About
Shane’s Future Days is a 501(c)(3) volunteer non-profit foundation whose mission is to raise awareness, research funds and assist families currently battling alveolar rhabdomyosarcoma and other high risk childhood cancers. EIN: 47-2556395
What is Alveolar Rhabdomyosarcoma?
Click below to learn more about this rare childhood cancer and what we can do to fight it.
What does your donation goes towards?
Rhabdomyosarcoma is currently non-curable pediatric cancer and your donation goes directly to the research to help fight it.
This is a fairly difficult one.
This video is of Shane 18 days before he passed. You can see the toll the radiation took on his head. Those are the remains of radiation burns.This looked GREAT compared to what it looked like a week before. It started as a small red patch at the base of his head. We lathered him up with aquaphor, but nothing seemed to work. It grew and got worse. It looked sore and eventually became infected. He was put on antibiotics and thankfully we found a special lotion used to treat radiation burns.
This was difficult. If it looked like this on the outside, our thoughts always wondered what it looked like on the inside. He smelled for a good while of burnt skin. I can’t even describe the feelings and thoughts Paul and I experienced at this time. All we knew is that this would buy us more time with Shane and for his siblings to be prepared for what was ahead.
He is also wearing his favorite PJ’s. Those are the ones he wore at the end and I sleep with them under my pillow every night.
Day 13:
Shane’s type: alveolar rhabdomyosarcoma: Less than 10% in his age group
“Sometimes a picture is worth a thousand words.”
15 years ago today our country experienced a horrific tragedy.
We will always remember that day so clearly.
We remember those who lost their lives, those brave rescuers and those who lost loved ones.
Paul and I were living in the DC area at the time. Paul’s apartment was just blocks away from the Pentagon. It left a significant impact on our lives.
Today, I think of grief those children who lost their parents, parents who lost children and all those who lost in connection to this day.
I think of this song, sang in tribute to those on 9/11 and how music is a powerful tool in navigating through grief.
It was also playing when we got into the car after Shane’s funeral services.