New Year’s Eve….
This will be entering our third year without Shane. My biggest challenge is not living in fear. I fear more now than I ever did. I mean, we live for the moments, but I approach a lot of my life now with deep caution. The death of your child can certainly rip away any innocence life once held.
I took the week off. Christmas was wonderful and then I was over it. The planning, sleepless nights, added responsibilities and everything just wore me out. I had plans, but the reality is, we live very busy lives…all of us do. We needed to have this downtime to just be in our home, letting our children enjoy their gifts and just being together without any plans.
The anticipation of the New Year is exciting.
It’s definitely challenging when a part of you is missing. I find it difficult to not be positive and hopeful for the future. It’s one of the most important things Shane taught me.
So, Cheers to 2018!
May it be an inspiring year for research and advocacy for our children.
There are just so many things that occur in a family’s life when your child is diagnosed.
The weekly trips to the hospital, the difficulties in port access, the tolerance of the chemo and/or radiation, the starvation for scans, the unplanned transfusions and then hours and hours you spend waiting for appointments, scans, results etc.
Then there is the balance of life at home with other siblings, immunocompromised systems…the list goes on. Then add the holidays to all of this.
A snapshot a what a childhood cancer family goes through.
This is what real stress and worry is about. It’s not the shopping, cooking and prepping.
For a brief moment, we hope we have let those families have a bit of relief and/or let them know they are being thought of.
Thank you to those of you who contributed to our holiday gift drive. Thank you for those who have supported our foundation this past year.
We have a bright year ahead of us.
The research from Shane’s tumors has exciting developments thanks to the incredible efforts of Children’s Cancer Therapy Development Institute. We are pinning down a date for our fourth Celebration of Life and I’m working on a side project that I hope can assist more families and research.
Merry Christmas and Happy Holidays!
As grieved parents we walk around this world wondering about Shane. Is he happy? Can he see us? Wonder what he would think of this?
This week I busied around fulfilling our wishlists. As I pulled up to one store to get things for a family, I hear Shane’s favorite jam, “Get Lucky.”
When I entered the Disney store this week, “Let it Go” blasted on. Frozen was Shane’s favorite…of course that was influenced a little by big sister Ella.
What I notice most lately is Will and his wandering looks and smiles and laughs.
When I nurse him, he always gazes at Shane’s picture above my right shoulder. He often looks out and has conversations too. We can’t help thinking he is having a chat with his big bro.
Today is #GivingTuesday, a worldwide day of giving. You can celebrate today by donating to our organization.
Who are we?
We are a small nonprofit that has grown organically through the love and support of friends and family to create a legacy in our son’s honor and memory. Our mission is to raise awareness, research funds and support for families fighting alveolar rhabdomyosarcoma and other rare childhood cancers.
Who is Shane?
Shane was our son. He was diagnosed at 8 months of age with stage 4 alveolar rhabdomyosarcoma, a highly aggressive, currently non-curable form of cancer. His chance of survival was less than 10%. The treatment options for him and others have been unchanged since the 1970’s. He endured chemotherapy, surgeries and radiation. At 19 months he passed away on 3/30/15 after a one year, two day battle.
What have we done?
We donated Shane’s tumors to the Children’s Cancer Therapy Development Institute (http://www.cc-tdi.org). Shane’s Legacy Gift of tissue after life has become a useful tool for rhabdomyosarcoma research, and has even helped a new phase of a clinical trial get started. The lab created a primary cell culture from Shane’s tumor … it grows extraordinarily aggressively and quickly, but the lab team says that makes it useful as a “the ultimate challenge” to find new treatments that slow it down. Many new drugs have been tried, and few have worked.
However, there is a bright ray of sunshine: the lab team has found that a particular drug does a great job in Shane’s cells to turn off the major mutation. The results from Shane’s mouse (and 15 other patients’ mice, also mostly from Legacy Gifts) are resulting in a new Phase I-B study of the drug and the drug-plus-chemotherapy for children with rhabdomyosarcoma. The reason this is so notable is that most new treatments for rhabdomyosarcoma were developed on mouse models from 1987, 1982 and earlier. Shane’s mouse leads the “new avatar army” of mouse models that show how contemporary patients will respond to newly-proposed treatments. We can’t be more excited to see if this new treatment with the drug plus chemotherapy will benefit other children with rhabdomyosarcoma.
Child life programs:
We are forever grateful for the assistance we received from the Children’s Hospital of Philadelphia’s Palliative Care Team’s child life program. Our child life specialist has played an important role in our children’s ability to grieve and cope with the death of their brother.
We continue to support this facet of their program in hopes that other families going through an unfortunate diagnosis can find the support they need.
Families affected by childhood cancer:
As a family we has experience a diagnosis and loss of a child through childhood cancer, we can relate to all the familial aspects that are affected by this. We adopt families during the holiday season to provide financial relief and stress of the holidays, so that they can enjoy their time with their family. We also provide gift cards and assistance throughout the year.
Thank you for your consideration!
I know it’s been a awhile, but I assure you we have been busy behind the scenes planning and reaching out to begin our holiday giving program. Everything this year has been slow. I mean when the weather has been in the 60’s (not anymore!), it’s hard to think that the holidays are right around the corner!
We currently have families lined up and are awaiting their wish lists.
The arrival of the holidays fills us with excitement and anxiety. We started the month with a scary accident that landed us back in a medical setting. Thankfully it wasn’t serious, but the entire situation sent us into emotional turmoil and we are still feeling its affects.
What others don’t realize is that it creates a ripple effect that triggers things in our and our children’s lives.
After the loss of Shane, I’ve realized that nothing is “normal” for us.
As we balance the emotional affects of the situation, enter in the
holidays. As happy of a time it can be, at times it can be quite sad when you are missing an important piece of your heart and family. Creating new memories and traditions while missing Shane tugs at our hearts.
Will has brought new life into our family unit. We are so blessed to have him and we often say how Shane picked a good one for us. The new baby brings about a new dynamic for us not just in everyday life, but in our life as a cancer family.
Some have said to us that we can move on from what happen to Shane because we have Will. They are wrong. What we do with Shane’s Future Days gives us purpose and continues Shane’s legacy and allows us to live in a world without him.
Helping families during the holidays is therapy to us. It helps us get through the season. We look forward to the shopping as we remember being on the receiving end and how a simple act can bring so much relief and knowledge knowing the kindness of others.
So as the holidays begin, remember to be thankful for your blessings. Remember those who have lost and be gentle. Sometimes in life we create our own stresses, not realizing there are others dealing with much greater and real stresses that are beyond their control.
Happy Thanksgiving. Thank you for your continued support.
We hope everyone enjoyed Halloween!
We have been busy lining up our families for our holiday gift drive! It’s hard to believe the season is upon us already!
As a family affected by cancer, we can tell you that while you want to really live and enjoy those moments during the holidays, it can also be difficult.
Financially cancer can ruin a family and make it difficult to afford the holiday they want to give their children. Then there is the time aspect. When you are stretched thin on time because you’ve been in the hospital for treatments and often times juggling a home life with siblings, you simply don’t have the time.
If you would like to assist this holiday season, please contact us.
For every $50 donation, we will send you a Shane’s Future Days shirt!
As we experience our first holiday with Will, I am full of memories of the two Halloweens we were able to spend with Shane.
I think each year about what Shane would want to dress up as and what he would think of this holiday.
His first, he was only 3 months old, so he was a “go with the flow” kind of baby. By his second Halloween, he had pretty strong feelings about wearing hats on his head.
Even so, the holiday is a loved one in our house and every year I try to make it special….pumpkin picking, pumpkin carving, decorating the house (Ella has now expanded to include her bedroom in this, as this is HER favorite holiday) and of course spending the night trick or treating with them. They are so full of excitement.
So, we take the time to experience the moment and these times with our children. Seeing their smiles and hearing their laughter is much clearer to me since my precious baby boy, Shane taught me to really live.
Happy Halloween sweet Shane. You are dearly missed on this and every holiday.
Wow. Thank you for such heartfelt congratulations and blessings for Will ❤️.
This weekend was busy as Fall weekends usually are for us. It was filled with many soccer games.
Today was also senior day for the Drexel Dragons women’s soccer team. While we were unable to make it to the game, we are thrilled for their win at today’s game (Chase’s team won too!).
We are thankful for their partnership with Ella and Chase that was arranged through the Kisses for Kyle Foundation. Thank you Sharon❤️🎗🐞
Here is a wonderful article written about the experience: