[Jbsx19]

Hi Trish,

Thanks for thinking of my niece at a time like this for you. Part of the reason I am here is to help clear up some of the misinformation regarding clinical trials. At NO time will your daughter's health be at risk in a clinical trial at NIH. These are not "placebo" type trials. Depending on the trial they decide to put her in based on their own re-diagnosis, She would be given the standard ATG/CYclo and then a clinical trial drug that they may be investigating to see if it effects the outcome(maybe quicker response,maybe longer remission, )..Poss chemo instead of ATG..poss right to transplant...But you have the Best of the best making that decision on how to treat her specifically. Dr Neal Young (ATG,AA etc..) and Dr. John Barrett or Dr Childs (transplant) There are teams of doctors and fellows making rounds every day..I had probably 10 drs everday and then Grand Rounds once a week..doctor on the floor 24 hrs a day..my 2nd nite there a Dr sat with me all night talking and helping me decide what to do.
Anyway,..I was completely healthy May 7th (best shape of my life)..May 8th felt tired,out of breath walking to the mailbox(I had been walking 5 miles 3Xweek) and "funny little purple dots on my arms and legs"(petechia)May 9th woke up and my head was "funny" could almost hear my heartbeat in my head(no red cells..no oxygen to the brain) and then went to the bathroom..yikes..I apparently was bleeding internally..no nosebleed,etc..called my Husband home from work and went to the ER. They were shocked that I walked in..didn't "look" sick..then they got my CBC results and ...they were freaked..I was freaked..and hung platelets and took me up to ICU..with no platelets you can bleed out,have a brainbleed,etc..and with no white cells, your own body can kill you..we all have fungus and bacteria that normally our white cells kill off..without them..well not good..It's called neutropenic..Had to take my temp every 2 hrs (at home that weekend before NIH) super antibiotics on hand in case I went over 100.2..take one and rush to the ER.. you have a window of like 2 hours..special diet (no yogurt,fruit,fish,fresh veg,anything that might have bacteria)..so that's my story..and 5 years later I am sitting here able to tell it..What a gift, after being told even at NIH that they weren't sure I was going to make it.
So , I know the whole " Clinical trial" thing sounds scary...not to worry..honest..and NIH..WOW..what a place and since I was treated there they have built a whole new hospital..unbelievable..all private room, hardwood floors,flat screens/computer,no hospital food...you call the cafeteria when you are hungry and they bring it to you, I could go on and on..I mentioned the nursing care already..That's what these nurses do..bone marrow patients..that's it..NIH is your government at work for you...There is also shuttle service from the hotel to NIH or the airports...

I am here to help if you need anything......Judi