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!
This appointment will be a consult. They have told us, and we agree, that it is very important for them to see, talk to and feel Nick before recommending a path for him…and that’s what this appointment will be. From there, the surgeon will be able to recommend a plan for Nick. Our hope is that transplant is the clear path he sees for Nick and if that’s the case we would schedule another trip for a transplant evaluation, but, for now, we just have to be patient and pray that this surgeon can make the best decision possible for Nicks well being.
I am also so very happy to report that Nicks bilirubin is trending downward pretty significantly, you guys. His bilirubin is an indicator of his liver function. His ‘normal’ has typically been around a 2 and it rose up to a 12 around the time of his diagnosis..and it hovered around there for a solid couple weeks. As of last week, it’s down to a 4.9 and you can physically see the decline in his bilirubin by just looking at his coloring…it’s remarkable. I truly believe in all of my heart this is because of how he is taking care of himself..he’s eating such a wonderful, tailored diet and has been religiously taking milk thistle..way to go Nickyboy! The power of food is incredible and I will never stop believing that. Let’s just pray this number continues to decline, or at least stays stable.
I know it’s been difficult for some of you to be patient with this process, and it is for us too, but please know we are doing everything in our power to stay on top of every piece of this puzzle to ensure that things can happen in a timely, yet effective way. We want to ensure things move quickly..but we also want to be smart about it and ensure that we are seeing the right people in the right places. We have also had appointments with regard to a clinical trial that is going on at the University of Minnesota..trying to keep as many options open as we can. This study would be for TACE treatment in patients with high bilirubin. And while this certainly wouldn’t be the most effective, safe treatment for Nicks particular case, if Nick is not eligible for a transplant in Toronto, this trial could be discussed as an option to bridge Nick to a place where he may become eligible. Just making sure we are checking all the boxes.
Overall Nick is doing really great. He gets very tired but has been an incredible trooper and is in good spirits. I thank God every night that this all happened during golf season..you may get a chuckle out of that but I truly mean it. As many if you know, golf is Nicks thing..it’s truly what keeps his heart centered. He has been trying to get out there to play when he can and I am telling you, he comes home from the course lifted up in a way you wouldn’t believe… it is his therapy. It gives him life, and I am so grateful for that. I went from getting annoyed when he’d play too much golf to now pushing him out the door to go play as much as I can…perspective is everything:) I’m so proud of how he is handling all of this so far..he’s an absolute champion ❤️
Thank you all for your continued love and prayers..we are still feeling it so strongly. I hope to have more information for you after our appointment on Friday. Sending you all love xoxo