Day 2: The Siblings
Much in our family has changed since Shane took his last breathe on March 30, 2015.
Our focus then and now has always been on Chase and Ella and now Will.
To encourage them to look at the positive things in life. To let them know that bad things can happen to good people, but you don’t have to let it define you.
Studies have shown that the traumatic loss of a sibling can lead to many difficulties in adulthood in terms of physical and mental health. The stats are unnerving.
I will never forget our clinic visit the first time after we returned from Boston. Everyone at CHOP had been briefed on our meeting. They knew, we really KNEW the reality of our situation and the outcome for Shane. Our social worker approached me with care and asked what we needed. I replied: “I need help preparing Chase and Ella.”
We are truly grateful to the child life program at CHOP. Without this program and our amazing child life specialist, I don’t think Chase and Ella would be coping as well as they do.
Grief changes over time. Their grief changes.
Through it all, I am comforted knowing they have support to get through those tough moments and milestones.
Day 1:
I’m going throw it back to a post we wrote at the beginning of childhood cancer awareness month in 2014.
Today we continue Shane’s fight.
He should be here.
He would be excited to start his first day of Kindergarten at the same school as his siblings.
Cancer took that moment and so many countless ones away from us.
This month, Go Gold for the kids. Share their stories. Remember their smiles and help us work on their legacies.
#SFD #HelpShaneFightCancer #ARMSaware
🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗
This is our family celebrating September 1, 2014. Today is not only Labor Day, but it is the start to childhood cancer awareness month. This time last year I would have had no idea about it either. It’s like they say, you never think it will happen to you and then it does.
We join millions of families in this emotional journey. We fight for our children as they become little heroes, warriors. We hold them as they endure their sedations, surgeries, biopsies, chemo, and for some radiation. They are still little and young and may not feel as though their voices are being heard. That is why we have to help them find their voice, be their voice and draw attention to their cause.
That little guy in the picture is our Shane Metzgar. He was 8 months old when diagnosed with stage 4 Alveolar rhabdomyosarcoma or rhabdo or ARMS for short. It is a vicious beast and was caused by a gene translocation. We have no idea when the tumor started, but it doubled in size from it’s initial discovery to his diagnosis.
Shane’s diagnosis was a grim day- March 28, 2014. No one ever wants to hear their child has cancer, but you most definitely don’t want to hear “we were afraid it was this cancer,” poor prognosis, and only 1 in 10 survive. You see, rhabdo is treatable, but it comes back.
We are determined to remain hopeful and positive. We live each day for him and keeping our family whole. Some days are easier than others. We take one day at a time and can’t make plans like we used to because everything is pretty much dictated by his treatment schedule and how he is feeling. Some people get it, some don’t. We are just trying to be normal, but real in our situation. My husband and I look at each other and say “I can’t believe we are going through this.” We both then add “everyday until we beat it.”
So, even though we are still considered new to the journey we are in it forever. Cancer messed with the wrong family. We are determined to create something that will be lasting. We still need time to sort that out.
In the meantime, we encourage everyone to take a stand and spread the word about childhood cancer- the least funded cancer research by the government.
#HelpShaneFightCancer
Your smile is everything. It’s a reminder of the joy and laughter you brought to our lives. Whenever things are rough, I often think of your face and am reminded of your strength and resilience…my goodness it was great even only at the age of one.
When things got rough and you were very sick, Chase’s main concern was how we would celebrate you in the future.
That was development of our annual Celebration of Life.
It was way too difficult to celebrate on your actual birthday, so now we do that ahead of time and keep your day to ourselves.
Life gets busy and each year we plan around camps, time constraints, etc. However, we are sure to celebrate you and remember that moment when you entered this world and left the incredible impact you had on it…even though brief.
As Ella says, “I’m sure God is throwing Shane a big party today.”
Happy heavenly 5th Birthday Shane! You are dearly missed and loved each and every day.
Tomorrow will be Shane’s 5th birthday.
We were only privileged to celebrate one birthday with our little man. We made it an amazing day for him and us and everyone around us who loved and supported him. We will never forget those who took the time and came out to celebrate that day with us and especially him.
I keep seeing this image pop up in and around FB world. When I first saw it, it took my breath away. It’s probably the most poignant piece I’ve seen representing what we feel every day after the loss of Shane.
It’s also quite timely considering what tomorrow represents.
*July is Bereaved Parents Month. John Maddox posted this powerful photo with the following quote, “We may look as if we carry on with our lives as before. We may even have times of joy and happiness. Everything may seem “normal”. But THIS, “Emptiness” is how we all feel…all the time.”(The artwork is called Melancholy by Albert György in Geneva, Switzerland)
We are so thankful to everyone who came out on Saturday to our 4th Annual Celebration of Life event!
We successfully raised $20,000 this year!
Thank you to the 2007 soccer players (and their parents) from the Fishtown Rowdies, 1776 United FC, Philadelphia Union youth academy team and VE Gunners for their participation in the 2018 soccer friendly! What a talented group of players!
Thank you to our board of directors, who go above and beyond to ensure this day runs smoothly.
A special thank you to the ASHS Mini-THON and AJHS student volunteers, as well as our friends and family who volunteered their time throughout the day!
Thank you to Kendra Scott for hosting a trunk show at the event!
Thank you to Kelly Goldin, our child life specialist from CHOP’s Palliative Care Team and Charles Keller, our research partner from The Children’s Cancer Therapy Development Institute for graciously speaking at our event and letting our supporters know exactly where all the money raised has been going.
We hope to see you all next year!
Note:
I included this picture of Shane to announce the money raised. I’ve used it before, as it is one of my favorite memories of him.
We were in CHOP for an overnight chemo session and the nurses had just announced we could leave for the beach. At the same time, a goal was scored in the World Cup games in 2014, which we were watching. Days before we had received the results of Shane’s scans after 2 months of treatment. His tumors had disappeared and our family was in the greatest spirits!
I can’t help, but think Shane is proud of the legacy he has left and the future it holds for children diagnosed with these high risk cancers.
Thank you so much for all your support!
Our 4th annual Celebration of Life event will KICK off with soccer friendlies starting at 12 pm, followed by the opening of the COL at 1PM.
Thank you for all of those we registered already!!
Tickets can be bought at the door and remember all proceeds go to childhood cancer research and programs.
The YETI raffle for early registration is now CLOSED. I will be picking the winner in a little bit….stay tuned!
While there is so much involved with planning this event, Paul and I both agree this is the one day of the year where this event makes it a little less sad.
Today, we celebrate our precious Shane and his courageous fight and we are excited about the future treatment advancements for alveolar rhabdomyosarcoma.
Tentative schedule for the day:
Soccer friendlies start: 12 PM
COL/raffles open 1 PM
Lunch 2 PM and will be a continuous flow throughout the event
Speakers 3PM
Raffles close 4:45 PM
*Inflatables will be open 1-6
*Face painting will be open 1-4
* Snow cones will be open on/off throughout the day
Prior to the COL we are hosting a few soccer friendly’s starting at 12:00. Schedule below.
Special thanks to the three teams attending and we have t-shirts.
Fishtown Rowdies (blue)
1776 (red)
Union plus a few VE kids (green)
12:00pm – Rowdies vs. 1776
12:40pm- Rowdies vs. Union
1:20pm- Union vs. 1776
We appreciate the participation from these area soccer clubs!
Shane loved soccer.
He spent much of his life on sidelines watching his big brother play and most days you would see him doing pullbacks and shooting on net at home.
It’s a wonderful addition to our event!
Our Celebration of Life event has brought people in from all over the Philadelphia area and beyond.
We are so thankful to highlight our city with generous ticket donations to some of our area’s incredible places.
Thank you to Adventure Aquarium, Longwood Gardens and Philadelphia Museum of Art for your generous ticket donations to our 4th annual COL!
I’m often asked on weeks like this:
“How do you do it?”
It’s busy and for the most part my mind is compartmentalized.
But once during this week of prepping, I have to let it all out.
This morning Will reached for his clothes and pulled out a onesie. It wasn’t just any onesie. It was first Chase’s and then Shane’s. It’s the Pearl Jam one in our cover picture and is framed in our home.
Then we read books. He again reached for a book and it wasn’t any book, it was Shane’s book, “On the Night You were Born.” Honestly, I haven’t read it since I read it to Shane. The cardinal towards the end caught my breath.
During Will’s nap (yes a shocking surprise today), I put background noise on while I printed and organized the raffles.
For whatever reason, “Collateral Beauty” was on.
Tissues later, I got all the bottled up feelings out.
Our COL event is like planning a birthday party every year for my son who never gets to have that birthday party. It’s to honor him and children like him.
It’s to raise awareness and research funds to change the outcome of these high risk childhood cancer realities and to allow these children to live to have their birthday parties.
“The meaning is simple, the damage of a child’s death is so dark and severe that a parent cannot see the full picture because of the tragedy.
It may take a lifetime to understand that within that dark and ugly place there was a beauty and love there so strong that not even death could dishevel it ….that in fact, the beauty is that love continues even after and through death and the impact of that trauma brings us closer to the love that we shared for that person and all the ways love of that individual has affected our lives and the lives of others.”
Thank you to the The Philadelphia Inquirer for supporting our 4th annual Celebration of Life event!
We appreciate your ad sponsorship as well as the two great raffles items featuring our Philadelphia Eagles!
Check out our ad!
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