Sierra was born full term and without complications. I am a single parent, so my mom moved from out of state to live nearby to help me for the first year of Sierra’s life. That way, I could keep working, teaching public health courses to nursing students – and Sierra would have the benefit of two caregivers. My mom was thrilled to be a grandparent! I thankfully told my supportive friends that my daughter was a “dreamboat” of a baby – communicative, sweet, and calm. In May of 2017 Sierra had a series of fevers. My mom and I spent Mother’s Day in urgent care, and left with a vague diagnosis of “viral syndrome.” I took Sierra to the pediatrician 5 times, as her fevers continued and she grew pale, listless, and as her breathing grew more and more shallow. I slept next to her, waking frequently – I was worried she would stop breathing. Finally, we were sent to the Children’s Hospital of Philadelphia emergency room with a sinking feeling of dread. That night, the techs stuck her little arm so many times, trying to get blood for labs. She had a hemoglobin of 2.9 — fatal in most adults. The week of May 22nd, also the week of my birthday (May 28th – which I later learned is also ironically World Blood Cancer Day), my sweet, only child was diagnosed with Acute Lymphoblastic Leukemia (ALL) and KMT2A (MLL) Gene Rearrangement. Since that day, we spent 250 days inpatient in the hospital with possibly another 200 outpatient. Our first admission lasted 7 weeks. When we came home that first time in late July, my neighborhood felt like a world apart. After using up my FMLA, I lost my full-time job, ultimately going on unemployment. We both were on Medicaid (Sierra still is). I ended up on food stamps, and survived on the kindness and generosity of my friends, colleagues and family. My community set up a GoFundMe, cooked for us, made monthly donations to us, sent us thoughtful packages, and babysat in the hospital so I could sleep or walk. Their generosity has always given me hope and has buoyed my spirit – I will be forever thankful to them.
Sierra was diagnosed in May 2017, relapsed in May of 2018, had a bone marrow transplant August of 2018, relapsed in January 2019, and then had CAR-T in March of 2019. The FDA approved CAR-T for use in pediatric ALL in August of 2017. Since Sierra’s leukemia relapsed twice, she was in the group of kids with the worst prognosis. As a result of CAR-T, she has been in remission, but also has no B cells, requiring weekly infusions of immune globulin to protect her from infections for which the rest of us can get vaccinated. During the course of her treatment, Sierra had over blood and platelet 50 transfusions, she was on a feeding tube for over 2 years, she lost vision in her left eye due to infiltration, she experienced sepsis, an infected port, surgeries for 3 types of central line placement, fungal infections and awful skin breakdown, the partial removal of one of her ovaries, and countless infusions, types of medications and needles. She threw up and had diarrhea tens upon tens of times, and experienced painful mucositis for days and days. Over 200 care providers interacted with us, including doctors, nurse practitioners, ultrasound, x-ray, MRI and CAT scan techs, surgeons; occupational, physical, music, play and art therapists; medical assistants, and an enormous team of amazing, compassionate nurses. I had to give her countless medications around the clock at home, had to manage her PICC line, give her shots and now, weekly, ongoing infusions of immune globulin.
The losses are enormous – potentially her fertility, our long term stability, the normalcy of her childhood. Two years after CAR-T Sierra is still in physical therapy, though she can almost keep up with other kids her age. She cannot see in her left eye, so we got her protective glasses. Sierra continues to struggle with the impact of the feeding tube, and is reluctant to hydrate or eat the volume she ideally should. Just a month ago, we engaged with the feeding therapy team, to continue to try to address this.
My mom has had breast cancer for decades, so we are always on our toes. Partially due to her illness, partially due to my love of nature and the outdoors, my moms illness prompted me to study environmental sciences, nursing and public health – I wanted to prevent illness, and felt like our industrialized world was contributing to so much sickness. Along with my mom, I have the CHEK2 breast cancer gene, and I wonder: what level of pollution can my body tolerate before my own cancer experience is triggered?
I am so thankful for your effort to focus on prevention – while we benefited enormously from all the efforts to find a cure, and while my daughter would not be here without that science – I am hopeful that we can also focus on prevention to drive down the case numbers again. Childhood cancer can have so many long lasting impacts – working to help everyone thrive in a healthier environment makes common sense to me.
