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Hello everyone. Johnny saw his neuro at UC Davis on Friday. He agreed with doubling the Rilutek, accompanied by regular liver function tests. There is some concern about Johnny's breathing which was mentioned by Dr. Rothstein at Johns Hopkins. To establish a baseline and eliminate concern, Johnny's now scheduled for a complete pulmonary function test next week. I hope he can complete the test without laughing. There's a great scene involving a breathing test in one of our favorite family movies, Rocketman. :lol:

Because of the IV issues, Dr. Maselli disagreed with the ceftriaxone, and substituted amoxicillin instead. He said he has several patients on amoxicillin and it will serve the same benefit as ceft.

Hopingforcure: Pls keep us informed on your experiences with the ceftriaxone.

I brought up supplements, Vit E and CoQ10 and Johnny starts those soon.

This is possibly the last posting on this lonnng thread. I'm so grateful to all of you who have voiced concern, support and advice. It was from this site, I learned to always bring copies of all previous medical records, to take notes or tape conversations with doctors. Rose had awesome, detailed directions to Johns Hopkins. We've received words of wisdom, offers of rides to/from airports, humor and more from people we don't even know. I continue to be overwhelmed by so many caring individuals, most of whom have their own DX and loved ones to worry about. My deepest gratitude to all.

There were countless 'pearls of wisdom' on this thread, but two I will always remember. Rose said: "There are no guarantees." I always knew that but somehow at that time, I saw that simple phrase with a whole new, life altering meaning and it continues to echo within me.

Wright responded to my very first posting and one thing he said was: "There is cause for concern." I deeply appreciated his honesty. For some reason, that phrase has popped into my head at every doc visit, every time I'm awake at 3am.... It would be a good book title.

I'll continue on this awesome site. I don't always know what to say on other threads, but I need to attempt to give back a little of what has been given to me and my family.
 
Valya,

Thank you for the update!

As far as wondering what to post or how to respond to other threads, you've been through so much and gained so much experience with all you've gone through, my guess is you'll know just how to help when the time comes.

Zaphoon
 
Valya,
So good to hear from you again! Our prayers will continue to be with you and your family-
-b
 
Val,

It sounds like you're starting to become accustomed to what is to be. Its amazing isn't it, to go from being stricken, pretty much blindsided, to having a plan to make it all work.

Please know that you, Johnny, and your family are never far from my thoughts, as well as many others, I'm certain.

I really hope he is the one, that he is unusual enough, and enough interest will be paid to his particular case, where real progress will be made.

Please keep us updated. You've always got friends here!
 
Ahh Rose...'accustomed to what is to be'. Yes, this is true, you're very observant. Last Friday, I spoke to one of the coordinators for a talamapanel study out of San Francisico. She asked all sorts of detailed questions about his diagnosis, symptoms, etc, etc. After hanging up, I realized I got through that entire conversation without sobbing hopelessly into the phone, saying 'srry but I can't talk when I cry'. That was a first since this whole nightmare began.

Couldn't get through the super bowl family thing though. Had to leave early. There are still bad days, where I can't deal with it but the shock is over. In place of the joy and lightheartedness I used to feel inside, I now have a deep, profound sorrow which rarely goes away. I don't know when/if the 'joy' will return and to be perfectly honest, don't care one way or another if it does or not.

On to other posts, where I promise to be more cheery ;)
 
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