OHSU Transplant Consult

So we had our consult today with the transplant Dr at OHSU. It was not quite what I had expected. I had expected the Dr to go over all the risks to doing a transplant and the benefits and then answer questions we might have. I pretty much just expected it to be that. We did do some of that, but really not quite as much as I had expected. It was more her wanting to meet Avarie and get her medical history from us. She likes to meet with possible candidates for transplant and evaluate them and then spend hours pouring over her medical file. I guess she doesn't want to waste those hours from what she can get a good feel from in 30 minutes of meeting with us.
Craig and I both came away feeling like transplant is Avarie's best option. I don't like it, but the statistics that she gave us today were a lot scarier then the numbers we had been working with. According to her Avarie's chance of not relapsing is not 70% like our Dr's had told us, she said that it actually only 40% and that with a transplant that number could jump to 60-70%. I was already operating at the 70% mark, so to go below 50/50 chance of relapsing. That one hit kind of hard. Its kind of like your mind gets stuck on that one fact and you can see the Dr talking to you and your trying to listen, but you aren't hearing anything that is coming out of her mouth. That's how it felt today, at least for part of it. I was able to snap out of it, and listen, but I know I missed a few things.
I plan on talking to our Dr's tomorrow about this number discrepancy. Its not like it is a small difference. That is a huge number difference. We are also planning on asking for a second opinion from Seattle Children's Hospital. They are the hospital that perfected the transplant and we would like another opinion on this. Its a huge decision and I don't like either option. If we choose to not do the transplant right now and wait and see if she relapses then we could be facing something scarier. Because whatever cancer survived to retake over and cause a relapse would be cancer that already survived all of the drugs she is on and the drugs she is on are the strongest available. If that happens it would be a lot more difficult to get her into remission and then her numbers would go down to something like less than a 20% chance of not relapsing and with a transplant only a 40% chance. Those aren't pleasant odds.
They have already run Avarie's bone marrow type through the registry and have come up with 90 possible donors. The Dr is very happy with that, she said that she can then be very picky about the donor to help give Avarie the best chance. The Dr said that she could have everything ready for transplant in as little as 6 weeks, but because of Avarie's fragile state with her legs and infections, Avarie would not be ready for transplant by then. It would be too risky for her. She wants her to go to transplant before Avarie would go into the maintenance stage of chemo, which is on June 7Th. She worries that Avarie would relapse if she goes into maintenance and we would be facing a much bigger challenge and much worse relapse odds for the future.
Craig and I both feel good about the appointment today, well as good as you can feel, but there are still a lot of questions and uncertainties. Hopefully when we go meet with our Dr tomorrow we will be able to settle a lot of those questions and nerves. Well no, there is no chance of the nerves being settled, but perhaps we could feel a little more confident about making a decision.
There was a lot more info, but that is most of the important stuff. Oh one last thing, we have had several people offer cord blood from their soon to be born babies. We are so grateful for the gesture, but according to the Dr today Avarie would not be a great candidate for a cord blood transfusion because with an adult donor if Avarie were to have any complications or need a second transplant we could go back to the same person and use the same marrow, its not good to keep introducing new marrow, but with a cord blood transfusion its a one shot deal. There is no one to go back to use as a donor again because they are now growing babies somewhere, too small to donate and we got the stem cells from their umbilical cord once its used there is no more umbilical cord to take from. So thank you all for that wonderful offer, but it is unfortunately not an option for us.
If anyone has questions about all of this, please feel free to ask. We are so open(obviously) about all of this. Your questions may help me to think of things that I haven't thought to ask yet too.