Childhood Cancer – Bill Tomoff

April 13, 2024April 13, 2024

A Foreword of Compassion: Dr. Aziza Shad’s Message in Terri Tomoff’s Memoir “The Focused Fight”

In 2016, Terri Tomoff started on her mission to write her memoir of our son Ryan’s battles with childhood cancer. Her determination to write a book that might help and inspire others was a gift of love for Ryan and our family. Yet, the process of writing a book of this magnitude was beyond comprehension, and the effort of “butt in the chair,” as Terri often mentioned, was a difficult initiative to sustain. When Ryan was diagnosed with tongue cancer in 2016 and 2017, a result of his years of radiation and chemotherapy for his three battles with childhood cancer from 1996 through 2005, Dr. Aziza Shad emphatically encouraged Terri, stating, “You must write your book now!“

From 2016 to 2020, Terri wrote sections of the book and contemplated the structure she hoped would guide her process. After the COVID pandemic shut the world down in March 2020, Terri and I would soon make a joint decision that, reflecting back, changed our lives dramatically. Starting on June 8, 2020, we joined a community of practice called Writing In Community (WIC), led by Kristin Hatcher and Seth Godin. This community became the encouragement and support for Terri to lean into completing her memoir. I assisted with recollecting the timeline of the events, read her work, listened to her read her work, and located pictures to ensure memories were accurate. The process was arduous, and her tenacity (often 8 to 10 hours a day) toward her mission was a feat I still marvel at today in 2024. While she wrote Ryan’s memoir, I participated in WIC alongside her and wrote my own personal memoir. We shared in the community platform and grew to love the daily commitment to writing and learning. Almost four years later, as I write this on April 1, 2024, we consider daily writing and reflecting a treasure. We are forever changed through our writing and collaboration with a community of kind, caring, and generous people who desire to lift each other up. A life-changing and enhancing experience set in motion by the pandemic lockdown.

Dr. Shad was Ryan and our family’s guiding force through the years. An entire book could be written about the care and compassion she delivered because she feels so deeply for those children and families under her care. She kept Ryan, our daughter Olivia, Terri, and me standing through the years with her steady, kind, and determined mindset to leave no stone unturned in delivering the best plan of treatment and care humanly possible. When Terri asked if she would write a foreword for the book, she graciously and excitedly said, “YES!” She knew Ryan and was thrilled to participate in Terri’s initiative of helping others through Ryan and our family’s story.

Below is an excerpt of Dr. Shad’s complete foreword. The full book, The Focused Fight: A Childhood Cancer Journey from Mayhem to Miracles, is available on Kindle digital or paperback at Amazon.

Foreword

By Aziza Shad, MD

When Terri first asked me to write the forward for her long-overdue book, The Focused Fight, something I had been encouraging her to do for a while, I was both humbled and honored. Suddenly, I was overwhelmed by a flood of memories of my relationship with the Tomoff family and specifically Ryan, over the years—a relationship that began in 1996 and has only strengthened over more than two decades. The only difference is that in 1996, I was a young assistant professor in the Division of Pediatric Hematology Oncology at Georgetown University Medical Center in D.C. (now Medstar Georgetown University Hospital). I was actively involved in his day-to-day treatment from diagnosis of Acute Lymphoblastic Leukemia, his two relapses,

and getting him to a matched unrelated donor (MUD) bone marrow transplant and beyond. Today I am Chair of Pediatrics and Chief of Pediatric Hematology Oncology at the Children’s Hospital at Sinai in Baltimore, Maryland, where I follow a wonderful, accomplished 26-year-old young man in the Amey Cancer Survivorship Program.

Every year, multiple books are published on patient and family experiences with life-threatening illnesses, especially cancer, but Terri’s memoir is different. It is a vivid recollection of a journey the Tomoff family had to make without their prior consent. They had to learn to navigate their way through frightening times and trying circumstances over and over again through the years, going from one crisis to the other, and yet stay intact for Ryan and as a family. Being in the practice of Pediatric Hematology Oncology for over 30 years, I have seen families break up, divorce,

siblings drop out of school, drug dependence, post-traumatic stress, and the list goes on. I have often wondered how the Tomoff family stayed together, stronger than ever today, a force to be reckoned with. The answer is quite simple. This young family with a four-year-old at home and a two-year-old with leukemia in the hospital, did it by becoming part of Ryan’s medical team. They participated in difficult decisions and trusted the oncologists and nurses who took care of him, and their unwavering faith and the conviction that he was going to get better by never losing hope or focus was it; hence the title! Their mission was simple—Ryan was going to beat his cancer!

Ryan was diagnosed on October 17th, 1996, with Acute Lymphoblastic Leukemia (ALL), Standard Risk with CNS involvement (detected by finding leukemia cells in the cerebrospinal fluid that flows from the brain down the covering of the spinal cord). He was considered Standard Risk based on his age and WBC count and enrolled on a Children’s Cancer Group Study, which meant he would be treated as per a strict set of guidelines and his clinical data. This treatment would be used to answer some really important questions that would enhance our understanding of leukemia better and hopefully improve survival for other children to come years down the road. Twenty-four years ago, we did not have the molecular and genetic diagnostic tools we have today that allow us to classify children into Low, Average, High and Very High Risk categories very early on, nor did we have some of the new agents and therapies such as imatinib, blinatumomab and CAR-T therapy, all of which have contributed to improved survival in ALL today.

I met Ryan and his parents for the first time on Day 3 of his diagnosis and the memory of that first meeting remains etched in my mind even today, 24 years later. A beautiful two-year-old angelic child with fear in his eyes at the sight of yet another stranger in a white coat, a father whose tears kept rolling down his face and a mother who was distraught but kept it together by taking copious, detailed notes, learning the unfamiliar medical jargon by the minute. Little did she know at that time, how long and complicated Ryan’s journey would be and how her notes would become a trusted reference for the different institutions on where he would be treated.

To say that Ryan’s journey through his initial diagnosis in 1996, two relapses in 2000 and 2004 followed by a bone marrow transplant was a difficult one would be an understatement! So many incidents come to mind—the episodes of sepsis and unexpected infections that landed him in the Intensive Care Unit on multiple occasions, the heartbreak mirrored in Bill and Terri’s eyes on hearing Ryan’s leukemia had come back yet again as they held Ryan and Olivia tightly in their arms, and the deep disappointment they experienced when Ryan’s first bone marrow donor backed out. Yet, through it all, this family held it together and plowed on, taking Olivia to her soccer games, making the 26 mile drive to Georgetown University Hospital with the back and forth days on end without a complaint, relocating to Durham, North Carolina (Duke) for months for his bone marrow transplant, all with one focus only—to get Ryan better.

There were good times too over the years. I saw Ryan and the family grow and transition from receiving support from family, friends, community and support groups, to giving support to many, many families grappling with the diagnosis of cancer. Through their involvement with organizations like Special Love, Inc. and parent support groups, they spent many a day giving hope and encouragement to others. They established incredible relationships and bonds with other families and medical providers that have lasted over 20 years. They went from being educated to becoming effective educators, teaching young medical students at the bedside how to communicate with patients and families, participating in the Pediatric department Grand Rounds and sharing the podium with me at the medical school when I gave my annual talk on Cancer Survivors and Late Effects of Cancer treatment.

Ryan graduated from school and enrolled in college. He celebrated his 21st birthday in Las Vegas in 2015, being the adventurer he was fast becoming! He wears the most outrageous colored pants that always make me laugh, collects sports jerseys and caps, learned to drive and became a spokesperson for childhood cancer! Terri pursued her life-long passion for quilting and joined the Southern Comforters Quilt Guild of Bowie, Maryland, inspiring them to jointly donate hundreds of beautiful quilts to pediatric cancer patients and their families in Washington D.C. and Maryland. What started as a gesture of gratitude and a desire to give back is now an international project, with Terri donating quilts to pediatric cancer programs in Africa and Latin America. We traveled together to Ethiopia a couple of years ago through the Aslan Project, where through a mist of tears, I saw her joyfully distributing quilts to the children there. Olivia went from success to success in varsity soccer with her proud family cheering her on and Bill thrived in his work. At last, all was well with the Tomoffs!

In April 2016, cancer struck again, not once but twice, turning Ryan’s world upside down! This time it was a squamous cell carcinoma of the tongue that started off as a canker sore! This cancer, that occurred years after a successful bone marrow transplant that had rendered Ryan disease-free, was a late effect of all the treatment he had received repeatedly for his leukemia since he was two years old, including chemotherapy, cranio-spinal radiation and TBI (total body irradiation) for his bone marrow transplant. It was a devastating diagnosis that resulted in Ryan needing multiple surgeries and effectively learning to speak and eat again. I went to visit Ryan at the University of Maryland where he had the surgery and instead of seeing a defeated soul, I saw a courageous fighter who was determined to put this curve ball behind him.

Lo and behold, it is now more than three years since Ryan had his tongue cancers. His speech is great, he works, is a connoisseur of gourmet food and a sports enthusiast, plus spends his spare time volunteering for childhood cancer organizations. The latter has won him much-deserved recognition and awards from Special Love, Inc. and the Aslan Project!

I continue to see Ryan regularly in the Amey Cancer Survivorship Program at the Children’s Hospital at Sinai in Baltimore. Here he is monitored for multiple late effects of treatment in concert with other subspecialists in Endocrinology, Cardiology, Oral Surgery and Dentistry, Ophthalmology and Dermatology. He is always accompanied by one of his wonderful parents, generally Terri, who still carries her notebook and Ryan’s updated medical records and information that we go over in each appointment. Just this month, I saw him and received the ultimate gift from him—homemade smoked cheese! Ryan is well on his way to becoming an entrepreneur and I look forward to the day I can say I know the Ryan of “Ryan’s Smoked Cheeses!”

In closing, often I am asked why I chose Pediatric Hematology Oncology as a profession, one which is regarded by many as sad and hopeless! All I need to do is look at Ryan, who together with his family conquered the impossible and today focuses only on the future, bringing a message of hope, courage and resilience to so many along the way. The incredible bond of friendship and trust I established with the Tomoffs that first evening at Georgetown 24 years ago has only grown stronger. We have laughed and cried together, rejoiced at successes and grieved for losses. I thank Ryan, Olivia, Terri and Bill for including me in their ever-expanding family and wish them all the happiness in the world!

Aziza Shad, MD

Ellen W.P. Wasserman Chair of Pediatrics

Chief, Pediatric Hematology/Oncology

The Herman & Walter Samuelson Children’s Hospital at Sinai

Professor of Pediatrics & Oncology

Georgetown University School of Medicine

April 3, 2024

Celebrating Others: Gratitude for Dr. Aziza Shad and The UPLIFTERS Podcast!

On January 23, 2024, on Facebook, I shared gratitude for Dr. Aziza Shad for her unparalleled care to our family and all patients and families under her care. I was inspired by a Susan Cain post titled Seven things my father taught me, by example. Her father was a doctor and the list of seven things he taught her was heartwarming and points we should all take to heart. Point number five immediately reminded me of Dr. Shad:

“If you happen to be a doctor, take care of your patients – really take care of them. Study medical journals after dinner, train the next generation of physicians (my father kept teaching until age 81), spend the extra hour to visit the bedside of your patients in the hospital. (Here’s a letter from one of those patients, which we found after my father passed away. He never showed us these things while he was alive.)”

**Susan Cain Image – Patient Letter to her Doctor Father**

The gratitude I shared in my Facebook share was:

“When I read Susan Cain’s post on Substack, this point, and the letter sent to Susan’s father, it inspired me to intentionally pause and be grateful for Doctor Aziza Shad.

Since 1996, Dr. Shad has been at our family’s side guiding and caring for Ryan Tomoff through his #ChildhoodCancer wars and beyond to monitoring the late effects of his treatments through the years.

The image above IS the essence of expertise, care, and compassion that Dr. Shad has brought to our family and every patient and family blessed to be a recipient of her care.

Please read Susan’s full Substack post and my wish is you can share your #gratitude with someone who made a forever impact in your life 🙏❤️.

Dr. Shad, thank you… the words shared by a patient, in Susan’s post, are beautiful. The Tomoff family carries these sentiments for you:

“How do I start, where do I begin to express my feeling of gratitude. appreciation to a [doctor] that has compassion, knowledge, and the kindest doctor… I had the pleasure to have in our lives.

Your caring, right from the heart, your kindness to always lead us in the right direction. We never thought to get a second opinion. Whatever you advised was good enough for us. BECAUSE YOU CARED, TRULY CARED….” “

***

Released on March 22, 2024, Dr. Shad speaks with host Aransas Savas of The Uplifters podcast, titled Dr. Aziza Shad is Humanizing Healthcare: By using teamwork to tackle pediatric cancers. Terri recommended Dr. Shad for the podcast, and I am so happy this interview occurred!

Please prioritize 35 minutes to hear Dr. Shad’s perspective on treating her patients and their families. She cares deeply about all whom she is entrusted to care for. In the pediatric world, the child patient and the family must be considered to achieve the optimal outcome of curing a child. Aransas does a beautiful job guiding the conversation, and the entire podcast was an inspiring listen.

In the interview, Dr. Shad discusses why she chose pediatric cancer as a specialty, the founding of The Aslan Project dedicated to pediatric cancer in Ethiopia, and her mission to be accessible 24 hours per day, seven days a week! She is a godsend to our family. Listen in and be inspired – may we all approach our lives and careers to make the most meaningful difference we can.

***

March 31, 2024March 31, 2024

The Focused Fight: How Dr. Aziza Shad’s Guidance Fueled Our Family’s Cancer Battle and Personal Growth

Summary Overview – Collaboration with Claude.AI

I recently had a conversation with a friend in an MBA program who was advised by a classmate to lower the bar and focus more on soft skills. While I agree that real skills are critically important, I strongly disagree with the suggestion to lower the bar on learning. My twin brother Don and I are passionate about personal development and relentlessly encouraging others to bring their best selves to the world every day.

This commitment to excellence was solidified for me when my son Ryan was diagnosed with leukemia at age two in 1996. Dr. Aziza Shad, Ryan’s pediatric oncologist, came into our lives and guided us through an incredibly difficult journey. We had to completely trust Dr. Shad and her team to save Ryan’s life. A critical part of that trust was the expectation that she and everyone involved in Ryan’s care was dedicated to bringing their absolute best knowledge, judgment, and effort.

While most of us don’t hold others’ lives in our hands on a daily basis, I believe we should demand the same level of excellence from ourselves in whatever work we do. I owe this to Dr. Shad and the many professionals who exemplify this commitment. Ryan is thriving 27 years later thanks to their dedication and skill.

Dr. Shad’s example has inspired me to always strive to be my best and help others with the knowledge and skills I’ve gained over my lifetime. My wife Terri has also been moved by Dr. Shad’s encouragement to share our family’s story in her memoir. I hope others find inspiration in this message to never settle or get complacent, but to continually learn, prepare, and contribute your talents to the fullest. The world needs you at your best.

Full Original Writing

My twin Don and I embrace a theme in our careers and lives: “Take what you do seriously. Do not take yourself seriously.“

Recently, I had a conversation with a friend in an MBA program, and a classmate suggested, “You are taking the MBA too seriously. You should lower the bar and improve your soft skills.” This friend happens to be a spectacular human being with real (prefer term vs. “soft”) skills that I wish I possessed. I agree that we all must understand the critical importance of real skills, yet a suggestion to lower the bar on learning through the MBA curriculum content? NO.

Don and I are all-in on personal development, and we relentlessly encourage others to be serious about continually learning and bringing their best selves to the world every day. Please be serious and do your best with all learning opportunities you encounter. We must be our best and bring our learning and talents to the world!

“To give anything less than your best is to sacrifice the gift.”

—Steve Prefontaine

“Lowering the bar” means accepting that we can get by and succeed with less effort. We don’t need to be at our best. This sounds crazy to contemplate, doesn’t it? In my world, I expect the best from myself and those I interact with. Let’s pull the thread on this idea to make a compelling and obvious point – in the medical profession, for example, are we accepting of a doctor who has lowered the bar and is not bringing her best talents to serve patients?

On October 17, 1996, our family’s life was forever changed when my son, Ryan, was diagnosed with cancer – Acute Lymphoblastic Leukemia (ALL) at the age of two years and two months. My wife Terri, and I, were stunned, scared, and had no concept of how we could move forward. On Saturday morning, October 19, 1996, Dr. Aziza Shad came into our lives carrying a protocol requiring our authorization for treatment to commence on Monday, October 21, 1996. Dr. Shad gently and caringly stepped through the protocol stages that would require three years and two months to complete and answered our questions. In order to save Ryan’s life, we had no option other than to accept and authorize the protocol.

We quickly understood a few core facts:

We had no control over a complicated childhood cancer world.
Dr. Shad and her team in the pediatric oncology world at Georgetown University Medical Center were our hope for saving Ryan’s life.
We had to trust Dr. Shad completely and partner with her while relentlessly advocating for Ryan.

Part of our trust in Dr. Shad and the medical community was our expectation that she and everyone involved in Ryan’s care was dedicated to staying current and relentlessly preparing to bring their best knowledge and judgment to Ryan and the countless patients whose lives depended on them. Let that sink in – isn’t this what you pray for when you put your trust in your doctors? While many of us are not saving lives on a daily basis, why would we accept less than our best when we live our lives personally and professionally? I have many limitations, but dedicating myself to continual learning, preparation, and bringing my best skills and effort to those counting on me is something I demand of myself. I owe this in honor of Dr. Shad and the many professionals who bring the same commitment to their lives every day.

We are blessed to have Ryan thriving now 27 years later, and Dr. Shad at his and our side guiding his follow-up care. Dr. Shad’s example of expertise, care, and compassion has solidified my determination to bring my best every day and help others with the skills and knowledge I have earned throughout my lifetime.

With Dr. Shad’s years-long encouragement, Terri published her memoir of Ryan’s five-time cancer battles in her book The Focused Fight: A Childhood Cancer Journey from Mayhem to Miracles in March 2021. Dr. Shad kindly wrote a foreword for the book!

**Terri Tomoff and Dr Aziza Shad – The Focused Fight**

I will continue with future posts about Dr. Shad, where I will share the foreword from the book and other sentiments that speak to the incredible doctor and human being that she is.

To close this post, I hope you find inspiration to do everything in your power to be the best person and contributor you can be in your choice of work and how you carry yourself through each day of your life. Do not settle, get complacent, or “lower the bar.” The world needs your contribution!

February 2, 2024

The Ripple Effect of Post-Traumatic Growth: How ‘Doing Our Best’ Transcended Personal Triumph

“Have you done your best?“

A theme that has been a central aspect and one I have held close throughout my life is my goal to always answer this question with “Yes, I did my best.” In my teen years, my efforts focused on distance running. However, I became much more intentional with my self-encouragement and introspection in 1977 when I started attending Ohio University and took on the challenge of obtaining a business degree in accounting.

On October 17, 1996, my and my family’s life was forever changed by the challenge of my son Ryan’s childhood cancer diagnosis. Every day, my wife Terri, me, then four-year-old daughter Olivia, and two-year-old Ryan started surviving by bringing “our best” to the day and the often unimaginable stresses that were now a part of our everyday lives. An acute sense of gratitude for life and the joys of ordinary moments quickly took hold in our perspectives. I wish our gift of perspective were one that everyone could genuinely appreciate. Yet, I wish for others to reach this perspective without traveling the road Ryan and our family have traveled for the past 27+ years.

Post-Traumatic Growth

In chapter 33 of Terri’s memoir The Focused Fight: A Childhood Cancer Journey: From Mayhem to Miracles, she discusses her discovery of Post-Traumatic Growth while we were traveling in 2015. Thanks to Oprah Magazine and journalist Ginny Graves, Terri’s discovery of this topic crystallized many emotions we felt through Ryan’s challenges. Without realizing the impact (our focus was saving Ryan’s life and providing as much normalcy as possible for Olivia), our lives profoundly changed by embracing our mission to help others affected by childhood cancer and to pay forward the care and kindness that has been showered upon us since that life-changing day in 1996. In introducing the section in her book, Terri shared this quote that has rung true for us:

“Something very beautiful happens to people when their world has fallen apart: a humility, a nobility, a higher intelligence emerges at just the point when our knees hit the floor.”
—Marianne Williamson

Collaborating with ChatGPT, I summarized the chapter with a 500-word recap and then generated an insightful bullet-point highlight list of ways post-traumatic growth has enhanced our lives. I shared these two results below. A BONUS – the full text of chapter 33 from Terri’s memoir is provided here.

Chapter 33 Summary | Collaboration with ChatGPT

Chapter 33 of Terri Tomoff’s book “The Focused Fight: A Childhood Cancer Journey: From Mayhem to Miracles” is titled “Post-Traumatic Growth.” The chapter opens with a note from Tomoff’s son, Ryan, reflecting on his experiences with PTSD following his battle with cancer. This note provides insight into the challenges he faced, such as constant fear of cancer recurrence, the constant medical environment, and coping mechanisms like video games.

Tomoff connects Ryan’s struggles with the concept of post-traumatic growth (PTG), an idea suggesting that individuals can experience positive transformation following trauma. This concept is hard for some to comprehend, and not everyone can rally around it, but it represents an alternative to the narrative of unending suffering.

Tomoff then recounts her family’s various contributions to their community following Ryan’s diagnosis, including running marathons to raise money, starting a Postcard Project, and taking meals to the hospital floor where Ryan was treated. She shares that these activities, aimed at helping others, could be considered PTG as they transformed their family’s trauma into a positive force that benefited their community.

The term PTG was coined by Richard Tedeschi, a psychology professor at the University of North Carolina, who asserted that trauma survivors could undergo profound changes that extend beyond mere resilience. Jack Tsai from Yale School of Medicine adds that the healthcare system emphasizes identifying dysfunctions rather than superior functioning. This trend is now shifting towards promoting overall well-being.

Tomoff elaborates on her family’s extensive volunteer work, including lobbying for childhood cancer funding, founding advisory boards, and volunteering at various organizations and events. These activities provided a sense of purpose, helped others facing similar challenges, and, in return, aided their healing process.

Tomoff explains that despite the pain associated with a childhood cancer diagnosis, the shared experience has created a strong sense of community and camaraderie. This has led to emotional sharing sessions that have deeply moved the families involved and the staff at the facilities they work with.

Finally, the chapter highlights the Southern Comforters Quilt Guild of Bowie, Maryland, which Tomoff is a part of. The group has made over 2000 quilts for newly diagnosed children at Georgetown University Hospital and has extended its mission internationally. Tomoff and her family’s endeavors reflect the essence of PTG, transforming a traumatic experience into meaningful contributions to society, leading to their emotional growth.

Post-Traumatic Growth: Our Enhanced Family Approach to Life | Collaboration with ChatGPT

From Chapter 33 of Terri Tomoff’s memoir, it’s clear that the family’s experience with their son Ryan’s cancer diagnosis and subsequent trauma transformed their approach to life, fostering a deep commitment to aiding others and giving back to society. This transformation reflects their experience with post-traumatic growth (PTG). Here are some key ways in which PTG enhanced their life:

Embracing Purpose Through Helping Others: They found purpose and solace in assisting others undergoing similar trials. This included running marathons to raise funds, launching “The Postcard Project”, delivering meals to the hospital, and volunteering at multiple organizations. They found a form of healing by turning their trauma into meaningful activities.
Creating Advocacy Initiatives: Their personal experience led them to advocate for more funding for childhood cancer research. Tomoff mentions lobbying on Capitol Hill with the Leukemia and Lymphoma Society as a part of this initiative.
Building Community: They co-founded the Parent Advisory Board and involved themselves in other groups supporting families dealing with cancer. This fostered a strong sense of community, which provided emotional support and a platform for shared experiences.
Promoting Well-Being and Positive Transformation: Their work with others emphasized the promotion of well-being, aligning with the concept of PTG. They believed that surviving adversity could be used as a catalyst for profound personal change and betterment.
Empathy and Understanding: Their own experience with trauma allowed them to deeply empathize with other families going through similar experiences, making them effective in their efforts to help others.
Legacy and Long-Term Commitment: The family has pledged a lifelong commitment to giving back to society, acknowledging that they “will never live long enough to give back to the universe.” This dedication is evident in their ongoing efforts, such as Terri Tomoff’s work with the Southern Comforters Quilt Guild, which has created over 2,000 quilts for children newly diagnosed with cancer.
Family Involvement: The family turned their struggle into a collective mission, involving every family member in various ways. This not only helped in dealing with their trauma but also fostered a sense of unity and shared purpose within the family.

In summary, the concept of post-traumatic growth profoundly affected the Tomoff family, driving their extensive efforts to help others, advocate for change, and create a legacy of kindness and resilience in the face of adversity. This has fundamentally transformed their approach to life, making them deeply committed to serving their community.

Thanks to the interpretation and insights offered by ChatGPT, the results beautifully articulate the essence of Terri’s heartfelt writing about post-traumatic growth and the impact our family has felt throughout the years of Ryan’s treatments. We can all show up and do our best one day at a time. Doing your best is what YOU must hold yourself accountable for – this is a personal matter and not subject to the judgment of others. Do your best, keep moving, and hold your head high.

**November 4, 2004 – PBMT Donor Meetup – Olivia, Bill, Terri, and Ryan Tomoff**

**October 1996 – Ryan and Bill Tomoff at Georgetown Hospital**

**October 1996 – Ryan and Bill Tomoff at Georgetown Hospital – Dad heading home**

November 30, 2023May 2, 2024

Living with Intention: My Path to Post-Traumatic Growth and Encouraging Everyday Kindness

ChatGPT Summary

In this blog post, I share my reflections and insights shaped by a journey marked with resilience and gratitude, deeply influenced by my son Ryan’s courageous battles against cancer. Drawing wisdom from Terri Tomoff’s “The Focused Fight,” I explore how these profound experiences have enriched my perspective, fostering a commitment to spread kindness and positivity.

As I approach my 65th birthday, my heart is brimming with gratitude. I’m dedicated to living a life filled with impact, kindness, and helpfulness, embracing the concept of post-traumatic growth. I’m inspired by Adam Grant’s “five-minute favors” from his book “Give and Take,” believing in the cumulative power of small, intentional acts of kindness.

My life philosophy is encapsulated in three core themes. Firstly, through “The Focused Fight,” I aim to encourage others with a message of gentleness and understanding. Secondly, our Tomoff family mission focuses on helping one person, one family, at a time. Finally, along with my twin Don and our #TwinzTalk initiative, we endeavor to change the world one interaction at a time. These principles guide my daily interactions, where I strive to be an encouraging and enthusiastic presence.

Supporting this message, I reference a post from Instagram’s imagine_values and a “Five-Minute Favors” video on YouTube. Additionally, musician Nick Cave’s words resonate deeply with me, highlighting the significance of everyday gestures in creating ripples of change. Cave eloquently speaks to the profound impact of our smallest actions and their meaningful consequences.

In conclusion, I extend a heartfelt invitation to join me in embracing micro-moments of kindness and a gentler approach towards ourselves and others. Every action, no matter how small, matters significantly. Through these seemingly insignificant acts, we can all contribute to lifting the spirits of others, thus shaping a kinder, more compassionate world.

Full Reflection

My perspective and efforts in life strive to lead with a grateful heart as I go through my days. When I am gentle and kind to myself, I am inspired to bring that same presence to the world and those I interact with. I could credit many life events for their role in shaping me into who I am today. Yet, the dramatic life-threatening and life-altering event of my son Ryan’s five-time battles with cancer and the lens through which I experience life have profoundly changed me. Terri Tomoff’s memoir, The Focused Fight: A Childhood Cancer Journey From Mayhem to Miracles, shares Ryan and our family’s journey since his original diagnosis in 1996.

As I approach my 65th birthday (!), my heart is filled with gratitude for the growth I have experienced in my life, and I am dedicated with my heart and soul to being an impactful, kind, caring, and helpful person for the rest of my life. The concept of post-traumatic growth is one that Terri and I embrace fully, and we strive to be intentional in our efforts to pay it forward for the unimaginable care and kindness that has been shared with our family over the years.

Recognizing that TIME is my most precious asset, I have dedicated efforts focused on micro-moments of kindness and five-minute favors (encouraged by Adam Grant in his book Give and Take). Opportunities abound to make a difference in our world, and my approach to seemingly small, insignificant, yet genuine acts of kindness WILL make a compounding difference in my world. How do I “know?” I believe, and I KNOW – I do not need affirmation. I promise – live your life to bring good to the world – and you will notice the impact on you and your world!

A few themes I believe and strive for as part of my values are:

My theme – encouragement with signed copies of The Focused Fight:

“Be gentle. Be kind – you never know what someone is going through.”

Our Tomoff family mission of The Focused Fight book:

“Helping others, one person, one family, at a time.”

Bill and Don Tomoff’s mission of #TwinzTalk and our professional work:

“Changing the world, one interaction, one person, at a time.”

My preferred contributions for making an impact in my corner of the world are to focus on micro-moments of kindness and five-minute favors. How I conduct myself daily is critically important, and I strive to be an encouraging and enthusiastic presence as I go through my activities and interactions. Our actions matter – a lot. An inspiration from imagine_values on Instagram is a fantastic reminder for my approach to bringing value to my life and world: “Think big and act small.“

View this post on Instagram

A post shared by Imagine Values (@imagine_values)

A beautiful discussion of “Five-Minute Favors” is shared in this short 4-minute and 41-second YouTube video from Good Morning America.

And, to close, James Clear’s 3-2-1 weekly newsletter from Thursday, November 23, 2023, shared a beautiful excerpt from musician Nick Cave:

Musician Nick Cave on the power of small actions:

“The everyday human gesture is always a heartbeat away from the miraculous.

Remember that ultimately, we make things happen through our actions, way beyond our understanding or intention; that our seemingly small ordinary human acts have untold consequences; that what we do in this world means something; that we are not nothing; and that our most quotidian human actions by their nature burst the seams of our intent and spill meaningfully and radically through time and space, changing everything.

Our deeds, no matter how insignificant they may feel, are replete with meaning and of vast consequence, and they constantly impact upon the unfolding story of the world, whether we know it or not.”

Source: The Red Hand Files, Issue #216 (lightly edited for clarity)

Portions of the unedited post at the link provided above resonated with me:

“Perhaps the song attempts to present the idea that the everyday human gesture is always a heartbeat away from the miraculous – that ultimately we make things happen through our actions, way beyond our understanding or intention; that our seemingly small ordinary human acts have untold consequences; that what we do in this world means something; that we are not nothing; and that our most quotidian human actions by their nature burst the seams of our intent and spill meaningfully and radically through time and space, changing everything. Night Raid tells us that our deeds, no matter how insignificant they may feel, are replete with meaning, and of vast consequence, and that they constantly impact upon the unfolding story of the world, whether we know it or not.”

“… All action provokes change. Nothing is ineffectual. Nothing.

Francis, rather than feel impotent and useless, you must come to terms with the fact that as a human being you are infinitely powerful, and take responsibility for this tremendous power. Even our smallest actions have potential for great change, positively or negatively, and the way in which we all conduct ourselves within the world means something. You are anything but impotent, you are, in fact, exquisitely and frighteningly dynamic, as are we all, and with all respect you have an obligation to stand up and take responsibility for that potential. It is your most ordinary and urgent duty.”

My hope is anyone who reads my post here will embrace the magic of micro-moments of kindness and five-minute favors. As Nick Cave encourages, EVERY action matters. We all can prioritize time to contribute and lift the spirits of others through seemingly insignificant actions.

May we all adopt a kinder and gentler approach to ourselves and our interactions with others? Join me in this movement.

PS – if you need to move in front of me in a long traffic line, I’ve got you covered!

The Tomoff Family - Terri, Olivia, Ryan, and Bill

November 5, 2023November 30, 2023

A Drop of Hope: How a Marrow Transplant Ignited a Lifetime of Gratitude

ChatGPT Highlights of Post

I pause to reflect back on November 3, 2004, a day ingrained in our hearts as we nervously sat in Duke University Medical Center, awaiting the marrow donation that held the hope of a fresh lease of life for Ryan, battling Acute Lymphoblastic Leukemia.
The week of outpatient radiation Ryan endured, wiping out his immune system, only intensified the need for a successful transfusion, each passing moment fueling our prayers for the meticulous execution of the transplant.
Our beacon of hope was Scott Harris, whose altruistic act of marrow donation from miles away in New York was the cornerstone of Ryan’s fight for survival. His selfless act is a testament to the adage that humanity thrives in unity.
Rajesh Setty’s words, “Life-changing gifts deserve a lifetime of gratitude,” resonates deeply with our experiences, encapsulating the essence of thankfulness we foster each day for Scott and many others whose benevolence has been a guiding light in our journey.
The narrative within Terri’s memoir, “The Focused Fight: A Childhood Cancer Journey: From Mayhem to Miracles,” not only chronicles our voyage through turbulent times but also advocates for the priceless act of marrow donation, urging the reader to explore and share the life-saving potential encapsulated in “Be The Match.”

Our narrative is a homage to the boundless generosity we’ve received and a call to action for others to partake in life-altering acts of kindness, fostering a continuum of hope and lifesaving camaraderie.

Full Reflection (Written November 3, 2023)

“Life-changing gifts deserve a lifetime of gratitude.” – Rajesh Setty

November 3, 2004. Nineteen years ago today, my family and I were in Durham, NC, at Duke University Medical Center. Terri Tomoff and my son, sister Olivia’s brother, were with Ryan as we anxiously awaited the marrow donation to be delivered to Duke and prepared for transfusion to Ryan. We all were praying for the successful execution of steps that needed to be taken to provide Ryan with his opportunity for a life-saving transplant. He was waiting in his hospital room after having completed a week of outpatient radiation that eliminated his immune system – his body’s ability to fight an infection was non-existent.

When we experienced Ryan’s 3x wars with childhood cancer (ALL – Acute Lymphoblastic Leukemia), we immediately understood that people need people. Success in the process was not in our control. The realization creates desperation. On this day in November 2004, we all waited anxiously for the necessary steps that had to unfold before delivering the marrow transfusion to Ryan.

We would only learn the specifics a full year later. Still, our donor, Scott Harris, from the New York area, started the morning of November 3rd by going to a local hospital to have his marrow harvested for delivery to Duke, where a ten-year-old boy and his family waited. At approximately 7:45 PM, the transplant was started!

Every day, we carry an attitude of gratitude for Scott Harris and the gift of life that his selfless act provided to Ryan and our family. Yet, on the anniversary, we take an intentional pause and reflect on his kindness, along with the care and compassion of many people and medical professionals who dedicated their efforts to Ryan’s survival. Rajesh Setty’s quote above, which I discovered in his YouTube video, “Growing and Changing the World One Thank You at a Time,” could not more perfectly articulate the emotion in our family.

I encourage everyone to watch the video for thought-provoking inspiration and encouragement from Rajesh, particularly from 3:00 to 5:05 minutes, where he references Dr. Howard Hogshead and life-changing gifts.

The list of people I feel heartfelt gratitude for is very long, and we dedicate our lives to helping others, honoring those who have impacted our journey and who ultimately gave the gift of life to Ryan.

In her memoir book, The Focused Fight: A Childhood Cancer Journey: From Mayhem to Miracles, Terri discusses Ryan and our family’s in-depth journey through transplant (Chapter 23 – The Transplant) and the emotional meeting with Scott Harris on November 4, 2005 (Chapter 27 – Can YOU Be The Match?).

As Terri asks with her title of chapter 27 – can you be the match? Please check out and share the critically vital link to Be The Match.

**November 3, 2004 – Ryan Tomoff transplant is started at 7:45 PM**

**November 4, 2005 – Ryan Tomoff meets his Bone Marrow Transplant donor Scott Harris.**

**July 2021 – Olivia, Bill, Terri, and Ryan Tomoff celebrate Terri’s *The Focused Fight* book, published March 11, 2021**

**December 2019 – Olivia and Ryan Tomoff – Maui, Hawaii**

June 21, 2023

Unlocking Hope: The Impact of a Postcard Project on One Family’s Childhood Cancer Battle

Introduction:

This blog post results from using ChatGPT (CGPT) to summarize and reframe chapter 19, The Postcard Project, in Terri Tomoff’s memoir, The Focused Fight: A Childhood Cancer Journey: From Mayhem to Miracles.

My twin Don and I have been learning, “playing with,” and working to identify compelling personal use cases for using CGPT to enhance our performance and ability to bring increased value to ourselves and others.

The summaries provided here were a direct result of prompting CGPT based on the full text of the chapter. I have first-hand knowledge of the topic (creator of The Postcard Project), so I can verify the results of our family’s direct experiences. I have tweaked the results below for greater clarity and accuracy, yet the starting point provided by CGPT astounded me!

I started by copying and pasting the chapter’s entire text, about 1,500 words, into CGPT and prompting it for a 500-word summary recap. Then I prompted, “Why was the postcard project important for Ryan and our family?” The results encouraged me to share in this blog post. Reminder – I carefully read the answers generated by CGPT and modified the results to reflect sentiments that aligned exactly with my feelings. However, the “head start” provided by CGPT is the emphasis here – I am sure this result would not have been gathered without the assistance of CGPT.

Recap of the Chapter:

Chapter 19 of Terri Tomoff’s book, The Focused Fight: A Childhood Cancer Journey: From Mayhem to Miracles, titled “The Postcard Project,” shares the story of a unique initiative undertaken by the family of Ryan. This young boy had gone silent after his second acute lymphoblastic leukemia (ALL) cancer relapse.

The news of the relapse made Ryan sad and uninterested in talking with almost anyone. Hoping to lift his spirits and encourage him to communicate, his father, Bill, conceived a project where well-wishers would send sports-themed postcards with supportive messages to Ryan. He was a huge sports fan.

Termed “The Postcard Project,” the idea rapidly gained momentum, with people sending postcards worldwide. In addition, Ryan received other gifts, including sports jerseys and even a letter of good wishes from the President of the United States, George W. Bush! The family had set up a P.O. Box to manage the volume of mail, which exceeded 2,500 pieces between June and December 2004.

The postcard project not only provided a distraction for Ryan but also became a ray of hope for the entire family. People’s goodwill worked wonders, as the messages he received lifted Ryan’s spirits. Depending on his health and mood, He could open the mail on his terms, either in the hospital or at home.

One touching incident mentioned in the chapter was when a nurse, who had earlier sent Ryan a postcard from Hawaii, was assigned to him at Duke University Medical Center for his bone marrow transplant. The family viewed this coincidence as a minor miracle.

Despite the trauma and uncertainty surrounding Ryan’s treatment, the chapter emphasizes the resilience of Ryan and his family. Their motto of taking things “One. Day. At. A. Time.” was a steady mantra amidst the chaos of chemotherapy treatments, infection complications, recovery, and preparation for his bone marrow transplant.

The postcard project had miraculously achieved its aim – Ryan’s spirits were lifted by the cards received, and he began to talk and engage with others. The chapter also highlights Ryan’s resolve to attend an annual weeklong cancer camp, Special Love’s Camp Fantastic, reiterating his determination and will to live.

Overall, “The Postcard Project” exemplifies the healing power of collective goodwill and how a small act of kindness can have far-reaching impacts.

Why was The Postcard Project Important for Ryan and Our Family?

The response generated by CGPT brought me great gratitude for the idea happening. It reminded me that Ryan and our family were immensely blessed with the overwhelming response that supported him throughout the summer of 2004 and his trip to and treatment at Duke University Medical Center in October 2004 until we returned to Maryland in March 2005. A couple of boxes of unopened cards traveled with us. Ryan had a consistent available supply of notes that reminded him he was loved, and a vast tribe of supporters was holding him close in their thoughts and prayers.

The reasons suggested by CGPT for the significance of the project were:

Boosted Spirits
Sense of Connection
Restored Communication
Global Support
Distraction from Pain
Family Bonding
Miracle Moments

Each reason suggested was a great observation, and Terri and I would summarize in the same way – if we were able to articulate the thought as concisely as offered by CGPT (and then reworded to our preference).

The response from CGPT (clarified wording to reflect our experience) is below.

The Postcard Project was significant for Ryan and his family for several reasons:

Boosted Spirits: Amidst the painful and exhausting process of treatments and recovery, the postcards served as a source of joy and excitement for Ryan. The sports-themed postcards catered to his interests, and the encouraging messages improved his mood.
Sense of Connection: While Ryan had retreated into silence, the postcards allowed him to maintain a connection with the world outside his hospital room. They served as a non-intrusive way for well-wishers to communicate their support.
Restored Communication: The postcards sparked curiosity and interest in Ryan, encouraging him to start speaking and engaging with others a bit more. Opening up to others was a significant emotional and psychological recovery milestone.
Global Support: The wide-ranging response from people across the globe emphasized the collective goodwill towards Ryan. This universal display of human kindness profoundly impacted his family, giving them hope and strength in challenging times.
Distraction from Pain: The postcards provided Ryan with a much-needed distraction from his painful treatments and the longer-term extensive inpatient treatment process. They served as a pleasant diversion, giving him something to look forward to.
Family Bonding: Collectively experiencing the project brought the family together, providing a shared focus and a sense of solidarity in a stressful and worrying period. It also brought joy and a sense of achievement as Ryan’s spirits improved, and he opened up to communicating more regularly.
Miracle Moments: Unexpected instances, like the nurse at Duke University Medical Center who had earlier sent Ryan a postcard, ending up as his caregiver during his bone marrow transplant. The nurse event is one example of several emotional moments of wonder and joy experienced by the family.

I am pleased with ChatGPT’s assistance in summarizing Chapter 19, The Postcard Project. The result articulates the power of what the project brought to Ryan and our family. I hope others will be inspired to be creative and seek help and support. The response and success of the project made a difference for Ryan!