Just Breathe Kamaile

Our daughter, Kamaile is 17 years old and lives with cystic fibrosis. In September of 2016, we were given the news that the time had come to start exploring options and teams in regards to a lung transplant. After much research, we landed on Texas Children’s Hospital In Houston, Texas. Their pediatric lung transplant program is the best in the country with the highest success rate. We met with Dr. George Mallory and his team of doctors, surgeons and nurses for the first time in March of 2017. Kamaile went through a series of evaluations over the span of a week and would then be put in front of the medical review board for approval. Thankfully, at that time she had been deemed medically too well to be approved for transplant. So life went on and every 6 months since then, we have traveled to Houston for more evaluations to make sure Kamaile was well and to make sure she was ready (or not) to be listed.  Because with being approved for listing, it would mean relocating our family to Texas. For the next 12-15 months after that initial evaluation, Kamaile seemed to have a bit of a turn around. We had very minimal hospital stays, which meant a lot more time for her to do the things she normally couldn’t do. It was everything she needed....to be a normal teenager for once. If anyone knows Kamaile’s journey or knows anyone with cystic fibrosis, you know the toll it takes and the constant sacrifice given of themselves... just to be able to breathe. Dozens of daily medications,  blood sugar checks, 4 times a day breathing treatments that last for an hour or more. The amount of self care is endless. Fast forward to to the end of summer 2018. Since August, Kamaile has had 3 hospitalizations that have lasted 2-3 weeks at a time. For her 17th birthday, she was in the hospital. Unfortunately, IV medications have been the only thing that works at the moment, which entails hospital stays on Oahu. In November, we were called back to Houston for another evaluation. At the end of our time there, Dr. Mallory gave us his initial recommendation. It was time to relocate. By mid December, we got the official recommendation stating that, Kamaile had been approved by the TCH medical review board for transplant. On January 22nd, our family will be leaving Maui and relocating to Houston, Texas. As soon as we get there, Kamaile will undergo another evaluation and then be listed for a double lung transplant. Our time frame in Houston is unknown. The median wait time for a lung transplant at TCH is about 4-6 months. Although, there have been instances where patients have waited over a year for a donor. While we are there, Kamaile will be under the full care of Texas Children’s and Dr. Mallory and we will be anxiously waiting for the perfect donor for our baby girl. For now, we are savoring every moment we have left on Maui and Oahu with our friends and family. Our hope and prayer is that we will be back and Kamaile will be able to graduate with her class at Kamehameha Maui in May of 2020. Matthew, Kamaile, Nainoa and I appreciate everyone for the love, support and prayers you’ve sent our way over the years.