Tues, 12.14 - Family Meeting

Conor reporting here...

Tuesday was another visit to the clinic after all of us (Mark, Annie, the kids, and me) were in KC for an extended weekend - originally intended to be 4 days and extended to 5 due to some lovely Chicago weather that kept us in KC. We celebrated Christmas Saturday night with some Jackstack BBQ and gifts, and had such a great time.

The clinic vist was a bit of a different story. When we got to KC, Mom had been able to do very little in the way of eating or drinking and was extremely lethargic - difficulty staying awake, having coherent conversations, etc. So we scheduled a family meeting with the doctors and in the meantime she got on TPN and started feeling a lot better. She was able to pick up the kids, laugh, and enjoy the rest of the visit.

When she got to the clinic Tuesday, there was good news. All counts were positive enough that she needed no transfusions. That made two days in a row so we were hoping for the best. Then Dr. Abhyankar started the conference...

Mom's % donor has slipped from 98.4% Walt to 88.2% in a month. And Mom's cells do have the 5q- cells present. He explained this was concerning as it's not just a 10 point slip, it's a 10X slip. Things are moving in the wrong direction, leaving us with 3 options:

1. Increase the Revlimid dosage from 5 mg to 10. This is designed to suppress the 5q- so could slow the graft slippage. Revlimid brings additional GI issues and lower blood counts all the way around. We can do a bone marrow biopsy to determine what's in the actual marrow although Dr. A thinks this will likely tell us the graft is even worse as blood lags the marrow. But it will help us understand how much Revlimid could do. It will also help us understand if the marrow already has leukemic cells or blasts present.
2. Utilize a booster from Walt's cells. This is extremely risky due to the fact she already has GVHD and could present very adverse results in quick fashion.
3. Do nothing and maintain as we are.

Obviously none of these options are good. 2 brings a lot of risk, 1 would extend things with a quality of life sacrifice in the short-term, and 3 isn't great either. We are proceeding with 1 this week with marrow results forthcoming. Mom will need to continue to take TPN for her nutrition and carry the backpack around. Eventually 3 will be the choice. We're just not sure when.

Where does this truly leave us? Truth is, this is what we know. Dr. A said it's likely there are 2 - 4 months left with no more than 6. We will likely have a better idea after the biopsy results are back although nobody expects a true estimation as that wouldn't be recommended medical practice. Once the graft does slip completely, Mom should have window of time where she feels much better than she does right now. We will seize that window and enjoy it plus whatever time we have left.


I also want to point out that these doctors are having as hard of a time with this as we are. Amy mentioned she saw Dr. A get choked up talking about Mom, something she's never seen in 6 years of working with him. It's safe to say McGuirk, Ganguly, and Aljitawi all feel the same. And the nurses...wow, they are so close to Mom that I shudder to think what they are feeling. The reason I want to point all this out is b/c even while fighting this horrible disease, Mom has continued to make a huge impact on everyone she touches. We are so blessed to have her as our Mom / Grandma Cathi / Mother-in-law / Daughter / Sister / Aunt / Friend.

In conclusion, I want everybody to know that we are doing everything we can to ensure the greatest % of the time remaining is QUALITY. Even though the news is not shocking, it doesn't make it any easier to absorb. We're all still reeling a bit prior to getting our heads around these end of life activities that we all want to ensure are completed. And we will hang onto the positives over the coming months - laughing, crying, and loving.