Hey you all…I hope this note finds you safe and healthy. Just thought I would drop you a few lines to let you know how Nicks been doing.
We are having a pretty darn difficult time grasping that he is almost 8 weeks post transplant. This time has flown and drug all at the same time. Nick continues to improve by the day. He tends to have bloodwork on Mondays and e-visits with his team on Wednesdays. There has been a ton of blood level observation and medication tweaking….it’s really amazing to watch how all of this works. It’s such a science, yet such an art all in one, if that makes any sense at all.
The big trick has been to get Nicks anti rejection medications right. There is a very fine line that needs to be hit for transplant patients with HCC. They don’t want too much of the anti rejection meds in his system in fear of his immune system being too compromised and unable to fight off things, especially reoccurant cancer, but they also want him to have enough for his body not to reject his new liver. This management has been quite the task. In the hospital, if you remember, Nick was showing signs of rejection in his blood so they upped his meds…but as of the last month or so his body has also been showing to have way too much of that medication in his body which tells that he isn’t rejecting anymore; a really good thing. They’ve slowly been titrating him down and just this week was the first time his levels of that medication in his body have shown to be in the range they are targeting. Absolutely fantastic news! So, our hope is that this number stays stable and they can finally keep him on a steady dose. Because remember, once that 3 month mark hits, the only way Nick can go home is if his labs and meds are all stable enough.
As for Nicks other bloodwork, my gracious you guys. All of his other labs, including his liver bloodwork, still look incredible. Like completely normal. Things are looking so good.
Nick feels well overall. There have been some side effects that he’s really had to push through. The headaches are pretty brutal as well as shakes/tremors in his hands and some light-headedness. Now that his medication levels are starting to stabilize those symptoms should really start to dissipate. His incision looks amazing and he’s getting around much easier these days. His energy is coming back slowly, but definitely surely. Every day seems like progress…which is an absolute gift. It’s really all we can ask for.
We really can’t stop thinking about the timing of his surgery. It’s not one bit lost on us that Nick got that call when he did. Had we been home still waiting for a liver during this pandemic he wouldn’t be able to fly out here for treatments to control his cancer while we waited…its scary to think about what could have happened. And what if he was offered a liver right now? Would they feel comfortable transplanting him? How incredibly much risk would he be at being in that hospital and traveling to get out here? So very many roads we could have been led down and we are trying to just constantly remember the gift our family has been given. We feel God with us.
The kids continue to blow our minds. While they get very sad, they also understand that there is an end to this and they are able to continue to find so much joy in their daily lives. My sisters and parents have been taking turns staying with them over this past month and Nicks mom and husband have been managing their school work so its been such a great group effort….I just don’t even know how to explain how thankful we truly are. The safety and love they provide the kids have been instrumental in getting them through this.
We are still missing the kids like crazy..I thought that piece might get easier but it doesn’t. We have a few things up our sleeves in an effort to get me back home to the kids…but Im not letting myself get my hopes up too much. We’ve allowed ourselves to make a tentative plan for me to go back to them in a few weeks or so…it would be the most unbelievable blessing in the world if it works out when that time comes…and if it doesn’t, and it turns out not to be a safe opportunity, at least at that point we will be that much closer to the end of Nick being out here. We’ve chosen not to share it with the kids until we are much closer to the time and until we are absolutely sure that it can happen.
So, all good as of now. We continue to take it all in stride. Nick has been a champ. I even witnessed him swinging an air golf club yesterday…which I think might be the best sign of both mental and physical progress Ive seen yet;) Thank you all for your prayers and care. We continue to pray for all of you….for those going to work and risking their lives each day to help our community…for those who are trying to navigate working from home…for those trying to manage restless little ones or e-learning…for those who are sick…and, mostly, prayers that you are all feeling mental wellness and some sense of hope through all of this. This really is such a trying time for everyone…and we send you all of our love. xo
26 thoughts on “Update-8 Weeks Post Surgery”
Goosebumps Miss!!! So happy to hear healing progress!! Our prayers continue for Nick, you, the kids & the whole extended family.🥰🙏🏻
Oh Miss Cindy….thank you. Hearing from you always fills me up so much…thank you for all of your prayers and care! I think about you often and keep you close in my prayers xoxo
Hope for continued good health reports! 🙂
Thank you so much!
Your strength and trust in Him are nothing I’ve ever witnessed in my 38 years…absolutely incredible. Prayers to you all!
Oh Jen..you have no idea what it feels like to hear that. Im not doing a single thing you wouldn’t do for your family…but I appreciate your sweet words and continued prayers. Your encouragement through this last year has been so amazing…you are just so wonderful xoxo
So happy to hear of continued progress! You’ll be home with your littles soon! I’m truly in awe with your poise and strength. Love and prayers to all.
Thank you Val…its just so uplifting to read your notes of encouragement, it truly is. I miss you and hope all is well with you and your beautiful boys!
You two are the role models for faith, love, and determination. I continue to pray for Nick’s complete healing and the unity of your family.
Love, Mary Jo Salem
Mary Jo…your notes and words of encouragement have really touched my heart..thank you for lifting me up. You have always been such a woman of strength and have always radiated a beautiful heart…so to hear those words from you truly means so much. Im sending you and the family lots of love!
It is so good to hear that things are going well for you and Nick and I will continue to pray and send all of my positive energy your way and hope that you get to see your kids soon! Give Nick a little squeeze for me and tell them I can’t wait to see him
Awe, so great to hear from you Jaime! Nick sends his best back to you…we can’t wait to see you soon!
Thank you for taking time and the continued progress. Continued thoughts, prayers and wishes to you and the family.
Thanks so much Michael, we appreciate your prayers and wishes very much!
Thank you for your update, Melissa. I think of you often and sending you all my love and prayers. Your strength is a reminder to the world to find gratitude even on the most difficult days. xxxx
So very pleased with this latest progress report. Continued healing energy being sent your way. The strength and gratitude you have shown is so inspiring particularly during the virus. Blessings to you and your family.
So appreciate your updates Missi! Continued prayers for you both, as you fight this battle with such dignity and grace🙏! God is with you all, every step of the way! Positive vibes for healing, Nick, with sincere hopes for improvement day by day! Love to you all, Mo and John ❤️
Thank goodness! I realized we hadn’t heard from you in awhile and got worried. So glad to hear things are going so well. I heard a quote yesterday that made me think of you two, and the whole world, frankly – you have to have a storm before a rainbow can appear. You’re in your rainbow period, I’m sure.
I think about you and your family often! I’m so happy to hear about the amazing progress Nick has made. I can’t imagine the pain in being away from your kiddos- prayers you can all be together again soon!
Thank you Shannon..so great to hear from you! I hope you and the family are well!
Thank you so much for your amazing updates! We are thinking and praying for you both always. You have been through so much, you are both so strong ♥️ And I’m happy to hear the positive news about nick
Thank you so much for your amazing updates! (I just realized I can comment on here). We are thinking and praying for you guys always. You have been through so much. I’m so happy to hear the positive news and keep it going Nick! You got this. Miss and love you both
Melissa- what beautiful words here. Words that mean so much with everything going on.
I have learned so much from just speaking with you at the club and talking with Rocco who I miss.
Prayers for you both and your family.
Oh sweet Mary..thank you! I miss seeing you and hope you are well!
Hang in there Missy. You guys have been through so much. You got this. Love and prayers
Great update and even better news! Thinking about you all – let Nick know I say hello and nice work:)