The power of words

    Words are so incredibly powerful. Assuming that they are the precursor to action, the words at yesterday's  inauguration suggest the welcomed return to civility, kindness and unity.  May it ever be so.

    The carelessness with which words have been used in recent years has made me quite anxious. At the beginning of the last presidency, I was concerned about the inattention to tone, which seemed to diminish the dignity of the office.  Many people attributed this rough delivery to the inexperience of a political outsider. There were excuses for speech that was not just undiplomatic and disreputable, but rhetoric that was becoming more divisive.  Some claimed that these unscripted and informal words of 'a regular guy' helped to foster connection between the leader and the governed. However, the disparaging late night tweets reinforced my impression of coarseness and presidential impulsivity.  The weary public seemed to become numb to brash words coming from the White House, both written and spoken. 

    The dehumanization of political adversaries with cartoonish nicknames during the campaign, eventually gave way to unsubstantiated claims of voter fraud, post election . The torrent of unkind words--which could be characterized as either careless or calculated, depending upon your political position-- culminated in the storming of the capitol on January 6th, which left five people dead. At a minimum, the intent of the crowd that marched at the urging of the president was to halt the counting of electoral votes. There were some individuals who expressed a far more threatening intent that day, seeking specific people to target with violence after bashing in windows, forcing their way into the Senate and interrupting the constitutionally mandated work. However you view it, this was a historic low point for American democracy, fueled by foul words, mistrust and insurrection. 

    Words had powered all of this destruction- of the Capitol building as well as our democratic tradition.  

    Two weeks later, listening to the inauguration of Joe Biden, I heard words being used for a different effect. The thoughtful selection of words began to soothe our nation through music, speech and poetry.  I listened in my car, utterly transfixed in the Red Cross parking lot (becoming increasingly late for my appointment to donate platelets). But I was thirsty for the beautiful crafting of words, craving ideas that could uplift and inspire our bruised collective.

    Twenty-two year old Amanda Gorman wove a lyrical message of hope, acknowledging the challenges that we face and encouraging our nation to come together as we move forward.  Watching her performance at home later only visually reinforced the beauty and grace that I heard in her poetry. Click here to watch: Video of Poet Laureate   The following lines particularly spoke to me:

Let the globe, if nothing else, say that this is true:

That even as we grieved, we grew

That even as we hurt, we hoped

That even as we tired, we tried

That we'll forever be tied together, victorious

not because we will never again know defeat

but because we will never again sow division

    I was not surprised by the balm of compassion and message of hope that our nation received yesterday because I have experienced personal kindness from the president before. The first time that I met Joe Biden was in the early weeks after my son Brent died from leukemia.   

    Grief may have overwhelmed me in those early months of 2018, but my daughter was in the midst of her own cancer treatment.  I was not afforded the luxury of remaining in bed with the curtains drawn, tempting as that might have been. I spent months in the hospital with Lauren, talking with her physicians and caregivers, and making difficult decisions. Living in that fishbowl, my handling of Brent's death was on full display, even while I continued to advocate for Lauren.  

    My dear friend Mills had worked in executive medicine during the Obama administration, responsible for organizing care for the Obamas and the Bidens.  She was responsible for arranging care for Beau Biden at Walter Reed.  She was also tasked with providing opportunities for the Vice President and his family to visit Beau privately while he struggled with, and eventually died of brain cancer in 2015.  Mills generously asked me to be her +1 when the Vice President invited her to attend his book tour . I took advantage of a break in Lauren's treatment to drive to Washington DC.

    We went to the event with friends of Mills who had also served the Biden family in the White House. It wasn't until the four of us were standing in the security line, that I understood that I would have the opportunity to meet the former Vice President. This man had lead the Cancer Moonshot, looking for ways to accelerate cures for a disease that has profoundly touched so many families in America. Brent and I had talked about this work so often.

    Meeting the Vice President a few moments later, I was overwhelmed, rendered speechless.  Mills kindly introduced me and explained that I had lost my son to cancer a few weeks prior.  The meet-and-greet line, which had been moving at an efficient clip, abruptly stopped while he talked with me about loss and prayed quietly over my hands, filled with compassion and kindness.  He gave me a phone number, should I ever need to call him.

    A few months later, I had the opportunity to meet Joe Biden again, at a dinner hosted by Senator Sherrod Brown.  I took Lauren to meet the man who worked toward solutions in cancer, using his platform, his time and talent to help those who have witnessed and experienced the relentless cruelty of cancer.  I was stunned that he remembered our family's story. 

    While I listened to the words spoken at his presidential inauguration yesterday, I was reminded of the regret expressed by Joe Biden on both of those nights, almost three years ago.  He lamented that by not running for the presidency in 2016, he would not be able to continue the Moonshot Initiative and be the president that helped to cure cancer. He believed that by bringing bright minds together and facilitating collaboration, progress could be greatly accelerated. He was not afraid to be bold, to take on difficult and overwhelming tasks. He was using his own painful experience to help others and honor his son. While we have more pressing health concerns in the United States today, I am hopeful that the collaborative lessons of the Moonshot might be used to address those other problems, like COVID 19.

    But perhaps the most important sign for our country, yesterday's ceremony had a conciliatory tone. Words are being used thoughtfully, to bring people together rather than to divide them. There was poetry to inspire us to become the best versions of ourselves. My friend Mills, who introduced me to the president, often shares the transformative power of literature, of music and poetry.  Words, we all know, can bridge and build, as well as destroy and divide.   

    Just as Joe Biden embraced me and murmured a prayer for a grieving mother, I would pray for the well being of the nation that he must now lead. To quote Amanda Gorman, the United States is "a nation that isn't broken, but simply unfinished."  She empowers us to write something beautiful. 

She concludes her poem with a challenge: 

For there is always light, 

if only we're brave enough to see it

if only we're brave enough to be it.

Let the personal and the collective healing begin.

 

Social Distancing

For the two years since Brent died, I have been trying to find my place in the world.  More accurately, I have been trying to find myself, because I do not recognize this life.  It  is so radically different from what it once was.

For many years, I found my identity primarily as a mother, advocate and caregiver. I was a fixture in our local hospital, living there with Lauren and Brent during their various cancer treatments.  Beyond those walls, I was always looking to expand my scientific contacts because I never knew who I would next need to help my children.  I had become accustomed to the regular and repeated medical crises that would emerge.  I became somewhat numb to living desperately close to the edge, in ways that most parents could not possibly understand.

I wrote faithfully in our CaringBridge, giving medical updates and describing what I felt. These entries were always honest, but often incomplete.  I could not fully articulate just how hard some things were.  Nonetheless, our family received unbelievable support throughout these years in a multitude of ways, which often moved me to tears. I was comforted by the kindness of our extraordinary community.

Nights in the hospital were the worst.  A life of interminable waiting and medical problem solving seemed to stretch out in front of me (and indeed, this went on for many years) When sleep would not come to me, I would often read words of encouragement online and somehow feel less alone. The RamerNation made a life within these parameters, making the best of our less than ideal circumstances.  We thought creatively, tried to find opportunities to expand our children's narrow world and always sought the upside.

And then it all ended, most abruptly.


Since then, I have written only sporadically, retreated socially, and tried to find a place where I can be fully honest about the impact of this experience. But even among my closest mutant friends, I find that I maintain a certain distance.  They certainly understand the stress of cancer and repeated trauma.  They have all experienced loss, but fortunately within this small circle, not the loss of a child.  With LFS, losing a child is not a theoretical idea, but an insidious fear that crawls into your brain every time scans roll around.  So, it felt especially wrong to continuously wave the specter of that very real possibility in the face of friends that I love. We all try to protect each other.

I enrolled in graduate school, beginning a Masters in Public Health program.  I continued with my advocacy efforts to change systems that I knew should be fixed.  I expanded my Rolodex of contacts which had been focused on physicians and scientists to include policy makers, elected officials and like-minded advocates. But in between these efforts, I have been mostly quiet, and mostly alone. I have tried to heal the brokenness.

I have stilted conversations with people that I run into.  I find small talk at social gatherings to be a nightmare, because benign questions that are commonly asked of women my age require answers that are filled with cancer: How many children do you have?  Followed by, What do you do for work?  I have not crafted responses that are appropriate for a party yet, and navigating these interactions is exhausting. I often beg off, despite how socially engaged I once was.

I went to counselling for a time. I have looked for support groups for bereaved parents, but have not found a true fit.  I keep pushing forward, but I feel the punishment of Sisyphus, as each fresh day begins by picking up the same burden.

At the end of January, I attended a conference in DC about Expanded Access.  A speaker apologized during his presentation that he would need to leave in the middle of the panel discussion because there were some problems happening in China.  Sure enough, his phone alarm went off, and Dr. Anthony Fauci walked out.  I had no idea that I would change my facebook profile picture to his image, only two months later.

I watched this pandemic approach with the same apprehension that I felt during cancer. Alex had a cough when he came back from Ann Arbor and he went on to develop a fever of nearly 103. I dug through my zombie Apocalypse medical stash and found an open box of masks for him.  After advocating for him to be tested, I waited anxiously for his Covid results. People that we know are becoming infected, and some that we care about have died.  I described it to my mutant friends the other day:

"It is just so familiar...this feeling that I have. It is like a slow moving train and we are Penelope-tied to the tracks. Will it stop before we are crushed? I felt this way during Brent's osteo, wondering if his long surgical delay from chemo would result in lung mets...and during transplant when we had to wait holding our breath to see if it would work, and again with relapse before the DLI when Brent went without any white count for months--terrified that he would get infected....and during necrotizing fasciitis--those days in the ICU on a vent, and months later, when he didn't wake up for a week with the acute kidney injury, and with the acute respiratory distress he had earlier that admission....and less than a year later, when he was on a vent again...waiting for him to get well enough to receive those cells. It all has kind of gotten to me...all the waiting that I have done in my life for things that were beyond my control. So many times, it worked out. Things have stopped working out for me, it feels like. Just been a hard day today"

I am very glad to report that Alex has tested negative, because I have had my fill of ventilators and hospitals. It has been rather triggering for me, truth be told.  Furthermore, a positive result in Alex would carry huge implications for my mother who lives with us, and uses oxygen. Dan still goes to work at the VA hospital every day, so his risk- and ours- remains greater than those in true isolation, but for now, I can breathe a bit easier. (That was not intended as a snarky pun, but if you need one to break the stress, there you go.)

Mandated isolation for Covid has not had a profound an impact on me, since this had become my baseline, but it has greatly impacted my children, who have been forced to isolate far too often in their lives.  It feels cruel to deny them the opportunity to see friends, especially Lauren who was looking forward to a strong finish to her high school experience. She is now doing her final semester as a senior remotely.

Again, we have no choice.


I recognize that my experience with persistent fear, heightened uncertainty and unnatural loss, the things that made me feel so separate from most people, are becoming common to everyone in this post-Covid world. Speaking from across the street to neighbors while walking the dog, and seeing Facebook posts confirms that those who could never imagine living with such things, are doing just that.

So today, I feel that I will not be bringing the world down by sharing some of my feelings, because, most tragically, the world has begun to truly understand them.  The same extraordinary community that supported us for so long, and the people who said with honestly and compassion, "I cannot imagine!" have begun to experience a bit of the fear, had a taste of uncertainty, and is now in isolation.

I wish so very much that I could offer them even a fraction of the support and encouragement that we experienced for all those years.  We may need to be isolated but we don't have to be alone. Hang in there.

Stay home.  Stay safe.  Be well.

Much love,
Ann

The fullness of a week in Washington

It has been a very full week, one that began with funeral services on Sunday for a cancer friend.  During our last stint on the oncology unit in late 2017, while Lauren was in treatment for osteosarcoma and Brent was trying to bridge to his 18^th birthday in order to be eligible for an adult clinical trial for relapsed leukemia, little Viv and her family lived in the hospital with us.  She was receiving a bone marrow transplant for her own aggressive leukemia. This tiny child brightened those dreary halls and filled a room with joy and hope, just by being there. Vivian Rose was beautiful, sassy, and adored by all.

Last week, she died just hours short of her 4^th birthday.

 

I drove to Washington DC on Monday, to attend an Expanded Access Summit at the National Press Club with Viv and Brent heavy on my heart.  For three days, I listened to presentations and talked with folks from FDA, pharma and research institutions about the challenges found in balancing the competing interests of safety and opportunity for patients.  There was thoughtful discussion about the practical limitations that small start-up biotech companies face.  We analyzed the risks and costs that make it difficult for new companies to provide drugs to patients outside of clinical trial.  I recognize and appreciate these considerations. They are the very issues that brought me to this conference last year.  

I was most encouraged when Janet Woodcock of FDA endorsed a trial design that contained an ‘Open Access Arm.’  This additional arm, which mimics expanded access/compassionate use, would provide much needed “Real World Data” to researchers.  The traditional arm (which has more restrictive inclusion criteria) would better answer questions about product safety and side effects. The data from a more representative cohort could guide countless physicians who wonder how a drug will affect their much different patient after it is approved. The experiences of patients in the open access arm would inform the decisions for patients who have similar comorbidities. Currently, this more complicated type of patient is seldom seen in clinical trials. 

As an advocate, I have long called for this dual arm trial design, which might have provided opportunities for Brent and Viv, who did not fit the narrow criteria of clinical trials that existed while they were alive. I believe that there are things to be learned from every willing patient.  We should not squander that opportunity.

I still worry about Lauren, who becomes more complicated as time goes on.  As she approaches 18, I am less concerned about her age as the criteria that limits her options, than her extensive cancer history (especially the brain tumor that she had at age 9 and again at 12). Regardless of how well she is doing, this single factor would disqualify her from participation in many clinical trials. I am working to change these limitations for her, and patients like her. 

I celebrate Jane Woodcock’s call for this alternate trial design and would urge that data derived from the ‘Open Access’ arm to be given less weight in the approval process, similar to the consideration that expanded access data receives, so as to not negatively impact the application.  I hope that the signal from FDA endorsing this trial design will be widely adopted by pharmaceutical companies. However, given the costs associated with expanding clinical trials in this way, it will likely take more than just a suggestion from FDA for them to incorporate this idea into trial design, even with the benefit of having trials accrue faster.

Creative discussions are critical for change, and I certainly witnessed some of those during the conference early in the week.  I will applaud progress, even when it takes time.

There was more good news.

On Thursday, I was fortunate to meet with a member of Sherrod Brown’s staff, after he was called to Senate impeachment hearings.  I was encouraged by their effort to develop a clinical trial navigation program, as well as their transparency and continued follow up with me about the process.  I am excited for the proposed system which would educate patients about clinical trials, offer medically appropriate opportunities and partner with social work to help connect patients in need with non-profit organizations to manage the other obstacles to participation (travel and housing). Again, I believe that helping individual patients to participate in research will help advance science overall.  I look forward to reading the legislation when the policy review process has been completed, perhaps as early as next month.

After this meeting, I sat outside of Union Station, enjoying the sunshine with a cup of coffee.  A rather disheveled man holding a paper map approached me asking, “Where is the monument?” I tried to imagine what monument he meant, since there are so many in DC.  I took only few steps toward him, to try to help him navigate his map and find his destination, before a friendly local jumped in, helpfully showing him the way.  “You are going to want to take Louisiana to get to the Washington monument….”  I watched the two men and smiled. This seemed like a fine analogy of what I am working toward in clinical trials, the well informed local, helping this lost tourist find his way to the must-see monument.

The next day I drove back to Ohio, pleased with this overall progress.  But there was even more to be hopeful about.

I stopped in the afternoon to take a call with the Coalition Against Childhood Cancer, to review FDA draft guidance for the Pediatric Research Equity Act, which mandates that pediatric clinical trials be offered for new drugs that act on molecular targets that are found in both adult and pediatric cancer.  I have watched the pediatric community come together and coordinate their efforts in order to bring about this much needed change.  

The interpretation of this law by FDA has been strongly supportive of progress in pediatric cancer.  This legislation (and the FDA's interpretation) according to draft guidance would have eliminated the delay that Brent experienced, and would have required that there be a pediatric clinical trial option for little Viv. 

We can only move forward and try to make things better for others. 

I am so grateful for all those who have worked together to address the needs of the most vulnerable patients. It is a complicated problem, requiring cooperation between many groups: academia, industry, regulatory and patient advocacy.  I am grateful for the opportunity to be part of this effort, which honors Brent, serves Lauren and consequently, is terribly meaningful to me.     

RamerNation Day, 2019

Brent spent over six years dealing with multiple cancer diagnoses and serious medical conditions that were caused by the cancer treatments.  Some years, he spent more time in the hospital than he did at home. After a spending long day waiting to be admitted in the outpatient clinic, or a long night in the emergency department, or after a long stint in the pediatric ICU, he would yearn to go to his hospital "home" unit, where the nurses knew him best. Hugs and high fives go out to all of the nurses working under difficult circumstances every day. Please know that you matter.

While the oncology unit was the most familiar place for us, there is still the requirement that nurses confirm the patient's name and birthday, as a safety measure, whenever they administer blood products or medicine. Brent, naturally, used a lot of both.  But he would always rattle off his birthday and hospital MRN number in his sleep, or mumble it through a narcotic haze, preferring this to waking up, having lights turned on and showing the nurse his armband.  His date of birth was repeated so often, that to this day, I struggle to come up with Lauren's, or even my own birthday, whenever asked. "October 7, 1999" was repeated so often, it just falls out of my mouth, like drool from Pavlov's dog.

 

Littlest Heroe is a terrific organization that supports families dealing with pediatric cancer.   After Brent died, they worked with legislators in Ohio and had October 7 declared RamerNation Day, to honor Lauren and Brent's struggle with cancer. I am grateful for the way that this day has been transformed from one that is unavoidably difficult for our family, into an opportunity for those who remember Brent to reach out to us and share a memory of him, or what they did to make the world a better place. Hearing about acts of kindness and knowing that our son is remembered, these are such a precious gifts.








I began my RamerNation Day helping the girls scurry to school. Olivia had slept in, tired from her soccer tournament over the weekend.  After they left the house, I recieved a text from "Brent" reminding me to pick up after Art Club. Olivia uses Brent's phone and I haven't brought myself to adjust the contact information to reflect this fact. I am glad that Liv is enjoying the things that Brent would have at that age, had he not been in treatment for his first cancer, osteosarcoma.  Lauren is similarly active: in marching band and cross country, taking AP courses, working on college applications.  Again, Brent would have been doing these sorts of things during his senior year, had he not been battling his last cancer, a relapsed leukemia.

Ever generous, I know that Brent would be happy for both of his sisters and I try to keep my focus on this fact. But the way that their lives in this moment represent the bookends of his cancer experience stays with me.  It seems to curve around the possibility of what his life might have been, like parentheses, which mentions an idea while still separating it from the subject.

I took a call to prepare for a presentation at the NIH Cancer Steering Committee meeting next month.  This, I will say, was my contribution to RamerNation Day, honoring Brent and trying to make the world a better place.  In November,  I will have the opportunity to speak to those who shape policy, who work in industry and design clinical trials. I can share Brent's experience to show how the process might be improved and progress might be accelerated.  As much as Brent taught people in medicine during his life by doing unproven things, his experience can continue inform even after his death, and have a positive impact on policy, especially as it relates to inclusion criteria on clinical trials.

I miss him every day.

Alex texted, checking in with me from Ann Arbor.  I wish we could be together on this day, but he has midterms. Dan visited last weekend.  I will visit him next weekend.

When Dan got home from work, we took Olivia to the cemetery to plant crocuses and hyacinth at Brent's grave.  We put down rich garden soil to fill in the space where the ground has settled, watching the glory of the sunset while we worked.

Olivia wanted to hear stories about Brent, and through the telling, his teasing and wit shone brightly, even as the sunlight dimmed. We remained there until the darkness creeped in, listening to the sounds of the day ending.

Thank you to all who reached out in support of our family. I believe that the hardest part of the second year is that after the exceptionally difficult year of "firsts," people seem to view lingering grief as unnatural.  It is different in the second year, in that people now generally shy away from Brent's name, an indication that we should have accepted the loss of him and moved on with our lives. We continue to live, of course, but Brent will never leave the heart of who we are as people, or as a family.


RamerNation Day allows for the saying of his name, and provides an opportunity for others to share how they remember Brent's life.  Although in our house, we do this the other 364 days of the year as well.   

Celebrating Brent's last birthday in 2017

Back to School

It has been a quiet summer.  While July is littered with dates that trigger difficult memories for me,  I remained very present during my daily communion with the hummingbirds and my obsessive planting of flowers. Gardening became a fixation, perhaps because the flowers bring an uncomplicated tranquility, just like the butterflies and birds that they attract.

As the summer wound down, Olivia became nervous about going to a new school.  I tried to reassure her and told her about the kind teachers and supportive environment at the middle school. Still looking to her siblings for guidance, Olivia asked me "Did Brent like sixth grade?" I had an emotional hiccup. I explained that Brent loved going to school, but didn't actually attend sixth grade more than perhaps 10 days. It was late August in 2011 when Brent was diagnosed with osteosarcoma. All of our lives shifted in that moment, and to be honest, that is when our grieving and incremental losses began.

The emotional potholes are always waiting, but I do not always see them before I have fallen into them.

Lauren has just begun her final year of high school, a busy one filled with all sorts capstone activities: senior nights, photos, dances and dinners in addition to college applications, scholarship deadlines and AP courses. Lauren is our third child and this process should be old hat for us. However, we were in the hospital with Brent for much of Alex's senior year and were only minimally involved at the school. Dan and I even had to postpone Alex's graduation party (which he had organized himself) because Brent landed in ICU with necrotizing fasciitis.

My second opportunity to be the parent of a senior was sidelined when Brent relapsed with AML,  derailing his efforts to graduate with his class. There were so many things that he was looking forward to doing, or sharing with his friends, but illness and death prevented him from experiencing any of them.

I am trying to enjoy these events with Lauren, but they often evoke hazy distracted memories of Alex's final year in high school or equally difficult imagined experiences (the things that might have been for Brent).  I am so glad that Lauren is healthy and starting from a strong position, but my feelings beyond this foundation of gratitude are often complicated.

Like with the hummingbirds, I am trying to remain grounded in the present moment and focused on the wonderous gift in front of me. I have to pay attention, because I am all too aware that this darting aerial dance is fleeting and unpredictable.   I try to focus, but am not always successful.

The girls are not the only ones starting a new school year.  I have begun a Masters in Public Health program. When I returned home from the first day of orientation, Olivia rushed to my side and peppered me with questions: "How was your first day?  Did you get lost?  Did you make any new friends?  Did you sit with your classmates at lunch? I am so proud of you for asking your teacher for help!"  Her genuine enthusiasm (and touching bit of role reversal) swept away the lingering mix of feelings which are difficult to articulate- excitement and nervousness but also an emotion that lies somewhere between regret and guilt, about the fact that I am attending college instead of my brilliant son.

I know that Brent would be as proud of me as Olivia is.  I will use the things that his experience taught me, and work for policies that will help others.  While Brent never wanted to be defined by his illness, he definitely wanted to help other young people who faced the same challenges. He especially wanted to make it better for Lauren.

Brent's hard work is done, but mine has just begun. I am torn; I am drawn to the past even as it propels me forward. I try to honor my son as I take my next best step, just as he always did.  Sitting at his desk, now strewn with my books and papers, I imagine that Brent smiles, and whispers encouragement to me.

I hope that he whispers louder during Biostatistics.   

Faith

As I dug up the explosion of wild onions in my iris bed this morning, I also weeded through my tangled thoughts. I need this kind of work sometimes, the sort that keeps the hands busy but allows the mind freedom to wander, to prioritize and to process.

Weeds are always a good metaphor for cancer.  We are backed up against scans in my home, and the comparisons are unavoidable.  We are being vigilant, in case a seed was left behind and a new tiny shoot needs to be plucked. I welcome your prayers, because I don't know if I can yet form my own.  God and I have had some bewildering interactions of late. I have always struggled with faith and asking for what I need, but since Brent died, it has been even harder.

I have never presumed to know the mind of God, assumed any sort of quid pro quo, nor feigned understanding about the purpose for our suffering. But I do believe that it is an act of faith, to try to create something good every day, especially out of adversity.  I have been working hard at this, and it serves as both my promise and my prayer. It is an affirmation of what Brent demonstrated over and over: that life is always worth the struggle. 

I continued to pull the onion bulbs and replant the irises. The morning was a beautiful, glorious and warm. A pair of geese squawked loudly as they passed overhead, reminding me of my son, and a poem that I taught all of my children: Something told the wild geese.

There had been a different pair of geese yesterday, making the same noisy announcement of their arrival to the pond outside the Cleveland Museum of Art.  Liv was so excited to bring her friend Maggie with us. We had a picnic of fruit and cheese while the girls sketched and explored the lagoon. The weeping willows had just begun to leaf, dressed in their delicate pale lace, and the cherry trees seemed to float like pink clouds. The hospital beyond was unseen from our picnic site, but I felt its presence nonetheless.

The girls chatted about the "must do's:"  visiting the armor court, the enormous Monet that we call 'Brent's painting,' and the new interactive art exhibit.  They scampered off to climb a tree and examine the garden sculptures as I looked on. They were most taken with Rodin's Thinker and the twelve sculptures of the zodiac. A church bell tolled the quarter hour and I focused on the sounds of the songbirds. It was a bucolic moment, even with the Peter B. Lewis roof line undulating in the background.  The whole scene reminded me of the mother I had once been, before it had become so complicated.

"Why is Cancer a crab, mom?" I was brought back to the present and the cause of our perennial complication.  I sighed, then explained to Liv that cancer is Greek word for crab and spreading tumors sometimes looked like crabs.  Long ago, when the ancient Greeks first noticed this, they called the disease 'cancer.' I added that crabs, offended by the comparison with a horrific disease, probably asked to change their name and preferred instead to forever be associated with melted butter and deliciousness: a re-branding for the ages. I walked though the series of frescoes with the girls, telling the myths that I could remember, and connecting them to things that they could relate to.

I cannot deny that cancer has had an impact on our family.  Alex is studying biomedical Engineering, Lauren intends to study pediatric oncology nursing.  Olivia told Maggie in the car about how she wants to be an art therapist.  Brent...I struggle to mention how cancer impacted him, lest the grief tumble out and the words never stop.

Prayer is difficult for me these days.  I still cannot seem to form the words to ask for Lauren's health, as much as I desire this. It is not so much a lack of faith, I think. But I recognize that what I want is immaterial to what will happen, otherwise Brent would be with us and he would be strong and healthy. I do have faith that there is purpose in our struggle, even if it is unclear to me from my current perspective. To give meaning to our difficulty, I sometimes take painful steps, trying to make the world better. Faith, defined in this way, is how I get out of bed.

I took a graduate class on the renaissance several lifetimes ago, before Olivia was even born and when we only had one cancer under our belt. Rather than focusing on the beautiful art and architecture, my research focused on the plague and poetry, which might suggest to some that I have always been kind of a downer. (I am not.) Yesterday, seeing the beautiful paintings from that era, I was reminded of this piece that I wrote some time ago:

Find your inspiration wherever you can

Faith is not so much a feeling, but a decision to act positively.  To build.  To rebuild.  To make the world better, however you can, despite having a life radically different than you ever imagined, despite struggle, despite disappointment. Faith is the belief in and commitment to something bigger and more enduring than ourselves. It is the belief in the unseen, in something that we cannot always understand.

Notre Dame took generations to build, and those who laid the foundation never saw it completed. There are scores of people unknown to us and long gone who contributed this beautiful treasure.  Some offered physical strength, some brought ingenuity, other executed sublime artistry. But together, they created what is considered the finest example of the gothic architecture.  The cathedral burnt this week, but there is a commitment to rebuild. This honors those who came before, as well as those who are yet to come. This commitment to repair by the French people, rather than to simply despair, is an act of faith.

Today, I was weeding but tomorrow, God willing, I will be planting.

After Lauren's scans.

Bedtime Analogy for Olivia

I was sitting at the kitchen table with Olivia last night.  Glancing at the paper that I had been marking up, she asked me what I was reading.  Rather than a piece of poetry, as she might have hoped, it was a research paper on cancer disparities. 

"Oh, this is to just to help me for my work in Washington DC in a few weeks."  It is sometimes difficult to explain the latest in cancer research. Olivia is 11 but she is curious and asked a million questions.  I have been asked to serve on a workgroup at the FDA for tumor agnostic clinical trial design. She really wanted to understand what this was about.  This was my explanation to her:

Your cells are complex machines. A cancerous tumor is a cluster of non-functioning cells.  It is not like a single broken down car on the side of the road with its hazard lights politely blinking, which you can slip into the other lane to make room for.  A tumor is hundred car pile up, that shuts down the freeway in both directions.  

Doctors initially defined cancer geographically, by where the defective cells had originated: breast cancer, colon cancer, skin cancer...  They would treat every traffic jam in Topeka as a "Kansas problem." In Kansas, they would try different approaches to deal with the collection of wreckage, looking for what would work best. Surgical tow trucks would haul out the debris. Sometimes, fires could level a junkyard.  But aside from this not being terribly effective, it was also hard to distinguish between cars that were just stuck in the traffic, and the broken cars that were truly causing the problem. Progress was painfully slow.  Few investigators collaborated outside of their specialty (The researcher's equivalent of 'What happens in Vegas, stays in Vegas!')

With better technology, scientists began looking more closely, at cancer DNA. Compared to shiny new cars coming out of the factory, many of those on the road have dings and dents. Researchers have discovered some defects, like a radio that wouldn't work.  While interesting, this sort of alteration wouldn't really matter at all. Some researchers found other changes that would stop the windshield wipers from working, or perhaps the headlights, which does not hinder the function of the car directly. You can still drive, of course.  But without these safety features, it is far more likely that a car crash will happen-- especially during inclement weather or at night.

I explained to Olivia that neither Lauren nor Brent have functioning headlights nor windshield wipers. It has been very dark and rainy for the RamerNation.  We have seen so many car crashes.  The past few years have been like having front row seats at the demolition derby. 

Once a cancer collision happens, and the traffic jam gets noticed, doctors try to clear the scene, while the scientists try to sort out the cause.  In recent years, researchers have been able to look even more carefully at the wrecked cars and debris to better establish why and how they are not functioning--Are they out of gas?  Have they run over glass and blown out the tires? Is there a problem with the motor?  Is there a problem with the brakes, the battery?  Identifying the specific cause of malfunction helps scientists to develop strategies to fix the problem. These important observations and mutational discoveries, seen across tumor type, signaled the very beginning of targeted therapy.

With the recent advances in developing targeted agents, researchers have begun to sort cancers according to their system failure (the mutation), rather than by the location (tissue of origin), which makes enormous sense.  When we understand what is preventing cells from functioning properly, we can begin to develop and administer a targeted fix.  (It kind of doesn't matter where in the country the 'flat tire induced car crash'  happened from a repair standpoint, unless you are in need of a surgical tow-truck.  In that case a tumor specific specialty makes sense. Go with the guy that knows the roads best. A neurosurgeon clearly should not do your hysterectomy.)

So, in these new cancer studies, all cars with flat tires will be collected, regardless if they have broken down in NYC, LA or Atlanta, and they will be given "fix-a-flat, " as an example, or perhaps a new set of tires. Similarly, all cars with dead batteries from across the spectrum will be gathered in order to be jump-started, or given replacement batteries. To be perfectly clear, these trials sort patients by mutational target, rather than by tumor type.  The treatment will target a particular mutation that is causing cells to not work properly, independent of what tissue the cancer presents in the body.  So, rather than creating a "breast cancer trial" researchers are beginning to design tumor agnostic trials that might include patients with lung cancer, breast cancer, pancreatic cancer and brain tumor, all with the same mutation.

Cancer patients generally feel overwhelmed, frustrated and scared silly:  They are late for work, unable to go to the grocery store or to take their kids to school because of a giant pile up that they never saw coming and don't understand. They often cluster together on the side of the freeway, waving matched colored ribbons like flags at a parade.  They believe that banding together will bring awareness and solve the tumor specific problem entirely--"Don't mess with Texas!" This made so much sense initially, when cancer was taboo, and we knew so little. We have since learned that it is essential to work together, across tumor type:  From California, to the New York Island.  

This new culture is an absolute dream for someone with LFS who tends to juggle far too many ribbons, and each month brings a new cancer to celebrate, for lack of a better term.  Being a cancer independent, unaffiliated with a particular party...describing those challenges could be it's own blog post.

Patients are only beginning to understand that the "why" their car doesn't work matters so much more than the location: of all the breakdowns in New Jersey, only some are flat tires. Every malfunctioning car in Trenton would not benefit from new tires, especially if it turns out that a good portion of these vehicles aren't running because of a bad alternator. This is why response rates, if you sort by tumor type, are so terribly low.

On the other hand, by ignoring tissue of origin and instead sorting by mutational type (sometimes called a "basket trial") researchers have seen much higher response rates in early phase trials, and these seem to require fewer numbers of patients to enroll before the FDA grants drug approval, evident in the record number of new drugs for cancer.  Witnessing this kind of progress is an exciting and hopeful change. Targeted therapies are easier on patients.  There are more of them every day.

But for patients to even qualify for this kind of trial, they must have genetic analysis of their cancer done.  This is a further challenge, when only 5% of adult cancer patients currently enroll in clinical trials, when they are easily identified. I hope to help researchers understand the barriers that patients face, and to suggest trial designs and strategies that will help bridge this divide and hopefully address the disparities.  We will collaborate, work with advocacy organizations and hopefully have more successful accruals. I know that the oncology world is changing rapidly, and this is encouraging.  I am grateful to be a part of that change.


In 10 days, Lauren will have scans again.  This is the necessary traffic report for a girl whose cells, lacking wipers and headlights, have sped through streets riddled with giant potholes and other hazards.  In a monsoon.  At midnight.   

We welcome your prayers. 


ASCO Tumor agnostic workshop