Pediatric ALK Spotlight Interview with mother and caregiver Ashley Sitorius, Hampstead, North Carolina
We interviewed , mother and caregiver of 11-year-old Deliah, who was diagnosed with ALK-positive brain cancer when she was just 7. ALK can actually appear in many pediatric cancers as a driver mutation. Among many things, we discussed Deliah’s (and the family’s) journey in navigating this devastating diagnosis, how she has been able to advocate for Deliah’s treatments (some of them not officially approved for pediatric cancer), and her future hopes for pediatric ALK cancer. Read on for an impactful insight into pediatric ALK cancer.
Your young daughter, Deliah, was diagnosed with an ALK-positive brain tumor in 2019. What has been her journey with ALK brain cancer so far?
Oh man. I don't even know where to start. Deliah was initially diagnosed with two brain tumors both ALK+. She was just 7 years old. She is now 11. It's been a long, difficult, heart wrenching road. Deliah first had two brain surgeries. They both had lifelong consequences. She will have double vision for the rest of her life. She had many, many opinions through various hospitals about her case. My husband, Alex, was a mortarman in the US Marine Corps. He had lots of different exposures. Malaria pills, gas chamber, burn pits, anthrax shots, etc. He had two different deployments to Iraq and Afghanistan.
Deliah first started off with a year of "gold standard" chemotherapy once a week. Carboplatin and Vincristine. Hindsight is 20/20. I wish I knew more back in 2019. I wouldn't have ever put her on chemotherapy - I would have instead pushed for inhibitors. She was so very sick on chemo. She experienced hair loss, vomiting, low blood counts, and fatigue. Chemo kept her tumor stable for about a year. Then right before she was supposed to ring the bell, her tumor grew. I immediately had her chemotherapy discontinued. I spent six weeks researching ALK+. I found the FB support group. My eyes were opened to a whole new world. I posted for the first time and that's when Gina (Hollenbeck) reached out and asked me to call her. She told me all about Lorlatinib. Gina was my angel on earth. We waited for approval. It was granted. We were nervous but excited. Deliah's tumor shrank for the first time ever in 4 weeks on Lorlatinib. However, Deliah had massive side effects. These included psychiatric side effects - crying that she wanted to just die; massive 30lb fluid weight gain; shortness of breath; ground glass nodules on her lungs; going in and out of the hospital. We quickly had to reduce the dose multiple times. After seven months we had to discontinue Lorlatinib. She initially was placed on way too high of a dose (150mg). Her quality of life was greatly reduced.
Since completely coming off chemo and inhibitors, her tumor has remained stable for two years, but we worry every single day. Nowadays, Deliah gets an MRI every 3-4 months and has for four years. She is currently being seen by our local pediatric oncologist, who is still 3 hours away. We did and have reached out to the adult ALK+ second opinion doctors, but they really cannot help pediatric cancer patients. We've reached out to Dr. Yael Mosse at CHOP who specializes in ALK+ neuroblastoma but not brain cancer. She doesn't actually follow Deliah's case. She just recommended her Lorlatinib dose.
To date, Deliah has raised over $11,000 for ALK Positive through holding lemonade stands across the country.
What do you know now that you wish you knew back when Deliah was first diagnosed? What would you advise the parents of a child, or a young person newly diagnosed with ALK cancer?
I wish we did more research in the beginning. I wish we knew about the adult inhibitors before we agreed to chemotherapy. When I first asked, we were told by her oncologist we'd keep the inhibitors "in our back pocket." Please don't be afraid in the beginning to research and ask questions. As a mom, it's been emotionally, physically and mentally draining. I've recently been diagnosed with complex PTSD. My advice to parents of newly diagnosed children is, PLEASE get your child(ren) and yourselves into therapy ASAP. Celebrate the small mundane stuff. Turn on the music and dance. Create memories. Take pictures and videos of EVERYTHING. Talk about the good, the bad and the ugly. *Try* and make life as normal as possible. Share your emotions but make sure it's a healthy balance. Don't over share. That's what your therapist is for. Take that vacation. Go on that trip. Advocate more than you ever have. But most importantly, ENJOY life together and the time that you have.
You've had to do a lot of research and advocacy every step of the way (for example, TKIs for ALK are not currently approved for pediatric cancers*). How did you go about it all? Where did you start and how have you navigated your way through pediatric ALK cancer to date?
I've had to go off on my own and research ALK+. I've had to bring things to her team's attention. ALK+ pediatric brain cancer IS rare. I've had to be very assertive to get Deliah the proper care and attention. I just wish it was more widely researched in pediatrics.
What I’d advise others in a similar situation: research until your eyes want to bleed. Advocate as hard as you ever have in your life. Use your voice and don't take NO for an answer. Follow your gut instincts and intuition. They will never steer you wrong! Research and ask questions. Search Facebook and Google and read medical research papers. Take things into your own hands. No one cares as much as you do.
(*Editorial Note: The FDA has not approved any TKIs for the treatment of ALK Positive cancer in children, however . . .
1. There is currently a Phase 1/2 Clinical Trial at MSK looking at alectinib in children with either solid tumors or CNS tumors containing the ALK gene. NCT04774718
2. The 1 NANT trial found Loralatinib to be safe & tolerable in pediatrics with refractory ALK-driven neuroblastoma. )
Based on what you know now, what would be your best hope for children diagnosed with pediatric ALK cancers in the future? In terms of access to treatment, ease of navigating insurance and hospital protocols for pediatric cancer, availability of treatment options etc. What could or should be improved?
My wish and hope is for Pediatric ALK+ to be researched more. These kids deserve it. There's SO many gray areas when it comes to treatment plans for ALK+ children. I can't count how many times over the past four years we've heard the phrase "I don't know." Or "Her tumor didn't follow the books." Or "We can't grade her tumor." Or "Her case is complex, we just don't know." Do you know how frightening that is for a parent to hear? How heartbreaking? Pediatric patients have to go off of adult statistics and that's not fair. The average lifespan of ALK+ adult lung cancer patients is 7 years. Deliah is 11 years old. She's just a child who hit four years. I can't help but wonder.... does she only have three years left? Please help Pediatric ALK+ children. They deserve medication catered to them. They deserve a future. They deserve hope. They deserve light at the end of the tunnel. ALK+ pediatric patients deserve more help and attention. So often we feel left out and forgotten about. So often I feel that there's no light at the end of the tunnel as there are currently no answers and no cure as of yet.
Interview by: Christina Weber
