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.

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.

Celebrating champions and building teams

Making lemonade out of cancelled plans to Chicago, Dan, Alex and I went downtown for the Cav’s Championship parade last Wednesday.  Oddly enough, we found traffic in Cleveland to be manageable, parked on the street for free, and walked a dozen blocks to Mall B where the rally was scheduled. It was a beautiful day, although I am not sure what sort of adverse weather could have dampened the spirits of those who came to witness and celebrate the end of 'The Drought.'  

There was no cell reception with 1.3 million people downtown. The three of us sat together on the lawn, enjoyed the music and video clips displayed on the giant screens, chatted, and napped in the sunshine throughout the afternoon-although this last part was a painful mistake that I did not discover until later. I have never been in a crowd so large and yet so courteous and patient. The parade was exceptionally slow, as throngs of people hindered its progress.  The oft repeated line by the announcers at the rally was “Your champions will be here soon.”

The RamerNation are pro’s at waiting.  We wait for pathology results that have profound impact on the form of both our immediate and distant future. We have waited for weeks in hospital in hopes of health returning.  We wait as clinical trials are being developed. In many regards, Clevelanders can appreciate this level of patience, having waited fifty two years for this celebration.  I suppose that in this context, a few more hours for these folks, seemed of little consequence.  

After a few words, presentations and proclamations by politicians, Dan Gilbert, the owner of the Cavs, spoke of his gratitude and admiration for the folks who work with him in the organization.  His had the vision of bringing a championship to the city 11 years ago, and made a financial commitment to this end.

Lebron James, given the opportunity to speak ‘from the heart’, chose to warmly and affectionately honor each of his teammates for their contribution and dedication to the team: Kevin Love, for sacrificing prestige in Minnesota, Delly, remarkable for overcoming limitations and expectations, James Jones, never complaining about playing less than he was accustomed to and always being ready when his number was called.  The list went on, personal and professional, heaping praise and spreading love all around.

Some might debate if Lebron is the best player of this generation, but he was the unquestioned MVP of the finals, leading the series in average points, rebounds, assists, steals and blocks. It was remarkable how he mentioned himself only in relation to the importance of the contributions of others. He epitomized leadership, humility and teamwork.   

While he spoke conversationally, and some would criticize, a bit too informally with regard to language, I found it to be refreshingly authentic in a time when images are cultivated or sculpted for the public in social media. Lebron's salty words seemed far less significant to me, than the love that he liberally poured over everyone and everything.

We left with the smiling crowds, who glowed from sun exposure and a shift in mentality.  We have shed a burden as a city with this bit of success. Our future seems brighter, more optimistic. It is far more than sport.  It is the affirmation of something greater and you could absolutely feel the change in that crowd.  

As we walked back, I thought about the team building that was done with the Cavs.  Dan Gilbert had a vision, and put significant resources behind that vision, assembling a combination of talent that could succeed. Lebron James clearly displays exceptional skill and is a force of will that alters game outcomes, but he was not enough. Over time, players filled around him who could compliment his strengths, adjust and who possessed a willingness to do whatever it took for the team to succeed.  The city of Cleveland has benefited, and the fans came out en-mass to show their gratitude.

I always carry things over to cancer, the prism that some might argue distorts my perspective, but unarguably has had a profound impact on our lives. I thought that like the Cav's, the Cancer Moonshot requires this same level of teamwork in approach a daunting challenge.  We are currently witnessing the assembly of just such a team.

In January, President Obama called for a Cancer Moonshot, and put Vice President Biden in charge of it, making all of the resources of the federal government available for this mission. Joe Biden has both the vision and the personal motivation:  He lost his son Beau to a brain tumor. Since this announcement, he has been assembling panels to address the things that hinder progress in cancer.  I am encouraged with the breadth and depth of these inquiries, rather than simply pouring funds into broken system.  Biden is examining the systems and making structural changes to help research, always asking those involved what is needed.

And they are recruiting the best talent from across the country to fill these blue ribbon panels.

Sean Parker made his money from FaceBook and Napster.  He recently donated $250 million to support cancer research. Last week, I learned that his collaborative group, some who are serving on blue ribbon panels, obtained NIH approval for CRISPR trials (gene editing technology) in humans,  using genetically engineered T cells to fight cancer, essentially combining two of the most promising advances in cancer treatment (immunotherapy and genetic engineering). This is more exciting for me read about, than watching Lebron James get a triple double.

I have long followed the research of researcher Jim Allison, who, like Matthew Delavadova, worked diligently for years despite the naysayers. Lebron praised Delly's dedication, tenaciousness and his deafness to criticism. "That is a guy who never cared that some guys say 'Delly's not fast enough, Delly's not strong enough, Delly can't shoot well enough. Delly's not an NBA player.' Well guess what? Delly is a champion."   Like Delly, Jim Allison overcame conventional wisdom about the role of the immune system in cancer, worked hard, produced a breakthrough therapy, added another pillar to cancer treatment and is now a key player in the Cancer Moonshot.  He is clearly a champion.

Lebron talked about having 'unfinished business' with Mo Williams which they were able to address when Mo returned to Cleveland.  I imagine that with collaboration, researchers whose professional lives have taken them to different institutions will be brought together once again.  I would love for these researchers to mirror this intensity as they finish their work together.

Lebron called out players like Jordan McRae and James Jones who didn't get as much glory, as many shots or much playing time over the season.  But he recognized that their hard work behind the scenes which made the team stronger.  I know that there are countless researchers that work late in their labs, supporting those who sit prominently on the panels. I am grateful for their efforts as well.

Lebron James spoke movingly about the support of the community.  While he did not speak much of how he left Cleveland for a time, he did speak with emotion about how important it was for him to return to this community, to come home. The feeling was mutual. In Cleveland, watch parties sold out while the Cav's were on the road, filling both the empty arena and the outside spaces in record time. I am hopeful that with the upcoming opportunities in cancer, trials fill up just as quickly. 

A week after witnessing the history-making celebration of Cleveland's first national title in over half a century, I was privileged to sit in a much smaller crowd, and listen to Vice President Joe Biden speak about this new team and the game plan- which is hugely promising.

I look forward to this next victory parade with much anticipation.

The crowds will be massive.