Mary Stewart Witherspoon, my daughter, was diagnosed with FLT-3 ITD acute myeloid leukemia (AML) in July 2014 when she was 4 years old. She had been running a low-grade fever for about a week with a runny nose. Her appetite was not great, but she was also a busy kid. When my wife said she was going to take her to the doctor, it was really to rule out the flu or just stay ahead of whatever was causing the symptoms.
When she took her to the doctor, an eagle-eyed pediatrician noticed that she looked a little pale and ordered bloodwork. Again, we were not that worried. Mary Stewart, or what we affectionately call her, Massy, was our third child, so we were not helicopter parents. We put her to bed that night, but received a phone call. The lady on the other end said we needed to call an ambulance and have her taken to Stanford Children’s Hospital in Palo Alto, CA. To this day, I can hardly comprehend what was said. She changed her mind and decided that we could drive her, but we needed to leave ASAP.
When we got to the hospital, Massy got an IV and fell asleep while we waited. A young doctor finally came and changed our lives forever. The diagnosis, at the time, was leukemia. We didn’t know what kind, but the bad news would continue to trickle in during the coming weeks and months.
Massy was treated as part of a clinical trial, but along the way, as we learned more about the complexity of the diagnosis, we opted for the most aggressive treatment possible, which included a stem-cell transplant. It was brutally difficult in every way. From managing our jobs and our two boys at home, to dealing with the daily challenges of treatment – the tears, discomfort, stress, and uncertainty of future outcomes.
We eventually reached remission and walked out of the hospital on New Year’s Day in 2015. We were vigilant and hopeful. Regardless of all the hard work and tears, she relapsed. We were on a dream vacation at the beach in Florida, but it all came crashing back in. She woke up with a pain in her neck. We took her temperature and found she had a 102°F fever. The doctor assisting us couldn’t believe we wanted to run bloodwork and felt she was totally fine, but when the numbers came back the horrible news was confirmed.
After bouncing between local hospitals and frantic calls to doctors in California, she was airlifted to St. Jude Hospital in Memphis, TN. There, she was admitted and placed in a clinical trial. Doctors gave her a 10-20% chance of surviving relapsed (FLT-3 ITD) AML. But the clinical trial worked, and within seven weeks, her cancer burden was nearly zero. Nearly.
Next steps were to find a hospital that would do a risky second transplant. We found Seattle Children’s in Washington, and after a few days at home, we flew up to meet the team. They developed a specific plan for Massy, and we soon started the treatment plan. It included more chemo, total body irradiation (for the second time), and a mismatch cord-blood transplant.
We once again spent Thanksgiving and Christmas in the hospital, but this time, it worked. Sort of. As the days, weeks, and months passed, we became more hopeful. We finally passed a year, then two, and now Massy is on the verge of her 14th birthday!
We are so grateful for all the care we received and continue to receive. But as time went on, small health problems showed up and continued over time. Massy had stage 2 kidney disease, which meant she had to have lots of check-ups and drink copious amounts of fluid each and every day. She was then diagnosed with “knock knees” and had several surgeries to put pins into her growth plates. Later, her growth in general was noted at only 1 percentile, so growth hormones were layered in. Later, we found out she was ‘sterile’ and that was a tough day – for a little girl to comprehend that she would never be able to carry her own child. Then, we learned she would need both growth hormones and estrogen to get through puberty.
I am summarizing these events, but they happened over time…like the drip-drop of a slow leaking faucet. We would each hear the news, research, comprehend, accept, and then start therapy. Each of us, but especially Massy, had to continually make adjustments to life. Over Christmas holidays of 2023, we learned that her bones ‘didn’t look right’ – they were flattish on the ends, and the orthopedic surgeon suspected something was off. Again, we waited, but after a few months, we got a new diagnosis – multiple epiphyseal dysplasia. That means Massy will be lucky to reach a height of 4’10” and she will have (and does have) early-onset arthritis. It means she will have joint replacements. It means – nothing good.
Mary Stewart is our love, but it is really hard to see a 13-year-old get out of bed like an old person…she has a hard time moving, and even though she continues to play sports, it is not easy – like everything in her life. We are so fortunate she is here with us, and I want to be sympathetic to every parent who lost a child and would gladly trade places, but it is and will continue to be a challenging life for Massy.
Left: Massy and her mom. Right: Massy and her dad.
She takes estrogen twice a week and daily growth hormones. She has had four surgeries and at least one more planned. She has so many follow-up appointments at the hospital that it’s nearly a weekly occurrence.
But she continues to be a great student and tries really hard at sports. She loves her friends and her dog and cat. She did her first black diamond while skiing this year and is pretty good at downhill mountain biking.
Left: Massy skiing. Right: Massy mountain bike riding.
Despite all the challenges, Massy’s spirit remains unbroken. Her determination and resilience are a testament to her strength. We are grateful for every moment we have with her, and we remain hopeful for better treatments for future kids diagnosed with cancer.
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