Kai has strain of Leukemia called AML (Acute Myeloid Leukemia) which is a rare form of the blood cancer. AML is treated much more aggressively than the more common ALL type, and is the main reason why Kai cannot leave the hospital for the duration of his treatments.
The treatment for AML is 4 to 6 rounds of intensive, 10 day chemo therapy where he gets 4 chemo drugs on many of this treatment days. A the chemotherapy drugs wipe out his blood marrow and white blood cells, dropping his immune system down to zero. Leukemia cells are white blood cells that do nothing and have any purpose. They are fast multiplying, and they eventually clog the bone marrow so that good cells cannot be manufactured.
When Kai was diagnosed, the Leukemia cells had filled his bones and were causing pressure which was very painful for him. This is one reason for his discomfort leading up to the diagnosis.
Kai also had something called a cleroma which was a mass of Leukemia cells that had clumped together. A Leukemia cells are very sticky and it is common for them to form masses. In Kai, this cleroma was located right outside of his spinal column and it was pressing on his spine, causing him to be completely paralyzed from about mid spine down.
This was why his leg gave out that one day in early December. As the Leukemia started to really spread, the cleroma grew and he slowly lost his ability to control his legs, bowels, and urinary tract.
For nearly a month Kai had no movement in his legs, but as the chemo started to kill the Leukemia, the cleroma started to shrink. After round 1 of chemo, the cleroma has shrunk 50% and the spinal column had much less pressure. This meant that Kai started to be able to wiggle his toes and move his legs.
The treatment for AML is intense and condensed. It lasts for 4-6 consecutive chemotherapy rounds. The other type of Leukemia (ALL) would have Kai doing treatments for 3 years, but we would have the ability to do outpatient treatments and live at home for much of that time.
We have had a crazy crash course in Leukemia and it’s also been just an overload of information. This hopefully has given you a high level overview of Kai’s particular experience and how he is being treated.
Just know you are not alone on this journey. Be Strong, be courageous little man and always know gran loves you as high as the moon. When this is done not only will you climb mountains, you will move them.
Wowww poor baby Kai. My heart goes out to you little man. What a trooper you are. Love & Hugs.
Kai you’re a brave little man and I know when this is all over you will embrace life with passion. I look forward to watching your many achievements in life as well as your prowess for eating crabs, get well soon little guy.