Scans and More Biopsies

When Mike and I would talk about what we thought the future looked like as far as his cancer & this transplant were concerned, we were pretty realistic. We didn't really think he would have and "All Clear" PET Scan after this transplant. The mass in his mediastinum has just been so stubborn and difficult. We figured he would have a scan and then find out that there was still just a little bit of cancer left that would be cleaned up with the Brentuximab immunotherapy drug that he would take for the next year. That was how our "best case scenario" played out in our heads.

He had been feeling pretty good for the most part, starting around Day 30 through Day 60. Then he started to feel lightheaded quite a bit. They decided to move his PET Scan up to Day 75. I guess this is a good and bad thing. The reason I don't think it's the ideal thing is because after a transplant, early scans can show all kinds of things that just aren't resolved yet. His immune system is still very young and new, so there can be infections going on, or nodes that show up as reactive, but not necessarily positive.

This is the case, unfortunately, that we are in, now. His scan showed several spots of concern in his chest. (Both in his lungs, and in the soft tissue.) The tricky part is that a PET cannot determine if these spots are just reactive, or cancer, or infection. So now he has to have more biopsies to figure out what exactly is going on and how we move forward with treatment.

There is concern that the TB infection that he had has become active, but I don't feel like that is actually the case. He doesn't have any symptoms of TB, but I guess I'm not a doctor. What do I know? There is also a chance that the lymphoma has spread. It would make sense considering some of the symptoms he has been having. (Night sweats, fatigue) We just don't know yet, and lucky us, we get to play the fun waiting game again! yay.

Monday he will have a Bronchoscopy procedure to get tissue to biopsy. They also have him scheduled for a more invasive surgery on Friday if they don't get everything they need on Monday.

I can only imagine how tricky it is since he has different areas that are affected. One biopsy couldn't possibly be conclusive for all the spots that showed up on the scan? I don't know. I don't know much of anything, anymore.

We haven't mentioned this little setback to the kids. We don't want to worry them if it turns out to not be a big deal. The girls have really been looking forward to hearing that Daddy is cancer free. I hope we can give them some good news soon.

Depending on the results will determine which way treatment goes for Mike. He knows that he is potentially looking at getting that donor transplant. He REALLY does not want to have to do that. There are new clinical trials called CAR-T therapy  that we're hoping he could get enrolled in. Basically, the T-cells are removed from the patient, mechanically re-engineered and reinserted into the cancer patient. The altered T-cells attach to and kill the cancer cells. We would like to get him in one of the studies, which could mean travelling to Nebraska or Maryland.

We'll know more in the next couple weeks, so for now, we just keep going. Day by day, living, breathing, loving, laughing. (And there was a little bit of crying... it just gets so overwhelming sometimes!)

I think I'd be a complete mess if it weren't for my friend Leslie to help me consider all sides of this thing. She sees this stuff in her career often, and her perspective is always a breath of fresh air. She keeps me sane and helps me laugh at all of it. What would we do without good friends in our lives?

I'm so thankful for all of the people that have helped us, and continue to help us get through this. Mike's friends that are helping him with farming are the true heroes among us. We can't even begin to say a big enough THANK YOU. Even the littlest things that remind us of all of the love and support around us feel like BIG things. We are so grateful.

XO

Robin