Saturday, July 30, 2016

Today is not that day.

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

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

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

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

It is surreal, even typing these words out.

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

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

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

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

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

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

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

Well, then.

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

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

Friday, July 1, 2016

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.