Trust your intuition

Okay, we have a lot of responses/questions about Boston, and, no, we don’t have to explain… but let me try to respond to those here, all in one spot.

“You still need to go to Boston!”

“Boston is the best!”

Yes, Boston is the #1 pediatric hospital. No denying that fact.

But, it’s not as easy as just saying “we’re going” and it’s done.

We submitted our second opinion paperwork this weekend with the required fee.

We’ve heard from their intake director who was going to reach out to our BMT team.

We’ve talked via email to 4 different doctors (oncology, Leukemia, BMT, GI).

But, what we do NOT have from Boston at this point is any kind of acceptance into their programs.

And, since Avery is currently stable, they may not have a reason to take her; plus our insurance may not approve the transfer.

Next, didn’t this GI Doctor miss the GAVE diagnosis the first time?

Actually, no. Not the Endoscopic Specialist we’re working with now.

He wasn’t part of the first endoscopy. He came in as a “second opinion” doctor.

Once inside, he immediately diagnosed GAVE. He also knows the GI Dr at Boston and they have consulted with each other.

FUN FACT: Boston has only ever treated ONE patient with GAVE (years ago).

In fact, he told us we most likely won’t find a pediatric GAVE specialist because it’s not a pediatric disease. It’s normally found in patients OVER 70!

Not to mention, even in that age, it’s incredibly rare.

Do we feel confident with him? With the current treatment plan?

At this time? Yes. It appears to be working.

Plus, he has a Plan B and C goin forward, based on work he did with older Esophageal Cancer patients in the past.

What about other hospitals?

We reached out to Colorado (Rated #1 in Pediatric GI) and they have never treated GAVE.

We requested a second opinion from St. Jude and have not heard back.

We were told CHOP currently has no beds available.

Finally, Cincinnati is the best for TMA, but they are not GAVE experts either.

Hopefully that will help answer a few of the questions.

If you have more, leave them in the comments and we’ll try to answer those as well.

We welcome the conversation and are grateful for y’all!

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