Joe Biden throughout my year

February 2018

I have been struggling with the loss of my son. People often ask how our family manages, how I even get out of bed in the morning.  I have had physicians over the years declare that we must have a very strong faith, words that sounded curious to me partially because they come from medical folks, but mostly because we are not affiliated with a specific denomination.  

What I can say with certainty is that regardless of your church membership, losing a child will give you spiritual pause. My conversations with God over the past month have been filled with questions and confusion.  I had every confidence in traveling to Houston, that MDA was where we needed to be.  Every sign, every single breadcrumb pointed to Texas.  I prayed throughout the clinical trial process last fall, that if this was not the path that we should be on, to please make it very clear, very obvious, because God knows, I am not so smart. 

While we were in Houston over the holidays, I knew that Brent's road to recovery would be exceptionally difficult.  But neither Brent nor the rest of us have ever been afraid of hard work.  And I kept thinking about the medical flight that showed up, one that I didn't even know that we would need. Brent miraculously got to Houston, and the cells were right there.  His life was in a precarious balance, but our faith was not.   

Since Brent has died, I am haunted, perplexed with what I am supposed to do with this experience. What was the point of his struggle? I haven't been afforded the luxury of being quiet and still, as some have urged, with Lauren finishing up chemotherapy. But I wonder during my quiet moments, why we needed to be in Houston, if not for the cells.

A dear mutant friend of mine offered to take me to see Joe Biden speak in Washington DC. Mills is a nurse with the Navy in charge of executive medicine.  Among other people, she arranged care for Joe Biden's son, Beau and security for the Vice President and his family to visit him at Walter Reed.  As a thank you to his son's caregivers, tickets to this event were offered, and I got to be Mills' +1.  

I have not had time away for myself since Mother's Day, when I went to Sloan Kettering to visit our friend Gabby, while she was dying from breast cancer. So, I carved out some time for self care, and drove to DC on Sunday.  I had hours alone in the car to think, and to cry some. I had conversations with God. While I have no doubt that there is purpose in all of this, I am super curious to know what it is. 

Patience, we have long established, is not my strong suit.

I have followed the progress of the Cancer Moonshot from its announcement. As I would read research developments with my coffee each morning, I would share interesting and exciting things with Brent as he started his day.  We spoke admiringly of how Joe Biden used his painful experience to help others.  The Moonshot investment was incredibly encouraging and it was established just at the time that immunotherapy began to explode.  I really thought that Brent and Lauren would ride the crest of that giant wave. 

Joe Biden is on a book tour, sharing his experience with grief, having lost a son to cancer, a son full of goodness and promise.  Beau was also in a clinical trial, hoping to ride the same crest.  I went to the event thinking that hearing Uncle Joe speak might be helpful to my soul...because while we might seem like very different people, I could certainly relate to his disappointment.   

When we got to the venue, Mills revealed that we had the opportunity to go to a 'meet and greet' where you can get your photo taken with the Vice President.  I slipped a photo of Brent and Lauren out of my purse, because I wanted to share with him how much the work that he does has mattered to us.  I struggled emotionally as we approached, and my dear friend introduced us. I could hardly speak for my overwhelming emotions.

When Joe Biden learned that Brent had recently died, and that Lauren was in treatment, the meet and greet line abruptly halted.  He wrapped his arms around me and told me that he truly understood what I was going through, having lost two children. He murmured kind words and assured me that I would get through this.  He held my hands in both of his and looked at me with eyes that I recognized...ones filled with understanding, and deep with grief.  Mine were filled with tears, so it was a little blurry.  

He called over to his assistant and asked that I be given his personal cell phone number--and Mills's eyes widened. The Vice President said that he wanted me to call him if I needed anything, even just to talk. It was rather surreal, thinking about how often our family discussed the important work that this man was doing.  But at the end of the day, Joe Biden is simply a parent who knows what it is like to lose a child.  There is no escaping this.

We took our seats in the theater to listen to the chat between Jay Cohen and the Vice President. As they began to talk about the book, I heard Joe Biden describe meeting me, our loss of Brent, and of Lauren being in treatment.  The book, he said, was written to help folks with loss.  An hour later, Jay Cohen brought our family up again...it was the strangest feeling, sitting there in the audience, anonymous among thousands, yet not anonymous.  

As I drove through the mountains yesterday in particularly bad weather, I thought about what I will talk about when I reach out. (Mills keeps messaging me, urging me to make the call)  I feel a kinship with Joe Biden, in faith, in loss, in determination to do something good with it all.

Uncle Joe should send me his dry cleaning bill, because I think that I might have snotted on his sleeve.

April, 2018

I forgot that I had written this blog post in February- the persistent snow in April feels the same even if other things are much different.  Lauren has finished treatment, but another tumor was removed from her leg.  The pathology was reviewed by MD Anderson, who determined that it was osteosarcoma, although this is a most unusual picture of metastatic disease. I waited anxiously during her PET scan, furiously playing words with friends and looking at my phone for distraction.

I couldn't pray in that moment, feeling overwhelmed by all that we have gone through over the past six years, and especially the events of the past six months.  I was done petitioning God for guidance.  I asked for no breadcrumbs.  I was sort of throwing the bullshit card because, well, we needed a break, and clearly we weren't getting it.

It was then that an email response arrived from Biden's Cancer Initiative, suggesting a couple of advocacy groups that I might work with.  That seemed like a rather big breadcrumb.  And while I still could not pray, I did make a promise:  I will do the work.

Lauren's PET was completely negative.  Her lungs were clear. It was an isolated met in her skin, which is absolutely not how this disease works.  It is unsettling to have a child who does not follow conventions and rules.  I think that it is unsettling for physicians as well.



June, 2018

I return to this story of Mills and Joe Biden.  

I went to Mill's retirement party over the weekend, which was sort of like going to a wedding without a groom. I should mention that this is the first time that I have been in a large group where people don't already know our story. Socializing is kind of awkward.  

"How do you know Jennifer?  Did you go to college with her?  Are you in the Navy?"   Different shades of the truth always lead to the same end:  I am a mutant friend. We met online in a support group.  Mills is an amazing cancer friend. LFS.  

Follow up question--so you have had cancer then?  Nope.  Sigh.  My kids.

Inevitable follow, to the follow up question--How many children do you have?  This feels like a trap, a trick question.  I have four.  Two affected.  One died.  It is a party, why am I talking about this?  There were several non-cancer-y guests who went on to share some pretty cancery stories with me, which somehow made it less uncomfortable.  We talked about the challenges of illness, to be sure, but also the good that can come after loss. 

I am keeping that promise that I made, and am doing the work.

To my credit, I do not cry during this retirement party.  At the pre-party, the night before, I met Mill's mother, who has lost both her husband and son to cancer. The majority of our 'mutant posse' was there, helping me to spill some wine and tears.  Plenty of both.  

But at the retirement party, I could focus on celebrating my friendship with Mills and my other dear friends there, rather than how sad I am about Brent and our friend Gabby who died from breast cancer last summer.  There was a whole lot of laughter, which I know honors both of them. 

Back at home, my brother shared our story with a friend of his, who runs Senator Sherrod Brown's campaign operations for Medina County.  He called me up out of the blue to offer tickets to a fundraising event.  Joe Biden would be speaking at the dinner.   

I very much wanted Lauren to meet the Vice President, and picked her up from Flying Horse Farms oncology camp a day early.  I was stunned that the Vice President remembered me, months later, as I came up to introduce Lauren. (This is an amazing gift that politicians have) Ever kind and gracious, he offered encouragement to Lauren, insisting on a photo of just the two of them. 

Neither one take a bad photo.

December, 2018 

I have been mentally stuck, not writing very much.  Our long year of grieving is coming to a close. I miss my son, but am channeling that energy, working to change the things that did not serve him well. I have seen some progress in both legislation and policy, something that I am proud to be a small part of, adding my voice to the chorus.  There is power in the collective.

Last night, I read that Joe Biden had another stop on his book tour in Montana.  He was interviewed by Bruce Feiler, who I had skyped with for two hours back in April, as part of his own book project.  He is a best selling author, who also happens to be a 10 year osteosarcoma survivor. He was also a patient of Dr. Healey, the brilliant surgeon who worked tirelessly and successfully to save my son Brent's leg, back when he had his first cancer.  

Missoula Current article

It is odd to me, how the world has become so much smaller, and more interconnected. I am very glad that I am tangled up with the sort of people who are using their time, their talent and the platform that they are afforded, to make good things come of their struggles.  

I am trying to do the same, just fumbling my way through.

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.

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

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.    

What doesn't kill you...

I spent nearly two months in the hospital this year with Brent, who is thankfully regaining his strength every day. I have things to work out in my mind.  I really need to work out my muscles as well.  So, I have been preparing for a hundred mile bike ride on June 10th in support of immunotherapy.  I have been writing a bit as I train with my sister and son Alex, both who are joining me in the fundraising event. I thought this entry was worth sharing.

5/10 (27 miles)

It was a lighter day for us after the long ride, really just trying to keep our legs loose.  

I thought, with gratitude, about the scientific community working on cancer.  A number of people have asked me why I am biking for Cancer Research Institute, when we have historically been active in pediatric focused efforts, like Kick-It.   We still support childhood cancer research, which is seriously underfunded.  But as I pedaled along, I thought about Brent and his gauntlet-run through oncology over the past six years and the role that immunotherapy has played.  

Throughout, I have prayed for specific things--for blood counts to rise, for pain to be avoided, for healing to happen.  I prayed all the time.  But often, I simply prayed for guidance.  "Show me what to do, and I will do it."  

Back to immunotherapy.  Brent first had osteosarcoma in 2011, a huge pelvic tumor.  After he had his limb preserving surgery at MSKCC, he was plagued by infection, something that required several other surgeries, further hospitalizations and delays of his chemo, all really bad stuff.  A few months after Brent completed this regimen, I read an article about how folks with infection issues suffered less sarcoma relapse.  I always try to find an upside in our struggles and remember sharing this bit of information with our docs. "Good thing we were dogged with infection."  They were fairly horrified.  The correlation was there, but calling infection good, is like telling a bride that rain on your wedding day is considered good luck--cold comfort when a weather event ranked somewhere between a deluge and a hurricane blows over the reception tent.

We marched onward...and discovered Brent had metastatic melanoma. Curious about how common this diagnosis is in LFS, and desperately seeking treatment ideas, I shared Brent's struggle in Living LFS's online support group. A friend messaged me and offered to text a family friend about Brent, someone who "works in melanoma." Her family friend was Jim Allison, who is now a stadium filling rock star in cancer immunotherapy. Back then, he recommended doing Interferon just as our local team had suggested.  But if it should fail, he recommended that we consult Jedd Wolchok at MSKCC, a former colleague of his. Brent did almost a year of interferon, which is an immunotherapy drug.  Melanoma, thankfully did not return. But as a result, I began following immunotherapy researchers and reading as much as I could about this emerging field.

The most exciting thing for me about immunotherapy, is that it does not rely on p53 function to eradicate cancer.  With Li-Fraumeni Syndrome, Lauren and Brent have only one effective copy of p53. The work of detecting and shutting down a faulty or damaged cell is seriously impaired, which is why my children are so prone to getting cancer in the first place. If the immune system could be harnessed to detect and eradicate cancer, it would bypass a weakened cellular mechanism and not do further damage to that already sketchy process, as chemo and radiation are prone to do, quite indiscriminately.

Brent's melanoma treatment was interrupted by just this sort of collateral damage. He developed treatment induced AML, an aggressive leukemia that requires bone marrow transplant. We were fortunate to have a perfect sibling match and we spent the better part of 2015 in the hospital, fighting to just get to transplant and then going through that arduous process. (Lauren threw a recurrent brain tumor into our summer schedule. It is a ridiculous life with LFS.)  

Brent relapsed almost immediately with AML.  I prayed for health and ideas.  He became desperately ill that autumn, and his oncology team at Rainbow Babies and Children's Hospital tried to just get him home for Christmas. They proposed using the power of Alex's transplanted immune system, boosted with extra T cells, unchecked by any protective immunosuppression.  It was dangerous and uncharted and shockingly, it worked beyond their hopes, although Brent didn't achieve a complete response. We tried epigenetic therapy through the spring, trying to bridge Brent to a trial.   

As I pedaled along, absorbed with the twists and turns and how I came to be training for 100 miles in support of immunotherapy, I wondered if God speaks through Mick Jagger, because the Rolling Stones were stuck in my head--"You can't always get what you want/ but if you try sometimes, well you might find/ you get what you need." Like the persistent infection that nipped at his heels during osteosarcoma, Brent seems to have benefited from a stunningly aggressive case of necrotizing fasciitiis (which is flesh eating bacteria-I return to the notion that we live an absurdly unbelievable life)  This infection nearly killed him last summer.  No one would prescribe such a thing, but in hindsight, there may have been an upside: The giant immune response required for Brent to overcome sepsis seems to have finished off his leukemia. Certainly not what we wanted, but perhaps this was what Brent needed.

Brent lived an incarnation of the phrase "What doesn't kill you makes you stronger"  Trust me, administering a drug like nivolumab would be a far preferable way to achieve this immune response, than dealing with the surgical after-effects of this devastating infection. I support immunotherapy research to help scientists try to understand the mechanisms of the immune system and develop more refined therapies than what Brent has endured.  The immune system may be powerful, but current therapies are bluntly applied, unevenly effective and not deeply understood. CRI helps scientists advance this promising new field.

We will never know for sure, but as I look over the explanations for how Brent has survived these malignancies, science would point to the power of the immune system being a significant factor, although I do not question the power of prayer: a combination therapy.  

Brent gratefully remains in remission.

If you would like to help me support this research, click on the link below.  Many thanks!

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.

HONY and electronic breadcrumbs

I wrote about HONY(Humans of New York) once before, expanding upon my thoughts regarding the blessings that are found in this country, compared to war torn countries.  I still follow this Facebook page, a glimpse of everyday people with 'normal' or perhaps just different concerns.  I have taken up residence in a pediatric hospital with my son and use it as a way to check in with the outside world.

This is my second HONY story:

A year and a half ago, my son Brent and I were in NYC for follow up with his orthopedic surgeon at MSKCC, after the long and difficult treatment for osteosarcoma.  Brent had received fantastic news that he didn't need to return for a year.  We were celebrating.

Just prior to this travel, Brent had sentinel lymph nodes removed to be sure that his new cancer, melanoma, had not spread.  We were waiting for the pathology results.  Three hours after finally finishing osteosarcoma, we learned that Brent only exchanged his osteo placard for one reading 'metastatic melanoma.'  I was devastated.

As we flew back to Ohio,  I was filled with worry and fear.

At that time, I must have stumbled across a HONY post and impulsively commented.  I generally take inspiration and encouragement where I can find it.  This HONY photo showed a man in a wheelchair.  The caption read "Had cancer six times. Beat cancer 6 times."

On Feb 12, 2014, I responded at 10:32 in the morning.  "I needed this, in the exact moment that I saw it.  Thank you."  I have no specific recollection of making this impulsive comment.  It was a year and a half ago.

About a week ago, around the time that my daughter had her brain surgery (incidentally this was cancer number six between our children) I got a FB notification that someone 'liked' this comment. This is a website that has over 13 million followers and gets thousands upon thousands of comments per post.  Suddenly, someone that I didn't know liked a comment that was buried in over 6,000 comments, in a post from well over a year ago, one that I had completely forgotten that I made.

I thought that this was odd, but found a breadcrumb of encouragement in it.  In this crazy mutant life,  I pray for breadcrumbs every day.  I pray for God to show me the way out of the wilderness.

But each day since then, and sometimes more than once a day, I have had notifications that someone "liked" my grateful comment about the man beating cancer six times.  It has been a sort of gentle encouragement to me, a private reassurance and moment of wonder each time I saw an additional notification,  as we have been fielding challenging news with both of our children who are duking it out with cancer.

Yesterday morning, I finally shared this story with a dear friend.  I told Julie that I am not thinking that God lives in Facebook, nor speaks through Brandon, the HONY author, but that this was so very unusual.  Somehow, I feel things might just be ok.  She reminded me that there are no coincidences in this life.   God works in mysterious ways.

That is no lie.

I went on to have a long and emotionally draining day in the hospital.  My husband and I sat in a meeting where they outlined the various ways that my son's bone marrow transplant could go horribly wrong, and ways that our son might die.  I fully recognize that they must talk about risks, and BMT is a most dangerous proposition.  With bone marrow transplant, they take you to the edge of death, and hopefully keep you on this side of it.  Knowing this is one thing.  Hearing it spoken aloud is quite another.

I stepped out last evening with my sister to vent and grab a bite to eat.  After relaying the details of the oncology meeting, I shared my HONY story with her and the electronic breadcrumbs that I have been getting this week.  I am not the sort of person that goes looking for images of the Virgin Mary in a potato chip, but this feels somehow comforting. Laurie pointed out that being comforted is never a bad thing, as we walked back to the hospital together.

I went online to wind down before going to sleep to the sound of IV pumps and hospital noise.  I found another "like" on my notifications and smiled in the darkened room thinking about the ultimate survivor and the breadcrumbs from God.  Then I scrolled down to see a new HONY post about cancer.  The photo was of a man at a baseball game. Caption:

“I’m trying to beat cancer for the fifth time. The first time was in 1997, and the doctor told me that I’d only live for six months. I’ve had it in my armpit, my knee, my back, and twice in my groin. Life keeps throwing me curveballs. I keep hitting them.”

I found further encouragement in this post, on a site that is not generally about cancer and could have just as easily shown a fun photo of a toddler: "Today's micro fashion." I scrolled down, reading some of the comments and soon came upon the photo of the man in the wheelchair who I had been talking about only an hour earlier. The person who posted the photo said: "You should talk to this guy."


I slept well.

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.

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.

'Mayberry' no more

Yesterday was Brent's 15th birthday.  I looked at him with bewilderment, like so many other mothers do as their children morph into adults, right under their nose.  I remembered his birthday three years earlier, as his hair fell out at the beginning of his osteosarcoma treatment and as I worried about our collective future.  Today, we have much to celebrate and so much to be grateful for.


Along with being the beginning of 'birthday season' in our house, September is pediatric cancer awareness month.  Add this to the beginning of school chaos and you can see that we have certainly been hopping. But in stark contrast to our fall of three years ago, it has been a really wonderful sort of busy. 


We are most grateful for the many instances of pediatric cancer being featured over the past month, such as the efforts of Hoda Kotb and the decision by the Cincinnati Bengals to support Devon Still and his young daughter who is currently battling advanced neuroblastoma.  Sharing these stories, featuring children in their cancer struggle is most meaningful, particularly when they also provide opportunities to help fund research.

To cite our own example, a week ago, Brent participated in the annual Flashes of Hope event.  He suited up in a tux and was paired up with James Jones of the Cleveland Cavaliers, walking the runway at Quicken Loans Arena along with other pediatric cancer survivors in front of over 1500 people.  He looked great, very confident in his stride and most outrageously, pulled out his phone and took a selfie on the catwalk. We hooted and howled from our seats.



We have long teased Brent for being Mayberry-like, in stark contrast to Lauren's outgoing "Hollywood" personality. It appears that we are going to have to amend our nickname...perhaps "Broadway" would be more fitting for Brent now, reflecting his affection for New York City.


The audience watched a video in which Alex and some other siblings describe the impact of cancer on their lives.  They may have been unaffected physically, but certainly have not been spared emotionally. 


http://vimeo.com/107935878


Then Dan and I watched the bidding, as the research dollars were collected.  I am unable to articulate how meaningful it is to witness the generosity of Dan Gilbert, of the Cavaliers, of Clevelanders in general.  I believe that the bad news too often gets the attention.  I was reminded again of how wonderfully kind people can be, whether we choose to focus on it or not.  


I volunteer at University Hospitals, and on Monday was asked by a woman how it was that I came to be involved.  I shared the basic outline of our story, of our four pediatric cancers.  She looked at me wide-eyed, fairly horrified, and asked,"How do you deal with it?"  I assured her that the kids were doing fine, melanoma treatment withstanding.  Really.  Truly.


But today, thinking about it, I know that the better answer lies in having faith.  I really, really struggle with the notion that it is all beyond my control, which I openly acknowledge.  But every morning, to bolster my faith, I read about the latest research, about all cancers, not knowing what cancer I might need to understand next.  I know that this may seem odd, but I find great comfort in the knowledge that scientists, physicians and researchers are all working hard to figure out a solution.  It reassures me, and helps me to cope. 


It gives me hope.


So, last week, in a magical evening, over one million dollars was raised via Flashes of Hope, dollars that will fund research, and by extension, helped to support my faith.  Because on this evening, I saw my son who lost his right pelvis to cancer, and who was supposed to lose that leg altogether, walk confidently across the stage, happy and healthy.  It was a celebration.  An affirmation.  A gift from God and an answer to countless prayers.


While I know that we are not necessarily done with cancer, we have been enormously blessed to get to this point.  I am both grateful and hopeful.


The gold ribbons have been exchanged for pink ones now, as breast cancer gets center stage for a month. But for us, every month is about pediatric cancer.




Many thanks to Flashes of Hope, Allison Clarke and the Cleveland Cavaliers for providing such a terrific night, supporting children with cancer as well as the researchers that are trying to cure them.