I was born a healthy 8-pound baby in 1989. The second biggest of my 4 siblings. Around 2 years old my parents noticed my weight starting to decline, loss of appetite, low grade fevers and just an overall change in their toddler girl. My dad even said, I think she has Leukemia. The doctors said, “she probably just has a bug or the flu.” Then my 2-year-old stomach started to grow.
A blood test was done to reveal my white blood cell count was 525,000. Normal is around 10,000. My growing belly was all the white blood cells. I was diagnosed with a rare form of Leukemia called Chronic Myeloid Leukemia (CML). This cancer wasn’t just rare period; it was even more rare to be found in a 2-year-old. CML is commonly diagnosed in people in their sixties and now a 2-year-old has it. What now? Two options. A bone marrow transplant with a 3% success rate in children my age at the time, or a lifetime of medication. By lifetime they meant 3-5 years. I was supposed to die at 8 years old at best. My parents choose the lifetime of medication. They doctor told them “You’ll be sorry. The only cure is the bone marrow transplant.”
I started on Interferon. A nasty injection that left me tired, weak, and like I had the flu 24/7. I also could not speak clearly. I had a lot to say, but it wasn’t clear what I was saying. I was not meeting the milestones of being a toddler anymore. I was just trying to survive. The Interferon injections were done in my legs. 70 shots a month. But they kept me alive to make it to preschool.
I then made it to elementary school. I struggled through elementary school. While the other children were learning fractions and cursive, I was sleeping. My 2nd and 3rd grade teachers kept a bean bag chair in the classroom so I could sleep. Sometimes all day. I was in the school’s resource specialist program (RSP) throughout all my schooling. I had an amazing support team of teachers, friends and family and doctors. I had no clue I was any different than my peers. One day I asked my mom “Did you know I’m the only one in the school with cancer?” She thought I knew that. I thought all my peers went home after school, slept in the car on the way home, did their injections of Interferon then went to sleep to do it all over again. I also thought the regular bone marrow biopsies were something all my peers went through as well.
Fourth grade was really a great year for me. A breakthrough in medicine was in the works. A man named Dr. Brian Druker had just discovered a drug that could target the cancer cells for my type of cancer without targeting any of the good cells. My amazing mom had found all this out with the boom of the internet. She was in an online chat with other CML patients and caregivers and knew she had to find a way to get me on the trials. My pediatric oncologist, (the best there ever was), Dr. Ruki had not heard of these trials because they were so new. But she went to a blood cancer conference and spoke with Dr. Druker, and they discussed my case. By that time, I was ten years old so I didn’t meet the minimum age of 18 to be put on the trials. But I was also slowing dying. Interferon kept my cancer from quickly killing me. I was surviving not thriving. The doctors thought it would be best to fly me to Portland Oregon to meet Dr. Druker. First, I had to come off the Interferon so nothing could “interfere” with this magical new trial drug and my blood cell count needed to rise so I could qualify to take the drug. Off Interferon, I gained more energy, slept less, and started talking more clearly. People could now understand me. But I was still sick. Meeting Dr. Druker for the first time was amazing for my mom but just another doctor’s appointment for me. I didn’t know it would be life changing. I was 11, after all. We were in Portland for a month or two.
After a lot of ups and downs I was finally approved to start taking the life changing medicine STI 571. I was patient 53 in the phase 1 trials. One of three children in the trials. This pill was great! It wasn’t an injection but a pill! Sure, I throw it up for the first month, but I really didn’t mind. My mom and I flew back home, and my life really started happening. I was thriving on this new drug! Today it is known as Gleevec. It really paved the way for future CML treatment. Within 9 months of taking Gleevec, I was considered to be “in remissions”. Today we use the term “undetectable”.
Thanks to cancer research, I am living a pretty normal life. I am 31 now and doing all the things my parents never thought I would do because they thought I was going to die. I have been “treatment free” for 3 years. My last PCR was around 0.016.
I earned a college degree, got married, and I’m expecting a baby boy Spring 2022.
Thank you Dr. Druker for making my life possible.
My advice to you is:
- Live your life to its fullest even if you do not feel good.
- Don’t aim for your blood test to be undetectable. It is an unrealistic expectation that you cannot control.
- Don’t make Treatment Free a goal. Not everyone is a good candidate for treatment free. It was never a goal of mine. It just happened.
- Give yourself a break! Let your body rest! I work three days a week because that is what my body can handle and I’m grateful for that.
- But if you can’t work, that is okay too. Adjust to a new normal.
- Cry. Let it out!
- Don’t be afraid to ask for help.
Again, live your life! If you feel your current TKI is affecting your quality of life after adjusting to a new normal, there are other TKIs you can try to see if your quality of life improves.
I hope this helps some of the newly diagnosed patients find hope. Hang in there.
Mary Sullivan Sardegna