Another day, another Avastin (#9)

Hi to all,

Braeden had another Avastin infusion today.  This was done because his steroids were increased to 8 mg a day last week, and his numbers have not changed or improved from the 10 pounds.  This number continues to concern, and scare the crap out of us.  His left hand is at 2 to 3 pounds and if you have followed this blog, you know how little he is able to do with that hand.  (For reference, Braxton his twin, is able get numbers in the 90 pound range.)

Below are pictures of him with each treatment he has had thus far.

Ideally, we would love to see his hand strength numbers rise, and keep rising.  Unfortunately, we need have to have realistic expectations.  It is likely, he will never have full use of his hands again.  Braeden, is not sure if he will be able to write or type to meet the expectations of being a high school junior.  I can't even begin to think how that is going to work out.  

I am planning on contacting "my school people" who have been fantastic throughout this past year and  a half at the high school and plan a meeting,

Chop Update

So far, we have a full day of appointments on 8/18, and an appointment on the 19th.   Plane tickets, hotel, and car have been reserved.  8/18 cannot get here soon enough.

National Health Institute/Undiagnosed Disease Network

Dr Landi told us today, that UDN has contacted Dr. Smith.  Below is the email to Dr. Smith. Big prayers are needed that NIH & UDN will get in involved with his case.  

This tumor has taken away quite a bit from my boy.   Right now, I would be happy if it just returned a few things.  

Continued prayers are appreciated.  Love to all.

#BraedenBrave

#MrUnlucky

Delays, tears and a lot of disappointment

Braeden’s appointments at CHOP  have been delayed until 8/18/2020.  The reasoning is the whole team would not be able to see him next week while we are there.  Dr. Minter, who is coordinating all of the team was not able to get us neuromuscular appointment till 8/18.   I will keep you posted as I know.   I know that things happen for a reason, but this stings a lot.  

#BraedenBrave

#MrUnLucky

Shot in the Dusk...

"No, I wouldn't say it's a shot in the DARK, but rather a shot in the DUSK."   This was Dr. Fuchs response when I questioned, if Braeden having a spinal fusion would be a shot in the dark.  

Comforting, I know...

He had just finished telling me that out of a team of 4 spine physicians, that only one of the physicians would consider doing the surgery.  Believe me, we don't want him to have the surgery.  

But there is something very wrong, there is no doubt.  

Just in the past six weeks, Braeden's right hand has deteriorated even further.  

His hand strength in May averaged 18 to 20 pounds.  

In the month of June, his average fell to 13 to 17 pounds. 

In these first few weeks of July, his strength is averaging 10 to 11 pounds.   

Braeden told Dr Fuchs today at this rate, he wouldn't have use of either hand in 6 weeks.  His left hand strength has been at 3 pounds for months.  He has been "one handed" for months using his right.   

It is alarming how quickly his right hand is deteriorating, and the amount of muscle wasting and atrophy the right hand is now showing.  

The simplest of things are becoming even more impossible for him.

Last night, we were playing a game, that required him to write his answers.  He was only able to write by holding the pen with a closed fist.   Besides, all of the other things that is going on with him.  How in the heck is he suppose to get through what will already be a challenging 11th grade school year?

Plans were made today for Braeden to skip Avastin tomorrow.  (If CHOP deems surgery necessary, they don't want it to be delayed by 4 weeks.  This is the amount of time he has to be off of the Avastin if he requires surgery.)   Clearly, we don't have 4 weeks to spare.  

Could it be that because he has been off of the Avastin that this is causing the quick decline of his right hand?  If you know the answer, just put MD behind your name and say you work at Duke.  Your guess is just as good as anyone else's.   

Our band aid solution to stabilize his hand strength is to begin the  massive doses of steroids again.....I can't even say how much this sucks for him.  The side effects are terrible.  

He is to continue to wear the C-collar.   (I can't tell you how much fun this kid is having.)

CHOP update:

We plan to fly out on Monday.   He has an EMG first thing Tuesday morning at University of Pennsylvania.   (EMG=PAIN.)

We have a MRI scheduled on Tuesday at CHOP. We will see the neuro-oncologist, and the neurologist that day as well. 

Everyone's love and prayers and thoughts are greatly appreciated.

#BraedenBrave

#MrUnlucky

Countdown to CHOP 11 days and counting

I am so very excited to let everyone know, that we have been scheduled to be seen at CHOP on July 21st at  10:15 am.
Eva, the scheduler, with whom I spoke to make this appointment is planning on calling me back today at 4 pm call her back today at 4 pm to let how me know how many days we need to plan to stay. 

This news couldn't have come at a better time.  This past Wednesday, Braeden recorded his lowest right hand strength of 10.2.  We restarted his steroids in hopes that this would improve his numbers.  Steroids are a last resort, and I know his doctor was hesitant to restart them.  It was definitely a "between a rock and a hard place" decision. 

Next week, Braeden has a follow up with Dr. Fuchs on Tuesday.  This will be the day we discuss if he thinks Braeden needs a spinal fusion.

On Wednesday, we have a tentative Avastin infusion scheduled.  If we plan a surgery on Tuesday, this appointment will be canceled. 

Until next week!

#BraedenBrave
#MrUnlucky
#B.A.S.S.