Blessing in Disguise?

It's been 11 days since we found out Bash needs a bone marrow transplant (BMT). It wasn't the news we were hoping for. We had hoped that the chemo was working and it would put him into remission. It was another kick in the gut. The BMT does have a riskier path, but also comes with a better chance of a cure. In some ways it feels defeating, but it also feels like the right path deep down. If we had gone through chemo and in a year or two had the cancer return (possibly more aggressive) we would have to take this route anyway. Since Sebastian has a blend of two types of Leukemia (80% ALL, 20% AML) we feel like this might be a blessing in disguise to take this harder road and be rid of this disease now so that we can move on with life and put this behind us.

We have been overwhelmed with people asking how or if they can donate to him. I've been holding off writing an update hoping I would have answers by now. We have been patiently waiting to talk with the bone marrow transplant team about our next steps and what treatment is going to look like now. The day we found out, a BMT nurse gave us some info, but since then no one has come to speak with us which has been very frustrating. We have many questions and seem to only have more as the days go by.

This is what we know so far, and I will update again once I know more. Bash has been entered into the international bone marrow database, they pull matches from around the world. It can take up to 10 weeks to find a match. We were told we would probably hear about a possible match by 4-6 weeks. Nate and I only have a 2% chance of being a match. Family and friends can not donate directly to him, but you can go to the Canadian Blood Services website here and sign up to be entered into the national database to be a donor for not just Sebastian but for other families who may be in our situation. The chances of you being a match for Bash are one in a million, but maybe you can be another families one in a million.

Currently we are in the middle of the re-induction phase, not consolidation as I had written in my last post. This phase consists of chemo meds we saw in the very first phase and Dexamethazone, a steroid which makes Bash very emotional and extremely hungry all the time. We have been discharged once for a few days already this round and sent on a few passes and extended passes. Right now his Absolute Neutrophil Count (ANC) is recovering from zero, so we are back in the hospital until his numbers come back up. On Wednesday (Apr 12) he gets another Lumbar Puncture with chemo injected into his spinal fluid, then resumes a week of Dexamethazone which ends this phase.

Doctors started pushing for a nasogastric tube again today as his weight has been stable but no gains since January. We have been feeding him full fat 11% greek yogurt, avacado, oatmeal, macaroni, pizza - really anything that has a high fat content or that he likes. We even add cream to his water! The weight just wont stick. We are going to have to put the NG tube in soon so we can try to get his weight up before the BMT

happens. I hate it - I feel pushed into it, but he needs to be healthy and he needs to start gaining so he can be strong for the road ahead. I just really hope having the tube will not hinder him from eating and drinking normally or cause any adverse effects - if you can't tell, I have extreme anxiety about it.

Bash has been such a fighter through all of this and we couldn't be prouder of him and the accomplishments he has made so far. Not just in treatments but in growing up with all these road blocks. His resilience is astounding, his strength and courage through this amazes us, and has been helping us get through this. When we are home we have been getting outside to enjoy the nice weather. We took Bash for his first bike ride in his chariot this past week and he absolutely loved it!