Hi friends and fam. So sorry I’ve been absent..just so much going on and a lot of waiting and unanswered questions on top of it all. I don’t really have a ton to update you on..but thought I’d just let you know what’s been going on these last three weeks.
Nick didn’t feel great after his last treatment..it really took a toll on him. He was exhausted and had some flu like symptoms..he felt pretty yucky. He started to turn a corner about a week and a half ago and has been feeling much better since. Still tired, but nothing compared to how he was feeling a few weeks ago. He’s got pretty good energy and has been back to business as usual for the most part:)
He’s had lab work done 3 times in the last three weeks. The first week showed that his AFP jumped up pretty high. The last two weeks have shown that number to stay stable. The doctors just can’t even speculate at this point as to what is making his number climb and they want to do a pet scan to try to gather more information before coming up with the next plan. His hepatologist, interventional radiologist and transplant surgeon will all meet and discuss everything on Wednesday..in the meantime we are waiting for approval for the scans through insurance. Our guess is that we may have to head back for scans next week, but we just don’t have any concrete answers at this point.
Does it feel scary to see his AFP rise like it did? Yes, there is no doubt. It’s certainly difficult not to have any answers, reasoning or next steps in place. But the fact that his afp has at least stayed stable these last three weeks feels comforting. We just have to hold on to that and keep faith in what’s to come. This time of year is just so special to us..Georgia’s birthday, Thanksgiving, Nicks birthday, Jude’s birthday and Christmas all fall within nearly a month of each other and we truly just want to mentally backburner the insecurity and enjoy the heck out of this time as a family…and we have been..and will continue to. We have so many reasons to celebrate and feel joy and we are going to let ourselves continue to do just that🧡
I hope that your hearts are filled with so much love and happiness during this special time! We are sending you all so much love and will continue to fill you in when we know more. As always, thank you for your continued prayers and support..you are a true gift to us! Xoxo