When your child has cancer, a lot of people make assumptions about you.
-People assumed that Shane’s cancer was genetic.
-Some assumed that I did something, i.e the food I ate.
Nope. We only eat organic fruits and vegetables and I’m pretty sure at the time, Paul was annoyed that I always shopped at “whole paycheck.”
-Many suggested that St. Jude’s could save Shane.
Unfortunately, you cannot seek help from St. Jude unless they are studying that exact cancer at that exact time. They weren’t.
-Most said to us, “I couldn’t even imagine.”
Honestly, you can’t, until you’re faced with it.
-Others said “you must be so strong.”
As the saying goes: “you don’t know how strong you are until you have no choice.”
We had no choice.
Shane’s cancer (alveolar rhabdomyosarcoma) was treatable in terms of keeping him at a decent quality of life, but for how long? It is not curable because it’s known to come back. When it comes back, the fight gets harder.
We had no choice, but to give him chemotherapy (at 8 months old!?!). Surgery was not an option for him based on the initial tumor’s location. We eventually chose radiation to attempt to keep him alive longer in hopes of a clinical trial or new treatment option.
Make no assumptions, we fought for Shane.
We continue to fight for children like Shane.
If it were your child, you would too.
Childhood cancer is not rare.
Childhood cancer is the #1 cause of death by disease for children in the United States. Childhood cancer receives less than 4% of the federal budget for cancer research.
#SFD #HelpShaneFightCancer #ARMSaware #letsdobetter
The weight of childhood cancer
During the month of September, I try to post a little bit of our childhood cancer journey. Sometimes I slip up and get busy and other times, this month…the memories, our reality is just too overwhelming.
I feel as though it’s our responsibility to take part in raising awareness for childhood cancer. I am not alone.
Speaking with some advocacy peers tonight, I realized the insane reality that WE as parents are leading the awareness campaigns. We all deem this to be a responsibility of ours, but as one of them mentioned, it takes it’s toll.
So, that’s all I have to say for today. I wish I could say the month hasn’t gotten me down yet, but it’s only the 12th and I can’t even remember what I walked into a store for. I’m thankful for the alarms on my cell phone to remind me where each child has to be on what day and time.
Please join me in helping spread awareness this month. Help Shane’s voice be heard.
# SFD #HelpShaneFightCancer #letsdobetter #ARMSaware
I try to ignore it. Brush it aside like my behavior and mood is because it’s back to school or because we were traveling or I’m trying to find our groove.
Sounds good, right?
But, I can’t deny it. My husband knows me better than anyone, well except for my mom.
People assume that having Will has healed our broken hearts. I’ve even had to defend myself from numerous comments within the childhood cancer community because we’ve had another child, while others have just isolated us.
Of course, our hearts are fuller and we get another chance to experience the “firsts” and the “lasts” of having another baby.
But, we are also reliving those moments we had with Shane. Not always, but certain moments, looks, actions and of course milestones.
Will’s 1st Birthday is in two weeks.
My grief has crept up slowly, but now we know what the trigger is.
Childhood cancer does that. It causes PTSD and other anxieties in parents who have lived the journey. We’ve watched, comforted and cried through life’s toughest and most beautiful moments.
We are incredibly thankful for our partnership with the Children’s Cancer Therapy Development Institute.
As a parent, you feel helpless when your child is fighting for their life. While, our story did not end the way we wanted to, we are able to continue Shane’s fight and legacy through cc-tdi.
The guidance and compassion we received from Dr. Keller when Shane was with us and the continued support from him and his research team after Shane’s death has been inspiring.
Shane’s tumors have furthered their research endeavors for alveolar rhabdomyosarcoma.
While bittersweet, our family could not think of bigger gift than the gift to continue research to help other families so they can have hope for their children.
This month, if you feel inclined to support childhood cancer awareness, please consider a donation in Shane’s honor to continue the research he sacrificed to begin.
#SFD #HelpShaneFightCancer #ARMSaware #letsdobetter
Today Chase and Ella went back to school for the 2018-2019 school year.
It’s a mixed emotions type of day.
Shane would have joined them both.
Today was supposed to be HIS first day of Kindergarten.
It hurts my heart to know there is a missing person who should be standing beside them, taking his first bus ride and meeting his teacher for the first time.
Would he be like his brother and wear soccer jerseys every day? Would he be like Ella and absolutely love school? What would be his special thing about school?
The days and milestones missed will follow us in this lifetime. Today is one of many.
Cancer took that from us.
#SFD #HelpShaneFightCancer #ARMSaware #letsdobetter
Thank you to everyone who battled the winds and came out to Chase and Ella’s Alex’s Lemonade Stand!
Ella’s outspoken poster advertising and Chase’s lemonade distribution led to them raising close to $600!
Many thanks for another successful year raising awareness and research funds for childhood cancer.
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.
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.
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)