Tommy's Email to Friends/Family on 7/14/2022

Hi all:

I promise this update will be shorter than the last.  Overall, Brayden is doing great - tremendous progress from where he was on the last email.  There is still a road to travel, and some uncertainty about what lies ahead, but all signs are pointing in a really positive direction.  There have been four things we have been watching daily and all are improving steadily or in really great shape:

• His Creatinine level (marker for kidney function) was between 7.0 and 8.0 for the first three days in the hospital, where less than 0.6 is normal.   He was at 4.6 when I emailed last week.  It was down to 2.1 on Wednesday and has been consistently dropping between 0.3 and 0.5 per day.  The drops likely will slow as he gets closer to normal.  We will have a new lab tomorrow.  Huge progress and a signal of much better kidney function!
• Not only has he continued to pee on his own at the levels they want to see; it has gone from being filled with blood to normal or very close to it.
• His GBM antibody level (the antibody doing the damage) was 72 on the initial baseline from 6/29, where <1 is what we want.  Last week it was down to 16 and this Monday it was down to 5, with several more procedures under his belt since.  We will test this again on Monday.
• His Electrolyte Levels are all in the normal range and have been for 10+ days.

The doctors believe tomorrow is the last Plasma Pheresis procedure that he will need.  All of his other meds are oral.  So they are discharging him tomorrow, and he will be home in less than 24 hours!  He will still have to go back in one or multiple times a week for blood work, will still be on steroids and a few other meds for a period of time, and will have two more Chemo treatments (around 8/1 and 9/1).  He will also still have his Central Line in for at least another week or two - in case they decide they need a few more Plasma Pheresis treatments as they follow the antibody level.  

There is still a waiting game, to see if his kidneys can get all the way back to normal function, and a waiting game as he grows to make sure they can support him.  But the outlook compared to what it was two weeks ago is awesome.

Ali and I are so incredibly thankful for two things: 1) the care team at Children's Hospital, they have been nothing short of amazing, and 2) all of the love, prayers, thoughts and care we have received from all of you.  We have absolutely felt the prayers.  All of the support has meant the world to us.  Please keep the prayers coming to hopefully get him across the finish line.

Tommy