“Life does not stop with cancer.” One family’s journey through pediatric cancer.

 

Guest Blogger, Scott Kramer from Dancing While Cancering

Life does not stop with cancer.

But as a parent, stepping onto a pediatric oncology floor for the first time, it sure feels like it does.

Our daughter, Maddie, was diagnosed with a rare form of cancer at just two-and-a-half years old.  No warnings.  No preparation.  No predisposition.  On diagnosis, Maddie’s world – and our world – was torpedoed from a world of preschool, playtime, and Peppa Pig into an unfamiliar hospital environment…and chemo…and cancer.

And for a brief moment, life felt like it came to a crashing stop.

But as we settled Maddie into what would be her new hospital home away from home, we eventually came to a realization.  Slowly but surely, with Maddie beginning a 52-week chemotherapy protocol, we derived the strength to give her what she deserved more than anything – the ability to continue to be a kid.  So day after day, hospital stay after hospital stay, we transformed our hospital room into a home.  Curtain hooks became holders for paper disco balls.  White hospital walls were replaced with bright streamers and decorations.  A window with nothing but a medical record holder was transformed into a home for window gel clings and greeting cards.  The window sill was now a bookshelf.  Empty spaces were now occupied by plastic Disney figurines.  And the beeping of machines was drowned out by the sound of music in the air.  Sure, the technical name for our hospital was “The Ann & Robert H. Lurie Children’s Hospital of Chicago.”  But that’s not where we were anymore.  We were at “Lurie’s Place.”  A magical and special environment that we were able to cultivate for Maddie with the help of our child life team.

That transformation would come to define our journey by Maddie’s side.  A journey of holding on to life and joy in the face of all the darkness that cancer brings.  And so while the darkness returned 8.5 months after Maddie’s initial diagnoses…and while Maddie ultimately left this physical world all too soon…we still stand strongly by the ultimate lesson that Maddie gifted us:

That life does not stop with cancer.

From the moment Maddie passed, our family made a commitment to ensure that Maddie’s life would be remembered as an inspiration.  To ensure that her life would forever remain a source of good to the world around her.  And that the dark world of cancer would continue to be filled with her brightness.

As of today, on the strength of Maddie’s love, that commitment has become a reality.  Every year, thousands of parents will step onto a pediatric oncology hospital floor for the first time.  They will see those bare white walls.  They will hear the stirring sounds of unfamiliar beeping machines.  They will have their playtime replaced with chemo.  But at least some of these special patients will receive a gentle reminder from Maddie.  Because every newly diagnosed pediatric cancer patient at 15 hospitals across the country receives a “Smile Pack” courtesy of Dancing While Cancering, a 501(c)(3) nonprofit formed in Maddie’s honor.  Inside the Smile Pack, families will find some familiar transformative tools such as streamers, paper disco balls, and a wireless speaker.  Delivered by our partners in joy, our cherished child life specialists.  Carrying a message from Maddie.  A message that she reminds us day in and day out.

That life does not stop with cancer.

If you’d like to learn more about Maddie’s inspirational journey, check out her memoir, Maddie’s Miracles, available on Amazon.  Written by Maddie’s dad, Maddie’s Miracles is also a source of light and love – with 100% of the royalties donated to cancer charities.

We will be giving away a copy of Maddie’s Miracles to one lucky winner.

Choose one or more ways to enter:

1. Sign up for email notifications at ChildLifeMommy.comand leave a comment below.

2. Facebook: Follow Child Life Mommyand tag a friend.

3. Facebook: Follow @Dancingwhilecancering and leave a comment about the giveaway.

4. Instagram: Follow @ChildLifeMommyand @Dancingwhilecancering, tag a friend in the post.

5. Twitter: Follow, Like and RT the post to @ChildLifeMommy and@DWC_BringJoy.

Good Luck, the winner will be chosen on 4/5/20.

Related Posts:

Podcast: Scott’s Story- A Daughter with a Rare Cancerous Tumor 

 

 

Young girl creates teddy bear to comfort children coping with medical experiences

I’m thrilled to feature an amazing nonprofit that is bringing smiles and comfort to hospitalized children. The Medi Teddy is a washable teddy bear that was designed by Ella, a 13-year-old with a rare illness, Idiopathic Thrombocytopenia Purpura or “ITP”.

Ella receives IV infusions every few weeks to treat her illness. During her day in the outpatient clinic, it can be long and boring while she watches the IV fluids drip from the bag into her arm. One day she decided to create a teddy bear that covers the IV bag and brings comfort and normalcy to the hospital environment. She wanted other children to also experience this comfort, so she launched Medi Teddy.

Medi Teddy is given to a child and is used to cover their IV bag. If a child is receiving outpatient treatments they can bring it home, machine wash it and bring it back to the clinic for their next visit.

As a child life specialist, I can see the wonderful benefits of giving a Medi Teddy to a pediatric patient. Medical play can be incorporated and empower children to healthily cope.

Click here to make a donation or receive a Meddy Teddy. Be sure to follow on Facebook and Instagram and learn more from their website.

We will be giving away 5 Medi Teddys to one lucky winner.

Choose one or more ways to enter:

1. Sign up for email notifications at ChildLifeMommy.com and leave a comment below.

2. Facebook: Follow Child Life Mommy and tag a friend.

3. Facebook: Follow @EllasMediTeddy and leave a comment about the giveaway.

4. Instagram: Follow @ChildLifeMommy and @Medi_Teddy, tag a friend in the post.

5. Twitter: Follow, Like and RT the post to @ChildLifeMommy

Good Luck, the winner will be chosen on 3/14/20.

 

How Running Blindfolded Has Helped Me Cope With My Sister’s Rare Disease

We all know the impact that illness has on a family. When a child receives a diagnosis of a rare and incurable disease, it’s a pivotal moment in the family’s life. Things will forever be changed. I wanted to share a family’s journey through Batten disease. It’s an inspiring story of a sister who never lost hope in searching for treatment while honoring her younger sister’s life with the creation of a foundation, Taylor’s Tale and a memoir, Run to The Light.

Guest Blogger, Laura King Edwards

What motivated you to write Run to the Light?

In 2013, I ran a half marathon blindfolded to honor my then-15-year-old sister. Taylor suffered from a rare disease called CLN1 disease, or Batten disease, and it had stolen her vision some years earlier. After Taylor went blind, she ran two 5Ks with a program called Girls on the Run. Watching my sister overcome incredible obstacles inspired me to run races in her honor.

My first blindfolded race (I did it again when the book was published) started as a PR stunt — a way to get widespread attention for Batten disease. But I never imagined running that race would save my life, too.

I co-founded a nonprofit organization called Taylor’s Tale not long after Taylor’s diagnosis. We funded promising research and surpassed even our expectations. But my sister started to struggle around 2012-13, and by the time I started training to run blindfolded, I’d realized anything we achieved would be too late to save Taylor’s life.

Learning to run 13.1 miles in the dark showed me the depth of my sister’s courage and tenacity. And when I crossed the finish line and took off my blindfold, I understood two things:

  1. Hope doesn’t have to end even if you lose someone you love.
  2. No matter what happened, I’d never, ever stop running or fighting — if not to save my sister’s life, then to save future Taylors.

In the days and weeks that followed, I knew I wanted to write a book so other people could understand who my sister had been and the positive change her life had inspired.

About eight months after the blindfolded race, I boarded a plane bound for Oregon, where I’d begin a new journey to run in all 50 states for Taylor. I started writing Run to the Light on that flight.

What has been your biggest challenge in witnessing your sister’s illness?

That’s tough to pin down. I can’t imagine anything more difficult than watching someone you love lose their life to Batten disease. I hated watching Taylor suffer while she was still alive, especially those last few years. But I think knowing what her life could have been if she’d never gotten sick — the life of promise that never came to be — will hurt for as long as I live.

Can you describe your hopes and dreams for those coping with Batten disease?

First, I want people, like my sister and their families to have better quality. It’s easy to wish for treatments and even cures, but we don’t often focus on strategies or efforts to improve the quality of life for patients now. Quality of life is a huge issue for Batten disease or virtually any degenerative or chronic, serious illness. That’s why I’m so proud of Taylor’s Tale’s most recent initiative: We spearheaded and funded the creation of the first care management guidelines for Taylor’s form of Batten disease (CLN1 disease), bringing together clinical and scientific experts from all over the world.

Of course, my ultimate goal has always been a treatment. We’re close to getting there. Taylor’s Tale funded a gene therapy treatment at UNC-Chapel Hill that was acquired by a clinical-stage company called Abeona Therapeutics several years ago. In Run to the Light, I share the story of how we met Steve Gray, the scientist who led the project at UNC.

In May 2019, Abeona reached a huge milestone, getting investigational new drug (IND) clearance from the FDA. In other words, they have the green light to start dosing patients. That hasn’t happened yet, which means we’re still watching kids die. I have so much faith in this gene therapy treatment, I can’t help but feel impatient. I’m hopeful the trial will start soon. I feel certain my sister’s watching, and I hope she knows the extent of the legacy she left. Because of the work she inspired, other families like mine won’t have to suffer.

Do you have any advice for caregivers and medical providers?

For caregivers, especially parents: I know it can be difficult to neglect your own needs, but you have to take care of yourself, too. Caring for someone with a debilitating disease is a 24-hour job. I watched my parents do it for years. You’ll be better for the people you love if you allow yourself to get sleep, eat a healthy diet, exercise and take some time for yourself. Don’t be afraid to ask friends and other family members for help.

For medical providers: Don’t write off hope for patients with a diagnosis like Batten disease. Be willing to think outside the box. Even if you’ve never seen it in your clinic, chances are, someone else has. Are novel or experimental therapies available somewhere else? Parents will go to the ends of the earth to help their children. Also, don’t discount the quality of life. Even if the disease path is a foregone conclusion, you can take measures to help the patient have better quality over the months or years they have left. I know measures like physical therapy and, for seizure control later, the ketogenic diet gave my sister added quality and perhaps even extended her life.

How to get involved

Taylor passed away in September 2018. She was just 20 years old. I think a lot of families would have stopped fighting, and I wouldn’t blame them. But we’re determined not to let Batten disease beat us twice, and Taylor’s Tale still has important work to do. We need your help! Spread the word, purchase my book, follow Taylor’s Tale on FacebookTwitter, and Instagram so you can stay informed. And, if you feel compelled, donate to taylorstale.org.


With National Rare Disease Awareness Day coming at the end of the month, we would love to share a copy of Run to the Light to one lucky winner.

Choose one or more ways to enter:

1. Sign up for email notifications at ChildLifeMommy.com and leave a comment below.

2. Facebook: Follow Child Life Mommy and tag a friend.

3. Facebook: Follow Laura King Edwards and leave a comment about the giveaway.

4. Twitter: Follow, Like and RT the post to @ChildLifeMommy and @Lkedwards11 

5. Instagram: Follow @ChildLifeMommy and @LauraKingEdwards tag a friend in the post.

Good Luck! The winner will be chosen on 2/22/20.