My Leukemia Journey (So Far)
I am alive today because lots of people shared their blood with me. Probably more than 35 pints so far. And I will need more to come.
I don’t know many of the people who donated their blood, but I wish I could thank them personally. I wish I can tell them about all the other kids I have met over the last three years who would certainly be dead by now without other people’s blood.
Sometimes, I hear that people are afraid of needles so they avoid donating blood. I have to smile. I have been poked and stuck with thousands of needles over the last three years. They have hardly been felt when compared to never-ending procedures and treatments I have experienced like all the spinal taps every three months.
I was diagnosed with Acute Lymphoblastic Leukemia on July 31, 2011. I was 10 then.
We were living in North Carolina when I started getting sick. I was tired a lot and felt a lot of pain in my thigh. I was going to play baseball when I felt like I was punched hard in the leg. I almost fell, and I could barely walk.
My parents thought it might be growing pains. The last thing they thought was that a normal, healthy kid who played hockey, baseball and golf would have cancer. There were millions of reasons for the fever and pain that were not so serious.
We were vacationing for the Fourth of July back in Falmouth, where we used to live before my dad was transferred by General Electric, and that’s when I got a very high fever that lasted a long time.
The doctors in Falmouth sent me to Children’s Hospital in Boston. That’s when my life changed forever.
I call my cancer ALL instead of the longer name. It affects my white blood cells and bone marrow. I saw my blood in a microscope and how different it is from normal blood. I have learned to identify monocytes, lymphocytes and neutrophils.
I lost my hair, and so did my father and brother, Alden, who shaved theirs off to be like me.
I took a pill taking class because I have to take lots of them every day. Their names are long and confusing: PEG-L-asparaginase, Vincristine, Methotrexate, Doxorubicin, Cytarabine, Prednisone.
I had chemicals and steroids shot into me. But all the chemotherapy made my body stop making blood. It killed most of my blood marrow.
That’s when I needed lots of red blood cell transfusions and lots of platelets. Red blood cells carry oxygen from your lungs to your cells. Platelets stop your cuts from bleeding and stop you from bruising.
Without the blood, I was going to die. My mom and dad told me I have needed dozens of units of platelets and 35 pints of red blood.
So friends donated a lot, but they were not enough. That’s when we had a special blood drive to help me and other kids at Children’s Hospital.
After nearly two months in the hospital, I was able to go back to our home in North Carolina. Some days, I didn’t feel very good, and some days I did.
I began eight more months of chemotherapy at the University of North Carolina in Chapel Hill, about a three-hour drive from our new home down there. It was tough in a new place, and eventually my dad, whose name is Brian, asked GE if he could transfer back to Massachusetts.
GE was great. They were right by our side, and soon, we were living back in Falmouth around all our family and friends again.
That was May 2012, and I began treatment again back at Children’s Hospital and the Jimmy Fund Clinic.
Doctors installed a Port-a-Cath, which is a small device below the skin where my meds can be given or blood taken.
For that first year, I spent about 200 days in the hospital. Every day I faced needles, surgeries, chemotherapy and, of course, the blood transfusions that kept me alive.
Tyler Smith and his family
My mom, whose name is Paula, my dad and brother were all scared along with me.
I suffered many side effects from the chemotherapy. Some, I am told, are very rare. One was an infection inside my nose that required 10 hours of surgery. It was caused by an abscess that grew because my immune system was so weak.
Another crisis affected my brain and I went into a coma. When I came out of it, I could not remember things and even had to learn to walk again. Luckily I have gained back all my memory and am able to play baseball and hockey again.
When I was in the hospital, I got up and walked every day, or at least tried to. I just did not have the energy. My blood did not have enough red cells, which help you breathe. So, I was always huffing and puffing. I would take a couple of steps and have to stop and sit down. It took all my energy just to walk around the corridor.
But, lots of kids were worse than me. Some could never get out of bed.
During my time in the hospital that first year, I learned so much about blood and how all those helped me replace antibodies that were low, and sometimes almost gone. Without the blood, I would not have a strong enough immune system.
I just don’t call it blood. I call it lifeblood.
My illness has made me care so much more about things like school. I always want to go to class, even on days around when I have chemotherapy. I kid my friends. ‘You don’t want to go to school when you have a hang nail!’
With all the pain, I came up with a way to sort of laugh my way through it and make everyone including my parents stronger. When it really hurt, to take my mind off it, I would start shouting ‘Hee, haa, hoo, hoo.” That was like a comedy routine.
As much as I have gone through, I saw kids constantly going through worse. They all had to have blood transfusions all the time, everyone on the cancer floor.
People think you donate blood for accidents, but people with cancer always need transfusions.
I have been poked thousands of times. I wish I could just tell everyone who is afraid to give blood or don’t think they have time, that they should just suck it up. It’s a poke maybe every three months. It’s no big deal.
They may not have someone they love with cancer right now, but tomorrow, it could be their kid.
About the Contributor: Tyler C. Smith was diagnosed with Acute Lymphoblastic Leukemia at the age of ten. After three years, Tyler has completed chemotherapy, and his leukemia is under control. He is back playing his beloved hockey and baseball – second base and catcher. None of this would be possible without generous blood donations.