By Merel Duursma, Children’s Hospital patient and Cancer Survivor
I was in first grade when I failed the annual spring school vision screening. I visited multiple eye doctors, none of whom could fix my eyesight. Finally, I was referred to an ophthalmologist with Children’s Hospital of Pittsburgh of UPMC, who ordered an MRI. The day after my scan, my family got the call that changed our lives forever: The tests came back showing a tumor at the base of my brain. I was referred to Dr. Regina Jakacki, director of Neuro-Oncology at Children’s Hospital, and was then diagnosed by brain biopsy with an optic chiasm glioma — a brain tumor at the intersection of the optic nerves.
The next few years would prove to be trying and tumultuous for my family.
Each Thursday of second grade, I left school early to get chemotherapy treatments at the Marty Ostrow Hematology/Oncology Outpatient Center at Children’s, spending up to six hours a session there. I remember getting so worked up beforehand that I would make myself sick, but no matter how big a handful I was, the nurses were always so gentle and compassionate in caring for me.
Dr. Jakacki mapped out my treatment plan, oversaw my care, and monitored my case on a week-to-week basis.
After six months of chemo, I became very sick. I had lost too much weight, my kidneys were under stress, and my MRI scans showed no signs of improvement in my tumor. Dr. Jakacki decided it would be best to take a month off treatment so I could regain my strength. And then my next month’s MRI delivered the news we had been waiting for — the tumor was starting to shrink!
I went into remission the following summer. My Medi-Port, the catheter placed in my chest to deliver chemotherapy, was removed. While I would still need MRIs every few months to monitor the status of the tumor, life had pretty much returned to normal.
A couple of years later, in the winter of fourth grade, Dr. Jakacki called. My most recent MRI scans had not come back clear this time. She told my parents the tumor had begun to grow again, and that we would need to discuss treatment options. My parents painstakingly weighed the pros and cons of radiation therapy and its many possible and serious adverse effects. Ultimately, defeating the cancer growing inside my head was the priority, and so we blazed ahead.
We were sent to Dr. Melvin Deutsch for my radiation therapy. Every morning for six weeks, I spent 15 minutes lying on a table with a funny smelling mask over my face that directed the radiation to pinpointed areas of my brain. The treatments made me perpetually exhausted and I lost patches of hair, but I was just relieved I didn’t have to be poked with needles!
After radiation was over, the wait began — the wait until the MRI scan could detect effects of the radiation, the wait until the scary long-term effects of the aggressive therapy would manifest. Luckily, the latter never came, but six months later, the tumor was smaller on MRI. The cancer had again shrunk and I was back in remission, and remission is where I have remained for the last 10 years.
I’m still followed by Dr. Oscar Escobar of Endocrinology for monitoring the minimal long-term effects of the radiation therapy. The area of the brain that received radiation controls growth and hormone production, both of which were disrupted from the treatments. This summer, I have been cleared by Dr. Jakacki to come back for follow-up visits every two years with Hematology/Oncology.
I am so fortunate and indescribably grateful for the care I have received at Children’s Hospital. I know I wouldn’t be where I am or who I am today otherwise. Sometimes I look back and wonder how this could be my life, how I could be so burdened at such a young age, but yet be so lucky to come out of the experience so much stronger, and needless to say, with a pretty wonderful life! My experiences and the people I’ve met along the way have even inspired me to pursue a degree in nursing, with which I hope to help sick children.
I have seen the amazing things that the work of Children’s Hospital of Pittsburgh Foundation can accomplish. Thanks to its AYA Fund, the Adolescent and Young Adult (AYA) Oncology Program can provide opportunities, like its annual ski trip to Seven Springs, for teens who have been diagnosed with cancer to socialize, network, and find common ground. The AYA Program itself also contributes to this fund through its annual CureRock benefit concert, which will be held this year on May 11. I have been a part of and benefitted from this program for the past six years; I have made what I know will be lifelong friendships here. The experiences have been so therapeutic and the memories will stay with me forever.
Everyone has their story, their reason, and their motivation. Now you know mine. This is why I’m running for Children’s. My name is Merel Duursma. I’m a Children’s Hospital patient, I’m a cancer survivor, and I am the Pittsburgh Marathon.
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