“Time of year” is continuous and cyclical. Its grief squeezing the breath out of me. It’s mostly hidden, but ever present.
The holidays are over and time slows a bit. I feel like I’m drowning in thoughts, memories, all painful and wishful. I worry over things I can’t control. Hello grief. Hello anxiety. Thanks for waking my winter night’s dreams.
We get through an event or significant time, we exhale for maybe a week or two and then BAM! It starts all over again.
This time of year hits me harder than any other. So many things changed during this time. Even after 4 years, I can close my eyes and vividly remember with stabbing pain in my chest those moments I can barely believe we got through.
Research is the key. We are so grateful for our partnership and that Shane’s tumors cells have assisted in pushing forward a clinical trial.
It’s honestly the best gift we ever gave and one we never had to think twice about.
The Childhood Cancer Project is proud to support the work of Dr. Charles Keller and The Children’s Cancer Therapy Development Institute’s Legacy Autopsy program.
The Legacy Autopsy was created to enable parents of children with cancer to donate tumor tissue to research. The cc-TDI team and The Childhood Cancer Project believe that this kind of research will be field-changing, especially for rare childhood cancers for which cell lines and mouse models do not exist, and for which functional studies have never before been performed.
“The decision to donate our son’s tumors to research continues to give us hope. It allows us to fight for our son and so many others until a cure is found.”
— Shane’s parents
A huge thank you to everyone who has supported The Childhood Cancer Project, without you we couldn’t support so many families and the cc-TDI Legacy Autopsy Program.
For a bereaved parent, each new year draws us further from the one we lost.
2019 will mark 4 years since Shane passed. It’s heartbreaking to realize we have been living without him for that long.
But, we move forward with him by our side.
He is remembered each and every day by us. I know Paul and I have done the best for our children when they can openly speak of their brother, laugh at the memories, cry at the moments lost, but always feel his love and presence within them and around them.
We want them to live forward with Shane as their guide.
They are proud of the legacy Shane has left. His tumors have brought forth amazing research and we have assisted in research and helped families faced with similar circumstances. All at our own pace. We balance our life, our family and Shane’s legacy in a healthy balance.
Thank you for continuing Shane’s legacy with us. May 2019 bring more remarkable movements forward in the fight against alveolar rhabdomyosarcoma.
Thank you to Jennie Rose, Amanda Seguinot, Lorac Nedgo and Deborah Pann for your generous donations.
The Target Cuthbert Blvd made an incredible $500 gift card donation to the CHOP PACT team on behalf of Shane’s Future Days. Thank you for supporting the PACT families and issuing these gift cards in Shane’s name❤️
We had an incredible holiday gift drive season for 2018. None of this would be possible without all of you. Thank you for your support and remembering our sweet Shane.
Merry Christmas and Happy New Year you you and yours!
Paul, Michele, Chase, Ella, Shane and Will
The 21st is almost here and I wanted to pause and say THANK YOU to those who helped Shane’s Future Days brighten families affected by childhood cancer this holiday season.
-Our CHOP PACT team gift card drive and Holiday Gift Drive
Not only were we able to donate over $500 in gift cards,
we also helped a couple families through the PACT team
with all their holiday gifts
*Thank you to Kimberly Parker Cox, Bethany Parker,
Samantha Kane, Hope Anne Marie, Helene Metzgar, Roxanne Mayoros-Blasy and many more not on FB.
**A special thank you to the Falcone (Liz Rauch) family for buying gifts for specific members of our PACT families.
-Thank you to Wicked Cool Toys for your proceeds donation from your amazing 1st annual Santa’s Workshop event! We truly appreciate your efforts in putting on an outstanding event and supporting our families this holiday season.
-Four years ago, we moved in the middle of the most difficult part of our lives. It was crazy, overwhelming and before the move actually happened, we had no idea what our future held with Shane. We went into it before our trip to Boston.
We closed on 12/6/14 and that night Shane wound up at CHOP’s ER. We were quarantined for almost a week since he had RSV. We moved in 12/19/14 and on 12/22/14 I was back at CHOP with Shane for treatment. We came home on Christmas Eve. Somehow, every child’s room was set up as well as most of the house, along with 3 Christmas trees up and fully decorated.
It was a whirlwind with so much anxiety about the future. Our main goal was to get Shane into his new house and for him to live and enjoy it.
Now that….is holiday stress
Thank you Wicked Cool Toys for an incredible event! The decorations and activities were above and beyond amazing.
For every grieving parent, the start of the holiday season brings on some strong emotions. Thoughts, memories, what-if’s…
While we feel this, Paul and I push forward through the season, sometimes blurred eyed through the tears.
We celebrate the season with Shane by our side.
Today, his tree was completed. Every year we put up our “Shane tree.” We have ornaments of his favorite things, along with new ones we add each year.
This year while on vacation, Paul and I found a glass yellow balloon which reminded us of he storybook “My Yellow Balloon.” Ella found a new Tigger ornament and Chase got his pack of Arsenal ornaments and wanted Shane to have the gold one❤️
Today is Giving Tuesday. I encourage you to make a donation big or small to your favorite charity. Many rely on this time of year to further their endeavors for the next calendar year.
We are currently running a gift card drive to assist families under the care of the Children’s Hospital of Philadelphia’s Palliative Care Team (PACT).
If you are unfamiliar with PACT, this is a team that guides families whose children are terminally ill. More than likely their child is on hospice care, whether at the hospital or in their home.
For us, the PACT team was a separate entity from the oncology unit. They do not get the same funding as the oncology. These doctors, nurses and child care specialists were there to guide us during the most heart wrenching moments of our lives.
They helped us transition from daily hospital visits to (by our own choice) entering our home to check up on Shane and his health. They picked us up when we were told there were no more treatment options for our Shane. They held our hands and guided us towards the unknown.
**The PACT team’s child life specialists hold a special place in our hearts.
They guided our children through healthy grieving. The mental toll the death of a sibling can take is incredible. We are FOREVER grateful for their assistance (and continued guidance) in making sure Chase and Ella grow up knowing how to cope with their ever changing emotions in relation to Shane.
For us, they are a group of incredible people who day after day assist families who have to face the death of a loved one. They bring smiles to sibling’s face and give those children the one on one attention they need to get through some very rough times. They allow their patients to forget for a moment that they are sick. Most importantly they provide a safe space for these children and siblings to talk about their feelings and teach them had to manage them.
So, if you are inclined to give today. Any money donated today will go towards the PACT team to assist their gift card drive. If you would rather mail in a gift card, please do so to:
Shane’s Future Days
P.O. Box 168
Abington, PA 19001
To those of you who came to shop on Shopping for a Cause event at Kendra Scott in Ardmore and those who called in phone orders.
It was a great shopping day!
Also, “Thank You!” to those of you who sent gift cards for our CHOP PACT team gift card drive! We received some even before Halloween! 🙌🏻
There is plenty of time to mail those gift cards in too! We are collecting until December 21st.
Also, we have been busy starting our holiday shopping for our adoptive families.
This year we have four families who have a child with the same type of cancer as Shane, rhabdomyosarcoma.
Additionally we are assisting two more families through the PACT team.
We hope you get into the holiday spirit and help us spread some joy to families who could really use the support this holiday season ❤️
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.