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.
A few of Shane’s favorite things
We all know that Shane had cancer. But, do you know other things about him? Our son was so full of life and loved many things, here are just a few of his favorite things.
Favorite color: green
Favorite book: “Goodnight Gorilla”
Favorite toys: Vtech smart cars, anything that played music and sport balls
Favorite stuffed toys: Curious George and Tigger
Favorite song: “Get Lucky” by Daft Punk
Favorite movie: “Frozen”
Favorite activités: -running in the middle of Chase’s nerf gun fights with daddy and handing daddy the darts
-stealing all of Ella’s stuffed animals-this is why Shane has his OWN Curious George, because he tried to take hers
-running laps around our house, as well as the hospital
-kicking the soccer ball around-one of his last words besides “mama” was “goal!”
Favorite TV show: Elmo, particular the episode “Balls.” He used to sing the jingle all the time
Favorite place: the beach
Favorite snack: Pirate booty
Favorite food: strawberry bagels from Hot Bagels &More and broccoli- I had to fight with CHOP to give it to him at 9 months old. They told me it was a choking hazard. The doctor had to get involved to have it be put on his list of acceptable foods.
Favorite clothes: Pearl Jam onesies with bab
y legs
Favorite blanket: his ani and anais elephant blanket
Favorite animal: kangaroo-every time we went to the zoo, which was a lot!
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.
“Sometimes a picture is worth a thousand words.”
Today, I got by “with a little help from my friends.”
It’s Back to School day for Chase and Ella.
It’s a difficult day on many levels.
First, Ella entered Kindergarten.
This alone saddens me.
Where have the years gone when my little shadow was playing school and trying to read over her brother’s shoulder?
Then there is the reminder that Shane WOULD have been entering Pre-K.
He would have followed in his sibling’s footsteps and gone to the same, wonderful preschool and perhaps have had the same teachers. This alone is enough to rip my heart in two.
I thought about this notion on Monday. Ella mentioned it yesterday, stating that she was going to Kindergarten and “Shaney” was headed to Pre-K. How we wish, right?
I thought about the Back to School pictures and when Ella returned with her badge, I made one of my own. It’s the reality and the truth. Today, was beyond difficult. I am thankful for those who helped distract me.
But, Shane is always there….
Paul and I walked the kids to the bus stop and walked home hand-in-hand. As we went up the driveway, a brilliant cardinal flew across our path.
