Archives for September 2021

I can’t believe that I know someone who went to space and orbited the earth. (Watch here: https://www.youtube.com/watch?v=3pv01sSq44w )

Hayley Arceneaux is a childhood cancer survivor who is now a Physician’s Assistant at St. Jude Children’s Research Hospital.  The first time I was introduced to Hayley was in a DVD that was sent to me about 20 years ago when I was raising money for St. Jude by holding a trike-a-thon fundraiser in my job as a preschool director. In the video called “Welcome to My St. Jude”, Hayley walks through the hospital and gives a tour from her perspective. 

She was just a little girl. Nick was still several years away from getting cancer.

A lot has happened since then.

We met in person years later as we sat across from each other at dinner with mutual friends during one of my many trips to St. Jude. I said to the now-grown-up-version of Hayley “I think I know you from somewhere.” Then I realized that she was the little girl I had seen in that video years before. 

Small world.

Netflix released a 5 episode series called “Countdown: Inspiration4 Mission to Space”. In the first episode we are introduced to Hayley and her journey with childhood cancer. Hayley’s mom, Colleen, recounts walking through the door of St. Jude for the first time…

“Hayley and I flew to Memphis. I walked in and they had the reception desk. And I said ‘I’m here. My daughter is Hayl…’ and I just burst into tears. I couldn’t even finish saying her name. And I remember, I just kind of stepped back and trying to compose myself, and I feel these arms around me. And it was the receptionist, Miss Penny, and she whispered in my ear, she said ‘It’s gonna be ok. It’s gonna be ok. You’re part of the St. Jude family now. We’re going to take care of her, and we’re gonna take care of you, too.’”

As I listened to Colleen’s words, my mind flashed back to that cold, Wednesday night at 8pm on December, 14 2005 when Nick and I walked through those very same doors. We received the same love and care from our new St. Jude family in those first moments, throughout Nick’s treatment, until Nick’s last breath, and even now 15 years later.

Once a St. Jude family, always a St. Jude family.

I can’t help but think of Hayley’s mom and what she must have felt in the moments leading up to the launch of the rocket ship that held her little girl. I wonder if she was holding her breath. Because I sure was.

In fact, I felt like I had been holding my breath from the days leading up to the launch all the way until the Dragon spacecraft holding the Inspiration4 crew splashed down safely off of the Florida coast.

IT’S OK THAT YOU’RE NOT OK

One of the strange symptoms I had during early grief after Nick’s death was a feeling like I couldn’t breathe, especially when I had to talk. It actually felt like someone had their hands squeezed around my neck. It was hard to get words out. 

In her excellent book “It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand”, Megan Devine says this:

“We often think of grief as primarily emotional, but grief is a full-body, full-mind experience. You’re not just missing the one you’ve lost; your entire physiological system is reacting, too. Studies in neurobiology show that losing someone close to us changes our biochemistry: there are actual physical reasons for your insomnia, your exhaustion, and your racing heart. Respiration, heart rate, and nervous system responses are all partially regulated by close contact with familiar people and animals; these brain functions are all deeply affected when you’ve lost someone close.

Grief affects the appetite, digestion, blood pressure, heart rate, respiration, muscle fatigue, and sleep–basically everything. If it’s in the body, grief affects it.

In addition to physical effects, cognitive changes, memory loss, confusion, and shortened attention spans are all common in early grief. Some effects even last for years–and that’s perfectly normal.

It’s true on so many levels: losing someone changes you.”

Yes, it is true. Losing Nick changed me. I can never be the person I was before I experienced the death of my child. That’s not necessarily good or bad. It just is.

I remember the final days of Nick’s treatment protocol when he was in remission and everything was going well. We were getting ready to head back home to Ohio after living in Memphis, Tennessee for close to 6 months.

I had changed.

I had been living among sickness and cancer, suffering and death every single day while the rest of the outside world kept on living their lives going to work, and school, and the movies, and Starbucks, and Walmart. ALL of the friends I had been living with had a child with cancer or another catastrophic disease.

When Nick died, it was harder than ever to return home. How could I even have a conversation with someone else?  My son was dead. I was not bringing him home this time. There was nothing else to talk about.

When I left with Nick 8 months earlier to start treatment at St. Jude everyone had cheered us on.

“The neighborhood waved, and said

(Wendy), be brave, and you’re gonna be fine

And maybe it’s me

But it all seems like lifetimes ago

So what do I say to these faces that I used to know?

‘Hey, I’m home?’”   (Breathe – In the Heights https://www.youtube.com/watch?v=5l9UK3yQTfA )

I didn’t know how to go back home and jump back onto that speeding merry-go-round of life that had been going on without me. It was hard to breathe.

I felt guilty. I had failed. I am Nick’s mom and I was supposed to make things better. This wasn’t what I had planned. And I hated my new reality. 

REALITY, HOPE, AND A LITTLE INSPIRATION

Reality has been pretty awful for all of us these past few years. There are so many difficult things happening in the world right now. All of the anger, hate, confusion, sickness, separation, and so much death is overwhelming.

This is why the Inspiration4 mission was so important at this very time in history. We all needed them to succeed. We all needed to watch them come home healthy and happy. We all needed to see the world, OUR world, from the cupola of the Dragon spacecraft.  And when we see it from that vantage point then we can begin to see that we are one people, one crew, orbiting the sun over and over again on this big blue marble that we all call home.

The Inspiration4 had four seats on the Dragon spacecraft, each seat representing a different pillar Leadership, Hope, Generosity, and Prosperity.

Hope can mean something different for every person. What is it that you hope for? A new job? Time with friends? For the cancer to be gone? For the depression to lift?

This was Hayley’s seat. She represents the hope of survival for every child going through cancer treatment and the hope that just maybe one day, we will find a cure for childhood cancer so that NO child would die in the dawn of life.

The Inspiration4 has helped to bring that hope a little closer to reality by raising well over $200 million for St. Jude through their 3 day mission to space! 

A good leader creates an inspiring vision of the future then motivates and inspires people to engage with that vision. Jared Isaacman certainly filled the leadership seat well.

I am forever thankful for this man’s heart and his vision to help find a cure for childhood cancer.

Dr. Sian Proctor sat in the seat representing prosperity. We often think of this word in terms of having a lot of money but it is so much more than that. Can someone with no money ever be considered prosperous?

“Blessed are the poor in spirit, for theirs is the kingdom of heaven.

Blessed are those who mourn, for they will be comforted.

Blessed are the meek, for they will inherit the earth.

Blessed are those who hunger and thirst for righteousness, for they will be filled.

Blessed are the merciful, for they will be shown mercy.

Blessed are the pure in heart, for they will see God.  

Blessed are the peacemakers, for they will be called children of God.

Blessed are those who are persecuted because of righteousness, for theirs is the kingdom of heaven.

Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me. 

Rejoice and be glad, because great is your reward in heaven.”  ~Jesus

Now THAT is true prosperity.

Finally, Chris Sembroski sat in the seat of generosity. Donating money to St. Jude put Chris’ name in a drawing for this final spot on the Inspiration4 crew. 

St. Jude relies on the generosity of Chris and so many others. Why should you support St. Jude? Here are just a few reasons…

St. Jude doctors are working every day to find cures. Treatments invented at St. Jude have helped push the overall childhood cancer survival rate from 20% to 80% since their doors opened in 1962.

Support means that our St. Jude families never receive a bill from St. Jude for treatment, travel, housing or food — because all a family should worry about is helping their child live.

I often get this question… “Why should I support a hospital in Memphis, Tennessee when I have a local children’s hospital where I live?” 

My answer: Please support your local children’s hospital! Also know that St. Jude is helping many more kids than just the ones who go to St. Jude for treatment. St. Jude freely shares the discoveries it makes, which means doctors and scientists worldwide can use that knowledge to save thousands more children.

I can bet that your local children’s hospital treats kids diagnosed with cancer with treatment protocols that were developed at St. Jude.

Worldwide, more than 90% of children with cancer live in low- and middle-income countries. Too many of those children lack access to adequate diagnosis and treatment. Most of them will die from their diseases.

That statistic is about to change.

In the past few years, St. Jude has launched an ambitious initiative to improve access to care to children with cancer and life-threatening blood diseases in every corner of the world, and to develop plans to enhance its quality and provide better options for cure.

A donation to St. Jude greatly helps St. Jude families, families who live in your community, and families around the world. 

This is why I believe in the work of St. Jude Children’s Research Hospital. 

And this is why I am committing to biking 150 miles in the month of September. And why I set a lofty fundraising goal of $15,000…$1,000 for every year that Nick has been gone.

Click the link below or on “Donate Now” at the top of this page to access my fundraising page and to keep up with my progress.

https://www.facebook.com/donate/393371508823026/

One of my favorite parts about biking on our metroparks bikeway is when I come up on someone who is going slower than me and I have to pass them. I get to shout out “On your left!” so they have a heads up that I’m coming and will stay to the right so we don’t collide.

Now, before you think I am a fast rider, these “slower” people I’m referring to are dog walkers, joggers, and the occasional octogenarian biker. Slow and steady wins the race!

In the Marvel Cinematic Universe (MCU), the first time that Steve Rogers (aka: Captain America) and Sam Wilson (aka: Falcon) meet is in the 2014 movie “Captain America: The Winter Soldier” when they are both running laps around the Lincoln Memorial Reflecting Pool.

Since Captain America is a super soldier, he laps Sam over and over again. Every time he passes he says “On your left.” Sam gets so tired of being outrun that on Cap’s approach he starts yelling “Don’t say it! Don’t you say it!”

“On your left!”

Throughout the movie franchise, that phrase becomes so much more as the friendship between Steve and Sam evolves.

Steve wakes up in the hospital with Sam by his side. Steve sees him and says “On your left”…meaning “Hey, I’m still here with you.”

Then in the climactic ending of the 2019 film, “Avengers: Endgame”, Sam has been snapped out of existence for the past 5 years along with half of all life on earth. As Steve, and the few Avengers left, attempt to undo what the bad guy, Thanos, has done he hears a voice he hasn’t heard in half a decade… 

“Hey, Cap, do you read me? Cap, it’s Sam. Can you hear me? On your left.”

Sam comes in through the portal on Cap’s left, after having been one of the missing for 5 years, and they fight side by side to defeat their enemy. 

On his left. 

I Get By With a Little Help From My Friends

My big sister, Judy, was the best. 

When I was a little girl, I wanted to be her when I grew up. She enjoyed being with me even though I was 12 years younger. She took me and my younger sibs to the movies and rollerskating. She had us over on Friday nights for sleepovers after she got married. She also drove a 1965 powder blue mustang and wore huge bell bottom pants with platform shoes! She was the coolest person I knew. 

When Judy was 24 she had her first baby, a boy she named Michael Christopher. And I became an aunt for the first time at the age of 12.

Within hours, doctors knew something was wrong. Mike was taken by ambulance to Akron Children’s Hospital and in the first few days of his life he was diagnosed with Cystic Fibrosis. In 1974, the average life expectancy of a baby born with CF was 12 years old.

Mike was in and out of the hospital as he grew up. Judy worked full time and all of her “vacation time” was spent in the hospital with Mike. When Mike was 14 years old he became a big brother when Judy gave birth to her second son, Anthony, who was born with cerebral palsy.

Mike’s illness continued to progress and in 1998, he needed a double lung transplant. Even though he did well for several years, Mike’s body eventually rejected the lungs and my 25 year old, kind, hilarious, fun-loving nephew died on September 26, 2000.

So when Nick died 5 years and 11 months after Mike, Judy never actually said the words “on your left” but that’s where she always was. On my left. She had my back. She was the one person who really understood and listened through the dark days of early grief.

At a time when grief support did not exist at St. Jude Children’s Research Hospital, I had grief support from my big sis.

And then she died.

Several years into my work as a St. Jude Parent Adviser, I co-authored an article that was published in the Journal of Pain and Symptom Management, titled “Empowering Bereaved Parents Through the Development of a Comprehensive Bereavement Program”.

At the end of this article, I shared part of Judy’s story:

“Eight months after my son Nick died of cancer, my sister Judy died suddenly. She had been living as a bereaved mom for 7 years after her son Mike died from complications of Cystic Fibrosis (CF). Our family supported Judy in the best way that we knew how but, until I lost Nick, I couldn’t fully understand the depth of her grief. Judy was a single mom with 2 boys, one with CF and the other with cerebral palsy. Her life struggles set her up for complicated grief after Mike died and that is exactly what happened. When Judy was found dead in her home of an apparent heart attack, it was also discovered that over the past year of her life she had been living as a hoarder. Many times people become hoarders because they have experienced so much loss that they no longer can get rid of anything. 

None of us knew. 

In that moment, standing in Judy’s living room, I made a conscious decision that I would not end up the same way.

My sister is the reason why I became involved in the development of our bereavement program at St. Jude. I am determined to do whatever it takes to ensure that as few people as possible end up like Judy. If we are doing the best that we can to support our bereaved families, we are helping them to not only live, but also eventually thrive again. Using bereaved parents as a part of that supportive process makes it even more meaningful as no one can understand what it feels like to lose a child except for another parent who has lost a child.

As our bereavement program grows and develops even further, I am hopeful that the things we have learned along the way might also be helpful to other institutions around the world as we strive together to bring hope and healing to bereaved families everywhere.”

You can read the full text of the article here:

https://www.jpsmjournal.com/article/S0885-3924(16)31201-5/fulltext

No One is Alone

Just last evening I had a zoom meeting with a children’s hospital in Australia. I have been meeting with this team for several years as they have worked to develop their own parent support program. 

Last night’s meeting was a continued conversation I’ve been having with bereaved dad, Wayne, who has been an instrumental part of getting this program off the ground in Australia. He wanted to talk about his very first bereaved parent mentoring encounter that happened just yesterday.

He told me how hard and how beautiful it was. I always call it “the worst best thing” that I do. We chatted about what it is like to hear those nightmare stories that other parents have lived when we have lived them ourselves. And how necessary it is for us to listen and bear witness to the pain of others like ourselves.

Wayne asked me what my first parent mentor encounter was like. It happened very organically and wasn’t really official since we were still in the pilot phase of our Parent Mentor program and hadn’t added the bereaved portion yet.

I was at St. Jude for meetings. My son, Josh, had gone with me on this particular trip. We met up with Nick’s doctor outside of the cafeteria just to catch up. As we sat there chatting, Nick’s doctor got a text. He looked at me and asked if I could come to the clinic area with him. He wanted to introduce me to a mom whose 3 year old daughter had died just 3 days before. This family could not find the strength to go home to face family and friends and plan a funeral for their baby.

When we got back to the leukemia clinic, the place where Nick and I spent so much of our time, I saw a young mom and dad with 3 little children standing and talking with the clinic staff. If I had not known the story I would not have thought their daughter had just died.

We approached them and Nick’s doctor introduced me…”This is Wendy Avery. Her son Nick was a patient of mine. He died a few years ago.” This mom stopped everything and looked in my eyes. Then she grabbed me, held on, and began weeping. I had not yet said a word. 

But at that moment, she knew that I knew.

All I could tell her was this: “I know how hard it is to go home. I remember. And it will be one of the hardest things you ever have to do. But you can do it. I am living proof that you can do it.”

They went home the next morning.

All I did was let that mom know that she was not alone. Today, she mentors other moms who are in the early days of grief.

There is a beautiful song toward the end of the musical “Into the Woods”. (Listen here: https://www.youtube.com/watch?v=unVTf5_p_1A ) 

Four people have been thrown together in the worst of situations. All have experienced the death of someone they love and are feeling completely alone. In that moment of aloneness they find family in each other and in their shared losses.

“Mother cannot guide you

Now you’re on your own

Only me beside you

Still, you’re not alone

No one is alone. Truly

No one is alone

Someone is on your side

No one is alone”

This is why I believe in the work of St. Jude Children’s Research Hospital. 

They are saving the lives of children around the world with cancer and other catastrophic diseases every single day.

 And they are saving the lives of the families left behind after a child dies. Not just here but around the globe.

On your left. Someone is on your side. No one is alone.

I am committing to biking 150 miles in the month of September and have set a lofty fundraising goal of $15,000…$1,000 for every year that Nick has been gone.

I have accumulated 35.65 miles in Week One! Come back here next week to check on my progress.

Please donate any amount you can and share this blog with others to help me get the word out.

Click the link below or on “Donate Now” at the top of this page to access my fundraising page.

https://www.facebook.com/donate/393371508823026/