Tuesday, November 15, 2016

The Giving Season

Jack Frost came to our house yesterday, much to Olivia's delight.  The sweatshirts worn in the weekend sunshine as we raked mountains of leaves to the curb had become wholly insufficient. Fall has taken a turn, as the majority of the trees have shed their colors. Only a few retain their vibrant glory which was commonplace two weeks ago.

I walked with Olivia and her friend Maggie on Halloween, dressed as Hermione and Rey.  The ghosts of Elsa and Ana followed me, the princess innocence of last year replaced with more active and powerful characters. Fantasy and magic remain constant, but the fight against evil and the defense of justice have appeared.

The girls are clearly growing up, apparent in their costumes. But I was more haunted by the other memories from last fall, when Brent was so desperately ill with leukemia. Birthday season was mentally challenging, as reminders of last year's relapse continually wormed their way into my thoughts on these special days.

It is now November, the time of year when the Ramers take pieces of Alex and transfer them to Brent in ways that are in conflict with established medical practices. I pointed out to a dear mutant friend that normal people simply call this time of year 'Thanksgiving.'

While part of me feels rather snarky about this truth, it is layered with some wonder and gratitude. After donating bone marrow, then peripheral stem cells, Alex is once again stepping up for his brother and donating an impressive amount of skin to cover the large wound that remains from Brent's summer infection. This graft -this gift- is only possible because of the success of last year's bone marrow transplant.

Alex will arrive tonight from Ann Arbor, setting aside the demands of his first semester of college in order to do what he is uniquely able to do for Brent in the OR.

I have always believed that siblings are the best gift you could give to your child, never quite understanding the common worry about jealousy when a new baby arrived.  When they were only toddlers, I taught our children the mantra, "We are Ramers. We look out for one another."

It would seem that Alex took that tribal chant to heart.  While I am glad for his other accomplishments, his devotion to family is what makes me the proudest. He, quite literally, has Brent's back. 

Like with Elsa and Ana, sibling love is powerful. We fight a cancerous evil like Hermione and Rey, using the magic found in science and medicine, all of it backed with the power of prayer.

We welcome your prayers on Thursday, as we once again dive into uncharted territory.

Tuesday, October 11, 2016

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.

Wednesday, September 7, 2016

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.

Friday, August 26, 2016

Olympic glory and Olympic lessons

Like so many over the past two weeks, our family followed the Olympics, and enjoyed the quadrennial competition, filled with pageantry and drama.

There are easy comparisons between the RamerNation and Olympic athletes. Most obvious is the spectacle seen when you combine extraordinary genetics and tenacity.  Unfortunately, my children's unusual genetic makeup causes them to be champion cancer patients, rather than athletes. However, I would never bet against them in the tenacity department.

We watched as a family as Michael Phelps made history, earning a record number of medals in his fifth Olympic games.  His teammate manufactured some drama, and I just shake my head.  There is enough turmoil in the world without inventing some more.  Unfortunately, this scandal of the Rio Olympics is all that lingers in the headlines after the closing ceremony.  I would much prefer to remember some inspiring moments and focus on the more positive lessons found in the games. 

Expected to win her fourth straight gold medal in sand volleyball, Kerri Walsh found that she and partner April Ross had lost the semi final match. She acknowledged having something of a private temper tantrum as she talked through a sleepless night with her husband, following her first and only Olympic loss. 

She indicated that her funk resolved when she reminded herself that it is a privilege to make an appearance at the games. She examined the match and owned her mistakes. She got back into the tournament refocused. The next day, the American pair demonstrated teamwork, talent and tenacity in what Kerri described as the 'gnarliest' match of her entire life. The two won the Bronze medal, when measured athletically. However, I think that Kerri Walsh earned a Gold in ways that matter far more. She gave a wonderful interview afterwards:

The Ramers are privileged to make an appearance in our 6th Pediatric Cancer Olympics.  I know that this sounds crazy, but it implies that we have qualified, and succeeded in the previous five. I have had moments of anger, moments of despair.  My husband encourages all of us, and my children fight back with equal measure of grit and grace.  I carry gratitude, by the bucket load. 

Thank you, Kerri Walsh.

Perhaps the truest Olympic moment was during the women's 5000 run. Nearing the end of the race, the runner from New Zeeland, Nikki Hamblin and the US runner Abby D'Agostino tripped up in a pack, both landing on the ground. The American was first up, but came back for the woman who was her rival only an instant before. She offered her hand saying, "Get up, get up!  We have to finish this!" 

Moments later, Abby D'Agostino fell again, overwhelmed by her injury.  This time the New Zeelander, Nikki Hamblin stopped and offered encouragement.  Together, the pair finished the race, but long after the rest of the runners in that heat.

Hamblin said in an interview later, "When I look back on Rio 2016, I am not going to remember where I finished, I am not going to remember my time...but I'll always remember that moment."

So will I.

"If I hadn't waited for her or tried to help her I would have been 10 or fifteen seconds quicker and what does that matter?"

It doesn't.

This is the best part of the Olympics, not the medals, but the moments of personal encouragement and connection. Shortly after this event, I received a note in the mail from dear, but geographically distant friends who enclosed their church bulletin, which listed our family on the prayer list. Our friends, our tribe, they encourage us.  They pray for us.  

Together, we rise up.  We hobble our way to glory.

At the close of the games, some may question if our luck is made or found. Clearly a bit of both come into play when you count up the medals for the athletic event.  The same could be said of the Cancer Olympics. 

However, I believe that the truest measure of our worth is not in the finish, but in our conduct during the race. There is enormous power found in kindness offered to those who are discouraged.  I believe in the power of prayer, of the collective goodwill. I believe that the best in us will always outshine the worst. I believe that it is always worth going for Gold.

I know this, because I see it every day, not just every four years.

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.

Monday, June 20, 2016

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.

Thursday, April 21, 2016

Carry on Baggage

The airplane was crowded.

Travel out of Newwark was complicated by a fire in the B terminal the night before and snowfall in the midwest.  I patiently worked my way through the plane, locating my seat by the window.  As I settled in and pulled out my book, the man next to me inquired if I often traveled on American Airlines.  He was looking for a way to plug in his phone.  My companion proved to be quite chatty, unusual in an age when most travelers bury themselves in their electronics. Maybe this interaction was fueled by desperation, stemming from his dead electronic.

My head was full, traveling last minute to surprise Gabby for her birthday.  Her friends had organized a dinner in the city after she met with Intervention Radiology at MSKCC, to map out her next biopsy. She battles stage 4 breast cancer and as a mutant, there was suspicion for lymphoma in addition to metastatic breast cancer. Double primary is a tough road, one that Brent has flirted with. It is a daunting path that other friends of mine have been on, and successfully navigated.  But it is sure nice to have company.  

The mutants came for me in January, when Brent first relapsed.  I am glad to be the friend who shows up for once.  So many of my relationships feel lopsided lately. I always seem to be the one needing support.  Cancer will do this I suppose, but within the mutant community, it somehow feels more balanced.

I tried to have a normal conversation with my fellow traveler, which takes cancer off of the table for a subject.  I found this to be more difficult than I imagined over the two hour flight.  I have not been in 'polite society' for some time.  Answering simple questions has become difficult, and speaking without mentioning cancer now boarders on dishonest.

What brings you to NYC?  "I was visiting a friend for her birthday."  This doesn't begin to explain how wonderful it was to surprise Gabby.  It doesn't address how much I needed to step away from the madness of pediatric hospital life, and pour out my soul to folks that really truly understand. It was a last minute decision which was only possible because my son's PET MRI and bone marrow biopsy were mostly clear.

Do you work?   No.  (My new answer will be:  "I am a project manager working with physicians, researchers and others within the medical industry."  I will be sure to mention that I do this work pro-bono)

Newark/La Guardia/JFK?  It was awkward to indicate that I usually fly into Teeterboro or White Plains (which are small, corporate airports) when I travel to NYC.  I had just indicated that I do not work.  Angel Flight is a wonderful and generous organization that provided our travel for Brent's care at Memorial Sloan Kettering Cancer Center. I was trying not to mention cancer.  I recognized that I was not making sense to this man.

We chatted almost exclusively about parenting, and my oldest son who is going off to college next year.  I became uncomfortably aware that increasingly, it sounded like I had a favorite child. "You have raised a son that you have reason to be proud of."  I am proud of all of my kids, but without mentioning cancer, half of them are really tough to talk about.

As we touched down in Chicago, I turned on my phone.  I saw a posting from a mutant friend who is in a clinical trial in Europe.  She has a similar tumor to the kind that Lauren has.  After being desperately ill last summer, spending over a week in a coma, my friend rallied and entered a clinical trial. She failed on her first one but entered a second trial. I read her happy news, that both of her brain tumors are shrinking.

I looked out the airplane window as we taxied and wept, not just for my friend, but for my daughter. I find comfort reading about new treatments which are more effective and less toxic, hoping to never need them. We are currently looking at a surgical trial for Lauren, using glowing tumor paint, derived from scorpion venom. For real.

They announced that our flight would be delayed for fifteen minutes more on the tarmac. Unable to contain myself any longer, I turned to my new friend Frank and shared the encouraging news from Europe, and in a thumbnail, how it relates to my other children.  As we finally parted ways in the terminal, I hugged this bewildered stranger, who promised to pray for my family.

At the end of the day, I suppose that if I am going to make sense to people at all, I will have to talk about cancer, even in polite company.  Like it or not, it has become part of who I am.

Thursday, February 4, 2016

Small, focused moments

When my boys were just toddlers, I began keeping a journal, each day listing out the blessings and small bits of beauty that I encountered.  It was a way to carve out moments of reflection at a point when I thought that my life was busy. Having three children under the age of five sounds like a restful vacation from my current perspective.  But for years,  I would conscientiously jot down the moments that spoke to me, the bits of joy found in my full, but simple days.

Keeping a gratitude journal was a habit that has fortunately become internalized for me, because I haven't written in one for years now.  My days have become fuller with more children, busier with cancer and more complicated by LFS.  But these coping mechanisms and strategies that I practiced so long ago are fully engrafted.  As I walk though this life, I generally focus on what we are given and seek out the good.

Unfortunately, cancer has made an unwelcome reappearance for the Ramers, with AML returning a few weeks ago to my son Brent's lymph nodes. We learned just yesterday that Lauren's brain tumor might be back.  Neither of these things are easy, nor good.

But I remain aware of the kindness that surrounds us every day: the smiles of strangers in the hospital, the comfort found when we are home together, the encouraging words and support of friends.  I am keenly aware of each these things in the moment that they happen, and I recount them during the times that I struggle.

I focus on the things in our immediate situation that are encouraging.  While still very tired, Brent is feeling better than he has in a long time, free of pain, not requiring transfusions and safer from infection. Lauren has no troubling symptoms and can go to school.  We are all at home, which was not the case for over 200 days spent in the hospital last year.  Being home is nothing that we ever take for granted.

I find strength in hope.  The efforts of scientists and researchers have brought new therapies to cancer at an unprecedented rate.  I read press releases from many institutions each day, knowing that these advances might be directly relevant to our children.  I read about the Cancer Moon Shot, heartened and hopeful about this commitment, even while we learned that Brent had relapsed.

I pray.  For strength, for wisdom, for breadcrumbs of guidance, for health.  I have often been told that God does not give you more than you can handle.  God and I have talked extensively about His rather overblown opinion of us in this regard. There is no sacrilege found here.  I firmly believe that God would not have given me snark, if I wasn't supposed to use it as a coping mechanism.

And while God may have given us a bit more than we can handle on our own, He does send help to us. There are countless individuals and organizations that support families like ours who face such challenges.  We have compassionate physicians and nurses, who I know with absolute certainty, carry our troubles home with them. I recognize that there are more people praying for our family than I could ever imagine. We are not alone.

We each do the best that we can with the tools that we are given.  I try to focus on the blessings we are afforded. In all honesty, I do not always succeed.  However, this would be my best answer to the frequent look of mixed horror and bewilderment that we get from people as they say, "I simply don't know how you do it."

We do it one moment and one choice at a time, just like everyone else. I am determined to live in a spirit of gratitude and love.

This morning, I braided my nearly-eight-year-old daughter's hair and walked her to the bus stop. I listened to her chatter and the sounds of the birds.  I think they were singing spring songs, despite the chill.  It was truly beautiful.  It was enough, in that moment.

We are so very grateful for your prayers.

Friday, January 1, 2016

Beginning anew- Beginning together.

2015 was a harrowing year for the RamerNation. I am most anxious to turn the page, and begin anew.

As half of our family began decorating our home for Christmas one weekend in December, it occurred to me that I didn't have any ornaments stored from over the year.  Whenever we travel or have a special event, my souvenir is always an ornament for the tree.  At the end of the year, we unwrap them, mark the date on them and remember our gift of time together and our blessings as a family. It is a moment of pause, filled with a prayer of gratitude.  

I found no special ornaments in the basket downstairs where I usually stash them. Initially, this was puzzling to me, until I mentally scrolled through the year and realized that we have spent more time in the hospital, than in our home. I neglected to get an ornament while on our whirlwind trip to the White House back in April. It took me a moment to calculate that this trip, in fact, occurred just eight months ago.

Returning to the hospital, I waited to learn if Alex's stem cells would grow in Brent's marrow.  We hoped that the latest round of chemo had knocked down the leukemia that has beat up our son and dominated our attention all year. After relapsing this fall, Brent has gone through a targeted therapy, epigenetic therapy, radiation, more traditional chemotherapy and a second stem cell transplant with an extra dose of fighter T cells from his brother Alex. Things at this time were inexpressibly difficult, even by our standards. 

Along with many others, I prayed fervently that each therapy might work.

The things that I really wanted for Christmas this year are not found on Amazon.  But for my children, I wanted a tangible gift for each of them, something meaningful to represent our family's year long adventure. I sought out the art therapist who kindly gave me some materials to work with in Brent's hospital room.

I wanted to show how none of us has been alone, even as our family has been divided.With different colored wires representing each of us, I twisted them, showing how the Ramers have supported one another, wherever we happened to be.  Beads symbolized our big events for the year: brain surgery, bone marrow transplant (twice) and Olivia's birthday. The wires representing Dan and me crisscrossed back and forth twisting around our children's wires, at home and hospital, hardly touching each other. There is a bead at the bottom, a token for when we all would return home together, which was only the faintest of hopes when I first began the project.

I snorted when I finished, seeing how, quite unintentionally, the ornament seemed to form a double helix. There certainly is irony in this. 

Aside from the irony, there is also beauty, at least in my mind's eye.  We have been challenged beyond imagination, evident in how my sister was not comfortable sharing Lauren's brain tumor with her new coworkers over the summer. She feared that they wouldn't believe that we actually had three of our four children in the hospital within the same month.  

But I would be remiss if I didn't point out that our family has also been unbelievably helped and supported through our protracted struggles, both at Rainbow Babies and Children's Hospital, and at home. We have been prayed for and cared for, by so many people.  This is quite humbling.  We are blessed at long last, to be able to share some good news.  

Both Lauren and Brent begin 2016 with health, which far exceeds expectations.

We are all home, together.