Shane’s Future Days is a 501(c)(3) 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 .
TODAY is our shopping for a cause at the Kendra Scott store in Ardmore.
We will be there from 12pm-2pm. Stop in or call in an order and mention Shane’s Future Days so that a proceed of the sales will go to childhood cancer research.
If you are local and call in an order, ask to have your purchase be sent home with me to save on shipping charges.
As a reminder of why we do what we do, I will repost a memory that I wrote November 11, 2014.
It’s been almost a week since we had Shane’s MRI. A lot has happened and things about to change.
Unfortunately, the MRI showed a 1.3 cm nodule in his pancreas. All other organs are clear and the site of the primary mass has continued to shrink (mm’s). At the time of diagnosis, his pancreas was littered with tumors. Next week, Shane will undergo a ct and pet scan to check if it is cancerous, but the radiologist is certain it is recurrent. They will discuss his treatment options and decisions will be made in the next two weeks.
Clearly this was a big blow to all of us. Shane is doing so well and was responding to the chemo. A relapse….already, before the end of treatment?
The next day we drove to Boston to visit The Dana Farber Cancer Institue. If you remember, we had this trip planned in the beginning of September, but then Shane came down with his first ever fever. The mood had changed a bit, but the original anxiety I had was gone because nothing could be worse than what had just happened the day before and we were there for help, answers. The doctors spoke very eloquently to us about our situation and the reality we face. What is happening with Shane and this relapse is typical for his type of cancer. There just is not enough research or knowledge on it, like adult cancers. The doctor described this as the “wind before the storm.” There is no cure for his cancer, so we rely on treatments and hope that he will be able to maintain a good quality of life while doing so.
The biology of his cancer in combination with the type makes it even more difficult. He was stage 4 when the lumps were discovered because it’s so aggressive. It was caused by a fusion gene whose transcription factor is thought to drive the gene expression causing a worse prognosis. To a former researcher, it’s frustrating and clear to me.
The doctors don’t want us to lose hope, no matter what. They had suggestions for different chemo drugs and to enroll Shane in a immunotherapy program set to launch in February at CHOP. Finally, they want us to enjoy him and be grateful for how beautifully he has gotten through these past 7 months of treatment. That in itself is his miracle.
Paul and I did not have the time to truly process this news. A special thank you to my good friends, Kris and Steph, who helped distract our sadness, brought us a care package and dinner while in Boston. We then drove straight from Boston to Chase’s soccer game and have just been going ever since. We took time yesterday and today to work through things. My in laws took Chase and Ella down the shore to give us time with each other and Shane. A night to cry, drink and cope. Today we took him to the zoo. It was a great day. He continues to not look sick- aka the Gerber baby.
I have to find a silver lining to all of this. I’m glad it happened now. He was not supposed to be re-scanned until January. This blow was huge, but if it happened then, I’m not sure I could pick myself up and move forward then. We would have been done with 42 weeks and then find out? How much bigger would the nodule have gotten, would there have been more? We have some time and we can do something.
We also need to live more. I want to take him to Disney and do whatever is going make him smile and shimmy. He is so full of life. It’s just heartbreaking.
I encourage you to share Shane’s page in order to raise more awareness. The whole reason there is no cure is because there isn’t enough research. Research requires funding. All of this can’t happen without making people aware of the serious underfunding of childhood cancers.
Wicked Cool Toys is hosting it’s 1st Annual Santa’s Workshop Charity Event!
‘Tis the season for giving back! Come support childrens’ charities (including US- Shane’s Future Days) and have holiday fun – all at a real toy company! More info: www.wickedcooltoys.com/SantasWorkshop2018
Admission: $20 per child (adults free!)
– One photo with Santa (hard copy and digital file)
– A free toy ($10-$20 value). Choose from Pokemon, Cabbage Patch Kids and more!
– Holiday activities and crafts
– Raffle ticket – win prizes!
– Light refreshments and more!
Shane’s Honor Video for the Children’s Cancer Therapy Development Institute
This is WHY we do what we do!
This is a gift card drive for the families under the care of
The Children’s Hospital of Philadelphia’s PACT team.
Many of you have reached out to us during past holiday seasons and have helped.
We are assisting specific families again this year, but it’s too difficult to list those items and have people purchase them because in my opinion there needs to be a quick turnaround of gifts. Everyone’s situation is different when under the PACT team’s care, however all of these families are under their care because their child’s diagnosis is untreatable.
Time is important.
This is why we thought the gift card drive would be an amazing way for our supporters who want to participate in helping childhood cancer families during the holiday season. The PACT team heavily relies on the donations of gift cards to assist these families.
These families are either inpatient or outpatient. There are siblings to the sick children and bereaved children too.
These gift cards would ease the burden to the parents who are primarily focused on the well being of their sick child, as well as maintaining normalcy to their siblings. It’s difficult to go out and shop when you are caring for a sick child. No parent wants to leave their side. These gift cards will be so helpful.
Suggested gift cards would be: amazon, google play, xbox, netflix, Giant, Whole Foods, Starbucks, Target, children’s clothing stores (ages of children infant to teenager).
Please: no restaurants unless they are specific to the University City area or iTunes gift cards as there is abundance of these at CHOP for patients.
Gift cards can be mailed to :
Shane’s Future Days
P.O. Box 168
Abington, PA 19001