Day 19: Shane’s Future Days

In December 2014, our friends urged us to create a foundation in Shane’s honor. We were still in the middle of our fight and it seemed like the furthest thing from our mind, but with their support and encouragement, Shane’s Future Days was established.

Research and advocacy were the main focus at the time, but as we moved further into our journey and experienced more,
we realized we needed to expand our mission to include assisting families battling rare cancers.

We are incredibly thankful for this past year.
Our 3rd annual Celebration of Life raised $17,000 this year!

Where does the money raised go?

Last year, we were able to expand our footprint as a foundation. We extended our support to the Children’s Hospital of Philadelphia’s Palliative Care Team’s psycho/social team.

This team was introduced to our family in November 2014 after we returned from our second opinion in Boston. Our child life specialist worked closely with Chase and Ella preparing them for the day when Shane would no longer be with us. They taught them to express their feelings and deal with their emotions in a healthy manner, through art at first and now they are able to verbally express themselves to us. They helped us create memories with Shane and have keepsakes to remember his amazing spirit.

Through them and other foundations, we have adopted families during the holiday season. Cancer is a financial burden. Having the financial assistance and someone to force you to celebrate, can help get you through the holidays and find comfort in the season more than you know. We also provide support to families throughout the year, when needed.

Additionally, Shane’s mouse model and tumor cells have assisted the Children’s Cancer Therapy Development Institute launch the first national Phase I rhabdomyosarcoma clinical trial. We are so proud that we have been able to donate $45,000 to date to this amazing research lab. This year, our donated funds went to their Curefast tumor donation program which helps continue research for rare cancers, like Shane’s.

It’s been three years since the establishment of our foundation and we feel like this is only the beginning! Thank you for being there from the beginning and helping us get this far.

 

Yesterday afternoon we attended the Drexel women’s soccer match against Villanova.

It was their Go Gold! game in support of the Kisses for Kyle Foundationand childhood cancer awareness month.

As mentioned before, Ella and Chase have been “adopted” by the team, so they went out to show their support!

They were treated to VIP seats in the news box.

It was a well played match with DU winning 2-1.

Day 15:

Shane continues to be on our minds every day.

When we do things, go places, we often reflect on what it would be like if he were here with us. To say he is greatly missed is an understatement.

Our children continue to reflect on their time with their brother. They speak of him all the time and believe he controls some things within our household.

Sometimes those thoughts and feelings about Shane translate into their school work. As we start a new a school year, I am putting away their items from last year.

This was a piece Chase wrote.

Day 7: Events for a Cause!

TODAY:
The Kendra Scott store at Suburban Square in Ardmore, PA is holding a Kendra Gives Back Sips and Sweets to benefit Shane’s Future Days during Childhood Cancer Awareness month!

When: Today, Thursday September 7, 2017 6PM – 8PM
*If you do not live in the area, you can call the store:
(610) 726-1838 and place an order throughout the day. Make sure to mention us, so we get credit for the orders!

TOMORROW:

Our local High School Football teams are set to match up tomorrow night in Cheltenham, PA to benefit Childhood Cancer!

Abington (Chase & Ella’s school)
vs.
Cheltenham (Paul’s alma mater)
The Cheltenham varsity football team has a home non-conference game vs. rival school Abington (PA) on Friday, September 8 @ 7p.

We hope to see you there!

Day 6:

On March 24, 2014 we became aware.
Shane was just 8 months old.

Day 5:

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.

Day 4: Shop for a Cause!
Head to the store or call up with an order on Thursday, September 7, 2017 from 6PM – 8PM and say it’s for Shane’s Future Days and Kendra Scott in Suburban Square will donate 20% back to us.
We will be using the funds raised for our Holiday Gift Drive!

Day 2:
IMAGINE ….🎗🎗🎗
Imagine taking a child to the hospital…
Imagine being taken into a small room and being told it’s a tumour…
Imagine holding a child down so needles can be inserted…
Imagine watching a child being taken to theatre for surgery…
Imagine holding a child screaming in pain, unable to do anything to help…
Imagine a child connected to several different lines at one time…
Imagine a child vomiting uncontrollably…
Imagine a child unable to leave their room, sometimes for weeks…
Imagine a child in so much pain, they cannot eat or drink…
Imagine a child being held down to have a tube inserted in there nose to feed them…
Imagine months/years a child may not survive…
Now imagine this is YOUR child
Be aware,

September is childhood cancer awareness month…

Please go gold for all the angels and heroes, fighting the fight. Change your facebook profile image to show your support

https://twibbon.com/support/glow-gold-september

 

Today is September 1st, the start of childhood cancer awareness month.
Every morning I wake up to this picture. It sits prominently on our dresser. My eyes immediately search to it. It’s beautiful and sad all at the same time.

It reminds me of our beautiful son. It reminds me of the journey he went through…those ups and downs. It reminds me that he should be here as a playful 4 year old. It reminds me to have strength each day, no matter what obstacles are ahead.

We’ve shared this month with so many other families since 2014. It’s changed us. It’s shown us what is important in life. It has us fighting on a daily basis to make a difference in##chi rare cancer research.

Thank you for sharing Shane’s journey. Cancer is terrible at any age, but when it’s a child whose life barely even began, there is no comparison. If we don’t stand up for Shane and other children like him, who will?

On Monday, Ella and Chase were introduced to Drexel University’s women’s soccer team.
The Kisses for Kyle Foundation has created a partnership with the team in support of childhood cancer. Ella and Chase were chosen to be part of this partnership!

You know how much our family loves soccer and some of us are Drexel alums, so we are so thankful for this pairing.
Ella was only 4 when Shane passed and for her this is a much needed mentoring partnership to encourage her and show the importance of hard work and most importantly, teamwork.
⚽️🎗