Monday, December 15, 2014 – 1 Year and 29 days post Leukemia diagnosis – Pre-Transplant
Last Thursday we had an appointment at the Bone Marrow / Stem Cell Transplant Centre in Ottawa. The last time I spoke to one of the head nurses from the Transplant Centre on the phone, she informed us that the first donor they selected was not suitable. The rest of the conversation had us worried that there may be an issue with Kevin’s HLA typing that would make it difficult to find him a match. So needless to say, it was a high anxiety trip to the hospital. The weather didn’t help either. We had a major snowfall the night before and the forecast was calling for more. To put it mildly, I HATE driving when it’s snowing with a passion. Thankfully Kevin’s AWESOME brother drove us there and back! Thanks Keith!!
The main reason we were going into this meeting was to talk about our expectations and the importance of keeping Kevin informed with respect to the progress they are making finding a donor so he doesn’t turn into a mental health patient. We also wanted to discuss some of the serious concerns we have had with some pretty major discrepancies that have happened like their staff telling Kevin that his “sister was not a match” when he doesn’t even have a sister. That’s a little concerning, don’t you think? lol I won’t get into all of our concerns because I’m not trying to focus on the negative at all. We just want to make sure that things are moving along.
This time they had us meet with two new transplant specialists we had not met before who pretty much schooled Kevin on the RISKS involved with an Allogeneic Transplant from an unrelated donor. The first doctor was like a programmed robot who was not interested in addressing our concerns. She pretty much said that we shouldn’t worry about what happened in the past. She also said that Kevin is not entitled to know anything other than the fact that they do have a suitable donor when they have one. Then she asked Kevin if he understood the risks involved with this type of transplant and flat out said, “Do you know you can die?” Wow, thanks for that sherlock! I explained that we had already spoke to 3 other doctors/specialists who already informed Kevin about the risks of transplant… just not so bluntly. Kevin has also googled the shit out of “what are the risks and survival rates of a bone marrow / stem cell transplant”. So he fully understands the risks, but he has no choice if he wants to survive, so why are we focusing on that?
Thankfully the second doctor was a little more compassionate. He did reiterate all of the risks, but he also explained that even though everyone agrees that Kevin has no other viable option, they just really need to make sure Kevin is fully aware of what he is getting himself into and on board with it. He also didn’t use the word DIE… which was awesome. Then he informed us that they do have potential suitable “donors”. Yay! He wouldn’t elaborate any further, but he said that all they need to do is set the date, request that the donor get the “million dollar work-up”, get Kevin to finish his “million dollar work-up” and everything should be good to go within 4-6 weeks. We don’t expect things will happen THAT QUICKLY… we are thinking 6-8 weeks, but we do think things will happen fast once the holidays are over.
So we walked away being a little more hopeful than we were when we went in, which is all you can ask for in these situations. We know it’s not easy for anyone to deal with this stuff… even the people that are getting paid to do it. We also accept and respect that these specialists need to be robotic to a certain degree.
One thing we were told to do is make sure that everyone who will be around Kevin has a flu shot. Ugh. I’m not a fan of these types of vaccinations, but we all got our shots ASAP. Poor Lexie broke out in a rash all over her chest and back. Not a severe allergic reaction, but she must be allergic or sensitive to one of the preservatives they use. I also had a bit of a reaction, but if it keeps Kevin safe, it’s worth it.
For now we are going to try really hard to stay focused on positive outcomes, CHRISTMAS and our “Bloody Awesome Christmas Fundraiser”! Until the next update, take good care of you and your special ones! Thanks for stopping by!