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