Not much time over here but wanted to let you know that we are heading to NYC tomorrow for a Thursday full of several appointments and evaluations for Nick with regard to a living donor opportunity at New York Presbyterian. The surgeon in Toronto was so incredibly kind to get us in touch with a colleague/transplant surgeon at Cornell and we are so anxious to meet with him as all of the literature and research that we’ve read of his leaves us confident in his opinions and experience. We are praying he may have loop holes around the guidelines for a US based transplant that were discussed with us at Mayo..but more than anything, we are just hoping to get clarity and confidence on how best to move forward.

We will absolutely keep you posted…sending you hugs xo

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. Continue reading →

Happy Monday to you all! We have spent the last few weeks poking the University of Toronto bear trying to get Nick scheduled for an appointment with the transplant surgeon..holy cow, you guys. I’ve always been a firm believer that you have to be your own advocate when it comes to healthcare…but we have entered an entirely new level of that. And I’m happy to report that Nick has an appointment booked for this Friday at 10:50am with the surgeon. We are so thrilled to get this ball rolling! Continue reading →

Update time, friends. Continue reading →

Friends, I am writing you today with a heavy, hope-filled heart.  We’ve had a lot going on these last few weeks, and I believe it’s time for me to fill our family and friends in on details. Continue reading →