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.