In August of 2017, our family moved from Colorado springs to Hawaii. It was a huge change for us as a family since had been living around my husband’s family for the past 5 years. We were excited for the new adventures of living the island life for the next three years.
Shortly after arriving, Riley became slightly lethargic, then she started to throw up almost every evening. After multiple trips to the doctor and the emergency room, the only thing that they could determine was that she was constipated. Then her left eye started to turn inward, almost like a lazy eye would. At the time, we assumed it was her vision making her sick and made her an appointment asap with an optometrist. After dilating her eyes, they were able to determine that it was not a lazy eye, and that she likely had excessive fluid built up in her brain. They instructed my husband to take her to the emergency room at Kapiolani Medical Center in Honolulu. They have the best and possibly only pediatric neurosurgeon on the island. I was in Florida for a class while all this was going on.
They immediately did a scan and determined that she had a tumor blocking the flow of spinal fluid. I got on a flight home and made it back in time to spend the night in the hospital with her before her surgery in the morning. The surgery was successful with near total recession. However, the tumors location had caused damage, and when she woke up she was unable to speak or move normally. After a few days of waiting on test results, they determined that she had Medulloblastoma.
Riley was in the PICU for almost 2 months, and another two weeks on a separate floor of the hospital. It took two weeks for her voice to return, but it finally did. She still has issues controlling her pitch. She has full body right sided weakness, so she has learned to use her left hand to eat and write. She is also unable to walk on her own. She has made significant strides and gets around the house on her own for the most part.
The biggest hurdle for us was being so far from his family. Had we stayed in Colorado two months longer, we would have had an amazing support system through everything. My mother does live on the island of Hawaii, so it has been helpful having her a 30 minute plane ride away as well.
She is the happiest kid I’ve ever seen, and almost never complains, even though I’ve told it’s okay if she does. She has been back in school full time and is doing very very well. I feel significant events like this either make or break a family. And although I truly wish she never had to go through any of this a it has brought us all much much closer. Her goal this year is to walk unassisted, so we spend a lot of time working with her. She also attends physical therapy, speech therapy and occupational therapy weekly.
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