Evan MacNeil's Personal Profile
September 2011: Evan, nearly 14 years old
To any child just diagnosed with aplastic anemia, remember that you are not alone. I hope that my thoughts can help you understand that it's OK to feel nervous or scared but believe it or not, this journey is going to help you become a stronger and braver person!
I remember when my parents kept insisting that something had to be wrong with me because of all the huge bruises I kept getting all over my legs. They seemed worried but I felt fine! After a while, I could no longer convince them that I didn't need to see a doctor. I still felt fine but the truth was that I realized that none of my friends had bruises like me. Looking back, I did feel more tired than usual but I thought it was normal as we got "older". It only took a trip to our hospital emergency room and a needle poke for some blood work to realize that I was sick. My mom is a nurse and she knew right away that my low blood counts meant something serious. I remember my parents talking quietly to each other and then turning to look at me with tears in their eyes. For the first time, I felt scared and told them so. There would be other times in the next few weeks that I would catch my parents upset or crying but pretty soon after that, my parents realized that I only felt scared or worried when they felt scared or worried. We decided that we would put our game faces on and and try and think positively and be brave. I was always allowed to ask them questions and that was one of the best ways for me to not worry so much. I felt that the more I knew about what was going to happen or how I was going to feel, the less worried I would be. My nurses and doctors would also let me ask questions and my parents always included me in any discussions they would have. They promised me that they would always be honest with me, even if what they had to say was scary because I was ten years old and could understand a lot.
For some reason, after I found out that I was sick, I became very worried that I would have to have surgery and be cut open. I guess I just connected being very sick with needing an operation. Everyone reassured me that I wouldn't need surgery so when I was told that I would have to be put to sleep to have a bone marrow biopsy and again to have a special medicine port placed in my chest, I became very worried. After the bone marrow biopsy (I would later go on to have two more), I woke up to find that, just like my parents had told me, I had no cuts or stitches. I was just a little sore in my back but I barely noticed because I was so relieved to have made it through that procedure in one piece! The medicine port "procedure" was a bit more like surgery because when I woke up, I did have a small cut with a few stitches just under my collar bone in the left side of my chest. But once again, I barely noticed the discomfort because I was so relieved to have it done and over with. By the time I would need to have my port replaced with a broviac (two skinny tubes that came out of my chest for medications and platelets and blood) to get ready for my bone marrow transplant, I didn't even sweat it! I knew it would be over quickly, I knew I would have a little tenderness that would get better with some Tylenol and the best part was that I knew I would get as many popsicles as I wanted!
Having to get my finger poked every week for blood work and having a needle put into my port when I needed platelets or blood wasn't fun and at first I was quite nervous waiting to get these things done but we realized that we could put numbing cream called Emla cream on the skin over my port and that made a huge difference to me. I no longer felt nervous to get my port accessed and the finger pokes – well, they just became a routine that I got used to. It was good that this happened to me when I was ten rather than say 3 or 4 because even though I didn't like having these things done to me, I knew I had to cooperate with the nurses and doctors and my parents because they were working very hard to get me better. I remember feeling very bad for the younger kids at my clinic. They were too young to understand what I did – that working with the doctors and nurses instead of fighting them was the only way they were going to start feeling better. I made a lot of friends at clinic, some younger than me and some older and we were all brave in our own way and we all did the very best that we could.
Clinic would be long and boring most of the time. I would always bring my PSP so that I could play games to keep me busy. Clinic also had an Xbox and PlayStation and lots of games and toys for the smaller kids. If I needed platelets or blood, I would always get medicine to keep me from getting an itchy rash. This medicine also made me sleepy. I didn't mind because by the time I would wake up, I would be feeling more energy from the red blood cell boost and it would be time to head home. I actually liked getting the transfusions because it gave me more energy to play with my friends.
Which brings me to another point. Unfortunately when your white blood cells are low, you can't go to school. Altogether, I missed about ten months of school. That was really hard at first because I missed my friends. I had a teacher come to my house to teach me math and English and that was actually a lot of fun. I really liked my teacher and we laughed through many of my lessons! After a while, I got used to being out of school and I just reminded myself when I felt sad that I had to be home so that I could remain safe and I knew it wasn't going to be forever. I knew that if I did what my doctors and parents said to do and cooperated in every way, that I would get better quicker. So that's what I did.
By the time we knew I had to go to transplant, I had already been sick for 8 months and was pretty used to the routine. Once again, with something new to face, I looked to my parents for their reaction. They were so thankful that I had a matched unrelated donor and told me that not everyone who needs a transplant has a match so I felt very lucky. By now, my parents had had 8 months experience coping with my illness, so they had gotten better at handling things too! They felt confident and hopeful and therefore, so did I.
Transplant wasn't easy, I'm not going to lie. For the first time since I found out that I was sick, I actually felt sick. Really sick. The chemotherapy I had (to get rid of my old bone marrow that didn't work to make room for my new donated bone marrow to come in) left me sick to my stomach, exhausted and unable to eat. My taste buds didn't work right and everything tasted weird. The thought of eating food, even my favourites, made me feel so sick. The good news here is that the nurses kept trying different medications until that sick feeling went away. I still couldn't eat, but I started feeling better. I slept a lot in those days while I waited for my new bone marrow to grow and that actually helped pass the time. I had to be in a little isolation room for 26 days. If I had been told that before, I would have said there is no way I could handle that much boredom. But you know what? I actually came to enjoy my time in that room. It was very special time that I spent with either my Mom or Dad. (I could only have one parent at a time in that room.) We watched movies together and played video games together and having one of them sleeping in my room with me comforted me a lot. The medicines made me lose my hair but we knew that ahead of time and my parents and I didn't care at all about that. We felt it was a very small price to pay to get well. All in all, I was in SickKids for 6 weeks and that time actually flew by pretty quickly.
Once I got home, I still had to stay out of school until I was 6 months post-transplant. I had to get blood work taken once a week then once a month. I was able to get my broviac out after 7 months and by that time, I was off all medications. Some of the medications tasted terrible, but taking what I had to when I had to played a big part in why I am well today. I had a "get 'er done" way of thinking and it worked!
I wish you the best in your journey and to quote Christopher Robin as he said to Pooh, "Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think."