Sunday, February 28, 2010

Our life now

On June 1, 2009 our life changed forever. We enter a world completely different and unknown to us. A life were you embrace every day to it's fullest and make memories to last a lifetime daily just in case. A life were every holiday, birthday, and celebration is spent not dreaming of the some days but living in the now. The life of a family effected by childhood cancer and Rhabdomyosarcoma.

Did you know each day 46 schoolkids find out they have cancer? that in the USA alone over 12,000 kids a year have cancer? just the US?! 1 in 4 will not live 5 years after their cancer diagnosis and those that do have moderate to server side effects from their chemo and radiation? 80% have metastatic disease when they are diagnosed compared to only 20% of adults!

All of this is unacceptable! just because they are under 18 and can not truly have a voice, our children are limited to treatment and financial funding because they are kids! It this was your child would you want that? If this was President Obama child do you think it would be just as under funded? or George Bushes child?

Cancer is completely overwhelming to the family, the extended family, and even to our community. I live in a community of over 100,000 people with surrounding area of close to 1/2 a million. The closest children cancer treatment is over 2 hrs away! The closest sarcoma center for kids is over 8hrs away! That is unacceptable to me!!

Cancer treatment for Rhabdomyosarcoma has not changed in over 20 yrs. The VAC protocol my son is on the the Gold standard for his cancer and it only has a 50% cure rate for his staging and only to 65 to 70% care rate for the best staging! that mean 1 in 3 will not survive Rhabdo's.

In the last 9 months I have learned how to treat my son, how to give him shots, clean his g-tube, feed him liquid nutrition, count his caloric daily input and output. I have learned my way around ft. worth, Dallas, and new york city. I learned blood counts, cbc's, medical insurance lingo, Medicaid, mdcp, and DADS for the state of Texas.

As we go off treatment next months I will learn what to look for if he relapses, how to live in a cancer free world again. how to have a normal life again. how to move on.

Now I hope for a new mission. A world were a Rhabdomyosarcoma community comes to life. A world were new hope and new cures are found more quickly. Where discussion are open to family and were each family has access to the best doctors in the country at the time of diagnosis!

Nine months ago I entered this world a stranger and completely overwhelmed. Now I embrace it and Pray to God no one else has to hurt alone. Know we are out here. We have HOPE! and our children WILL SURVIVE RHABDOMYOSARCOMA.