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.     

Easter 2018

The screensaver photo on my phone is from last Easter.  I remember that Brent had blessedly begun regenerating skin after a horrific case of GVHD.  He was weaning aggressively from his narcotics.  We were filled with so much hope.  Alex was home from Ann Arbor and we were all together after a long and stressful couple of months in hospital, most of it spent in the PICU.  Lauren was healthy. Life was good.

This year is quieter.  Brent is not here with us.  Alex is in Australia.  We finally found a moment of grace after the escalating cancer concerns of the past month.  Doctors have determined that Lauren has shockingly relapsed with osteosarcoma, but at least she had some reassuring staging last week.  While we have much work in front of us, sorting out a plan and likely returning to Houston for help with these uncharted waters, we are blessedly starting from a good position.  There is no evidence of disease in Lauren's body at the moment.  God willing, it will remain this way. 



Lauren and I have been listening to the Hamilton soundtrack over the past couple of weeks. I think of Brent when we listen, because he and I had always hoped to see this show together, long before it was a smash hit.  We schemed several times to attend with my dear friend Gabby, when Brent had appointments in NYC at Sloan Kettering. A mutant's calendar is hugely unpredictable, and this uncertainty is only compounded by trying to make social plans with another mutant. The planets never quite aligned. Gabby died last summer of metastatic breast cancer just as Brent relapsed with AML and Lauren was diagnosed with osteo.  I miss her tremendously.
 

Hamilton is tenacious, hardworking, outspoken and ambitious.  He yearns for glory in the revolution, even at the risk of martyrdom. There is a line in the musical where Washington sagely warns him, "Dying is easy, young man. Living is harder."  The truth of this statement echoes and reverberates.

Brent and Gabby are both gone now, remarkable individuals who worked incredibly hard to remain among the living, to share their laughter and love.  Living may have been harder for them, but I do know that it was worth it, for both.

Brent's living days were filled with so much activity-doctoring wounds, counting up nutrition, dosing medications and problem solving, day in and day out.  But there was laughter, and there was so much love. It was hard work, his living, but it was hopeful.  It was always worth it.

As helpless we were in witnessing Brent's death and as difficult as it was to plan his funeral with Dan, living these more recent and somewhat emptier days has been much harder in many ways. We trudge through, always trying to honor Brent's struggle and bring about positive change for others.  It is something that we can do.

I attended a living "Stations of the Cross" service on Good Friday with Lauren, the first time that I have been to St Basil's since Brent's funeral. While we are not Catholic, I very much wanted to go to an Easter service there.  I was impressed by how these teenagers, classmates of Lauren and Brent, selected popular secular music to reflect the various challenges that Christ faced on his last day. Lauren was touched by how her peers related the stations of the cross to everyday life, using their own experience and explaining it in their own words.

I wept, each time that Jesus fell.  Lauren quietly passed me tissues, God bless her kind soul. The public display of Christ's struggle, his repeated failures, as well as the kindness and compassion offered by Simon and Veronica really spoke to me. The youth portrayed a very human struggle, and one that I could relate to, drawing any number of analogies. 

Lauren drove us home afterward and I gazed at an enormous full moon out the window, thinking of Brent.  This was the second blue moon of the year.

We decorated eggs when we returned home, a typical RamerNation creative endeavor.  We made some eggs for Alex and Brent, which helped to heal my heart some.

Our family celebrated Easter yesterday, a time of rebirth and renewal. We rejoiced in our moments of beauty. Olivia shared Wordsworth's poem about daffodils.  Lauren sang some songs and played her Uke. The world continued to turn, with Alex having adventures on the other side of it.  Brent, even farther away, will remain with me for all of my days.

Inventory

I sleep restlessly, returning to images that are not dreams so much as rehashed memories of infection, anxiety, and decisions.  I sometimes see my son, silent and sedated in the background.  I am waiting for the true dreams to come, the ones where Brent is featured in an altered story line, like the vision I once had of my father and grandmother in a fictional episode involving an elaborate family dinner at a restaurant and them smiling and waving as they departed in a rag top jeep.  There was warmth and laughter in this visit, a dream that left me smiling and comforted.

After a week of inpatient chemo with Lauren, I began to work my way through the house.  It occurred to me that none of us have really been home much since June, between Lauren's treatment, Brent's trips to Houston and countless unplanned visits to Rainbow.  Alex has been back and forth between Ann Arbor for school and Columbus for his internship.  I recall several times when all six of us were working out of suitcases, Ramers coming and Ramers going.

There are so many things that I have to sort through, medical supplies to dispose of, equipment to return, stacks of papers everywhere.  I used to be incredibly organized, but my dining room should be reported to FEMA. 

Overwhelmed, I dodged the dining room altogether and began to sort through Brent's desk, which seemed far more manageable.  I began with obvious and easy things,  like textbooks that should be returned to the school.  

As I slowly worked through the papers, there were bits of memory that opened up. I found pages of incomprehensible equations in Brent's tiny handwriting from his progress last summer in AP Calculus. He always preferred to focus his efforts on math, even when he was feeling poorly because, "math made sense" and was easy for him.  I flipped through his biology homework and thought that this ought to have been easy for him, given his medical experience and the multitude of explanations of biological processes that were both practical and personally relevant. 

His planner from the 2016-17 school year listed detailed assignments for each day.  I remember my son's determination to attend the first day of school. only a month after being septic with necrotizing fasciitis.  That fall, he carried a portable wound vac pump as he crutched to his classes.  I noticed that the homework entries ended abruptly around the time that Brent had an incredibly painful surgery. I regret consenting to this procedure, one of the few decisions in all of this nonsense that I sincerely wish that I could have back. We worked hard that fall looking for better surgical options. Thankfully, we found them. But Brent never returned to school.

His wallet contained ticket stubs from movies and sporting events that he attended.  It also contained a decent amount of cash.  Brent seldom spent money on himself.  I remember him fretting a year or two ago about not being able to work, as many of his friends did.  Partially, this was because it was another notable difference between the path that his life had put him on, and theirs.  I had told him that he had a different sort of job, important and meaningful work.  I urged him to not worry about money, and assured him that we would buy him whatever he needed.  Brent didn't have specific wants for himself, aside from wanting to be more normal and productive. But he did cite concern about how he would buy birthday and Christmas presents for others.

I found a stack of novels with scraps of paper marking Brent's progress in them.  As a monogamous reader, I am bewildered by folks who have multiple books working at once. I remembered that he struggled with The Great Gatsby, telling me that he disliked all of the characters. I tended to agree with his assessment of them.  Brent's generous soul could not understand shallow or selfish behavior in real life and he found it difficult to immerse himself in a fictional version.  I noted the bookmark, and was rather pleased that he did not spend more of his precious time with unworthy and irredeemable characters.

I scanned a copy of the school newspaper and saw an article featuring one of his closest buddies.  I know that Brent celebrated his friends' athletic success, even while he struggled with his own mobility. He had remarkable friends that he longed to spend more time with. I found a class selection form. He still had his eye on the prize when he relapsed with leukemia.

I opened a composition notebook, one that recounted interesting articles that Brent had read on a variety of subjects:  art, architecture, natural sciences.  One entry described the work of Lin-Manuel Miranda, written long before Hamilton was a smash hit. I turned the page with some regret.  We had always intended to see that production together.

I discarded vials of eye drops and relocated a dozen travel packages of Kleenex, both persistent necessities after chemo and transplant. Traditional cancer treatments certainly take a toll on the body. We chose the best options available, but they often carried devastating side effects. Brent always said that it was worth it.

I found a card from the oncology clinic for Brent's 18th birthday, signed by people who have cared for him a very long time, and not just in the medical sense.  I remember the photos that we took that day. He was happy because Lauren was with us, her bald head covered in henna.

I flipped through a photo album that Brent kept on his desk, a birthday gift from his grandma. It contained happy memories of family gatherings and represented so much love.  I found the scribbles of a working copy of a poem that would become a gift to his other grandmother.  He had debated between haiku and iambic pentameter while he crafted something personal and complimentary.

As I inventoried his desk, the evidence piled up.  I was reminded of the essence of Brent's life, of the people that he loved and how hard he worked to be well for them.  He was always pushing to be his best self while he was with us. He was required to work incredibly hard. 

I hope that the effort of this archaeological dig helps to bring me physical sleep, as well as the dream visits that I so long for: where Brent is happy and whole, his health not a challenge that requires a creative work around, but a detail that recedes in the background.  I am working to focus my waking thoughts on who Brent was, and how he expressed this while he lived, rather than the heartbreak I have felt since he died.

This goal requires so much effort at the moment.  But I am inspired by Brent's example to make the most of what we have been given, even as we watch some of those gifts slip away. I was given a wondrous gift for a time, an extraordinary example of strength, of courage, of determination, of love. 

I am grateful for the experience.

A world changed

There are thresholds through which you pass in life, events that dominate the landscape enough to define the era.  "When I was in college...."  or  "Before we had children..."  For us, there was a pivotal swing in August of 2011 when Dan and I landed in Rainbow Babies and Children's Hospital, and began to actively fight cancer with our children.  Our lives since then have been a constant battle- sometimes more strategic in nature, sometimes completely brutal.  The scenery would shift, from hospital to hospital. The personnel would change, depending upon the flavor of cancer that we were dealing with.  But we have lived solidly under the umbrella of "after cancer" for six and a half years.

We have devastatingly crossed another threshold, one that will define the remainder of our lives. Brent, who worked incredibly hard and always managed to find his way out of tight spots, succumbed to infection on December 30th in Houston.  He was surrounded by those that he loved. We all returned to Ohio heartbroken, but determined to honor his life, and our love for him. 

So, we begin to mend our hearts, and bind up the empty places in our family. I take on a new identity, one so unnatural and unspeakable, that our language fails to name it.  'Orphan' and 'widow' articulate the loss of parents and spouse. But there is no word to identify a parent who loses a child.  I am a bit lost, literally without words.

For the RamerNation, as in all things, life is complicated by having two children with cancer.  We must continue our efforts with Lauren, who is in active treatment for osteosarcoma.  We cannot simply be still, cocooning ourselves in front of the fire while the snow falls, much as we might want to or as much as our souls might yearn for this. Tomorrow, we return to the hospital, pick up the tools at our disposal, and do our very best for our daughter.  

Brent, along with many others, was hoping for a different outcome. However, because of Brent, and many others, doctors and scientists are discovering better ways of dealing with cancer.  My sincere hope is that the tools become more strategic and less brutal.  But, ever practical, we pick up and use whatever we have around us.  For Lauren, what we have available is some punishing chemo, which carried devastating side effects for Brent. 

I try to remind myself that everyone has their own story.  Lauren is very different from her brother, and perhaps leukemia will not develop in her. Like all parents, we are trying to write our very best story with Lauren, as we did with Brent.  While Brent will not be active in our family for this next part, his experience taught us so much. His example of quiet strength and determination is our standard. His love flows through us all, and spills into everything that we do.

We have set up a page to honor Brent and support research.  You may use the following link to view:

Forever RamerNation

It is Christmas. We are looking for Miracles.

December is a month filled with preparations and anticipation for everyone.  There are cookie exchanges, packages, cards, holiday parties and every manner of excitement for the end of the year celebration, however you happen to name it.  The Ramers celebrate Christmas, but this year our preparations have been for a very different sort of event.

We have been waiting with diminishing patience and increasing anxiety to learn if the T cells that researchers at MD Anderson collected last month had sufficiently grown.  The call came a little over a week ago, that they were successful.  Chemo would begin on Christmas Eve and the genetically engineered T cells would be administered five days later.

Our preparations and travel arrangements were hastily made, and filled with gratitude because Brent now has circulating blasts.  It becomes a race in AML, to not have a catastrophic event as the disease overtakes the marrow, because it reduces the power of the immune system.  Infection becomes increasingly dangerous. Infection is the catastrophic event we most fear.

The day before we were to fly to Houston, Brent developed a cough.  I held my breath.

Overnight, only hours from our departure, he required more oxygen.  I wanted some for myself.

As the medical transport team arrived before dawn, Brent went into respiratory distress.  Heartbroken and despairing,  I asked that we fly anyway,  knowing that the only way that Brent might live, is if he could get to these cells.  I write this from an ICU in Houston, where Brent battles both leukemia and septic pneumonia. They have sedated and intubated him, giving his body time to fight the infection with the help of strong medicines.

While I knew that we would spend our holiday in the hospital, I did not anticipate that it would look this this.

We are so grateful for our new team of physicians and nurses at MD Anderson who are working hard to help Brent manage his dueling sharks. While still very ill, this is clearly where he needs to be.  Our whole family is now here. He is surrounded by love.

While the path ahead is filled with uncertainty,  I remain ever hopeful.  Perhaps with good reason:

We learned on this day in 2011, that Lauren had a sizable asymptomatic brain tumor. This was devastating news for Dan and me, but 9-year-old Lauren called finding it a 'Christmas Miracle.'  Two years ago, we managed to get Brent home for Christmas, nearly in remission, contrary to every medical expectation.  Last December, we had evidence of a successful skin graft between Alex and Brent, something that has never been accomplished before. This Christmas, we are hoping for another fantastic and improbable gift, better than anything available from Amazon.

I am grateful to be here, listening to the whoosh of the ventilator, waiting for the slow healing.  I have faith that it will come.

The Ramers welcome your prayers and send you our love this Christmas.

Unexpected and unlikely

I have been thinking a lot about cells.  Particular cells.  Special cells that, not unlike the RamerNation, have taken an exceptionally unusual journey.

The DNA for the cells were created over 20 years ago.  The ancestor cells grew in my son Alex, dividing and carrying on in the most normal of ways. There was no suggestion, for well over a decade, that they would do anything special.  It was assumed that they would live out their time quietly in the suburbs.

Two and a half years ago, some of Alex's cells were scooped up and abruptly transplanted into a foreign war zone, where they tried to establish a new life.  In Brent's body, these cells struggled and fought with the hostile natives, but they quickly became overwhelmed. 

By Thanksgiving of 2015, they were on the verge of capitulation, when another wave of refugee cells arrived from Alex, this time with a great number of mercenary T cells. This influx of special help turned the tide in a remarkable way, beating down the leukemia to undetectable levels.

The conflict continued over then next 18 months, but open hostility was downregulated--perhaps to something more along the lines of aggressive political maneuverings. We watched from afar, really hoping that leukemia was finally behind us.  However, over the past summer, going to clinic with Brent was like reading the international section of the newspaper. As lab reports trickled in, I worried that all was not well in this historically troubled part of the world.

By July, it was clear that violence had broken out again in Brent's body. Leukemia had survived and had gained a foothold.

Brent has seen horrific weaponry most of which kills indiscriminately, the equivalent of using mustard gas (Methotrexate is actually derived from mustard gas-fun fact).  He has undergone surgical sacrifice of large tracts of land and endured a nuclear holocaust (hello, radiation!) We have cut, poisoned and burned Brent in excess, in our efforts to eliminate the bad cells.  Scientists have been focused on problematic cancer cells for so long, always searching for vulnerabilities so that we can better kill cancer with new medicines.

I have been grateful for these efforts, and for this line of research.  The development of these brutal weapons is, in part, how Brent managed to beat osteosarcoma and metastatic melanoma. I often say that it has been an absolute privilege to develop treatment induced AML.  There is no snark found in that statement.

With immunotherapy, however, the focus is actually on these other cells, the good that exists in Brent's body.  Scientists are now studying ways to make what is working--cancer surveillance by the immune system--stronger and better. The traditional approach to cancer has been laser focused on the enemy, in a horrible war of attrition- (kill the cancer faster than you kill the patient). We are only on the cusp of this paradigm change, but it is very exciting and hopeful.

Last month at MD Anderson, we extracted some of those mercenary T cells of Alex's, which have been residing in Brent's body for a while.  We shipped them off to a lab in New Jersey where they will go through special ops training so that they can better identify and eliminate leukemia cells. They will be genetically modified to be focused on CD33, targeting a protein found on the surface of Brent's leukemia.

We are still waiting to hear if the cells have grown, and passed their training program.  They may hail from Alex's body, but they will fight passionately for Brent, their new homeland. We hope to infuse them back into Brent, in Houston, before Christmas.

Waiting for news of the cells is exceptionally difficult.  While many people hate a war analogy for cancer, I feel like a viewing of Dunkirk might be an encouragement to me about now.  I have often found inspiration in how Britain as a nation, survived such uncertainty and peril.  They were tenacious, and at times unconventional. 



Like Alex's cells, we began our family without fanfare, never suspecting that we would do anything unusual. I thought I would be quietly gardening in the suburbs, raising my children in the most ordinary way. I was not remotely ambitious, but always thought that my contribution to the world would be to raise extraordinary children with Dan.

I never imagined this, when I hoped that they would be extraordinary. But I rather think that they are.


We welcome your prayers for our family.

The month of September

It is September, the month where we "Go for Gold" in honor of pediatric cancer.  I write this from my daughter's hospital room as methotrexate drips in the darkness, the same yellow poison that we pumped into my son Brent nearly six years ago.  We are giving Lauren the identical chemotherapy regimen that caused Brent's leukemia. 

It sounds like madness, but we have no other option.

It is September, and my brave, bald daughter sleeps fitfully, frequently waking to ask for a basin, or medicines to help with the nausea.  I am not sleeping, partially because of these requests, but mostly because I know that I should be writing something.  It is September, after all.

I am not sure how to describe how we manage as a family, having two children with active cancer. Lauren is being treated for high grade osteosarcoma.  Brent relapsed over the summer with his treatment induced leukemia.  The RamerNation is shopping for clinical trials. We are enormously grateful for the support of our community.

We have said for many years, that research matters.  We have lamented that only 4% of federal spending at NCI is dedicated to pediatrics.  It is not nearly enough.  We have worked to support pediatric cancer research, raising funds for supplemental grants through non-profits like Kick-It, St. Baldrick's and Alex's Lemonade Stand.  We want to help other families who face a cancer diagnosis in their child, understanding how difficult it is to live with fear and uncertainty.  The Ramers also know the devastating side effects of a 'successful treatment' including organ damage and secondary malignancy.  We have worked to try to find a better way.

Research does indeed matter, and I concede and celebrate that some progress is being made. However, despite our varied efforts, there are currently no alternatives for treating Lauren's osteosarcoma, aside from toxic drugs dosed at levels sufficient to kill her without very careful management.  Brent needs a clinical trial for his leukemia, specifically a cellular therapy.  This alludes to the bit of progress that I mentioned.  We will travel next week to MD Anderson Cancer Center in Houston, a literal disaster zone, in the wake of a hurricane.

It is all madness.

Our difficult reality is more striking in September, when the Ramers typically talk about pediatric cancer and post yellow ribbons.  We usually visit a local field filled with golden sunflowers- a blooming awareness campaign along the highway sponsored by Prayers from Maria, a foundation that supports pediatric brain tumor research.  This year, regrettably, we are far too busy for such things.

I often say that God wouldn't give us so much cancer if we were not supposed to do something about it. I would certainly prefer to support these fundraising efforts than to participate directly in clinical trials.  God, apparently, has other ideas for us.  So, next week we will push back Lauren's chemotherapy treatment a bit so that we can travel to MD Anderson and speak to researchers about both kids.

I try not to think about what our life 'ought to' include, like being able to watch Lauren in the marching band on Friday nights, or seeing her run in cross country meets.  I try not to grieve senior activities and graduation for Brent, recognizing instead that his mental toughness is immeasurable, his endurance remarkable and his overall experience has been nothing that can be taught or prepared for in an academic setting. I truly try to focus on the things that we have been given: prayers, love and support from unexpected places, compassionate care from our team here at Rainbow, family time, even in a hospital.

We currently have the opportunity to speak with folks who are developing cutting edge therapies, a gift that I do not fail to recognize.  My hope is that the best and the brightest have good things to offer us in the month of September.  

I watch my daughter sleep in the dim light, listening to the hospital sounds, the familiar beeps and yellow drips. The scars on Lauren's body increase in number each year, but her sweet soul remains intact.  For this, I am grateful.

We welcome your prayers for our family.

Someday is today.

Two weeks ago, my sister asked me to ride with her.  We took a familiar route, one that we had travelled many times in the months that we trained. It was a beautiful day, and the first time since our race in June that I had even been on a bike.

"Laurie, we rode our bikes for 100 miles."

I repeated this statement, for the literal meaning, which was kind of astonishing to me on its own merit. 100 hilly miles is no small thing.  But it represented something far more significant and symbolic: the medical hills and distance that we have travelled as a family.  I find myself in a bewildering place.

Since that beautiful New York day, a mere seven weeks ago, my daughter Lauren has had three surgeries and a confirmed diagnosis of extraskeletal osteosarcoma. As we searched for therapy options that might spare her the risk of treatment induced leukemia, Brent was found to have AML.  This devastating relapse was confirmed the night before Lauren began the exact protocol that caused Brent's blood cancer.  Without any better options, we nonetheless began pumping Lauren with the same poisoned cocktail that we fed to Brent six years ago. 

Watching this infusion made me just as nauseous as the cisplatin made my daughter.

There aren't words to describe how busy, nor mentally and emotionally taxing these weeks in hospital have been. 

Each of the kids prepared for treatment, dyeing their hair in anticipation of losing it: Lauren donning bright purple and Brent going with sky blue. Lauren worked with her tutor, finishing all of next years math while she waited for chemo to begin and healed from surgery.  Lauren shopped for hospital gear. Brent had a get-together with friends. Cancer has become somewhat normalized in our home, which is probably good, but is also kind of disturbing.

We have had several admissions with both of them in at the same time, often on separate units and in different buildings. This has been completely overwhelming.

My sister had urged me to bike with her, in order to clear my head.  As we passed familiar barns and climbed elevations that we had trained on dozens of times before, I would pointedly repeat, "We rode our bikes for 100 miles." 

My sister would affirm this statement.  "Yes, Ann.  Yes, you have. You have done this.  And you will again."

While the specific challenges of finding appropriate treatment options are new, the process of 'figuring it out' is not.  We found a way to graft skin from Alex to Brent, relentlessly asking folks to consider our unique problem.  Dan reminds me of how we initially and repeatedly have been told 'no' over the course of the past six years and urges me to keep asking. It is often about asking the right people. Bold, creative and courageous people, in the right specialty. We have been blessed to have so many cross our path, just when we needed them.

I have worried and doubted about how this will happen again, the RamerNation pulling another rabbit out of a hat. My son is determined, so this inspires me to get busy looking. My daughter is strong, which bolsters my faith.  My husband encourages me to keep asking, learning and advocating.  Our family is simply better together. The combination is synergetic. We are much stronger than the sum of our parts.

As Brent finishes his bridge therapy this weekend, after a gnarly detour through PICU, I am thinking about our next steps. We will look in earnest for trials, particularly immunotherapy options.

I was biking less than two months ago to support Cancer Research Institute, with the theory that immunotherapy might be something that my kids would someday need. Someday certainly came crashing in on the heels of that ride.

Someday is today. 

We welcome your prayers for our family.

Riding 100 miles for the past, present and future

They say that you should have an Elevator Pitch--a point that you would make to a captive audience that lasts the length of an elevator ride.  This makes me imagine folks in the business world lurking at a bank of elevators and carefully slipping in when an important ear should be leaving for the day, speech at the ready.

I am not sure that there are buildings tall enough (or elevators slow enough) to accommodate what I would want to say these days.  I might, however, be able to cover it over the course of a 100 mile bike ride. This is assuming, of course, that I could breathe enough to speak as I pedal uphill.

Tomorrow, I will be driving to West Point, NY.  On Saturday, Alex, Laurie and I will bike in support of Cancer Research Institute which funds immunotherapy studies and trials.  Biking 100 miles will not the biggest event of my week--it is currently ranking 4th--behind the devastating loss of my friend Gabby to metastatic breast cancer, the challenges of finding appropriate treatment for my son Brent's GVHD and the surgery that we are organizing to remove my daughter Lauren's latest cancer concern.  

Biking 100 miles will feel like a vacation.  

I do hope that it will be a 'working vacation,' and that I will have the opportunity to speak to researchers about the things that they are learning, because advances in immunotherapy would impact all three of the things that have dominated my time, emotion and attention this week. 

When life throws you challenges, rapid fire like this, it can be overwhelming. 

I grieved over the weekend for the loss of my friend, a mutant Auntie who knew my children well. Gabby remembered better than I did when 'library day' was for Olivia, and often greeted her after school through the wonder of FaceTime. I would chat with Gabby while I folded laundry, which transformed this mundane job into an engaging social event. She had a special relationship with Brent as a multiple cancer survivor and visited him both at MSKCC and in our home. Like Brent, Gabby frequently found herself in medical messes, and like Brent, she always seemed to find a way out. 

I cannot express how much Gabby brought to my life, in laughter which came easily, and random knowledge, which rivaled google. But beyond this, she had a grace and wisdom in how she faced her own life-one filled with cancer, but overflowing with love. She recognized that life is not measured in years, nor health, but rather in lives that are touched. As an example, she knew by name, nearly every person we met at MSKCC, from the nursing assistants to the elevator guy, teasingly dubbed "chief of vertical engineering"

"Has your son returned from his vacation?"  

"Do you have photos of the new baby?"  

I told her how remarkable this all was. (I am decent with remembering people's stories but horrible with retrieving their names).  She scoffed. "But, Amish, they are all so important. They care for me." And they clearly did, more than simply as their jobs required.  I know this with absolute certainty because some came to her room to check on her after they finished their work elsewhere in the hospital.

People were important to Gabby. And she treated them like the treasure that they are.  Even in hospital, even struggling, she always thought of others, which was the defining quality of her life. While nothing can be changed for Gabby, a better understanding of the immune system and advances in cancer treatment would benefit others, including our mutual mutant friends. In this way, I feel that biking the century ride honors Gabby's generous spirit.

I learned yesterday how to stick a 3/4 inch needle into my son's chest to access his mediport. For years, my personal measure of success was found in avoiding this particular nursing skill.  I will now be doing this procedure daily, in order to give Brent infusions from home.  I also navigated my way through several pharmacies this week in order to get the specialty medications that he needs. We are transitioning to a new adventure. 

It may sound like a complaint, but I consider it to be a blessing, to do this at home. (Brent sits cozily in our living room with his infusion dripping as I type this) He has had a ridiculous medical journey and his time at home is hard earned.  We never take it for granted. 

After facing three significant cancer diagnoses with Brent and the devastating side effects of treating them, I would gladly bike to support more effective and less toxic treatments. Biking 100 miles is a trifle, in the grand scheme of what life and cancer has required of my son and how both impact him today.

I took my daughter Lauren to meet her surgeon this afternoon, a hand me down from Brent's osteosarcoma days. Dr. Getty greeted us warmly, saying that he could not believe that it has been five years.  I told him that it was five cancers ago, if he wanted another measure of time.  He seems to bring out the snarkiest of humor in me.

Lauren is now fourteen years old, becoming a beautiful young lady.  While normal parents might talk to their children about the birds and the bees, a mutant sign of coming of age is learning to pick a surgical plan or evaluate treatment options. Today, my daughter asked good questions and signed assent for the first time.  

They grow up so fast. 

Lauren and I laughed in the car on the way home from this appointment about how I had bought a baby photo album for her, but as a third child, it was completely empty.  (I didn't even purchase an album for Olivia, our fourth.)  Lauren joked that instead we could fill her baby album with cancer memorabilia.  "Oh, look at that adorable adrenal tumor!  I remember that hospital gown..."  She certainly comes by the snark honestly.

Her surgery will be on Wednesday.  We welcome your prayers.  With any luck,she will not need any sort of additional treatment, but I am shopping for immunotherapy options if this growth proves to be malignant.  

Past, present and future.  This is why I ride.

Our team leaves tomorrow.  We each do what we can.  My sister Laurie, Alex and I will ride our bikes. Dan, Jamie, Brent, Lauren and Olivia will cheer us on. Thank you for doing what you can, whether it be encouraging our family, sharing our story, or donating to the cause by following this link:

Team RamerNation 

As I ride, I will be thinking of Gabby's disease, unconquered by traditional chemotherapy, about Brent's current challenges, which are side effects despite the success of treating his cancer, and of Lauren's future challenges. I know that we can do better.

I will have 100 miles to think about how.    

Shaking it up

With a bit of time on my hands, while Brent naps, I thought that I would write something.  I found several empty, untitled drafts from the past two months.  I vaguely remember sitting down, but not knowing how exactly to describe what our family was doing.

In November, we successfully grafted skin from Alex and covered the large wound on Brent's back, something that has never been done before.  Alex took time from his studies at the University of Michigan to do what he was uniquely able to for his brother.  I am proud of his generosity to Brent and of the man that Alex is becoming.

While the graft has been a raging success, Brent has since developed painful lymphedema, GVHD and open wounds on his legs that have required a great deal of attention and care.  It was isolating, exhausting and discouraging for all of us, in ways that are difficult to put into words. Seeing your child in pain, unable to alleviate it, is incredibly difficult.  Causing the pain, even as we were caring for these wounds, was even harder.

Whenever I despaired, which was often, I would mentally point with gratitude to the things that were working: the absence of cancer and the success of the skin graft. I struggled this fall, trying to balance gratitude and grief. I was paralyzed emotionally, and physically weary from tending to Brent's medical requirements, discouraged without seeing progress or an end to his suffering.

I thought that I would shake things up in the new year by committing to a 100 mile bike ride that will take place in June.  The event raises funds to support immunotherapy research via Cancer Research Institute.  I registered for the race and began to train, believing that this would be good for me--mind, body and soul-- as well as benefit cancer patients like my children.

Brent's idea of shaking it up in 2017 was developing septic pneumonia, and enduring a five day stint in the PICU.

I write today from his hospital room, beginning our third week here.  My sincere hope is that we have checked the box for 'life threatening episode,' for 2017, a habit that is alarming on its own, but especially in the way that it has become routine for us.

Brent is improving slowly and we hope to return home sometime this week.

We welcome your prayers for the RamerNation, and if you were inclined, your support for Cancer Research Institute.

http://www.a2c.org/RamerNation

Pediatric cancer, LFS style

September is pediatric cancer awareness month, something that we have quite a bit of experience with, thanks to LFS.

With many inherited cancer predisposition syndromes, like BRCA, there is an ethical debate about testing children, who are unlikely to develop cancer until later in life. With Li-Fraumeni Syndrome (LFS), half of all cancers occur in childhood, so there is a real benefit to testing and screening minors. While the emotional burden is heavy, screening can save a child's life.  The Ramers have personal experience with this, having discovered four of the six cancers in my children, not due to concerning symptoms, but because we were armed with the knowledge found in genetic testing.  We were looking for cancer, before it found and overwhelmed us.

Through routine screening, physicians discovered two brain tumors, metastatic melanoma and acute myeloid leukemia in my children over the past five years, prior to any symptoms developing.  Early detection offered the advantage of less complicated brain surgeries for Lauren.  Consequently, my daughter's cancer diagnosis has not slowed her down. Lauren is an honor student in high school, in the marching band and she is currently running cross country.  I am so grateful for these blessings.

My son Brent has had a tougher run with his three cancers.  He has endured well over 30 surgeries, months and months spent in hospital, chemo, radiation, bone marrow transplant, immunotherapy, and epigenetic therapy. He has worked incredibly hard with his doctors, finally achieving a well deserved remission. I am proud to say that he is applying for National Honor Society and has returned to school for the first time in a year and a half. However, had either the melanoma or the AML progressed further, prior to his diagnosis, he might not have had the same treatment options.

Today, we are so grateful and yes, even hopeful.

• The Toronto Protocol, the guide that helped our doctors find these cancer early, was published just months before our diagnosis.  It has made a difference in outcome for us, and it showed up just in time. 
• We are incredibly fortunate in our team at Rainbow Babies and Children's Hospital. I could never properly express how we have been touched by people there who care for our family, and in a way have become part of our family.  I am so grateful that they are willing to think outside of the box.
• We recognize the diligent effort of cancer researchers worldwide who doggedly work to make this condition even more manageable. All advances in oncology benefit the LFS community because we are at higher risk for all forms of cancer.
• I am encouraged by the recommendations of the Cancer Moonshot Blue Ribbon panel which were revealed today.  Among other things, they urge that the research on the drivers of pediatric cancer be intensified and provide strong support for immunotherapy research, which is not DNA toxic. Brent got his latest cancer, a therapy induced AML, from the DNA-toxic chemotherapy he received to treat osteosarcoma. I stewed (kind of bitterly) in that fact for quite some time. We can do better, and will.

This brings hope that our future will be brighter than some very dark days that we have experienced. Lauren and Brent have had cancer simultaneously, on two different occasions. In 2011, Lauren had a brain tumor as Brent battled osteosarcoma.  Again in 2015, Lauren headed back to neurosurgery while Brent did chemotherapy for leukemia, preparing for bone marrow transplant with his brother Alex as his donor. Twice within a month, the Ramers had two rooms on the pediatric oncology floor, which sounds completely ridiculous.

This is pediatric cancer LFS style in its current state.  But I know that working together, it will get better. I am really looking forward to helping with that work.

Today is not that day.

A few weeks ago, I contemplated some time of my own, relishing in the luxury of how I might spend it.  I have a friend who frequently mentions that this sort of activity might anger the cancer gods.  I don't believe that life works this way, although I might have to give greater consideration to this notion. You can decide for yourself.

We are not, most gratefully, busy with cancer at the moment, but rather, cancer's aftermath.  

I worry that I might be developing a credibility problem.  If you google Li-Fraumeni, our rare inherited cancer predisposition syndrome, you will find an explanation for the six uncommon cancers in my children. If you search "necrotizing fasciitis," you might conclude that we are branching out from cancer, but in a no less devastating or dangerous way.  If you do not know our family, you might not believe me at all. 

Brent has spent the past two weeks in the hospital with a stunningly aggressive infection: a flesh eating bacteria. Four of these days were spent in the pediatric intensive care unit, three sedated and on a vent as they managed his septic shock.  Shock, would be the most appropriate word in that sentence.  He had six surgical interventions to remove necrotic tissue on his back and he faces several more in the coming months of healing.  

It is surreal, even typing these words out.

Whenever we have faced daunting odds with a cancer diagnosis, invariably someone will helpfully point out that death by cancer is not assured.  We might just as easily get hit by a bus.  For the record, I have never found this to be terribly comforting. If you find that you must support someone with cancer in this vein, I would add "or flesh eating bacteria" to the bus comment. 

The most helpful bit of encouragement that I ever received, came nearly five years ago from my sister.  As I despaired about our genetics, and the osteogenic tumor that encompassed Brent's entire right pelvis, my fear overwhelmed me.  Laurie was everything that I needed in that moment, acknowledging my fear as justified. "It is possible that all of the things that you fear may happen. It is possible that your children may die. But today is not that day."

I cannot say how many times I found the strength to tamp down my fears as worrisome things happened with these words "Maybe... But today is not that day."  I found a way to live, and to laugh, and to love.

However, in the interested of balance, I should also mention that I cannot count how many times in the past five years that I prayed "Dear God, please help me, because today very well could be that day."  Thursday, July 14th can be added to this tally.  

As they wheeled Brent out of the PICU to the OR, I despaired in a room littered with medical debris from hours of efforts.  Dan turned to me and firmly said, "This is only another chapter in the book." My husband is a rock, full of faith, in my moments of doubt.

As Brent's health progressed last week, our family resorted to humor. We told Brent of the things that transpired while he was so very ill and sedated. Upon learning that he had flesh eating disease, Brent quipped that this was nearly as cool as Lauren's proposed scorpion venom trial, something worthy of a zombie apocalypse.  Alex had offered his own skin if a matched graft for Brent would be a better option. (I am so proud of him for offering his brother a pound of flesh, in addition to bone marrow) There was much joking about how hairy Brent's back would be with Alex's skin attached. I am a firm believer in whatever gets you through. We are going to laugh as much as we can, and fairly inappropriately, or so it would seem.  

We are blessedly home, but many medical issues remain. Equally challenging, I am left wondering how to thank the legions of people at Rainbow Babies and Children's Hospital who have cared for us. I have felt this way before, once with Brent's orthopedic surgeon at Sloan Kettering. I struggled to find words that were adequate in expressing our gratitude for his help, saving both Brent's leg and his life. Dr. Healey, full of grace, simply asked that we go and lead a full and happy life, using our talents to make the world a better place.  

Well, then.

Despite my ardent wish, The RamerNation has yet to find a bit of 'boring,' the term we use for medical quiet. But beauty is evident in all of the unexpected places that we find ourselves.  Our experience has been extraordinary by every medical measure, and by virtue of the folks who have crossed our path. 

I am so grateful for every day of our life together, trials included.

Not traditional, but thankful

I woke up this morning, on Thanksgiving, under a beautiful quilt made by a woman I have never met.  She is from Manhattan, a friend of a friend, who ironically lives only blocks from Memorial Sloan-Kettering, a hospital that I spent many months in.  Today,  I find myself living in a different hospital, listening to helicopters as they land on the roof.  These flights remind me that someone is having a much worse day than me.

My son has relapsed with AML.  I have been medically focused for the past several months as we work to get Brent's leukemia under control.  We have tried a targeted therapy, an epigenetic therapy, radiation and just this week, a stem cell transplant with extra T-cell lymphocytes.  I am grateful for my time here with Brent, despite the geography.  I am thankful that my son Alex was able to donate cells again.

Our family has been under tremendous strain, as we are physically divided.  We have been separated before, and I try to focus on how our current distance is not nearly the challenge that it has been in the past.  We are near to our family and friends, able to swap parents and more easily arrange sibling visits.  We are not 500 miles apart.  While love knows no boundaries, embracing your children on occasion helps to reinforce this idea.

My thoughts are scattered and my mind only travels a few days in advance.  We must wait to see if Alex's stem cells engraft in the next two weeks.  In the meantime, I am told that every day without a 'catastrophic event' like infection, is a good day.  I try to make these days truly good whenever Brent is feeling up to it.  He is incredibly strong and equally kind.

Brent's doctors are thinking creatively about how to best help him. They are searching for answers and caring for our family.  We balance family and medicine.  We take each step, full of prayer and full of gratitude, knowing that our team is working very hard.  There is no clear path, and there are no obvious answers, but they travel the wilderness with us nonetheless.  They sacrifice time with their families on Thanksgiving, to help mine.

This holiday is a time to pause and count our blessings.  The Ramers celebrated Thanksgiving last week in order to be together as a family, and not delay this treatment.  While we marked the day early, the spirit of gratitude is fairly constant.  Our blessings, I believe, outweigh our challenges.  This is really saying something about our blessings, because our challenges are many.

The colors of cancer

ROY G BIV  Doxorubicin, the red devil. Methotrexate yellow. Mitoxantrone blue. Colors and nicknames. These days, the chemotherapy colors are more familiar hues to us than the ones found in a Crayola box. We will also get to see Propofol this week, which is white and opaque.  But this isn't a chemotherapy agent.  It is a sedation drug, which is kind of fitting, when you think about it, a liquid like White Out, a primer that blots out everything.

I wake up not sure where am, or why I am there, even on the rare occasions that I find myself in my own bed.  Our situation changes so frequently.  In my sleeping hours, I wonder if I escape to an empty landscape.  I do not remember my dreams anymore.

Perhaps my lack of dreaming comes from my late night reading.  I looked over the consent forms for an investigational drug last night and considered the odds.  The problems that we currently have are certain.  The potential problems that we are signing on for are substantial.  We have arrived at a place where there is no standard of care. There are no obvious answers. Dan and I are required to make difficult choices for both of our children,  all of which carry significant consequences.

We have been doing this for years, but it somehow doesn't get any easier with practice.

I am writing, but not writing well or easily.  This leads me to believe that maybe I am dealing, but not dealing particularly well.  Perhaps though, it is just because we are so bloody busy.  And I am so tired.

Interrupted just now by rounds, I learned that the beat down has begun.  The anticipated dip in blood counts has commenced for my son.  These counts will continue to drop until we are required to transfuse, repeatedly.   Brent will be wide open for infection.  Knowing this, we will continue the Cookie Monster blue medicine for another two days.  And then we will add another drug, which will drive down his marrow even further.

Brent is currently doing very, very well,  I remind myself.  This is a big breadcrumb.

Pick your poison.  Brent joked that we literally did this ten days ago, when we met with a group of doctors and learned that his leukemia had infiltrated the lymph nodes. The disease has to be controlled before he can go to transplant, using the perfectly matched marrow that his brother Alex offers.  The menu had been filled with all sorts of unappetizing things.  Brent helped select his own poison, at fifteen.

Lauren will have surgery this week to deal with a grey area in her grey matter.  Dan and I had to decide with her, as a twelve year old, about how to manage the tumor that is slowly growing in her brain.  I looked over the series of black and white MRI images with her doctor and saw the changes.

There were no clear answers offered from the medical folk, and the nuanced opinions all required that we take the lead.  The Ramers decided to deal aggressively with this, having experience that suggests that nothing improves with the wait. We will wait only until Thursday, when we will have two rooms on the pediatric oncology floor.

It will be a busy week in cancerland.  I would love to vacation somewhere else, but the Ramers are together, at least.

My nephew just came to visit, a ray of sunshine on this drab day.  He is a reminder of the outside world.  Another breadcrumb.  Eric shared the wonderful things that he is learning.  His visit reminds me that this day is one to celebrate, because it is filled with love, with wonder, with joy.

Despite our burden, or perhaps because of it, all of our days are worth celebrating, because all of our days are clearly filled with love.  I really need to focus on this part, and put the technicolor cancer options behind me now.  Decisions made,  I must leave it in God's hands as we move forward.

We are always looking ahead.
We always welcome your prayers.

I have another son

We all live with cancer in this house.

Alex, my 17 year old,  has been raised in a home where cancer visits with alarming frequency.  He has witnessed many things that most adults cannot even imagine.  I don't often write about him, and have tried to offer him space to be a normal teenager, independent of this oncology nonsense.  I am certain that I have failed, but I am pretty sure that he knows that I have tried.

Alex is extraordinarily independent, partially by necessity as Dan and I have been off 'cancering' with the other kids.  But in part, this autonomy is achieved by design, because our job is to make our children self sufficient.  Alex is driven, choosing an academic course load filled with AP classes, joining clubs, marching band, and varsity athletics.  Sometimes I feel like we need to tether him to us, he is so ready to fly.

As he finishes his junior year, Alex is preparing for college, although we have yet to visit any.  Demonstrating initiative and leadership, he began plans for a service project some time ago.  He is organizing a t-shirt sale at his high school, raising funds for Kick-It, which supports pediatric cancer research. His idea is an extension of a program begun at the middle school.  Alex wanted to build on this heritage of community and service.  And lets face it, pediatric cancer research is not beneficial in any sort of theoretical way for us.  We regularly engage with researchers as a practical matter at the RamerNation.

Things were going along swimmingly for Alex, until Brent was diagnosed with his third cancer in the midst of this project. I had hoped to offer Alex some help and guidance, but found that I was preoccupied with doctors, tests, and organizing what I could, in advance of the chaos to come.  

Alex moved forward with his sale with guidance from Dan, as well as some teachers from school.  The Ramers also moved forward, testing for a match and waiting for results, which is excruciating, when so much hangs in the balance.

On Wednesday, Alex was blessedly, most thankfully, found to be a perfect match for Brent.  In this case, blood is thicker than water, because a full sibling is the best accepted donor.  

Alex has just become an active participant, rather than an intimate spectator.  He will undergo more testing. He will be poked and prodded as his siblings have been.  He will spend time at the hospital.  He will spend time in the OR.  

As part of the Kick It program, the focus this year is on sibling impact.  Lauren will speak to her peers at the middle school about what it is like to witness her brother's struggle. She will also share how this has impacted Olivia and Alex.  In the very moment that she gives her speech, Brent will be in the midst of the chemotherapy regimen that will kill off his own marrow, making space for Alex's stem cells, which we pray will be accepted and grow.  She will no doubt be thinking of this process, of the importance of family.

Alex is following through on his t-shirt sale, taking orders this week, profits to benefit pediatric cancer research, hopefully finding treatments that are less toxic and less likely to cause subsequent cancers like this latest one for Brent.  I am enormously proud of the person that he is becoming.

His service project at the high school will finish, just as he heads to the OR, beginning a service project of a different kind.  We welcome your prayers.

Donations to Kick-It via Team RamerNation may be made here:  

http://www.kick-it.org/games/2015/06/kick-it-with-the-bees/team-ramernation

Alex participated with other siblings of cancer patients in a video for Flashes of Hope last year:

https://vimeo.com/108471100?from=outro-loca

Cancer Nesting

I had finished a blog for Living LFS about how we watch the shadows, and wonder about the sharks, always battling those closest to the boat.  I thought that I would step up my game a bit, and include a stock photo of some sharks with the post, which would require tech back up from my husband or kids.

The phone rang as Dan got home, our oncologist calling with the results of the next phase of the pathology.  Suddenly, it became clear that my kid had slipped into the water. Brent is now swimming with the sharks.  The best chance that we have, is for one of my other children to help him back into the boat. He needs a bone marrow transplant to cure his latest cancer.

They are all children.

I have been busy for the past week on multiple fronts.

Medically, there was the trip on St. Patrick's Day for our family.  We went to the hospital to be tested, all hoping that one of us is the lucky Perfect Match, and can be a donor for Brent.  I saw many touching photos that day, of oncology nurses with shaved heads, raising money for pediatric cancer research via St. Baldrick's.

We had a meeting after tumor board with the transplant team, to learn about what is involved in the transplant process, which is daunting all on its own.  It also happens to be littered with potential for complications.

I have been doing the things that I know, as a veteran of four previous tours of cancer duty:  Talking to folks at each of the schools; Contacting my social worker, my case managers, the insurance company;  Notifying those who I made commitments to, knowing that I will not be able to follow through; Canceling my few cleaning clients, which had been a feeble attempt at finding work; Cutting back on interests outside of my family.  I did this all understanding that it is necessary, but not without regrets. It was not always accomplished without tears.

I reached out to some researchers that I know.  I am using every tool at my disposal.  I am following the breadcrumbs that God puts in my path.  I pray.  A lot.

I have not yet been able to open the binder we recieved entitled "A guide to your child's transplant."  My volunteer work at the hospital, which I am forced to leave behind, asked for parent input in creating guides just like this.

Over the weekend, as Brent went to the Cav's game courtesy of a dear friend, and spent time with his buddies, I cleaned, organized, and tidied...both my house and my life. Like at the end of my pregnancies, I need to have things in order before we become indisposed. I am cancer nesting.

I have a quiet in me that I cannot explain, but one that am grateful for.  We wait to learn of a match.

We pray.

We wait.

We pray some more.

Visual art and the impact of seeing it all

As another load of snow landed at my house overnight, I am not entirely sad that I cannot leave today.  I am waiting for a delivery of Interferon, which is horrendously expensive and requires a signature, despite the fact that there is no street value to these drugs.  As the snow is piled up waist deep along the sidewalks, house arrest is not exactly viewed as a punishment.


It is a pause that I am having today.  I am taking a break from the work that I have been doing, both at the hospital, as well as for our non-profit.  I am reasonably caught up on laundry and feel indulgent this morning, letting the words leak out of my head.


A few weeks ago, I began an art project, which evolved into a sort of art therapy. With a bit of medical quiet, I took a visual journaling class with Lauren, as a special time to connect with her.  I have been feeling pressure, to cram in these sorts of good things, to prepare the kids for college, to do the work that I feel passionately about, to find a paying job... The list seems endless and overwhelming sometimes.  Cancer has required a great deal of our attention, and it has not often been out of view, or for very long, evidenced by our Christmas march through radiology and surgery.


To be honest, this pressure and constant medical interruption is incredibly frustrating.  Even in the 'quiet,' there is much that needs to be arranged, planned and organized.  I am not complaining about the quiet, believe me, but I think that few understand what is involved. 


Anyway, I appreciate art, but generally consider it a spectator sport.  Dan is visually imaginative, and I generally defer to his efforts in photography, graphics and every manner of design.  I have no regrets about this, because his creativity is no match to mine.  However, after taking this art class with Lauren, I was inspired.  I explained to her that I was going to make a collage of sorts, to represent the past several years of our life in the rabbit hole--the good, the bad and the ugly.  I have things that are fair representation of each: x-rays, pathology reports, photos with friends, words of support.  There are things that represent both the hardship, as well as the help.


Not quite understanding, Lauren asked if I was going to cover a canvas in glue and dump the contents of my hospital suitcase onto it.  Well, sort of.  I had a box of 'cancer memorabilia,' for lack of a better term.


I worked through the box, looking over the various items, each that triggered specific memories for me.  As I spread it all out, and selected the most important things, the sheer number of visual representations of our story kind of hit me.  I went out and bought a second canvas. 


Evaluating the different bits, I was struck by how dark some points were.  And how lonely. And how filled with despair.  But that in those same moments, encouraging words would come, or a friendly face would appear.  In our struggle, we found connection. From our isolation, we found a much bigger world.


I am have been frustrated with our lot of late, because of the ways that cancer and that the realities of LFS hold me back.  I have felt limited, inadequate and unable to be the person that I would like to be, in many, many ways.  It has been hard.


But as I look over my art therapy project, my gaze is drawn to a hand crafted card that Brent's nurse gave to me at our lowest point, when we had two children in the crosshairs of cancer.




What cancer cannot do

Cancer is so limited...

It cannot cripple love.

It cannot shatter hope.

It cannot corrode faith.

It cannot destroy peace.

It cannot kill friendship.

It cannot suppress memories.

It cannot silence courage.

It cannot invade the soul.

It cannot steal eternal life.

It cannot conquer the spirit.

Cancer is so limited.  I really like this. 

And when I notice that the vast majority of the photos around this card are of our smiling family, even when some are bald, or hospitalized, I believe it.  Cancer truly is so limited.  And if cancer is that limited, then maybe I am a bit less limited than I sometimes feel.

It is (frequently) New Year

I imagine that there a host of people out there today, making resolutions, starting fresh, starting over.  There is something about a brand new calendar on the wall that suggests that anything is possible and almost begs for change, for our better selves to make a showing.  It is a day for hope.


I have never been one for making new year resolutions, always thinking that when you see a change that needs to be made, today is the day to do it, regardless of how far into the month we are.  But I rarely do things in a traditional way anymore.


As an example, I cite our advent season. It read a bit different than most, being dictated by the slow but steady progression that we know all too well, of gathering information about cancer.


December opened with big scans on both kids, followed by the delay as inconclusive, but concerning results dribbled in.  Brent required a PET scan in week two, again, with requisite wait for interpretation and results.  Tumor board, surgery and the excruciating wait for pathology took up the remainder of our pre- holiday time.


Throughout the month I deliberately committed to further responsibilities as a volunteer, really hoping that I would be able to fulfill those obligations.  I continued to look for work, despite the travel to Houston or New York City that might have been required for cancer.  Instead of baking cookies, I filled my freezer with pans of lasagna.  Instead of sending out Christmas cards, I cleaned out and organized closets. I tried to be prepared, to be able to run a household from afar.  And I waited for each slow step.


It wasn't until we began our Christmas celebrations that I realized the heaviness I had been carrying around with me all month.  I am in great LFS shape, as I like to say, because I am far too familiar with the hospital process, the slow measured steps of cancer.  I did not get ahead of myself, as I did last January, trying in futility,  to push things along.  This time, I simply waited.  I knew who I would contact in case of advancing disease for the melanoma.  Or recurrent disease for the osteosarcoma.  I didn't even research the lymphoma.


I recognized the things that I could control, which wasn't much.


I do not in any way want to minimize the joy, the gratitude and the celebration that came on the Ramer's non-traditional Christmas Eve, when we learned that no malignancy of any sort was found in the suspicious lymph node that they removed from Brent.  There was a lot of whooping it up.  There was dancing.


And wine.


Believe me when I tell you that there is no greater gift than the health of your child.  These tidings of great gladness arrived three years to the day of when we learned about Lauren's brain tumor.  I sort of consider this to be a good omen, replacing the negative association that we have long held with December 22.


So, despite an overnight trip to the hospital on Christmas day for post surgical drain issues, we have had a lovely holiday season.  And it would appear that clock starts over again for me, where my time is somewhat my own, free to pursue the things that I would like, uninhibited by considerations relative to cancer.. With LFS, we are like planet running on a tighter orbit, traveling around the sun every three months instead of every twelve. New Year's resolutions can come more often for us than for the rest of the world. 


My resolution is to replace all the days and dates that have weighed me down, experiencing new and joyful things that obliterate the darkness and worry...every three months...until forever.

A desolate beauty and the perspective that cancer offers

Today I went for a run with my daughter and the dogs.  It was cold out, a crisp winter morning, but lacking the snow cover that would make it feel overtly Christmas-like.  We are fortunate to live in a neighborhood that is nestled into the national forest.  It is truly beautiful.


Lauren and I stopped at the lake and sat for a bit in the stillness and quiet.  I thought about how different that this place feels from the summertime when the air is filled with birdsong, cicadas, children's laughter and more than anything else, the color green.


The trees seem naked and cold.  The earth is covered in spent leaves, interrupted only by brown tree trunks and frost.  It is a lonely landscape, where you can now see quite far, view the contours of the land and detect streambeds that had previously been hidden by the summer foliage. 


For some, looking upon this landscape, it would have seemed bleak and despairing---a loss. The summer warmth had left. All of the vibrancy of autumn had been stripped down. It was still and cold. But Lauren and I could look across the land and witness countless trees including some truly enormous oaks that a few short months ago were completely hidden from view.  They stood together in the denuded forest, their presence pronouncing a quiet strength, and each form proclaiming a solid footing.


I talked to Lauren about how in the bustle of daily living, you can get lost.  You can fail to see the forest, for the trees. Sometimes, you can even miss the trees for the abundance of leaves obscuring your view. 


The Ramers are having a bit of a pause right now, as we anticipate my son's surgical biopsy later this week.  It is one of those moments that your life swivels on.  Unfortunately, we have become somewhat accustomed to such moments.


As we walked back home with the dogs, Lauren and I ran into our neighbors, who we seldom see.  One is a pilot, who had reached out and generously offered his help when Brent needed to return from New York after surgery three years ago. We exchanged pleasantries, but I was suddenly struck by how large the forest is, and how numerous the trees. 


When cancer enforces a pause in life, removing all of the comfort and distraction of routine living, you can see so much farther. The forms and structures of the landscape become evident.  The character of the terrain is revealed.  And we are reminded that many surround us, who in our busy moments of daily living, we cannot see, or simply fail to notice. 


While I detest cancer, it is the vehicle by which I have seen a great forest, a community of strength, of support and of compassion. Vast evidence of love has been revealed to me in our exposed and vulnerable state.


So even in this, I find an uncommon beauty.

Reviewing life, inspired by a bowl of mashed potatoes

Looking back can be really hard sometimes.

I have a dear mutant friend whose son has just been diagnosed with osteosarcoma.  I have been trying to provide support, encouragement and tips for what could lay ahead for them.  This requires that I recall our journey of three years ago in detail, revisiting the challenges, and remembering the fear. 


I am so grateful to be on this side of the nightmare.  I shake myself, shedding the worries that cling to those events.  I have to remind myself that our reality is different now.  Those trials are currently behind us.  May they always remain so.


Looking back can also be lovely

Last night at dinner, Brent thoroughly delighted in a side dish of mashed potatoes.  I was transported back to a time before our challenges, when the kids memorized poetry with me, and learned interesting things that had far less of a practical application than they currently do. 

"Mashed Potato/Love Poem."  by Sidney Hoddes

If I ever had to choose between you

and a third helping of mashed potato,

(whipped lightly with a fork

not whisked,

and a little pool of butter

melting in the middle...)

I think

I'd choose

the mashed potato.

But I'd choose you next.

We pulled out the poetry books from the bookshelf in the kitchen, and read through some of our favorites, right there at the dining room table.  In our home, we have always been drawn to two types of poems: those filled with beauty, and those bursting with humor.


This exercise was rather like recalling a dream for me, not in the moments upon waking, when the details are fresh and crisp, but after lunchtime with the fuzzy bits coming to your mind all out of order.  Last night I longed for the warmth and quiet of my bed, to somehow return to that now foreign story, filled with poems, innocence and promise.

But seldom can you revisit those sorts of dreams.


Looking forward can be exciting.


My life has taken a big turn, obviously, from what I had ever imagined for myself.  I am working with some terrific and passionate people in the non-profit world.  I am doing things that I would never have found the gumption to do, coming from that quiet domestic place that I enjoyed with our children. 


While I would have preferred to never have been wrenched from that peaceful life and thrown most unwillingly into a world of doctors and researchers, there is joy to be found in what I do now. There is optimism.  There is anticipation, mixed with utter bewilderment that I am trying, and actually doing some of these things.


It is very different from my former life which focused on home and hearth, teaching our children history and poetry.  But it is also very different from living on a pediatric oncology floor, so I am grateful.


Looking forward can be intimidating.


I think about the future, of our children going off to college. Of research.  Of the things that I would like to get done before we might become medically busy again.  There is a pressured determination that comes with LFS, to reach goals while you are afforded the opportunity.   I see it in my mutant friends.  I see it in myself.


But I suspect that most mothers have a similar sense of urgency, as their children grow up and prepare to leave.  Our family dynamic will be different when Alex goes off to college in a year and a half.  I am trying to make the most of this time together, particularly as we have missed so much of it in recent years.


The changes that we have gone through will prepare us for the transitions that will come. I know that change is the only constant.  I try to be open to what the future will bring.  I am really hopeful that it will again be filled with poetry, humor and beauty.


But Brent says that he would be satisfied if it simply offered an extra helping of mashed potatoes.