In October 2017, our family, a party of four, left home in Skagway, Alaska, to visit family in Washington. We thought we'd be gone a couple of weeks, but did not return as a family for almost 9 months. The day after Thanksgiving, after numerous doctor visits regarding unexplained head pain, Danica, 21 months, received an MRI, and doctors found a large mass in her brain. She was taken by ambulance to Seattle Children's Hospital where doctors were able to completely remove the golf ball-sized tumor, and Danica suffered no deficits. Unfortunately, the pathology report showed that Danica had grade IV brain cancer Atypical Teratoid Rhabdoid Tumor (AT/RT), a baby brain cancer, which carried a 30% survival rate. We moved into Ronald McDonald House--mom and dad, big brother Harrison, and Danica. She began an intense regimen of chemotherapy that saw her doing six rounds (five months) of chemotherapy, including three stem cell transplants. With some scary happenings along the way, the chemotherapy was working. Just after her last cycle of chemo,...baby brother Hawkins was born! Radiation began quickly; he was one week old. Dad and big brother had to pop back to work in Alaska for 8 days, while mom, Danica, and little bro went every morning to the proton center, and Danica became used to her daily routine of propofol and "rocket ship," and even began to love her radiation helpers. She finished her treatment and was finally able to return home! She remembered her house, and for the first time since she left home, she slept alone, in her own room, in her own bed.
But coming home was not all roses. All the calendars in the house still said October. There were so many little "teething" remedies around the house that made mom sad to realize what a slow moving train wreck that brain tumor was, first annoying Danica, then causing her discomfort, then pain, then...well, you know the rest. Danica now has to return to Seattle every 3 months for two years, and will be followed by numerous different types of doctors monitoring her for recurrence, and for an extensive list of side effects.
In October, her second scan after treatment, doctors saw something on the MRI that appeared to be regrowth. There are no protocols for AT/RT relapse, and only a handful of kids who have survived it, so this development was devastating to hear. We were told they would rescan again in 3-6 weeks, so we just had to sit uncomfortably waiting, knowing a single MRI could change everything. So, while Danica was symptom free, we felt if we could not add days to Danica's life, we were going to add life to her days. We hopped on a plane and took her to Disneyland and raked in as many smiles and giggles as we could get. (It would never have been enough.) When we returned, the follow up MRI was not reassuring; it showed more inflammation, and Seattle Children's Tumor Board was still arguing about what it was like Democrats and Republicans - was it tumor, or scar tissue? Neurosurgery was convinced; she was in the books for a craniotomy. Oncology, was less sure, and they gave us so much hope. Truth be told, we weren't convinced it was cancer anymore, but everyone agreed the stakes were too high to leave it alone, so little lady got herself her third brain surgery, and she handled it like the toughest little prize fighter you ever saw. Two days later, the pathology reports came back and the news was no cancer cells. Not a single one.
We are home once again. We thank God for his providence and mercy, the doctors for their incredible skill and dedication and for giving us our baby's life back, and the family, friends, and generous organizations like Katie’s Handprint who have made it possible for us to focus on our family and take on this incredible Odyssey. Aside from the necessary scan trips...we hope to never do any of this again.