We often say that when a child is sick or injured, families spend all of their energy and resources on trying to heal their child. These are not just words, they are the truth of how so many of our families come to find themselves staying at a Ronald McDonald House (RMH). The Hemmingway family from Mobile, Alabama is one of these families whose journey to care for their daughter, Sophie, took some strange twists and turns.
It all started in 2014 when two-year-old Sophie was playing outside with her dad Jonathan and the family dog. Sophie was knocked over by the dog, and she got up feeling sore. Thinking nothing of it, Jonathan put his daughter down for a nap. When she woke up, she couldn’t walk and complained of being sore. Jonathan and his wife Lyndsi took her to a pediatrician, who told them that Sophie had bruised something and that there was nothing to worry about. A week later the same symptoms reappeared, and the doctor ordered tests that came back normal. The doctor thought it might have been juvenile arthritis, but he was able to rule that out. The pediatrician arranged a conference call with a few colleague specialists to discuss Sophie’s issues. Even as the family was preparing to drive to Birmingham, Alabama for further tests, one of the doctors on the call asked if Sophia had been tested for leukemia. The pediatrician immediately called the Hemmingways and asked them to go to their local hospital emergency room and have Sophie tested. The results were positive, and now the family had a small piece of a large and very scary puzzle.
Once Sophie’s diagnosis of leukemia sunk in, Lyndsi suggested that the family move to St. Petersburg, Florida where she could be near her extended family and a have a world-renowned children’s hospital nearby. Jonathan is a machinery technician in the Coast Guard, stationed in Mobile. His command and crew were incredibly supportive, coming to the hospital each evening to see Sophie and show support for the family. When Jonathan asked for a transfer, his commander said he would do everything possible to make it happen.
Meanwhile, the parents had to get their sick daughter to St. Petersburg. Fearing they would have to drive her all the way themselves, they were relieved to get permission from their insurance for an air ambulance to All Children’s Hospital (ACH). The hospital sent their own team to pick up the family and fly them to St. Pete, where they immediately admitted the toddler. The medical team at ACH was very helpful, giving the family a “road map” for treatment. This plan included an introduction phase, chemotherapy, and bone marrow testing. Because the bone marrow aspiration test showed leukemia cells, the doctors put Sophie into intensive chemotherapy.
Jonathan flew home a few days later to pack up the family’s household. They still had to move to St. Pete, and they had a large dog and a houseful of items. To use the phrase “just get it done” doesn’t quite capture what Jonathan must have gone through during those many hours of packing and driving by himself back to Florida, worried about his child and his career the entire time. Thankfully, the Coast Guard was sympathetic with the whole process. Jonathan found compassion and understanding at his new post in Florida, where they created a new position to enable his transfer.
During this same period, Lyndsi and Jonathan had been trying to get pregnant for a second child. Once they learned Sophie had leukemia, they put aside those plans to focus on their daughter. But in a strange twist of fate, they found out that Lyndsi was pregnant while Sophie was completing her introduction phase. This new baby would play a very important part in Sophie’s recovery later on.
Little Sophie had endured multiple treatments and chemotherapy in ACH, but nothing seemed to work. Sophie lost her hair several times during this process, but her daddy made her smile by shaving his head to match hers.
The medical team presented the family with options, which included an even more intensive round of chemo or a bone marrow transplant. They recommended a bone marrow transplant (BMT) as Sophie’s best chance for recovery.
When Lyndsi was five months pregnant, the family met with Pediatric Oncologist Dr. Petrovic, her assistant, Maddie, and the ACH transplant team. Lyndsi knew they were having a boy and were hopeful he could eventually be the bone marrow donor for Sophie, but the doctor cautioned that siblings only have a 25% chance of match. However, because that remained a possibility, the parents decided to postpone Sophie’s bone marrow transplant until her little brother could be tested after birth. Both parents were tested, but neither was a 100% match. There was time to wait, though, as Sophie needed to go into remission from the cancer first and stay in that phase for at least three months before the transplant could be completed. Because of this requirement, Lyndsi would be eight months pregnant at that point. . There were four bone marrow matches for Sophie in the database as well, so the family had a backup plan in case baby Landen wasn’t a match.
When Jonathan and Lyndsi first realized that Sophie would have a BMT, he contacted Mark Silver, the bone marrow database coordinator at ACH, to set up three bone marrow drives. The test to see if someone is a match is a simple cheek swab, which is analyzed for further use. Jonathan and Mark worked together to recruit potential donors for the drive, and they were able to get 522 new people into the database, including many of Jonathan’s military contacts. This was a much greater return than the 22 people Mark usually gets during such drives.
In early December 2014, Sophie finished her BMT prep, which included chemotherapy and a head to toe physical to ensure she would be a good candidate for the transplant. Baby Landen was born on December 30, 2014, and his cord blood was immediately sent for bone marrow testing. On New Year’s Eve, the family got wonderful news: Landen was a match for Sophie! A feeling of hope and gratitude, mixed with worry, enveloped the family.
Sophie was finally ready for the big day, her BMT. After the transplant, she needed radiation therapy that is not available at ACH, so Jonathan spent his days traveling back and forth with her in the ambulance to Florida Hospital for treatment while Lyndsi cared for their newborn son. The family stayed for 40 days at St. Pete East during this stressful time.
Sophie’s BMT appears to be successful. The doctors say that she looks healthy and that her body is adjusting well. Before the leukemia diagnosis, Sophie had also been diagnosed with high functioning autism, making her very shy and reserved and causing her to only speak a few words here and there. Now, she is tolerant of new people and is more outgoing, putting sentences together and speaking to strangers. Along with her other treatments, Sophie has been receiving behavioral and occupational therapies, which seem to be helping her progress.
It has been a long journey for the Hemmingway family, one in which they relocated from Alabama to Florida, cared for a sick child, and gave birth to a new one. They also became very familiar with RMH, having stayed a total of 57 days on two different visits. Like so many of our families, Jonathan and Lyndsi had heard of RMH, but they never could have imagined they would end up staying in one. They are amazed by the St. Pete Houses and have become big supporters of RMH. They say that RMH has made a big difference in their lives, and we know that to be true.