By: Trish Adkins
Before COVID-19, coronavirus and pandemic were commonplace words, we shared with you the story of Lakelynn. Lakelynn is 6 years old, a kindergartener in North Carolina and lives everyday with an inoperable sarcoma wrapped around the nerves that control her right arm.
When Lakelynn was first diagnosed at 3 years old, doctors offered her family very little hope. The tumor was inoperable and radiation was too dangerous because of the tumor location. While doctors worked to reduce Lakelynn’s intense pain, her family began searching for options.
And they found an option: a clinical trial at an Alex’s Lemonade Stand Foundation Center of Excellence hospital. Dr. Steven Dubois at Dana-Farber Cancer Institute was leading a trial for larotrectnib, a drug that had shown promise in tumors with the NTRK-fusion.
Lakelynn’s tumor had the NTRK fusion.
Lakelynn began the treatment. Her tumor shrunk, and her pain lessened. After two years on the protocol, Lakelynn stopped treatment. However, within two months, her tumor grew again. Lakelynn went back on larotrectinib, her tumor shrank and remains stable. She continued her monthly visits to Boston, over 700 miles away from her North Carolina home.
Then, the pandemic happened. And Lakelynn’s parents had to immediately figure out how Lakelynn could continue on the trial while avoiding COVID-19 exposure.
Lakelynn needed access to larotrectinib to continue to be stable.
Working with the medical team in Boston, the family was able to create a new plan for Lakelynn. Once a month, Lakelynn visits the pediatric oncology clinic at nearby Duke University Hospital for labs and a check-up. Then, Lakelynn has a telehealth appointment with Dr. Dubois and his team in Boston. Lakelynn receives her treatment, a liquid medication, via overnight mail the next day.
For now, this alternate system works. But there are some hardships. Lakelynn had to get used to a new hospital and a new medical environment. The change makes Lakelynn nervous. She misses her favorite nurse, who always guided her through pricks and lab work. There is a constant fear that she could be exposed to COVID-19 just by leaving her home.
“We were so nervous about being in the hospital and exposing ourselves to COVID-19. We were super focused on not touching things, controlling our body, keeping our masks on and taking this day on with unfamiliar faces. Sean, her favorite nurse, “sent his powers “ so her IV would go smoothly and she would be brave and courageous...and she was,” said Leslie, Lakelynn’s mom.
Lakelynn has also had all her scans postponed. Without imaging, her medical team is relying on Lakelynn’s lab work and her outward appearance to gauge the effectiveness of treatment.
Also, Lakelynn is home and isolated from friends and classmates. Her family decided to self-isolate early-on, isolating Lakelynn before much of the United States was on lockdown.
“The risk for her, with her little body fighting hard, was too great,” said Leslie.
Support Alex’s Lemonade Stand Foundation on #GivingTuesdayNow
We are so grateful to supporters like you who are looking for ways to help childhood cancer families during COVID-19. With the future so uncertain, now is the time to give!
That’s why Alex’s Lemonade Stand Foundation (ALSF) is participating in #GivingTuesdayNow, the global day of giving and unity on May 5, 2020, to raise funds for childhood cancer families who have been affected by COVID-19. Kids like Lakelynn can’t stop cancer treatment even though they are immunocompromised and at-risk if exposed to the disease. Getting groceries is not possible for some families. They need your help now more than ever.