It can be challenging to see through to the other side of kicking cancer. Survivors of childhood cancer are remarkable people who inspire hope and courage for those still fighting. We want to highlight their stories in hopes that you will find encouragement, too!
Reena Shah found herself diagnosed with CML (chronic myeloid leukemia) in 1997 at the age of twelve. This specific type of leukemia is fairly common in adults, but rare in children. It is a type of blood-cell cancer that begins in the bone marrow. CML is a cancer that was once ultimately fatal, but now, thanks to modern medicine, is nearly always treatable.
However, those treatments can take their toll.
The full tenure of her treatment took place at St. Jude’s Children’s Hospital in Memphis, Tennessee.
What was your experience with childhood cancer?
“The experience of being a kid with cancer is isolating. For adults too, but for kids particularly, especially when you’re immunocompromised.” Reena remarked during our chat over the phone.
“Growing up in Illinois, and being all the way in Memphis there was geographic and social isolation. It was painful, excruciating at times. Really dramatic changes go on in your body. [At age 12], I was lucky to be old enough to understand the treatment. Rationalizing why you have cancer is another thing altogether, but I could understand what was happening.”
One of the primary treatments for Reena involved a bone marrow transplant.
“It’s the one organ you don’t have to die to donate and it grows back on it’s own. The transplant itself is just a 50mm syringe,” Reena explains.
In other words, a bone marrow transplant is far less invasive than other types of transplants. However, that doesn’t mean finding a match is easy.
“Because my family is of mixed ethnicity — my father is from India and my mother is American — my direct siblings were not a suitable match and we had to search in the registry. That can take awhile depending on your ethnic background and genetic profile. Your most likely match will come from your ethnic genepool, your community.”
Reena eventually received a transplant from a suitable donor. A year after the procedure, they were able to break anonymity and meet. Not everyone is so fortunate to build a relationship with their donors, but Reena did. They even attended one another’s weddings years later!
As an adult, Reena has dedicated her time and efforts to fundraising for St. Jude and passionately registering people for the bone marrow registry Be the Match
“It’s free, it’s a cheek swab, it puts you in the registry,” she says. Reena then explains why it’s so important to register, “African-Americans have the hardest time finding a match, along with Latinos and Native Americans.”
Because finding a donor match can be challenging, it’s particularly important for ethnic minorities to register. Bone marrow donation demands little from the donor — after all, bone marrow regrows in a span of weeks to months. You can give marrow and help save the lives of people like Reena.
What was the most important source of support for you during treatment?
“Family was number one for me. I wasn’t in any support groups [at the time]. My dad is a physician, so he was a great support. Our Indian community in our hometown [in Illinois] and St. Jude provided very supportive environments. Not only is St. Jude a world-class medical institution, but they pay for what insurance doesn’t. It wasn’t as stressful as it could have been because of that.”
Of course, there were challenges for Reena and her family.
“Dad was still trying to work, mom was with me in Memphis. My brother was going off to college. There was the concern of survival, too. It’s always in your mind, even when you’re not directly acknowledging it. There’s a lot of careful watching and waiting.”
How important were support groups in your life? Do you still engage with them now?
“St. Jude had a lot of support built in, even though there weren’t formal groups [at the time] that we were aware of. In this day and age, with online connections, it’s easier and so helpful.”
Today, Reena is a part of Imerman Angels, an organization that connects cancer fighters, survivors, and caregivers with support from those who have been there. Reena is a mentor in that organization, where she answers questions about different treatments, commiserates with others, and generally offers her support and wealth of knowledge as someone who has been through cancer treatment.
“As an adult, one thing that’s common for children with cancer is secondary carcinoma.” Reena explains, “A lot of patients go through different surveillance screenings. I was diagnosed with a kind of breast cancer [two years ago], caught early. I’ve joined support groups online and in-person since. They’re so much more accessible than they were twenty years ago.”
“I’m a huge believer in sharing information and experience. Cancer is really scary, so any way you can shed light and demystify it for other people, the better. This year, I started grad school so my activity is limited.” Reena says, “But it’s so helpful to be able to let people know about different techniques, like nerve blocks that reduce the need for opiate intakes, post-op garments that work well, or the fact that insurance will cover a lot of these things. That’s information I really like to share with people.”
Ultimately, Reena says that “Support groups are really great for survivorship care, through the whole spectrum of the experience. They help people get to where you are. I would not be where I am in life without people...strangers who donated, the charity events, the strong community...The pipeline has reached me, and you have to pay it forward.”
Did having cancer influence your career and education decisions?
“Absolutely! When I was in high school, there were potential breakthroughs in medical research. But it was very politicized. I wanted to be a politics major as an undergrad, not to be a politician or lawyer, but maybe to work with international organizations. But I was the kid who was a likely candidate to go to medical school.”
Of course, her plans changed. “After college and after the Great Recession, I felt my actual calling to medicine. I had excellent PA (physician assistant) care at St. Jude, and PA has played a critical role in patient care. It really resonated with me, so here I am going through finals week at George Washington University in D.C. in my second semester in PA School!”
What would you say to kids who are facing cancer now?
“It can be really hard some days. It can be very physically painful. You can be run-down. You can start to question why me, what did I do…” Reena explains, “But my dad used to have a great saying. ‘Tough times don’t last, but tough people do.’ Kids going through the cancer battle are some of the toughest I know. There are so many wonderful opportunities that lie ahead, especially for someone with the experience of cancer treatment. You might not be able to see it. But surviving cancer is a great gift and helps define who you are.”