Next Steps

Abi is one step closer to beginning immunotherapy. 

Our Girl and her Dog  - Of course, this has nothing to do with this post. The photo tho.

Our Girl and her Dog - Of course, this has nothing to do with this post. The photo tho.

Going into today's meeting with Dr. McGaughey, we had three primary objectives. They were: 

  1. To answer some lingering questions, mainly regarding how we'd manage the risk of Abi coming off of chemotherapy.
    • As a quick reminder - Abi's cancer is aggressive, and every indication is that the chemo was keeping it in check. Chemo was her own personal Hodor - keeping the White Walkers on the other side of the door. Chemo was never going to defeat the disease, but it was buying time, and time is good.  By switching from chemo to immunotherapy, there's a chance that we'll advance on the disease - not simply hold it in check. But there's also a clear risk that we could lose ground without Hodor there to Hold the Door.
    • In our discussion today, Dr. McGaughey emphasized that he thought this risk of extensive growth was pretty small for a four month immunotherapy regimen. But he also agreed it makes sense to monitor more frequently than we've done while Abi has been treated with chemo. Up to now, Abi has had scans every six to nine weeks. Today, we agreed that we would get a baseline scan next week -  then repeat every four weeks. 
  2. To better understand what immunotherapy looks likeHere's what we found.
    • Meeting with Dr. McGaughey next Wednesday, and begin treatment immediately thereafter.
    • Instead of the current chemo cycle with three consecutive days of infusions - each one literally lasting hours - immunotherapy will be a single 30 minute infusion, which will be repeated every three weeks...just like chemo. That is, Abi gets two and half days back every single cycle.
    • Monthly scans. Not great, but necessary. See number 1.
    • Different side effects than chemo. Some risk of skin rashes, lung inflammation, and intestinal issues. These can be serious, but Dr. McGaughey indicated these are infrequent, and manageable.  Chemo comes with nausea, pain, fatigue, nausea, pain, and nausea.  Oh...and NAUSEA.  We're all hopeful that Abi will feel less crappy with the new course of treatment.
  3. To get a report on Dr. McGaughey's discussion with the doctors at Memorial Sloan Kettering and to get their view on our planned transition.
    • We didn't check the block on this one. Not yet anyway. We expect Dr. McGaughey and his colleagues at MSK to talk before next Wednesday.  Why? There could promising studies available in New York for which Abi would be a good candidate. Or  the MSK team may have a different view on how to proceed. In either case, Abi appropriately believes it's important to consider their views before fully implementing the transition.

So that's where we stand. Overall, a very positive discussion with the doctor. Abi and John are feeling good about the path forward, and even if we're a little anxious, feeling good about the manner in which we're managing risk. Feeling very good about feeling very good (instead of crappy)  during treatment week. 

But mostly - feeling positive about trying something that might actually beat this hideous disease - not just hold it in check.

How can you help?  

  1. Pray that when the MSK doctors and Dr. McGaughey talk, they share confidence in the way forward. 
  2. Assuming we proceed with immunotherapy next week, pray that it eliminates every last trace of this disease.

But also - and don't forget these things:

  1. #Live more fully today in some tangible way - big or small.
  2. #Dare to do something you've always been afraid to do.
  3. #Make something...something that without you, would never exist. Something that makes the world a little better, and mostly
  4. #Love someone...recklessly.  

In love,


 (P.S. When you Live, Dare, Make and/or Love - will you take a moment to share that with our girl? It will actually make her stronger. It actually will.)