Collaborate for Cures

Why?

Recently I received a new healthcare referral from a man who wasn’t feeling right. Something was different. The visit to the ER resulted in Glioblastoma— a progressive and terminal brain tumor. Living out the worst nightmare, this patient has to immediately adjust to the diagnosis while also trying to decide on best course of action. This includes decisions on next steps, best facilities for treatment, which doctors to choose. Medical records, scans and labs need to be collected. Family needs to be told. Insurance begins to play a role. Fear and insecurity become overwhelming. A waiting game ensues. Why?

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A child begins vomiting 20 times per day with no illness. Six months later, she has not recovered.  She has a gastronomy tube and a specialist who is handling the symptoms, but not a diagnosed disease. New pain occurs. Weakness. The doctors suspect Dysautonomia. The limited specialty clinics and specialists don’t make appointments until they make a complete review of all records and this takes 4 weeks. The first clinic won’t accept the child as a patient. A second clinic also denies an appointment. Why?

Each of these true experiences have a common theme – an unplanned and urgent healthcare issue that requires planned and researched decisions. However, this is rarely possible. Why?

With 30 years of hospital management experience, I now own a healthcare collaboration business and I make every effort to take the burden off families when a healthcare crises occurs. As the business has matured, so has the complexity of the patients; I am almost solely focused on cancer and rare diseases now. It is no easy task to learn the genetics of a cancer, the stage of a cancer, the type of cancer and try to match it with the top facilities and specialists, as well as the decision of which treatment and why, or when to join a clinical trial and how to find one. It is no easy task to find experts to diagnose a hidden or rare disease when the patient is suffering but answers are minimal. Opinions often vary. Our most trusted source of research is Google. Why?

In my pursuit of narrowing down the field in order to apply it to the patients I serve, I learned about Joe Biden’s Cancer Moonshot initiative, with specific interest on data sharing collaboration. The Children’s Brain Tumor Tissue Consortium was founded by two doctors who are passionate about encouraging researchers and healthcare facilities to share their data openly with the world. One would think this already exists. Until now it didn’t! The Consortium is now affiliated with 15 of the highest ranked facilities worldwide so that they all have access to the analysis of data to include tissue from cancers and rare diseases and they are studying together an open source, cloud-based data platform; Cavatica. This data can then be used to provide the right treatment, the first time, for patients. 

We finally have the potential to remove the guessing game from our treatments, which also eliminates risks, and use of drugs that don’t work. 

I developed “Collaborate for Cures” in an effort to begin a grass roots movement to educate the public about the Consortium and the advances being made for cancer and rare diseases.  The overall mission is for patients and consumers to become better educated and engaged in their own healthcare and encourage the international medical community to collaborate together, for cures. 

Memories in the Face of Tragedy

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Like all of us today, hearts are broken for those lost in Las Vegas. I would like to share a little known story about an event that occurred in my life as a little child in Indiana. I do so because I have walked this walk and always feel a kinship, in a horrific way, for lives lost. This picture is from an explosion I witnessed from the first row of the Holiday On Ice with my Dad and pregnant Stepmother. For some reason, our lives were spared, but everyone surrounding us died. Seventy-four people were killed and hundreds injured. I was carried out of the event drenched in blood. The ice was covered in blood. Body parts were everywhere. I can recall my accounts of the event, that "there were dollies flying through the air." I remember vividly, daily. The PTSD has shaped who I am today. I cannot tolerate noises, fireworks, or thunder. I cannot tolerate vomiting as I saw it too much. This all brings up too many difficult memories in my life. I relive it constantly.

There is more to this story but I felt compelled to share it. For those of us who live through a horrific experience such as this, it becomes part of who we are, with memories that never go away. Ever. Our experience is the same whether it is an organic explosion (my experience), a purposeful explosion, a shooting, or a truck that runs over innocent pedestrians. It is carnage and blood and death. It does not look or feel different just because the origin is different. Either way, we have to endure the experience and the visual of what we saw our entire lives. What I saw never leaves me. What the survivors saw this weekend will never leave them. Investigations must occur in every scenario, and will. For now and for the next few weeks, it is important to give these people the respect and love to allow them to physically and emotionally heal. To bury family members. To come through surgeries. To receive grief counseling. To hold onto each other.

The why to this all will become clear, but for now, these poor survivors and family members need the support and quiet and calm. Inside their souls, is loss and fear and memories that will forever shape them, and it will not be easy. They will tell us what they need and then we can support them. We cannot do this for them, nor should we.

Offering so much love during this time.

The Jane Connection

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That's Jane on the far right. Incredibly confident. Sweet as they come. Loving. Glowing Grandma. Wife. Mother. Patriot. Jane succumbed to her cancer yesterday and as I look at this picture, all I can see is the incredible weaving of a purposeful life. 

Jane and I met just under 2 years ago as she was diagnosed with a rather complex cancer. She and I connected immediately and we spent significant time together during her initial diagnoses and treatment protocol. Around this same time was when I also referred a child to Dr. Jay Storm at CHOP and learned about the Children's Brain Tumor Tissue Consortium. More specifically Cavatica, as the first and only free cancer data-sharing platform in the world. As part of Joe Biden's Cancer Moonshot Initiative to encourage the world to collaborate together for cancer cures, I was riveted. So was Jane. She was hoping there were clinical trials that may extend her life and so did I. With renewed interest in the cancer process, a process I have experienced hundreds of times with patients in my healthcare career, I became committed to the future of data-sharing. The realization of how this would impact the future of cancer, the ability to have international research data placed in one location to benefit ALL patients became my personal objective as well. I became a strong voice in the community for the future of cancer and Jane and I would have many discussions about this during her own personal journey.

Within 6 months, I formulated a plan to assist the CBTTC and its international mission. Initially this would include a "Committee" on the west coast to kick off our journey. The Committee was easily formed and included a few of California's most connected and passionate leaders, doctors and celebrities. It also included three families walking their own cancer journey, one of which was my sweet friend Jane. In December, 2016 we gathered for an intimate dinner of 50 to discuss plans and goals for this international endeavor. The picture I am sharing is from that evening and includes Mike Garson (David Bowie's long-time composer, pianist, and friend), CJ and Lisalla Wilson (Angels Pitcher and his wife, an international supermodel), Jane's personal Physician and spouse, myself, and Jane. Together we planned our introductory event in Los Angeles. The concert that would introduce, encourage, support and urge the international healthcare community to "collaborate for cures" by joining the data-sharing movement. On this night, Jane and her family and friends enjoyed a lovely night knowing they were part of a growing movement for the future of cancer. A legacy Jane wanted to leave. 

Two weeks ago, Jane's friends received a personal letter from her, some of which I will share as a tribute to the incredible person she was:

 

"I Have Been Blessed"

I have been blessed with family who love me and whom I love deeply. Jim and I have tried to accomplish one of the greatest tasks set before people...to leave the world better than you found it. Hopefully I have touched your life for the better as you have mine.  Because I love you so much, I wanted you to know that the cancer that I have has not responded to treatments or clinical trials. My doctors and I have decided that the best path forward is for my medical team to focus on keeping me as comfortable as possible. I am getting better at goodbyes....but words still catch in my throat and I lack the energy needed to speak to each of you personally so please know this:

Throughout my entire life I have had you by my side. Different friends at different times. Some friends at all times. I want to thank you deeply for being a ripple on the water that gently eased my boat through this life. 

I am at peace. I am still counting my blessings and you are among them.  Love, Jane

 

As I have reflected on Jane's life, what she meant to me personally, and looked back at this picture together, what stands out to me is how she weaved a life that could forever change our cancer path. Jane seemed to intuitively understand that she herself could not be saved but that she could forever leave a legacy to leave the world better than she had found it.

 

To Jane:  In our time together, I knew you were always at peace and I felt it! You mattered in life and I will forever think of you and your determination. We will continue our cancer fight; for you and with you. Together we continue to encourage the world to "collaborate for cures." What a blessing YOU were to each of us.

A New Hope

I have been anxious about how I would begin my blog, even wondering if I could determine how to select just one experience to share. Which one? 

With sweet thankfulness to my 4-year-old granddaughter, who left a mess on my my coffee table this week that included a book, I chose Mattie Stepanek, author of "Journey Through Heartsongs.” Actually, I think it chose me!

In a quiet evening alone at home, I turned on my TV to watch the first day of college football and reflect on the past week. I glanced at my coffee table that had not been cleaned up since three nights ago. This was a night that I was in Los Angeles with patients while my family was gathered for dinner at my home. By the look of the coffee table, it appeared that my granddaughter had selected this book from our bookcase. I had not thought about this book, or Mattie, for over 15 years. Seeing it brought tears to my eyes as I picked it up to glance through it again. I initially felt sadness that I may have forgotten Mattie but this quickly turned into joy as I realized his life and his words just provided my first blog. 

Mattie Stepanek was only 13 years old when he passed away of a rare form of dysautonomic mitochondrial myopathy  Mattie had a fulfilled purpose in life as a young child; he was a self-proclaimed "peace maker.” He was often interviewed on Oprah Winfrey's show. He was friends with Jimmy Carter. He wrote a book. He was a poet. His three older siblings passed away before him, of the same disease. 

This blog is not about Mattie's disease, or his death. It is about his message to me tonight, via finding his book on my coffee table. It is about his words because tonight, Mattie Stepanek was remembered once again. It is a joy to share four of his poems, with special dedications. Finding Mattie's book was no coincidence. 

Thank you Mattie!

 

 

 

For the world, I thought of you when I read this:

Believing for the Journey

Every day,

Everyone in the world

Should do at least

One thing nice for others.

Doing so can help each person

Believe in himself or herself

More fully, and

Give confidence that may

Inspire each person

To do more and 

More new and good things

For the self,

For others, and 

For the world.

Those positive attitudes

And actions

Can be the first of many steps

Towards the journey

For world peace.

And world peace,

Harmony, and

Confidence are essential

For our future.

(May 2000)

 

For our movement; "Collaborate For Cures" (CBTTC.org) Mattie wanted us to do this!:

A New Hope

I need a hope.....a new hope.

A hope that reaches for the stars, and 

That does not end in violence or war,

A hope that makes peace on earth, and

That does not create evil in the world,

A hope that finds cures for all diseases, and

That does not make people hurt,

In their bodies, in their hearts,

Or most of all, in their spirits.

I need a hope...a new hope,

A hope that inspires me to live, and

To make all these things happen,

So that the whole world can have

A new hope, too

(May 1999)

 

 

Lis, I thought of you when I read this:

Touch of Heaven

What is it like to have a baby

Fall asleep while holding your fingers?

It is a soft, precious touch

It is relaxing, yet exciting.

It is a feeling of trust and importance.

It is so soothing it makes me want to

Fall asleep

It is a song of peace and love

What is it like to have a baby

Fall asleep while holding your finger?

It is a great gift from Heaven

(November 1999)

 

 

And finally for you Mattie: We cannot forget your written words of your hopes for life while you were with us a 10-year-old boy. You remain our peacemaker!

Peace of Patience

I cannot wait to become

A peacemaker

I cannot wait to help

The world overcome

Anger, and problems of evil

I cannot wait for the world

To be peaceful

And for everyone

To live in harmony.

I cannot wait to grow

And be and overcome.

But I will wait.

With patience,

And Hope and peace

(November 1999)

 

For my first blog, thank you Mattie for your book. Thank you my oldest granddaughter for leaving a mess on my coffee table. I suspect my youngest granddaughter will leave her own mess someday :)

Why the snowflake?

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My business logo was designed intentionally with a snowflake because I work closely with patients, every day. Patients are unique like snowflakes; no two are exactly alike, even if they have same diagnoses. I have been working in healthcare for 30 years; 20 in hospital administration and the past 10 as the founder of Hammeras Group. I assist patients with personal navigation through their healthcare challenges and I treasure every single patient and family experience I have been blessed to have. Most are healthy and thriving but some have left us too soon, and I miss them.

What I have learned in my years of service is how little we prepare ourselves for healthcare challenges. It is not a frightening topic to prepare for. It’s smart for us to be educated enough to make wise decisions when faced with challenges in life!

Lately, I have been fighting an urge to share experiences on social media as an outlet. Welcome to my blog where I will share experiences to learn from and to honor others. Experiences that are interesting, sad, happy, boring, funny, educational, tragic, and real. Real stories to help us think more. To plan more. To ponder. Perhaps even life-saving stories.

This is good! There is a beginning. Not a beginning of my story but a beginning of every patient’s story. That first moment when we, or a loved-one, is diagnosed. It’s not necessarily bad, it’s just new. It’s different. It isn’t fun. It wasn’t in "the plan” and it caught us off-guard.

Join me on this new journey as I begin to share the real stories that have shaped my own life, and could prepare yours in a more thoughtful path.