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
19 thoughts on “Checking In”
Merry Christmas and Happy Birthday- to all of you! 🎊🎄
Nick is in our prayers. God Bless you and Merry Christmas to you and your family! All my love and prayers. Your cousin, Therese Giannone
Thank you so much Therese…Merry Christmas and much love to you and the family! Xo
Thank you so much Jen..and a Merry Christmas to you and your family!
I love reading your posts. You are amazing.
Thank you for sharing your journey! Many blessings and happy birthday wishes to your family. Hugs to all!
Thank you sweetheart..Merry Christmas to your beautiful family!
Merry Christmas! We’ll continue to keep you and your family in our prayers, stay strong!
Thank you so much…and a very Merry Christmas to you!
My prayers are with you. Every day is precious.
Merry Christmas Missy! Continued prayers for comfort, strength and healing. ✨
Thank you Val…it’s always such a bright light to hear from you! Merry Christmas to your beautiful family!
We think of you often, and pray for you always🙏 Best wishes for a very blessed Christmas season! Continue to stay strong, and know that God is with you every step of the way! Peace and love to you all, maureen and john❤️
Thank you Maureen…we are sending love back to you!
Hi Melissa,I have been following your posts. Your spirit is genuine and it shows through as you write about Nick’s journey. The love for your family is beautiful and the faith you have is promising. I was hesitant to reach out. I met Nick’s Best Friend, Jack when we were at new hire training for Gartner.
The reason I am writing you is, I had a liver transplant 8 1/2 years ago at the age of 28 and happy to help anyway I can. I wrote a book about my transplant and gave a copy to Jack. Not sure if he shared it with you or Nick. Everyone handles situations differently, so I understand either way. I sit on the board to help raise money for Transplant research at Columbia University in NYC and know Dr. Edmund, head of Liver Transplant very well. I understand you are very happy with your doctors and sounds like you are in good hands. Please feel free to reach out to me if you have any questions.
You, Nick and your family will continue to be in my prayers.
All my best, Jessica firstname.lastname@example.org 646-259-1920 jessicazampieri.com transplantforum.org
What a kind note. Thank you so much for reaching out Jessica….you are a true inspiration! We will keep your number close and also keep you in our hearts and prayers for continued health🧡
Merry Christmas and a blessed New Year to you all!
We think abut you often and miss you Janeen! Sending so much love to you! Xo
Thinking of you and Nick and wishing you all a Merry Christmas and a healthy and happy New Year. Our prayers continue for healing. Enjoy all those birthdays and celebrations!