Dr. Butte is amazing :)

Dr. Crosby,

I’ve attached a copy of the email I just sent to Dr. Kachru—Dr. butte was amazing. I had so little expectation for Noah’s appointment (I usually run bad at UCLA),

it was such a breath of fresh air that Dr. Butte knew or had heard of all of the people we’ve seen (Jean-Laurent Casanova, Dr. Jennifer Puck in San Fran, Dr. Eric Hansen at the NIH) , and he even studied at CHOP (so he was particularly annoyed when I couldn’t remember the doctor who oversaw our study over there :)…it was weird experience for me to give a doctor the ‘best of’ medical highlights over the last twelve years and have the doctor know everything or everyone I was talking about.

Dr. Butte also had good suggestions for immunologists in Canada, but he said Toronto or Vancouver were the best (and only) places..I kind of already sensed that, but the problem is Ottawa is so cheap and my cousin lives there, but there is literally nothing going on in Immunology in Ottawa…it’s a hard call…if I have to make it right now, it would depend on what Noah’s godfather could buy…Ottawa is so much cheaper…

(Hopefully I’ll just get this business off the ground then it won’t even matter cuz I’ll be here for the long haul anyway 🙂

Thanks again for everything. I frustrated him a little because I couldn’t get all my details straight (I couldn’t sleep all night cuz I was so nervous I’d oversleep and miss the appointment…so I was a little loopy…),

but Dr. Butte definitely got the message that there is something seriously wrong and he seems like he’s going to make a genuine attempt to get to the bottom of everything…

All that’s all I ever wish from a doctor, ever, my entire life—to try their best—god knows I don’t expect the answer (even though I keep hoping), I’m just grateful for the effort 🙂

Hopefully, this will save Noah from a lot of the suffering me and the rest of my paternal family tree endured for years—hopefully Noah will get fixed in time so he can lead a normal life, then can do great things with his brilliance besides spending his life chasing down experts 🙂

Thanks again for everything—

Love,
Tara 🙂

Begin forwarded message:

From: Tara Leigh
Date: January 8, 2018 at 10:49:28 AM PST
To:
Subject: Dr. Butte is amazing 🙂

Dr. Kachru,

Dr. Butte is amazing. I was so nervous about this appointment I ended up staying up all night (so I was a little frazzled when I was talking with him…’um yea, had that, and that, ugh, forgot that detail’ 🙄), but thankfully he could see through the madness and got the message that there’s some kind of underlying major dysfunction.

The main point I wanted him to understand, is that Noah’s medical story isn’t as severe as mine so far—*however*—Noah’s story echos exactly what I went through in early childhood, but Noah has always been a few degrees *worse* than me—

(For example, I had a lot of sinus infections and uti’s growing up as a child, but never to the point I had be on daily antibiotics like Noah, and I’ve also always had chronic constipation my entire life, but never to the point I was hospitalized like Noah or had to take daily Miralax like Noah—)

Everything is a little shade darker…hence why I’m really hoping to get the answer…maybe we can save Noah before the worst of the storm even begins 🙂

Warmly,
Tara

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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