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.
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.
I’ve been seeing this over the last couple days and it brought me back.
This was us with Shane during his entire treatment. We had gloves in our diaper bag, at my in-laws, in his room…everywhere.
As I mentioned before, we were incredibly blessed that Shane took to his chemo treatments so well. He did get sick maybe a handful of times, but nothing like some kids get. You know, the ones who have parents carrying puke bags or buckets around with them as they stroll the halls getting their treatments.
Anyway, he just started his first chemo. It was overnight and the next day he puked all over me. The nurse on duty looked horrified and said: “you will want to change your clothes now.” I said, “Seriously?” She turned and nodded and then added, “Maybe even shower, if you can.”
Another memory that came back was when Shane went home with Etoposide. This was his at-home chemo and our last treatment option.
When we began, I asked the doctors about proper usage, like designating an area in our house where I would draw it up and administer it. Then I asked how to properly dispose of the syringe. They told me no one had ever asked that before. A lot of people carry this type of chemo in their purses(!).
Given my background, I decided to designate an area in his room. I had gloves, tubs, chucks (absorbent pads from the hospital) and used an empty laundry container to dispose of the syringes. The chemo (in liquid form) was stored in a tub, along with the laundry container high on a shelf in his closet so that his siblings never touched or got near any of it.
It’s heartbreaking. I remember how stressful this was. I would lay awake at night wondering if I remembered to clean up properly. I would check and re-check the containers to make sure there were no spills.
You do whatever it takes if it will save your child.
Even though Shane’s life ended before it began, he is a hero. He fought just as hard as those who survived.
He has left his mark on us and others touched by his gentle spirit.
We continue his fight and for children like him. Someday his cancer will have more options, better treatments and better survival rates. Sometimes it takes the collaborate effort of parents like us to make a difference. That’s what we are fighting for now.
On 9/1/16 , our child life therapist from CHOP’s PACT team came over for a visit. The kids completed craft projects to celebrate Shane and childhood cancer awareness month. During this time, Chase and Ella can safely talk about their feelings of Shane and cancer in general. Kelly has been with them since December 2014 after I asked for help in preparing them for the inevitable.
In that time, she has taught them about their feelings and emotions and how to control them and more importantly that it’s OK for them to have various feelings.
Kelly went to Chase’s school after Shane passed and did a project with him and his classmates. Her team also held a separate meeting for parents on how to talk to their kids if they had any questions about what happened to our family. She supports Chase’s lemonade stand endeavors, as does her family. She is always just a phone call away if we have questions or need suggestions on how to help Chase or Ella sort through any situation.
We are incredible thankful for her and all she does for our family and other families like ours. To us, this is an important facet of the PACT team who supports families when their children go home on hospice.
Shane’s Future Days was proud to present Kelly’s psychosocial team with $2,000 again this year to continue their efforts to help families in similar situations.