So Erik called the doctor yesterday who published the paper and she was so kind to call us back last night! She didn't have a whole lot to add but just nice to thank her in "person" and tell her we are so willing to be contacted etc. We asked her what motivated her the reason Yale did the study was because they had an adult patient - how statistically odd is that? Less than 50 cases ever of an adult. Blogger wouldn't let me save it as a PDF so if you want to read it just email me at erik_karrin@hotmail.com - basically, Elan received the absolute best treatment possible based on 144 patients retrospectively. This paper, though very small statistics, really gives us peace of mind. The chemo protocol is just so devistating and it would be wonderful if we cure Elan without it so others can follow the less toxic path.
I just hope with us, the previous girl in Iowa 7 yrs out cancer free and the actual documentation of more patients, even though retrospective, will help a future family to get what they want without the heartache we went through. Being turned down by one of 4 proton centers in the WORLD able to handle kids (my parents are so amazing btw they were so there for us!); This is because each treatment they have to be inoculated (put to "sleep") so they have to have a full board of anesthesiologists - all super amazing and awesome - i wish they were here for Elan's MRI's! - Elan was 36 times in Indiana BTW and every time he has an MRI etc. At this point I think Elan has been put to sleep around 50 times.
But being accepted by one is BEYOND amazing esp. since we are not doing standard protocol. We just know how loving and compassionate Indiana is. Cancer kids up against cancer kids really is a tough deal at other locations IE Boston. when it comes to who gets the beam and who doesn't everywhere else besides Indiana. Thankfully Indiana is non profit - the only one that isn't! They were willing to take us on.
It is so sad to know that so many people don't realize how unscientific the world of science really truly is vs what they think. It is all politics. Thankfully 10 years of being in the science world prepared me for the truth of the situation - even though I was still shocked at how political it was/is. I am just so, so thankful for being able to talk to doctors and read statistics! I know that plus our personal belief in not wanting to have blood transfusions because of Biblical principles we have our Elan. An Elan that is at the park, back yard, picking his nose etc. We were given 1 to 6 months and sent home with hospice. Tonight we have a kid saying new words and singing super annoying Barney songs!
Below are videos for my Grandma Jane - she is amazing By the way! See, he is doing great! (You have to push the play button and wait a minute for the videos to load)
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