First, because I know it’ll be the most asked question:
What’s on her face?
It started as a raised rash on her forehead and we’ve been putting a steroid cream on it.
Over the last few days it spread to her chin, neck, and now her cheek.
So what is it? GVHD. Because, of course it is.
It’s is the most common type of chronic GVHD and usually resolves itself… eventually.
The best part of the day?
HER HEMOGLOBIN IS HOLDING STEADY!
This is great news and tells us that her current treatment plan is working.
Which brings us to the next topic: are we moving?
Well, we had our care team meeting and it went well.
It was beneficial to get all of Avery’s care teams into 1 room to discuss a treatment plan… together.
We were able to air grievances, ask questions, and explain what we would like to see going forward.
We also had a long discussion with the Endoscopic Specialist about his understanding of GAVE, his confidence in treating it, and his treatment plan for Avery.
We talked about best-case scenario, worst-case, as well as long term.
We let them know we’ve been emailing the Boston team and gave them the names of each doctor we’ve been communicating with.
Again, the GI Dr recognized the names and assured us he could provide the same level of care as the Boston team.
BMT-wise, Avery is looking great. Therefore, our main concern is her gut issue.
We told him we needed to know he was confident in his understanding of GAVE, because we didn’t want to stay, only to watch her decline and get into a situation where she’s unstable and unable to move.
He still believes he can treat her here.
Plus, he believes, if she continues doing as well as she is, we could be home “soon-ish.”
Being near our family sounds like an incredible plan… as long as we can feel we can trust in her care going forward.
It’s a lot to consider.
Finally, the team promised to have these meetings every 2 weeks, or as often as we needed going forward.
They told us most families just need to know the plan, not always the “why.”
We let them know we’re not those parents. We want as much info as they can give us; and then more.
We’ll see how it goes this week.
Seeing several comments about still going to Boston (on IG).
One quick thing to consider:
They haven’t accepted our referral/second opinion.
We’re in the early stages of communication.
If Avery stays stable on her current treatment plan, Boston (and our insurance) may not see the need for us to move.