought it was hilarious...we all decided when the male nurse's were on duty...we just won't use the call button. We agreed that we would just yell like hell.....Hey Keith.....Hey Cory....Come on Down! Chop, Chop....move it!
To be honest...even the female nurse's don't wear a skirt. They all wear slacks! Hmm....what's up with that?

DAY AFTER DAY!

Chelation therapy continues! Night after night....at 10 p.m. they hook Mr. T. up to the pump till 8 a.m....7 nights on and 2 off. They are hoping to get rid of the excess iron.

The Oncology Team have started a new procedure: The process is called phlebotomy, which means removing blood. Depending on how severe the iron overload is, a pint of blood is taken once or twice a week for several months to a year, occasionally longer. Blood ferritin levels are tested after every four phlebotomies to monitor iron levels. The goal is to bring blood ferritin levels to the low end of normal and keep them there (that means less than 9 to 50 micrograms of blood ferritin per liter). Depending on the amount of overload at diagnosis, reaching normal levels can take up to 100 phlebotomies.
The Oncology team take a cup of blood from my grandson and replace it with saline in the hope that they are removing iron. Hopefully his body can make more blood without the excess iron. They say this will continue till January. Once every 2nd week blood work is done to determine his level of iron. Apparently if the iron in his body is ignored..this can cause severe side effects from liver disease, heart disease and worse. I have a lot of faith in the Oncology Team. They are dedicated, hard-working and never second guess anything. They are in constant touch with all the other cancer centers in the world on a weekly basis.....and they take the time to answer all our questions. We are definitely on a winning team! We have faith in them and in God! Who could ask for anything more? Your prayers and comments are always appreciated. Thank you!

Mr. T's attitude and sense of humour prevail. The nurse's, doctor's and maintenance workers love to stop by just to see what we're up to. With Mr. T...you just never know! Thanks everyone for all the kind comments and prayers! It seems to be working!

DECISIONS, DECISIONS!

I can't make up my mind! Should I get my hair done or my teeth fixed? What do you think??

I'VE GOT MAIL!

As some of you may know...Shelly @ THIS ECLECTIC LIFE is very busy with her SHARE A SQUARE project. Her goal is to make 140 afghans for the children at Camp Sanquinity by June 2008. When Shelly heard that my grandson had Leukemia and would be getting more chemotherapy....she got together with her group of crocheters and they decided to make Mr. T..the first recipient of an afghan. These afghans are very special! It takes 48 people with love and compassion to make one of these quilts. This is a real labor of love! Many, many hours and much love go into making one of these beautiful afghans. Actually it takes more than 48 people. Somebody has to link all the blocks together...add on gift cards and mail it.

What better way to thank Shelly & Friends is for the happy recipient to pose with the very first afghan they made. As someone remarked.....'Just imagine this afghan as one great big hug that will bring you comfort in the days ahead!'

Well....a picture is worth a thousand words. And as you can see....Mr. T...is one Happy Camper.

Thank you everyone from Mr. T. and Nanny.

The picture doesn't really do the afghan justice. When I spread the afghan on the bed...nurses & doctors came in to ooh & aah over it! Each and every one of them marvelled at all the work involved while they read the tags and where they were from. Even the maintenance people came in to talk about it. Mr. T took great pleasure as he read off the faraway places that each square came from. That's what makes the afghan so unique. To think of all those loving hands that took the time to make this for my grandson brings tears of gratitude to my eyes. For 2 days I left the tags on the comforter so everyone could share in our joy. Finally, after copying everybody's name down, I took the tags off so that Mr. T could use the afghan as it was meant to be used.

I love the size of it! It is 6 squares wide by 8 long. Just the right size for a growing boy!

A little comfort goes a long way when you must spend a lot of time in bed! You can see on his right side where he is injected each night with Desferal.

Rest assured...this child will have sweet dreams when he is covered with love from so many people that took the time to crochet a square for a kid with cancer.

Please go visit Shelly @ THIS ECLECTIC LIFE to see how you can be a part of bringing comfort to some little boy or girl! You can see how happy this big boy is!

THIS HAS BEEN A CRAZY WEEK!

We arrived at the Hospital bright and early....Mr. T had a LP (lumbar puncture) and a BMA (bone marrow aspiration) to see if the cancer blasts have gone up. Late afternoon we had a meeting. Apparently the cancer blasts haven't moved from 10. In order to be admitted and start chemotherapy they should be at 20. So they plan to send us home. They ask us to come in the next day in order to get medication for his liver. We go back to RMH (Ronald Mcdonald House) and I pack and let the office know I'll be leaving tomorrow.

The next morning we arrive at the hospital to be told that the medication Mr. T. needs cannot be given at home...so he needs to be admitted in order to receive it...so we can't leave. We unpack again...it's a good thing they didn't let someone else have my room.
Friday morning they plan his surgery. Mr. T is to get a double line brouviac inserted as he had last year. It is much easier to administer medication this way and as they anticipate that he will be getting chemo....they may as well put in the line now.
Mr. T's surgery goes well...and I'm happy to see him in recovery. I stare in shock at his line. This is not the right one! What he has is a double-lumin port-a-cath....and not a double line brouviac. There is a big difference!
The port-a-cath is great. My grandson can still take showers and swim....but for chemotherapy for AML Leukemia the brouviac is what he needs.

This picture was taken in January '06 with Paul a maintenance worker. As you can see Mr. T. is wearing a double-line brouviac.







This is a double-lumin port-a-cath. As you can see it is not visible to the eye. So, right now they are not using it. Mistakes 'can' and do happen. They plan to change it in several weeks when there are more blasts in his bone marrow.









My grandson has too much iron in his blood. This is called 'liver poisoning'. It is caused from too many blood transfusions. It is imperative that they remove the iron.
Desferrioxamine or Desferal is a chelating agent used to remove excess iron from the body. It acts by binding free iron in the bloodstream and enhancing its elimation in the urine. By removing excess iron, the agent reduces the damage done to various organs and tissues such as the liver.
This is a pump they use to inject him with Desferal. This medication is extremely expensive. I have read that in many countries people die everyday because they cannot afford the medication. I thank God that we live in Canada and the medication is covered if it is given in the hospital.
Every night they hook up my grandson from 10 p.m. to 8 a.m. He will receive this medication for 7 nights and then get 2 nights off...till the iron level decreases.
They are not even using his port-a-cath to inject him. They inject him every night into his stomach. The first night he had a reaction which was treated with Benadryl.
The first 3 nights was painful....until an older nurse suggested using Emla (freezing agent) one hour before....and now Mr. T. is okay with the treatment. I have no idea why they didn't think of this sooner.

14 MONTHS LATER!

No.....life is not fair! There are so many people out there just 'living to die'....and my grandson is 'dying to live'! How fair is that? When my brother of 51 was dying with lung cancer....he said....'you know...I worked hard to get it....I asked for it....and I earned it.' But he also said...what he felt was so unfair...was that kid's got cancer and they didn't choose it!

Several weeks ago, when I took my grandson for his usual check-up and blood work, the doctors found that he needed a liver biopsy as his iron levels were high. When they did the bloodwork...they saw that his counts weren't good. His platelets had dropped. They scheduled 2 bone marrow aspirations, one week apart .....and found that the cancer cells were back!
They told us to come back on Tuesday, August 21st so that Mister T can have another bone marrow aspiration as well as a lumbar puncture. We will be staying at Cheo for the next few months.
The plan is to try to get him into remission once again....and then we will travel to Toronto Sick kids hospital for a bone marrow transplant....if they can find a matching blood marrow donor. His name is already entered into the bone marrow registry.. I'm sure they will find a donor.....medical technology has come a long way.

In order for my grandson to get better.....he will get worse. Today I look at him...and he looks like the picture of health. He is brown from long summer days of swimming and fishing and has grown a few inches in the past few months.....and his appetite is ginormous! I am not looking forward to see him getting sick again. And he will. Chemo is not for the faint of heart.
Although I hate to leave my home and my granddaughter...I have no choice. Neither does Mister T.

He was so excited about going to high school this year with his buddies. Last month we went to visit his high school, meet the principal and teachers, and get an idea what his school year would be like. He was so excited to find out he would have basketball, football, dodgeball and guitar as well as drama.
He was also looking forward to our county fair in late August for 4 days....the rides, the games, the excitement.

He doesn't understand why he should go through this ordeal again.....and neither do I. I have sat down with him and explained to him in nanny-talk...why we have to go through this again.

I used the analogy of his bicycle. Many times his inner tube on his bike had to be changed or patched...although we patched it up a few times. ...eventually we had to buy him a new inner tube. I told him....that chemo was the same thing. First they try to patch your body using chemo....but just like your tube on your bike....eventually you need a new tube...the old one just won't do. Same with your bone marrow...if chemo doesn't work....then you need to get a bone marrow transplant...and you'll be good as new!

Well it sounds good to me! And he has complete faith in me....and I told him I have faith in the doctors & the medical team....they are professional...they know what they're doing...they've done this many times. And I've assured him that even though he may not start school with his friends....that he will keep up his school work with a tutor at the hospital. He will get his homework sent by computer....he will get a loan of a computer at Cheo just for that purpose...so that when he comes home he can start back in school without missing a beat.

His only question was...."Will you stay with me, Nanny?" and I said..."for as long as it takes...till you get well....and we'll come home together!"

We won't always stay at Cheo...if Tayten is having a few good days...when he's not on chemo...they will allow him to come stay with me at Mcdonald house, (which is 1 block away) and thats when I can get his sister to come as well.....and we can have a good weekend together. In the past she did spend a few weekends with us....and we had a good time...playing boardgames, watching movies, sharing a room at the Manor and going to museums in the city.

We are all packed and ready to go. Wish us luck! Once we are there...I will keep you up-to-date on Mr. T's treatment with pics.

AT LAST...VICTORY!

Mister T's last chemotherapy session was on his birthday...May 25th.....and we were sent home June 28th, 2006.

6 1/2 months later.....half a year.....193 days....finally we got to go home! In a way, I felt that I was incarcerated....and finally got my freedom. To be isolated in a hospital room for that long...I could almost imagine what it felt like to be in jail. There were times I never left the room for days. We were thrilled! We were both anxious to get back to our lives, to our home, to our beds.

Tayten was now in remission. His appetite came back quickly...he gained weight....he felt great and life was good!

He was living life to the fullest.....he went fishing & camping., had sleep-overs and his friends were over every day for bbq's and movies. His hair grew back just as thick as ever...eventually he didn't need anymore medication....and his energy for life was at full-tilt!

He was thrilled to start school in September with all his friends. Although he had missed 6 months of school the previous year...he was able to catch up to his classmates, thanks to the tutor at Cheo....and his determination not to be left behind.

Tayten did have to miss quite a few days of school as he had his monthly visits to the hospital for blood work and tests. Everything went well. He was able to participate in sports at school, and all the fund-raisers...went on school trips and forgot that he ever had cancer. He didn't even want me reminding him about the time he was sick. He just wanted to get on with life. He participated in all the community activities from dances to fishing derbies and yu-gi-oh tournaments. To see my grandson so happy just to be alive...thrilled to face each day full of energy was worth the 6 months in limbo! No, there is no place like home!

THE NEXT 6 MONTHS!

The next 6 months were really tough on my grandson. They began treating him very aggressively with chemo. Chemo is a poison. What it hopes to do is eradicate the cancer cells, but in so doing it destroys good cells as well. The first month Mister T did fine. He ate well and was hardly sick. The 2nd month..he got really sick. He then had quite a few major complications. After his 1st course of chemo, he developed typhilitis as well as acute renal failure. He required hemodialysis for his renal failure and also had status asthmaticus. Mister T develped 6 episodes of febrile neutropenia and 3 episodes of septic shock.

He went to the Intensive Care Unit once with acute renal failure and septic shock and once with febrile neutopenia causing septic shock. I rember those nights very well....I came so close to losing him. I sat by his side all night in I.C. holding his hand and praying. If I left the room for 5 minutes a nurse would come and get me, saying he's asking for me. He wanted me by his side all the time. He also had 2 episodes of influenza A. A lot of the time we spent at the hospital he was isolated in his room with me. His last chemotherapy was complicated by pneumonia which required a bronchoscopy. Tayten, my warrior recovered quite well from all of these episodes.

Everytime he received a unit of blood, I said a prayer to thank all the people who have donated blood. Without their donations, my grandson would never have made it.


During his therapy, Tayten received 38 units of packed red blood cells, 47 units of platelets and 4 units of albumin.

Many of the cancer medications have long-term side effects. Cytarabine has minimal long term side effects, but daunorubicin and mitoxantrone both have quite marked long term side effects. These 2 drugs affect the heart muscle and for this reason Tayten will need yearly echocardiograms to monitor his cardiac function. As well, he should not participate in weight lifting as this provides a sudden strain on the heart which is quite dangerous for a patient who has received these anthracyclines. The doctor explained that at this high dose of cardiac medications he may end up requiring followup by a cardiologist and potentially cardiac medications in the future. Tayten also received 'etoposide' which is associated with a 2nd malignant neoplasm with a different type of AML. As well etoposide can cause some problems with infertility. This risk is low but it is there.

It didn't take long for Mister T to lose his appetite. He got sick of the kid's menu at the hospital and would only eat if I ordered him restaurant food. Half the time he wouldn't finish it. It got really expensive after awhile....but what can you do. You have to make sure that the kids eat in order to keep up their strength...so I did whatever it took.

Many people donate to cancer foundations & hospitals every year....what they don't know is 98% of the money donated goes for research, equipment and training. Very little goes towards families in crisis. While there, I met families who had sold their homes,,,or given up their apartments and lived at Mcdonald Manor while their child was getting treatment. Many others had to give up their jobs & their savings in order to move closer to the hospital. A lot of people I met had no drug plan....and the cancer drugs are very expensive. Some months Tayten's cancer drugs came to $1500. At that time, his dad had a drug plan....now he doesn't!


I thought I was having a difficult time till I met a woman with 5 children, all girls. Her husband had to give up his job, they lost their house to the bank, and they all lived at Mcdonald Manor in order to get help for her 6 yr old daughter. So, just when you think you're having it hard....you meet someone who is having it a lot harder than you are! At least I was 3 months away from being mortgage free. Now, that's a blessing!


I will admit though...that the Children's Hospital is a great place for kids! They have Child Health Specialists (that's what they call them) and they help the kids have a fun time while they are in-hospital. They have a special room set up with a large screen t.v., all the latest movies, computers,,,and loads of arts n crafts. If your child is not in isolation, he can go from 4 to 6 each day to play with other kids or learn a new craft.



Tayten was in isolation a lot...but he did enjoy the Play Room where he made gifts for all his buddies. He made CD racks and bird-houses, jewelry boxes, etc.


He also met a lot of neat people. Stuey & Fuzzie are clowns that came to visit weekly, and Molly Penny is the hospital clown who visits kids daily. He also met a lot of Navy people who took the time to tell him wonderful stories about their travels. They told him of being at sea for many months and seeing whales and dolphins and many wonders. Of course, he wants to join the Navy when he's older and see the world.
It wasn't all fun and games. Although my grandson has a great sense of humour and energy...there were days that he wanted to give up. He was so tired of being sick...he just didn't want to live anymore. Several times he told me...that he wanted to go see his Uncle Jimmy in heaven. Some days he didn't have the energy to play games or watch television.....it was very hard to see him so sick and know that there was nothing I could do.
Although we spoiled him a lot......his uncle had bought him the latest X-box, he had a Nintendo, Gameboy, Game-cube and later a Nintendo DS....his own television set.....some days he was too sick to play a game or watch a movie.
Those days were hard to get through..I never let him see me cry...I never broke down. I just kept encouraging him....I told him that Uncle Jimmy was watching over him....but it wasn't his time to go to heaven. Uncle Jimmy wanted him to come home...to fish and camp with his buddies....to grow to be a man. I kept encouraging him to hang on.....be strong.....a little while longer! I told him that he was strong, a warrior.....that together we could beat this cancer....we would go home....he would go fishing again....and live a normal life.
I had made a deal with God when we first came to the hospital. I told God that I would go wherever he sent me without a complaint.....I would go to Timbuctoo or Alaska with Tayten .....and I would stay for as long as it took.......if only he would let me come home with my grandson. And God does listen!

THE DAY THE MUSIC DIED!

I'll never forget the date. December 19, 2005. In that past month, I must have visited the hospital at least twice a week, every week. My grandson was not feeling well. Tayten was tired all the time...he had no energy, lost his appetite...and for him...that's very strange. He was a healthy boy who never got sick....and ate like a horse. To top it off, he started having nose-bleeds. Of course, I blamed it on a dry house heated by wood and oil. Still, I was worried. One day the school called to say that as soon as he entered the building he fainted. I didn't know what to think. I thought maybe coming in from the cold into a warm school? Rough-housing with friends? But fainting?? I rushed him to the hospital of course...and then began a series of visits that ended up with the same results.

The nose bleeds really scared me.....a normal person can stop a nose bleed within 3 to 5 minutes, but he had stubborn nose-bleeds and bled for 20 minutes or more. Hours of waiting and finally we would see a Dr. The doctor would look at his file and see that he had asthma and read what the previous doctor had said and repeated the same advice. 'Keep doing what you're doing...give him his puffer every 4 hours and keep a humidifier in his room'. Each & every time I left the hospital frustrated. On 2 occasions they burned his nostrils to cauterize the nerves...without freezing him.

One day he woke up with a bad nosebleed....this nosebleed was very stubborn....it refused to stop. His pillowcase was covered with blood and so was his sheets. He had dripped all over the floor to the bathroom...there was blood everywhere....on the tile, in the sink, on towels. I had enough!

We headed for the hospital. When I got there, a Dr. who was visiting noticed me. He said, "I only work on weekends, and I notice that you come here regularly with your grandson.....what's the problem? He looks like a fine, healthy young man!" Finally someone cared enough to ask??.....I told him that for several months now my grandson had nosebleeds that wouldn't stop, felt weak, loss of appetite, etc. Dr. Zaroukian said....."that's not normal.....let's do some tests."

He did some blood tests, and told me it would take awhile...so I could go home and have lunch and he would call me. I live 15 minutes from the hospital. I didn't get in the door to take off my coat, and the phone rang. The doctor said that a mistake was done in the lab and they needed to do more blood tests. Frustrated, we turned around and headed back to the hospital where he took more tests. Knowing it was past noon and we hadn't eaten all day, he suggested we go ahead home and he would let us know.

Exhausted and hungry we got home and there was a message on my phone. Please come back to the hospital....we have to do more blood tests. Well, at that time......I was more than frustrated. I actually called the doctor back and asked him angrily..."what kind of idiots do you have working there? Can't they even do a blood test right?"

He of course, apologized profusely. So back we went again. No, the idiots did the lab tests right. When the doctor saw the results of the test, he just couldn't believe his eyes....so he had me come back several times just to be sure!

He took me into a small room and asked me if I ever heard of Leukemia? I said of course, it's cancer......and then he proceeded to talk about my grandson's blood results and his platelet count and neutro-polys and the room was spinning.....and all I could say was "No..this can't be....except for the nosebleeds my grandson is a healthy boy! This can't be happening!"

But it was and it did! He advised me that my grandson had Leukemia and we didn't have much time......that I wasn't to go home...that I must rush...right now......right away... to the Children's Hospital. He had already called them.....they were expecting me! Dr. Zaroukian scared the crap out of me......you could see the worried look on his face!

I don't know how I got to my son's.......I don't remember driving, but I did! I had to go see my son in order for him to drive me to Ottawa...I remember him saying......'Mom, you've got to be kidding' and without another word he rushed us to Ottawa.

My grandson kept asking me what's wrong?.....and I kept saying...you keep having nosebleeds.....so they will do further tests to make sure you don't have these nosebleeds anymore. I thought for sure a big mistake was made.....after all the hospital I was at is a small hospital in our area........I was sure that in Ottawa at a big hospital....they would find a mistake was made...and we could go back home. Surely.....this was was just a big mistake!


When we got to the Hospital........sure enough there was a team from the Oncology clinic waiting for us......and rushed us through admitting. I don't remember much about the 1st 3 days......I know I met a lot of people.....my grandson had a lot of tests done but everything was hazy....I met doctors and specialists, social workers, anesthesiologists, etc......and they all talked at me and over me......with words that eventually would become commonplace but at that time I had no idea what they were talking about. AML and Leukemia, platelets, neutro-polys, chemotherapy, blasts and everyone seemed to have some kind of literature for me to read. They gave me books and pamphlets and print-outs and blood work.....I had stacks of reading material.....everyone I met shoved more information into my hands........and I couldn't understand diddly-squat. I just new the lights went out and the music died......and for quite awhile I was running on empty!