Friday, June 23, 2017


We like to take sweets to our sweet nurses when we can.
One of Eli's teachers made him a car cake.
We had a good first appointment with Dr. Dolly Aguilera at Children’s Healthcare of Atlanta on Thursday. Eli hasn’t had any more symptoms since Monday, and has gotten over his cold/sore throat. He has actually felt really good the last couple of days (except for when they wouldn't use his port to draw blood! So, now my free Friday includes a trip to TRU for a big Lego set... not a little one, a big one). He's been playful and talkative ... at least when it's just us in the room. When the doctor walks in he turns it off like a light switch. His blood work is not good enough to enroll in a trial (anywhere, not just Atlanta), so she is going to start him on a combination of chemos that are commercially available, but are part of a trial (the combination is the trial) that they've had two medullo kids on each with a "decent" response (yep, those are the kind of data that are good from where we sit.) Two of the chemos are what we just came off of that just really knock his counts for a loop. So, she's going to hold off on those just yet. She is also requesting Eli's tumor tissue for her to run some tests, to look for markers or hints as to what it might be vulnerable to. I have asked for this so many times! We have been to two of the biggest, best pediatric oncology hospitals in the medical capital country of the world, and they just looked at me like, "why". So, pray that Eli stays well enough for this month-or-more process to help find a treatment solution. She had an interesting theory for
his symptoms, too. It wouldn't really change the prognosis, but knowing the exact cause would help to know how to control the symptoms. We come back to Atlanta next week for a base MRI, and an appointment with a neurologist about his symptoms. Getting over that sore throat and cold has really helped his mood, so he seems to feel pretty good, and a whoopie cushion in his welcome bag is just what a Three Stooges fan needed for a four-hour trip home. We brought a wheelchair with us (you'll see in the picture) because we just didn't know how much walking we would need to do (we might get lost), and we can't predict whether his symptoms would suddenly worsen. Turns out, we accidentally parked right where we needed to, and accidentally wandered right up to the correct building. (Finding my way the first time at MD Anderson was traumatic) It was hard to get a handle on the size of the facility in Atlanta or even the shape of it because there was a lot of mature landscaping that hid everything, kept it shady and cool, and very "hilly", so some floors tucked underground here and there. But it wasn't the typical downtown kind of scary location, at least the little we saw today was not. Thank you for your prayers today, and continued attention.

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