In This Family, No One Fights Alone: The Sapien Family
In March 2019, the Sapien family moved from Largo to Carrollwood. They bought a great house that passed inspections and they were ready to settle into their new lives. Unfortunately, things unraveled so quickly in ways they would never have imagined. After only 3 weeks in the house, it started falling apart; the roof began leaking, hundreds of gallons of water pouring into the front room from the foundation, the tube that brings water to the fridge dispenser burst in the wall destroying their kitchen. And that was just the start of it. Soon, their new dream home became a money pit and their new lives would never be the same.
The following week was their older son Landen's 7th birthday party. They noticed a gland on his neck had swelled up but he didn’t seem bothered by it. He also had no other symptoms. They took him to the walk-in clinic where they said he was negative for strep and flu but asked about a family history of leukemia (which there was none.) About 5 days later he was seen by his new pediatrician for his 7-year-old check-up. When Amy, Landen’s mom, asked about the swollen gland, he said it was most likely tonsillitis and not to worry. He prescribed some antibiotics and sent them on their way.
Four days later the family was picking out a fish for their younger son, Corben, who was 2 at that time. Landen suddenly collapsed in the pet store. He turned grey and his eyes were rolling back into his head. Landen's Dad, Callen, scooped him up and drove everyone around the corner to St. Joseph Children's Hospital. Everyone thought it was a reaction to the antibiotic or perhaps because Landen had skipped breakfast. It was neither.
Within two hours the doctor disclosed that Landen had either leukemia or lymphoma, as well as a large mass in his chest which cut off his blood supply causing his episode. Landen was immediately admitted. The next two days were a blur. It was determined that Landen had ALL T Cell Leukemia which is a less common form of Leukemia requiring 3 years of treatment, instead of the usual 2 years, and much more intensive chemo. It also carried a lower prognosis for success.
A port was immediately placed and a heavy chemo regimen started by day three.
The first 9 months of treatment are terrible. Landen blew up from steroids which caused intense joint pain and eventually the inability to walk. A tiny pediatric wheelchair was sent to the house. He became incredibly frail and thin, so thin he looked famished. Doctors debated placing a feeding tube to help with nutrition and weight. His immune system hovered at zero for most of the time rendering him essentially an HIV patient. He had a teacher come to the house but often spent his time talking or snuggling with her as he was too exhausted to do much learning. Callen's parents stayed at the house during the week to help with Landen so both parents could continue to work and keep insurance in place
Additionally, during these 9 months, the roof was replaced and the house was sealed for water intrusion. The kitchen was ripped out and left that way for the entirety of that time. The family was forced to wash dishes in a utility sink and cook on a single hot plate. They were forced to avoid people for fear of Landen's immune system. It was a very hard and sad Christmas eating pizza. The kitchen was finally completed in Spring 2020. In May 2020 Callen touched a spot in the bathroom and his hand went through the wall. More mold. So the master bath and closet were ripped out and remained that way until Sept 2021 when they started to finally put it back together.
Just as they thought they were reaching the end of the worst part of treatment their next curveball arrived. Amy had skipped her "Happy 40th B-day go get your mammogram" appt in October 2019. She thought she would wait till maintenance treatment for Landen. Instead, during the spring of 2020, she found a lump in her left breast. Many mammograms, biopsies, and MRIs later she was diagnosed with Invasive Lobular Carcinoma. She underwent a mastectomy as the first wave of COVID arrived. She was not able to get a bilateral mastectomy because it was considered "elective." Callen, Landen’s dad, dropped her off at Moffitt for her surgery and turned around to take Landen for emergency blood and platelets. It was surreal.
Over the summer of 2020, Landen transitioned to maintenance chemo: daily oral chemo, IV chemo monthly, sedation chemo in the form of a spinal tap to shoot chemo into his developing brain. Additionally, he has to undergo breathing treatments for mold-induced pneumonia and high doses of steroids for 5 days every month.
His hair grew back and he was able to attend Plato Academy virtually and then eventually Learning Gate Community School virtually. Just when he should have been able to re-enter society COVID took it all away. Amy did 12 weeks of chemo and lost her hair just as Landen's was growing back. Sometimes they would have concurrent chemo and would lay on the couch together - too exhausted to do much. Amy continued to work full-time at the VA as a social worker with paralyzed Veterans during this entire time.
In Spring 2021, Amy underwent a hysterectomy. By Summer the family was hopeful about the course of COVID. Numbers were going down and they felt okay sending Landen back to school in person with a mask. As we all know we had a reverse course for COVID numbers and his school was not enforcing masks. After a month he was back home again with Amy quitting her 11-year career partially to start homeschooling the boys.
Amy is very involved in the Pink & Gold communities serving as a board member for a childhood cancer nonprofit PREP4GOLD and working with a researcher.
Landen is an incredibly smart and empathetic person. He likes geocaching, pokemon, trading penny stocks, science, paleontology, geology, his tarantula "Spiderman" and his dogs River and Storm. Landen has 13 more months left of treatment and remains immune-compromised.
A few words from Amy, Landen’s Mom:
It’s the end of Sept now and the boys will likely remain home. The bathroom is finally being put back together. Landen still has until Nov 2022 before he finishes treatment. A cold or flu can be as dangerous to him as COVID. We stay in our bubble. The boys are isolated and that takes a toll on them. I plan to write a book, "Stuff you can't make up" because every time we turn around there is a new obstacle. Our family has two mottos - Just keep swimming & Being brave isn't about not being scared - it’s being scared and doing it anyway.
Our unsung heroes are our in-laws who quit work to watch the kids so we could keep working. Our younger son Corben, who will be 5 at the end of October, has no idea what a normal childhood is or what it would be like to play with other kids. Callen, the amazing head of our family, is always able to keep things light, willing to be our clown, and capable of rolling with the punches no matter how hard they are or how often.
Thank you for caring about us and the childhood cancer community. Every child has something they want to be when they have grown up. Not every child has that opportunity. We look forward to better days when we aren't "famous for having terrible luck." Your generosity will help us get back on that path after the emotional and financial impact these past two years have taken on us.