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!