Autumn Awareness and a Nutella Summer

As his nutrition lagged, I prepared protein and calorie laden shakes for Brent.  After drinking these for a while, they had understandably begun to lose their appeal. I remember once gingerly sliding a glass of "calorific goodness" onto the table next him.  I attempted to soften the chore that I placed in front of my son with an enthusiastic and overly cheerful "I love you, Brent!!"   He glanced at the beverage, raised an eyebrow at me and rather than reciprocating the affection, he replied sardonically, "I am aware."  These three words became something of a joke between us.  Lord, I miss his laughter.

September is a month filled with awareness. I could certainly use Brent's same inflection and sarcasm right about now. "Cancer?  I am aware."

The Ramers have long been "Going Gold" for childhood cancer in September, which, conveniently for us, is the same month and color for Sarcoma awareness, a malignancy that we have dealt with three different times in our children.  We can thriftily drape those gold ribbons for double duty.  In addition, the Leukemia Lymphoma Society recently notified me that September is also Blood Cancer awareness month, but I am pretty sure that this would be a red ribbon. Even so, we seem to have a good portion of our cancer awareness bases covered as autumn commences.

I have had trouble writing lately.  My thoughts and feelings are difficult to articulate, and when I do tease them out, I am reluctant to weary the world with them.  Grief is complicated.

Our summer began with a week of sketchy scans in Houston for Lauren.  Her concerned doctors ordered follow up imaging in August (which was found to be blessedly clear.) In the interval, we filled our calendar with as many fun things as we could manage, including a quiet week at the beach.  There is an unspoken urgency in our planning, both to make up for things that we were previously unable to do, and to do them quickly, before we become medically busy again.

Our summertime activities were good of course, but it was kind of like enjoying Nutella between moldy slices of bread, which is hard to stomach at times. On the other hand, if you all you have is moldy bread, slathering it in Nutella is definitely the way to go. 

In addition to some purely recreational activities, I recognize the luxury found in having time for advocacy, and the chance to bring about positive changes.  Lauren has lent her voice to organizations that she trusts and believes in: Kick It, which is now a part of Alex's Lemonade Stand Foundation, Flying Horse Farms, Teen Cancer America, Flashes of Hope.  She has spoken with folks at Rainbow Babies and Children's Hospital about partnering with them in order to make things better for teens with cancer.

In addition to doing similar work at Rainbow, I have been reaching out to national advocacy groups in order to help shape policy at FDA and NCI.  Whenever I think about how I might make it better for Lauren with her next cancer, I return to the arbitrary wait that Brent was forced to endure.  Despite relapsing in early July, he had to delay until after his 18th birthday in October to queue up for the adult CAR-T clinical trial.  He was not able to have his cells collected until mid November.  The next six weeks, spent waiting for the cells to be modified and expanded, were excruciating.  We helplessly watched as Brent got sicker and sicker. As tenacious as my son was, both the disease and the system were stacked against him. 

Lauren will be 16 in a few weeks.  I am keenly aware of this happy September event, but recognize that it might not be sufficient to her needs.  I would never wish away this time as she returns to deliciously normal high school experiences, but we know that lot can happen medically in two years. I read every day about promising adult trials, for every type of cancer. While I sincerely hope that Lauren never needs them, the fact that she is barred from until she turns 18, this absolutely haunts me.

The Ramers interviewed with a local television station back in April (Alex was not there--off studying in Australia) Fox 8 began airing the piece last week to promote their annual charity walk/run.  The 2018 Fox Trot on Saturday, September 8th will benefit Alex's Lemonade Stand Foundation. (Come on out!)

I am hoping that by sharing our story, we might encourage folks to attend the event, which raises awareness and funds for pediatric cancer research.  But also, I hope it increases awareness about how adolescents are excluded from participation in adult clinical trials, an entirely arbitrary limitation that has enormous consequences, as we have experienced.  I hope that by sharing our difficulty, we can help to change this policy.

Here is a link to the piece: Fox 8 News Story

2018 Fox 8 Fox Trot
Saturday, Sept 8
Rock Hall Plaza
7am   Race Day Registration
8am   1 Mile Walk
9am   5K Run

REGISTER HERE

If you cannot attend the race, but wanted to support ALSF, here is a link to Brent's Obituary page:

Forever RamerNation

Thank you always for your kindness and support.

Blurred lines

I recently applied for a job at the FDA, one that I never dreamed that I would want. In truth, it is a position that I probably will not get. But the Ramers try not worry about odds, and just go for it. The application asked about my advocacy experience.

My first thought was "Damn, I just had plans to go to Washington DC for that pediatric cancer rally via Truth 365 with Lauren for her birthday." Truth 365 is an advocacy group that works to change the travesty found in only 4% of the NCI research budget going to pediatrics.  I do recognize that this trip might sound like a crappy gift for the average fourteen year old girl.  The only thing crappier? That I stood Lauren up for her birthday cancer rally because Brent had surgery and a five day admission to the hospital.

It was a stellar weekend, all the way around.

But, back to my application.  I tried to remember official ways that I have represented the RamerNation.  It occurs to me that our core community is really hard to identify. Is it found in organizations that support pediatric cancer research, like Flashes of Hope or Alex's Lemonade Stand? Should I continue with non-profits focused our genetic problem, like Living LFS? Should my effort be directed toward organizations serving people with specific cancers that we have experience with, like the Leukemia and Lymphoma Society or Be The Match? The Sarcoma Alliance? Perhaps a more general cancer organization like Stand Up to Cancer, or the American Cancer Society would be more appropriate because apparently, the Ramers have an 'equal opportunity' approach when it comes to developing malignancies. But I also serve on Family Advisory Council at Rainbow Babies and Children's Hospital to address the more immediate practicalities of hospital living, which has nothing to do with cancer whatsoever.

While all of these relate to some facet of our identity and each addresses issues that we care deeply about, no single organization is adequate to represent our family's needs in total.  No official group has a platform sufficient for all that I have to say. Like an awkward teen, I joined a bunch of cancer clubs, trying to find where I best fit, and where I might be a clear voice for my children.

Rather than finding my place in a chorus, I find that I am more suited to singing solo.

I sought out our elected officials while in Washington DC in May, to speak about how children with limited treatment options ought to have access to adult clinical trials. I didn't represent any organization officially.  I was just a mom, sharing our personal experience, and our needs.

I recently attended Cancer Research Institute's Patient Summit in NYC, dedicated to immunotherapy, something that I have been following with great interest for years. Researchers are developing safer and increasingly more effective approaches to cancer, harnessing the immune system to treat various malignancies. Traditional chemotherapy and radiation are genotoxic.  With LFS, we have rather questionable DNA to begin with and don't need to add insult to that injury.  I spoke with researchers, of course mentioning LFS, the array of diagnoses that the RamerNation has faced, as well as the potential of immunotherapy for children. Advocacy lines in these situations can seem blurred.

A few days later, I went with my friend to her oncology appointment at Memorial Sloan Kettering, and witnessed in someone else how the lines become blurred for the greater good. Gabby advocated for herself as her treatment plan was sorted out, for her local community as changes in hospital formulary were enacted because of her efforts, and for the overall LFS community as her physician outlined a potential research study for early detection of cancer. This all occurred quite informally, while Gabby sat on an exam table in a hospital gown. As she talked with her oncologist, who is an influential doctor in an influential institution, I saw her passion, and heard her speak for our community, echoing a sentiment that we have held privately for years. "If you fix mutants, you fix cancer."

It was powerful, but nothing that you can easily put on a resume.

Lucky for me, I don't actually need a resume for the position that I currently have: I advocate for my children and for the various communities that they belong to.  Advocacy doesn't require rallies, titles or fanfare. Like Gabby and so many folks, I just see what would be helpful, and talk with those who could make these things happen.

Being the underdog

We live in northeast Ohio.

While this might not seem significant to most, beyond noting that winter can be long and brutal,  there is a soul crushing pattern in sport that has lasted for over half a century.   We have slogged through decades of mediocrity only to have a few shining moments of hope, the dashing of which can be reduced to a handful of defining words: 'The Shot," "The Drive," "The Fumble."  Even in the off season, when LeBron James took the opportunity to play elsewhere, the blow was dubbed "The Decision."  

While some think that there is a pessimism or fatalism that comes with following sport in Cleveland,  I notice a self-depreciating realism in it.  A popular shirt around here reads: "Just One Before I Die!" Snark, with an undertone of truth, and a hint of desperation. 

Last year, Brent was facing bone marrow transplant as the Cav's entered the postseason. We watched the games as a family, wishing good things for the city and following players that Brent and Lauren had met through Flashes of Hope.

In June,  I remember things being pretty dicey for the RamerNation, between Lauren's brain surgery and Brent trying desperately to get to transplant.  While I vaguely remember that Cleveland lost in the NBA finals, my attention was clearly elsewhere.  It was disappointing for Brent, having so many of our players injured.  For me however, it was not radically different from the long tradition of Cleveland-could-have-beens.

Bone marrow transplant in July brought only fleeting success: Brent relapsed in September.  By Thanksgiving, Brent was desperately ill, with heavy disease burden, transfusion dependent, and completely vulnerable to infection.  We had an exceptionally difficult meeting with his team of doctors, in which Brent selected the most aggressive but unproven treatment, one fraught with possibility for complications and deemed unlikely to succeed.  But it at least offered a slim chance at coming home. 

Against the odds, we celebrated Christmas full of joy, at home, with renewed hope.  

By January, Brent had another relapse, which brought crushing despair. In February, Lauren appeared to have tumor regrowth as well, so we got busy making plans.  With limited options, Brent again selected an aggressive treatment, one that was completely unproven, and as we were told, unlikely to work.  

On Mother's Day,  we received the fantastic news that Lauren had a stable brain MRI and Brent had achieved another improbable remission.  I do not assume that is the end of our challenges, but it is a victory, albeit a tenuous one.

We have been thoroughly enjoying the basketball postseason this year.  As Cleveland swept Detroit and Atlanta,  I said that I didn't need any series to be close.  Boring,  I have often said, is beautiful.    This applies both to sport and to health.  

However, the Cavaliers ended up with a daunting challenge, one that was drummed into our heads over the past week: no NBA team in history has ever come back from a 3-1 deficit in the finals.  I wanted to believe that just because it hadn't been done, didn't mean that it couldn't be done.  For me, the parallels are pretty obvious. 

Against all odds, The Cleveland Cavaliers defied the naysayers, ended 'The Drought" and brought home the NBA title in spectacular fashion, winning in the last seconds of game seven on the road.  The city celebrates tonight.  

The RamerNation witnessed this together. 

I watched, overwhelmed in the aftermath, while LeBron tearfully expressed his feelings on the court. "I gave everything that I had.  I poured my heart, my blood, my sweat my tears into this game and, against all odds. Against all odds--  I don't know why we want to take the hardest road. I don't know why the Man Above gives me the hardest road, but the Big Man Above don't put you in a situation that you cannot handle. And I just kept that same positive attitude, like, instead of saying 'Why me?' I was saying, 'This is what He wants me to do.' Cleveland, this is for you! I am home!"

Hope rises, once again.  I am a Clevelander, after all.  And if the Cav's can do what has never been done before, perhaps we might as well. Basketball may be just a game to some, but for us, this was an inspiring and transcendent performance, which defied conventional wisdom and previous experience. 

I will always cheer for the underdog, who finds so much stacked against them, because we are that underdog on most days. We are working hard, fighting our way back, trying to extend the series.

It can be done. 

Welcome home.

'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.