Happy 2020 to you all! I hope your holidays were wonderful and that you have been enjoying time doing whatever it is that fills your heart up over these last few weeks!
Just here with an update on Nick. We returned yesterday from NYC…he had his treatment procedure on Monday. The procedure went very well itself. As you might remember, there was an area in the pet scan that very visibly lit up red, unlike any other area on Nicks liver. His IR went in on Monday and confirmed a very large tumor, roughly around 6cm. Everyone is scratching their heads at how this wasn’t seen on any of Nicks scans. We sat down with his IR and thoroughly reviewed all of the scans…and all we can gather is that this large tumor was either attached to or overlapping with the second largest tumor that was treated a few months ago. We learned it’s incredibly rare for this order of events to happen..for the scans not to show a tumor..yet a pet scan light up red..and his IR to actually confirm and locate a tumor in the area lighting up…and we are thanking our lucky stars for this rarity. His IR was able to target this tumor and ensure that about 90% of the treatment beads made it into this tumor. He also targeted a small one on his route…because he had the ability to get to it and enough beads to do it along the way.
All in all, this is incredibly hopeful news. We truly couldn’t ask for anything more out of the treatment..the doctor had so much clarity on where to go and such success in getting the beads where he needed them. We are just so so hopeful for this tumor to be the one that is releasing all of the afp..and praying that it responds to this treatment.
Nick will have bloodwork in two weeks. This isn’t a ton of time to let the treatment work..but hopefully we may see some sort of change in his afp. A few days later we are scheduled to be back in NY for meetings and tests. We had a long chat with both his surgeon and IR and there are basically three ways this could all go:
1-this treatment could bring his afp down below 500 or right around there…at that point they would start pushing hard and getting the process going to list Nick for a transplant
2-they see his afp drop a tiny bit…at that point we wait another couple of weeks to test again or potentially do scans and schedule another treatment to get this tumor again
3-they see a rise in his afp…at which point we sit down to discuss other options. If his afp doesn’t drop after this treatment, his doctors aren’t confident that this local regional treatment could benefit him any longer. We would need to talk systemic options..and it sounds like it would be immunotherapy. While it isn’t statistically the most successful with dropping down an afp in a situation like Nicks, they all feel like it would be worth a shot and that we’d have to try something. We will cross this bridge if we get there.
As you know…we are relentlessly praying for option 1. We have a few weeks to wait until we have any sort of answer at all..or even any leads to an answer…so we just have to try to focus on the favorable possibilities at this point. While some of the options are sounding a bit scary, there is so incredibly much that could go right here. Patience…we are trying so hard to stay patient.
I’m not going to candy coat it, Nick isn’t feeling great. He had his procedure on Monday and has spent most of the time since then in bed. He’s absolutely exhausted..he’s had bouts of nausea, headaches and is having some pains. We are holding onto the fact that the pains could be tissue and tumor death. He’s in very good spirits, considering, and he gets up once in a while for a game of cards with the kids or to hang out with us or have a meal. He says it’s not unbearable, but bless his heart I know he just isn’t feeling well. It sounds like the first three days could be the worst of it..so hopefully he will turn a corner in a day or two. We will just keep pumping him full of nutrients and rest and will have him back to normal in no time…I’m so sure of it.
We will take any and all light, positivity and prayers you have to offer on Nicks behalf, friends. For healing and a speedy recovery from this treatment, for positive answers and clarity in a few weeks, and for our hearts to remain patient and positive.
Although Nick wasn’t in great shape, we managed to have a wonderful chat on NYE. We both agree that while this past year was incredibly challenging, the amount of good that came out of it is something to write home about. We are firm believers that kindness is contagious and we are certain that all of the kindness we received in 2019 has been spread throughout the universe and is still going strong…what a remarkable feeling. The prayers. The meals. The donations. The rides and extra hugs for our kids. The childcare. The overnights. The shoulders to cry on and the hands that picked us up off the floor. In five, ten, fifteen years from now, when we look back on 2019, I’m so positive that what will stand out the most wont be the heartbreak, the fear or the challenge we’ve experienced this past year, it will be how much more rich and blessed our lives became. For so many reasons; because of the unconditional, vulnerable, raw experience of love it gifted our marriage, because of our beautiful, patient, resilient children, because of the way our hearts and faith in God have grown, and because of your unbelievable support. We are incredibly confident that 2020 will be our year and going into it with you by our sides is something we promise to never take for granted 🧡
As always…I’ll be in touch. So much love to you all xo