We just met with the surgeon in Toronto, lots of information but I’ll give you the short of it. This physician wouldn’t feel comfortable doing a transplant on Nick until Nicks been treated to some degree first, for a multitude of reasons, but mainly because of the need to see how the tumors respond to treatment and to get a better idea of the biology behind Nicks tumors. He recommended we enroll Nick in the clinic trial at the U for TACE treatment (praying this is a confirmed option). After Nicks treatment he would give his body about 3 months to respond, and if all looked good at that point and Nick was responding positively we would begin the transplant process. The surgeon made it very clear that he understands our sense of urgency, but that transplant in a patient like Nick can not be rushed as there is much risk that could come with rushing all of this.
The surgeon was great and very willing to advocate for us. He let us know that Nick would be the first international living donor transplant patient they have treated, so the process could take a very long time due to there being no process in place for it. He told us he sees no reason on why he couldn’t operate on Nick if he responds well to TACE and is going to bring Nicks case in front of his board of colleagues to ensure that they would also feel comfortable with it.
He also talked a bit about a potential living donor transplant in the US..which would obviously be an INCREDIBLE option for Nick, but he just wasn’t confident that Nick would qualify, which we already knew and we’ve looked into to the best of our ability. He has a few colleagues in the US that he’s going to reach out to to see if we could somehow get around the guidelines and will be in touch with us about his findings. He just felt that it would be so much more beneficial in every way if Nick could have it done in the US.
In the meantime we will continue to work with Nicks doctors at mayo and the U of M to decide if and when Nick could start the clinical trial and their thoughts on that whole process-they initially recommended we see this surgeon in Toronto before making any decisions with regard to that. There are so many moving parts here, but one step at a time. The good news is that we have somewhat of a plan and a little direction. Our goal is still transplant for Nick, we just have a few hurdles to jump before we can get there. So for now we will stay diligent with these doctors and do everything in our power to keep Nick healthy at home. I’ve said it before and I’ll say it again, but I believe in my heart that some of this ugly disease can be controlled by Nick taking care of himself and we will keep at that with all of our might.
We’ve been trying to remind ourselves that this is a journey…a marathon, in fact. And while we will sprint when the time is right, we are committed to pacing and positioning ourselves in the right lanes for the win. All in all, we feel we’ve been assigned a lane today to start the race and that feels like a very positive step. We will continue to keep you all informed as we learn more, but for now we are going to go home to our babies and enjoy the heck out of time with our family this weekend. So much love to you all! xoxo