Hi friends and fam. It’s been a good few days in NYC. Here’s the lowdown..
Nick had his second Y90 treatment on Monday. The procedure went as expected and the interventional radiologist, Dr Malhotra, was very pleased with the distribution of the Y90 beads…nearly 100% of them went directly to Nicks second largest tumor. He was able to be a little more aggressive with the dosage because of this…so we are very hopeful. Nick will have bloodwork done back home in two weeks to see how things look. All in all, we are happy with how the treatment went. Nicks not in any pain and walked out of an incredibly long day of treatment like nothing even happened..I’m telling you, he’s a beast;) And while he still has bouts of fatigue, he’s been feeling great ever since. Plenty of energy and in great spirits.
As of Monday morning, pre-second treatment, they saw a slight increase in Nicks afp (tumor marker) in his bloodwork. The doctors consider the number to show things are “staying at bay”, but we were really hoping to see a decrease in that marker. The doctors are hopeful that we see a decrease when he has his bloodwork in two weeks…that will give time for the second treatment to kick in. If we don’t see a decrease, we will reassess with the team of physicians. But as of now, in the meantime, we will just pray away that the beads do their job and bring his afp down.
Nick had his cardiac procedure done on Wednesday and I am so so SO happy to report that all things look good with his heart. They were concerned that they saw increased pressure in his pulmonary valve through an echocardiogram that was done over a month ago..but we can rest assured that his pressure looks perfect now. The interventional cardiologist said Nicks mechanics and function look great..and we are thanking our lucky stars for this. Such a relief, as any abnormalities or complications with his heart could greatly affect transplant being an option down the road.
We were supposed to meet with Dr Halazun, the transplant surgeon, this morning but he called Nick first thing and said he was unable to meet as he had an emergency transplant to do. He and Nick had a great talk, tho. Dr Halazun spoke with the interventional cardiologist immediately after Nicks procedure on Wednesday and is elated that the heart tests came back favorable-i think he was as worried as we were:) With regard to Nicks afp, he thinks we will have a better idea of how things are looking after bloodwork in two weeks. He and Nicks interventional radiologist both agree that scans should be done in a month or so to see how things are looking..so they will work together to map that out for us.
All in all, the week went well with very minimal hiccups. The days were very long, but it certainly didn’t feel all that bad considering we were constantly surrounded by the most uplifting, kind, wonderful care teams. Not only the doctors…but the nurses and staff are really starting to feel like family at this point. They always welcome us back with such open arms and make us feel so loved. It’s been such a pleasure getting to know these people..it’s really amazing the bond you can create in these types of environments. Special isn’t the right description, but it’s all I can come up with at the moment. So incredibly special.
Back home I’m pretty sure the kids had the best week of their lives. My sister came from Omaha with her three kiddos to stay with them and I’m not so sure they even missed us for a second! My sister from St Paul and nephew spent a little time with them too…so we can probably chalk this week up as being their best week of summer. My heart is so grateful…it is so much easier to leave knowing the joy the are experiencing while we are gone. The best❤️
So now we head back home and get back to business as usual; trying our best to keep Nick healthy and feeling well, family time, and as much “normal life” as we can possibly experience. We will be praying fiercely for positive lab results in a couple weeks, but we are not going to let that worry stop us from enjoying the days ahead..way too much to be grateful for at this point.
As always, thank you for your continued calls, texts, prayers, thoughts, kindness…all of it…we feel so blessed to have you all on this journey with us. Sending you all the love…and Ill be sure to keep you informed as anything arises. Xoxo
Ps I’ve heard “i feel bad asking” so much lately, you guys…and that’s not good! If you have any questions about Nick, the processes, the doctors, anything, please feel free to ask…we are happy to help answer any questions at all. After all, you are a part of this, too…we are taking you along with us in our hearts every step of the way❤️