It’s hard to believe that it was 21 years ago when I was diagnosed with acute myeloid leukemia. Like many families, you and Dad had to “split responsibilities” to take care of the family, so while he continued to work, you spent your time in hospital with me or at home with Ben.

To say my treatment was rough would be an understatement. As my cancer was caught late, doctors gave me a 55% chance of survival at best. Being the type of kid I was, I made you promise to tell me if I was going to die, and then the day came when you had to keep that promise. A new doctor misread my chart and told you I only had days to live. I found out years later that you spent an hour outside my room with the unit social worker trying to figure out how to break it to me.

Later, in treatment, I became allergic to random donor platelets and because you were the closest genetic match, you provided every single transfusion for the rest of my three-year hospital stay. It got to the point where your arms became so covered in bruises that the hospital had to monitor how much you had given. You also became my bone marrow donor, which I know was one of the most painful experiences of your life. It didn’t end there though.

Just before my second bone marrow transplant, I developed that sudden “bone pain” and the hospital gave me a morphine drip to help cope. Unfortunately, this drug didn’t make me happy or drowsy like with other patients. Instead, it completely changed my personality and made me very angry and hostile to everyone. I would scream and threaten anyone that came into my room. Worst of all, I would scream at you. I would tell you how “I wish I would die,” or worse, how “I wished it was you instead of me.” I don’t remember much of that time in treatment but I do remember that you would just take all the verbal abuse I dished out. Instead of lashing out or fighting back, you would tell me how you wished you could take on all of my pain. Years later, you told me that you asked the social worker why I would say such things. They told you that I knew (subconsciously or not) that you would not abandon me. It must be true because you are still here supporting me.

Throughout those dark times, you still cared for and spoiled me. When I was wasting away from lack of nutrition, bald from chemo and had a feeding tube dangling from my nose, you still took me out on day trips to my favourite comic or video game store. You must have given the evil eye to anyone who looked at me funny because no one ever said anything. I even remember when you spent a whole month tracking down that one rare video game that I just had to play.

To this day, I still don’t know how you found the strength and courage to manage. I don’t think a normal person could go through all that and still offer the loving support and care that you did. I don’t know if I will ever be able to have children (due to the treatment I went through) and at this time I’m still too scared to find out. But I know that even if I’m able to show them half of the love and strength that you continue to show me, I will make one hell of a parent.

I’ll love you forever,
I’ll like you for always,
As long as I’m living
My Mommy you’ll be.

-Modified from Robert Munsch’s Love You Forever

Love Jamie

Christmas in the hospital

When I was diagnosed with leukemia at age 11, doctors said that my odds were only 55% at best. After two failed bone marrow transplants, I had what was then an experimental treatment called a lymphocyte transfusion. This meant that in total I spent around three years of my life in and out of hospital, which of course means I spent a number of birthdays and various holidays confined to a hospital bed listening to the gentle hum of my IV pump and the occasional mention of a code blue over the hospital intercom.

This story takes place a few months after my 2nd bone marrow transplant. My family and I had just moved from Edmonton to Newmarket and I was transferred to SickKids hospital.

I’ll be home for Christmas
You can plan on me
Please have snow and mistletoe
And presents by the tree
-Bing Crosby

First off let me provide some context for those of you who might be unaware of what goes on during and after a bone marrow transplant (at least according to my experience). Before the transplant the goal is to make your blood counts a blank slate with the intent of getting rid of whatever may have triggered your cells to become cancerous in the first place. This of course means that your white blood cell count is now non-existent…which means your body now has no way of fighting even the simplest virus. With no immunity left to speak of, patients are placed in “isolation rooms”. Think the boy in a bubble…but with a room. Once the conditions are right, and with fingers crossed, the patient is then given their bone marrow transplant.

If things go well, the patients’ blood counts start to rise and eventually they are moved out of isolation and into a regular room. In my case, my mother was my bone marrow donor and one day I awoke to see she had posted a sign in my room that said “Every day, in every way, I get more and more like my mother.”

I was not impressed.

Weeks passed as they often do and I was moved out of the isolation ward and placed in a regular in-patient room. It was now getting close to Christmas and my family started to ask about the possibility of me going home for the holidays. Unfortunately, things didn’t look good. My counts were below the hospitals required minimum levels. December 25th crept ever closer and the results were still the same. December 21st, 22nd and even the 24th passed and though my counts had increased they still had not reached the desired levels.

On December 25th we asked (maybe begged would be the better word) the hospital staff if it would be possible for me to go home and the answer was still no. So my mother, father and twin brother spent the day in hospital with me, waiting and waiting. Eventually, at around 4 pm, my counts came back…just barely meeting the minimum requirements, but just enough for staff to let me go home. Nothing was prepared and it was too late to make the traditional Christmas dinner. So while my brother and I fished out the Christmas crackers, my mother quickly whipped some spaghetti. All in all, I have to say that it was the best and most memorable Christmas I’ve ever had.

(The previous year when I was “high” on morphine due to bone pain, I told an Edmonton Eskimo player dressed as Santa to get the heck out of my room…that Christmas is a close second.)

Was it a Christmas miracle? I can’t really say, but unlike Bing Crosby’s song it wasn’t only in my dreams.