The night went over with no problems - Keian was started to Flagyl for the C-Diff and continued his chemo as usual. Thursday morning, as I was getting ready to pick him up from the hospital, Ryan called to tell me that one of his test results came back from November. This was a test they ran due to the MRI results that showed cloudy areas in his brain. They were concerned that the changes may not only be from the Methotrexate toxicity, but perhaps from an existing lipid storage disorder. Keian's results came back abnormal, which means he is positive for the disorder. Not only does this bring on additional health concerns for him, but if it turns out that it is an inherited disorder, Joren may have the same results. If this is the case, they will be unable to use his marrow for Keian's transplant. Joren and I will be tested to determine the genetic line.
today, we were told that his treatment plan will change slightly due to nature of his Leukemia presentation and that they will now be treating him as the extremely high risk. This also means that he will get largest dose of the best drugs they have. While we await results from his bone marrow biopsy, which will likely be by Monday afternoon, we will also be admitted on Tuesday for 6 days. During these 6 days, Keian will receive chemo drugs that are known for damaging the kidneys and liver and therefore needs to be watched 24 hours a day. After these 6 days, he will be able to come home for 2 weeks. He will then be readmitted for 1 month, in order to receive high dose ARC (cytarabine) - this given at high doses, we're told has serious side effects, one of which is a 5% chance of mortality, due to uncontrolled infection. After this, he will start his brain and total body radiation to condition him for his transplant. This will completely strip him of his immune system with zero chance of recovery without rescue stem cells. We've been told that within 3 weeks, we will be admitted for a a minimum time of 3 months and will not be able to leave his room during this time.
It truly feels that our world is crashing in upon us. We've remained strong through all of our struggles and he has been the most incredible fighter - I couldn't have asked for more. We have been and will continue to remain positive and shine that positivity in our everyday life. Someone told me the other day that sometimes you have to fall, so you can pick yourself up and become strong again. This is truly what's happening. I look at him with such admiration, but yet at the same time, it breaks my heart. He is so tired and weak. I watched him tonight struggling to even get off the couch and he can no longer get off the floor by himself. The pain he's feeling in his legs, as well as the decreased strength due to the peripheral neuropathy has not only damaged his physical body, but also his spirit. But yet, throughout all of this, he still finds the good. Tonight, as I was rubbing his legs, I couldn't help but tear up. He looked at me and asked me why I was crying. I told him that I was crying because I wished he wasn't sick. He responded with; "I just keep taking my medicine" clapped his hands and said "then I'll be all better".
Tomorrow, we will wake to see a smiling little boy, who reminds us every second of every day what it truly means to be beautiful.
"You never know how strong you are, until being strong is the only choice you have"