Naia’s Journey Through Leukemia

On 2/22/20, Naia was diagnosed at UCSF Children's Hospital in SanFrancisco with a very rare and aggressive type of Leukemia called MPAL. (Mixed Phenotype Acute Leukemia.) This means that she has 2 types of Leukemia which makes it difficult to treat, and so rare that even the most up to date Oncology facilities are still figuring out the best plan for success.  She was started on a chemotherapy protocol which seemed promising at first, but it ultimately failed and the Leukemia came back aggressively within the first 3 weeks of treatment. The Oncologists switched therapies, and added targeted therapy drug for the specific gene mutation (FLT3) that causes the Leukemia to multiply so aggressively and not die like a normal cell should. 


  Naia has been in the hospital for 7 weeks now She is into her 3rd week of the new chemotherapy protocol and headed to a Bone Marrow Transplant as soon as possible, as soon as they find a matched Donor, (given she is in remission and they find no cancer in her bone marrow.) The SOONEST this transplant can take place will be the end of May or early June.  They had an insurance bump that caused there to be an unfortunate pause in the launching for the search for the bone marrow match, so once this is officially started, they have told them that it typically takes 8 weeks average to get to transplant. Until then she will have to stay in the hospital and continue chemotherapy to keep the Leukemia from coming back in 4 week cycles.  Even if this goes as smoothly as possible, (she rides out the gnarly side effects, gets any infections managed quickly, gets fully into remission, AND her body accepts the transplant) this will be a VERY long and winding road for her and her family. 


 Naia, with a blood cancer, and being 100% neutropenic (meaning she has NO immune system, and is an open door for any  pathogen to easily move in) holds the #1 position of those at risk during this time, so switching caregivers is risky. Even grocery shopping is a risk, and is exhausting to clean everything thoroughly  before it comes into contact with Naia. To complicate things even more, Naia was born with Celiacs Disease, which is a severe allergy to gluten, and at this fragile time could be very harmful to her to have any. This makes it impossible for her to eat in house, as the Hospital Cafeteria is very limited (Naia can eat less than 10% of what’s there, even less considering the side effect of mouth sores and difficulty chewing). Her and her mom have been ordering “no touch” food delivery which has been helpful but is very expensive. 


  Her mother, Sarah, is staying with her 24/7 and lives 5 hours away.  With the Covid-19 complexities, there is no break in sight to see her fiance, other children or animals.  As a former Patient Advocate and Caregiver, there is nowhere else she would consider being, and has put her life on hold, and attempting to manage her Real Estate career from a distance. (which is also on hold because of the virus chaos.) 

   Naias father has been supportive bringing food when he can, and willing  to do anything needed but the Covid chaos is prohibiting. Every day is a new obstacle to overcome with infections and side effects, so even getting out of the hospital to do laundry and get food is difficult and rare.  


   Naia’s boyfriend isaiah has been a big part of the team, a big part of her happiness, and they’re besties. He brings her comfort and joy through this intense process. He only has the best in mind for her even if that means not seeing her for weeks. Which is hard for both of them. We’re very grateful to have him on the team for naia’s journey ♥️ Although the story is intense and sounds terrible, know that Naia is a fierce and passionate personality, and she is weathering the storm with presence and strength, and faith in her Team.  She is a straight shooter who says it like it is, and advocates strongly for herself. Her hospital room is full of laughter, and she has become a well known favorite on this floor. 


 This is the story, please consider donating if you have the ability to lighten their load during her long journey back to health.  Keep a vision of her snowboarding, surfing, horseback riding, and being the strong, motivated, Spark of Life that she is! 

 

We wish you health and happiness. Be kind to each other, hold each other close ,and appreciate the simple things.           .