June 25, 2009
Hello to our family, friends and new friends!

The trip to DC was just amazing for me. It was equally amazing for RALLY! We arrived in DC late Sunday evening, it took us about 9 hours to get there driving. On Monday early afternoon, we went for our first meeting with the CureSearch staff. It was very informative with all kinds of number figures, money figures and letting us know the purpose of our visits with congressional reps (like we didn’t know why we were there). It was a day of many meetings with the CureSearch staff and then we got have a meet and greet session with all of the families. Almost 500 people registered for this event. It was awesome to walk around in a room full of people who were there for the same reason…our children! I met soooooo many amazing cancer parents. It was so great to finally hug these strong and wonderful parents and to put faces with names. It was very emotional for me and at times overwhelming.

I say overwhelming because with so many families there with most of them being angel parents, it was a bit “LONELY” for me where I was. And I know I did not get to meet EVERYONE that was there, but in our circle of families we met and talked to, I was lonely parent standing with a child who is still alive. Obviously blessed with having Roman’s life, but on the other hand extremely difficult at the same time to digest what I was witnessing and what I was a part of. The even more scary part of this is of the 9 families or so that were with me, 7 of them lost their child to EVIL NB. That is why I say it was extremely difficult for me at times. I was surrounded by the ever so horrific reality of my son’s deadly disease.

They had a guest speaker by the name of DR. Reaman????  Head of CureSearch doctors and research etc. He gave a speech about the great strides they are making in research for ALL, which is Leukemia. And then got to Neuroblastoma research. Talked about how deadly NB was and that it is still a childhood cancer that the survival rates have not gone up that much. NB is deadly anyway you look at it. Well all I heard from him was poison, torture, toxic and death. Not a good speech for me having a 3 year old NB child and certainly not a good speech for any NB parents who lost their child already. I know research is vital in finding a cure, but in this particular study he was referring to is the antibody study for NB and adding it into the protocol and making it part of protocol from now on….I have a problem with hearing those words like torture, toxic, poison and yes even death…one child in this study died from toxicity…to me, that is not worth their mere 20% increase with all the pain and torture that goes along with it. There has GOT TO BE A BETTER and SAFER WAY TO TREAT OUR KIDS WITH CANCER!!!!!!!!!!!!!!! For those of you who are new to our journey, we absolutely DECLINED any further “treatment” as far...
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