Sunday, January 14, 2018

A world changed

There are thresholds through which you pass in life, events that dominate the landscape enough to define the era.  "When I was in college...."  or  "Before we had children..."  For us, there was a pivotal swing in August of 2011 when Dan and I landed in Rainbow Babies and Children's Hospital, and began to actively fight cancer with our children.  Our lives since then have been a constant battle- sometimes more strategic in nature, sometimes completely brutal.  The scenery would shift, from hospital to hospital. The personnel would change, depending upon the flavor of cancer that we were dealing with.  But we have lived solidly under the umbrella of "after cancer" for six and a half years.

We have devastatingly crossed another threshold, one that will define the remainder of our lives. Brent, who worked incredibly hard and always managed to find his way out of tight spots, succumbed to infection on December 30th in Houston.  He was surrounded by those that he loved. We all returned to Ohio heartbroken, but determined to honor his life, and our love for him. 

So, we begin to mend our hearts, and bind up the empty places in our family. I take on a new identity, one so unnatural and unspeakable, that our language fails to name it.  'Orphan' and 'widow' articulate the loss of parents and spouse. But there is no word to identify a parent who loses a child.  I am a bit lost, literally without words.

For the RamerNation, as in all things, life is complicated by having two children with cancer.  We must continue our efforts with Lauren, who is in active treatment for osteosarcoma.  We cannot simply be still, cocooning ourselves in front of the fire while the snow falls, much as we might want to or as much as our souls might yearn for this. Tomorrow, we return to the hospital, pick up the tools at our disposal, and do our very best for our daughter.  

Brent, along with many others, was hoping for a different outcome. However, because of Brent, and many others, doctors and scientists are discovering better ways of dealing with cancer.  My sincere hope is that the tools become more strategic and less brutal.  But, ever practical, we pick up and use whatever we have around us.  For Lauren, what we have available is some punishing chemo, which carried devastating side effects for Brent. 

I try to remind myself that everyone has their own story.  Lauren is very different from her brother, and perhaps leukemia will not develop in her. Like all parents, we are trying to write our very best story with Lauren, as we did with Brent.  While Brent will not be active in our family for this next part, his experience taught us so much. His example of quiet strength and determination is our standard. His love flows through us all, and spills into everything that we do.

We have set up a page to honor Brent and support research.  You may use the following link to view:

Saturday, December 23, 2017

It is Christmas. We are looking for Miracles.

December is a month filled with preparations and anticipation for everyone.  There are cookie exchanges, packages, cards, holiday parties and every manner of excitement for the end of the year celebration, however you happen to name it.  The Ramers celebrate Christmas, but this year our preparations have been for a very different sort of event.

We have been waiting with diminishing patience and increasing anxiety to learn if the T cells that researchers at MD Anderson collected last month had sufficiently grown.  The call came a little over a week ago, that they were successful.  Chemo would begin on Christmas Eve and the genetically engineered T cells would be administered five days later.

Our preparations and travel arrangements were hastily made, and filled with gratitude because Brent now has circulating blasts.  It becomes a race in AML, to not have a catastrophic event as the disease overtakes the marrow, because it reduces the power of the immune system.  Infection becomes increasingly dangerous. Infection is the catastrophic event we most fear.

The day before we were to fly to Houston, Brent developed a cough.  I held my breath.

Overnight, only hours from our departure, he required more oxygen.  I wanted some for myself.

As the medical transport team arrived before dawn, Brent went into respiratory distress.  Heartbroken and despairing,  I asked that we fly anyway,  knowing that the only way that Brent might live, is if he could get to these cells.  I write this from an ICU in Houston, where Brent battles both leukemia and septic pneumonia. They have sedated and intubated him, giving his body time to fight the infection with the help of strong medicines.

While I knew that we would spend our holiday in the hospital, I did not anticipate that it would look this this.

We are so grateful for our new team of physicians and nurses at MD Anderson who are working hard to help Brent manage his dueling sharks. While still very ill, this is clearly where he needs to be.  Our whole family is now here. He is surrounded by love.

While the path ahead is filled with uncertainty,  I remain ever hopeful.  Perhaps with good reason:

We learned on this day in 2011, that Lauren had a sizable asymptomatic brain tumor. This was devastating news for Dan and me, but 9-year-old Lauren called finding it a 'Christmas Miracle.'  Two years ago, we managed to get Brent home for Christmas, nearly in remission, contrary to every medical expectation.  Last December, we had evidence of a successful skin graft between Alex and Brent, something that has never been accomplished before. This Christmas, we are hoping for another fantastic and improbable gift, better than anything available from Amazon.

I am grateful to be here, listening to the whoosh of the ventilator, waiting for the slow healing.  I have faith that it will come.

The Ramers welcome your prayers and send you our love this Christmas.

Thursday, December 7, 2017

Unexpected and unlikely

I have been thinking a lot about cells.  Particular cells.  Special cells that, not unlike the RamerNation, have taken an exceptionally unusual journey.

The DNA for the cells were created over 20 years ago.  The ancestor cells grew in my son Alex, dividing and carrying on in the most normal of ways. There was no suggestion, for well over a decade, that they would do anything special.  It was assumed that they would live out their time quietly in the suburbs.

Two and a half years ago, some of Alex's cells were scooped up and abruptly transplanted into a foreign war zone, where they tried to establish a new life.  In Brent's body, these cells struggled and fought with the hostile natives, but they quickly became overwhelmed. 

By Thanksgiving of 2015, they were on the verge of capitulation, when another wave of refugee cells arrived from Alex, this time with a great number of mercenary T cells. This influx of special help turned the tide in a remarkable way, beating down the leukemia to undetectable levels.

The conflict continued over then next 18 months, but open hostility was downregulated--perhaps to something more along the lines of aggressive political maneuverings. We watched from afar, really hoping that leukemia was finally behind us.  However, over the past summer, going to clinic with Brent was like reading the international section of the newspaper. As lab reports trickled in, I worried that all was not well in this historically troubled part of the world.

By July, it was clear that violence had broken out again in Brent's body. Leukemia had survived and had gained a foothold.

Brent has seen horrific weaponry most of which kills indiscriminately, the equivalent of using mustard gas (Methotrexate is actually derived from mustard gas-fun fact).  He has undergone surgical sacrifice of large tracts of land and endured a nuclear holocaust (hello, radiation!) We have cut, poisoned and burned Brent in excess, in our efforts to eliminate the bad cells.  Scientists have been focused on problematic cancer cells for so long, always searching for vulnerabilities so that we can better kill cancer with new medicines.

I have been grateful for these efforts, and for this line of research.  The development of these brutal weapons is, in part, how Brent managed to beat osteosarcoma and metastatic melanoma. I often say that it has been an absolute privilege to develop treatment induced AML.  There is no snark found in that statement.

With immunotherapy, however, the focus is actually on these other cells, the good that exists in Brent's body.  Scientists are now studying ways to make what is working--cancer surveillance by the immune system--stronger and better. The traditional approach to cancer has been laser focused on the enemy, in a horrible war of attrition- (kill the cancer faster than you kill the patient). We are only on the cusp of this paradigm change, but it is very exciting and hopeful.

Last month at MD Anderson, we extracted some of those mercenary T cells of Alex's, which have been residing in Brent's body for a while.  We shipped them off to a lab in New Jersey where they will go through special ops training so that they can better identify and eliminate leukemia cells. They will be genetically modified to be focused on CD33, targeting a protein found on the surface of Brent's leukemia.

We are still waiting to hear if the cells have grown, and passed their training program.  They may hail from Alex's body, but they will fight passionately for Brent, their new homeland. We hope to infuse them back into Brent, in Houston, before Christmas.

Waiting for news of the cells is exceptionally difficult.  While many people hate a war analogy for cancer, I feel like a viewing of Dunkirk might be an encouragement to me about now.  I have often found inspiration in how Britain as a nation, survived such uncertainty and peril.  They were tenacious, and at times unconventional. 

Like Alex's cells, we began our family without fanfare, never suspecting that we would do anything unusual. I thought I would be quietly gardening in the suburbs, raising my children in the most ordinary way. I was not remotely ambitious, but always thought that my contribution to the world would be to raise extraordinary children with Dan.

I never imagined this, when I hoped that they would be extraordinary. But I rather think that they are.

We welcome your prayers for our family.

Tuesday, October 31, 2017

A less traveled road

I spent most of September and a warm October in the hospital with Lauren and Brent.  I would see large families visiting Rainbow Babies and Children's Hospital on the weekends, sometimes providing improbable visuals: Amish men with their wide brimmed hats and distinctive beards walking behind a group of Muslim girls in full black burka. Witnessing these unlikely neighbors reminded me that pediatric cancer recognizes no boundaries.

While there is great focus on disparity, discord and discrimination between cultures, cancer is the great unifier.  We parents, regardless of any other differences, desperately want the same thing for our children.  Within the cocooned isolation of the oncology unit, we hold on to each other and to hope. We may pray in varied ways, but each of us utters the identical prayer.  Please bring health to my child.

The world, as presented in the media is a clanging ugly noise, something that is piped in via the television found in the nutrition room.  I generally turn it off, preferring the quieter expressions of love and kindness that we experience every single day.

While writing this, lyrics from some other lifetime, were called to my mind.

We share the same biology 
Regardless of ideology 
Believe me when I say to you, 
I hope the Russians love their children too

I enjoyed my occasional days at home when I could to get Olivia on the bus. Upon waking, Olivia would always roll over to sleepily greet the sunrise, declaring its beauty and promise.  This morning when I woke her for school, it was dark outside, and cold.  Her cheer and enthusiasm are blessedly unwavering.

We return to warmer climate next week. Brent will formally enter a clinical trial at MD Anderson in Houston for his relapsed AML, a research study that just began recruiting in mid August, only a month before we sought options there.

I picked Lauren up after a rare day without chemo, one that permitted her to attend class.  We chatted over lunch about our family and the notion that "to whom much is given, much is expected."  The Ramers have been given so much. While we have been given far too much cancer in my opinion, we are also loved and supported in ways I never could have imagined. Lauren and I agreed that we each have a talent, and we should use it in service to others.

My daughter is comfortable speaking publicly and uses her voice to help the adolescent cancer community. Brent, she pointed out, has knack for getting out of incredibly tight spots. His talent seems to be providing Proof of Concept to enterprising folks in medicine, like the surgeon who successfully grafted skin from Alex onto Brent last November.

While I cannot deny the truth in this, I would much prefer that he take up juggling.

I reminded Lauren that I have been following developments in immunotherapy for years.  Emily Whitehead was a name I knew long before Brent had leukemia.  Her success with Car-T had dramatically changed the treatment options in ALL.  Reading about her and the brilliant researchers at Children's Hospital of Philadelphia brought me hope. I thought that using the immune system could transform all of cancer treatments, particularly for folks with LFS because it does not rely on our defective P53 function, as chemotherapy and radiation do.  I even said back in 2015 when Brent first developed leukemia, knowing that Car-T was still limited to CD19 /ALL, that I would gladly stand in line if a CAR-T trial for AML were available.

We now find ourselves next in that line for an early phase I trial for CD-33 Car-T to treat his relapsed AML.

I wonder sometimes if I unknowingly made a bargain with God. I alternate in my responses.  Should I be grateful about this, terrified, or completely pissed off?  I always lean toward gratitude, but in the interest of honesty, have to reveal my conflicting emotions. Faith, I have always said, is hard.

Our home smells of wood smoke and spiced cider when we return. At Thanksgiving, for three consecutive years now, Brent will attempt something unproven.  His daring is fueled by a mix of desperation and courage. As his mother, I choose to focus on his courage and his grace.

I wish we were simply taking a less traveled road, but Brent consistently steps into the wilderness with a medical machete, cutting a path for others to follow.

We welcome your prayers, however you form them.


Saturday, September 16, 2017

Gratitude for support, balanced by a hunger to do better

I nearly forgot to post a link to the Hyundai Hope on Wheels clip that Lauren did. We shared this on FaceBook last week, but everyone is not on social media. As we travel back from Houston, where we have been shopping for clinical trials, I can finally process and put this into context.

A few weeks ago, while Lauren was doing chemo, they asked if she would be willing to share about her experience with pediatric cancer. This is the video that they put together. 

Lauren really enjoyed the ceremony held at Rainbow Babies and Children’s Hospitals, where folks from Hyundai presented one of those giant checks for research.  Lauren, along with other pediatric cancer patients, were encouraged to put colorful handprints on the white car and the researcher's white lab coat.  It was a day to bring together researchers, donors and the patients that they hope to serve.

Lauren joked with Dr. Letterio that she always wanted one of those giant oversized checks, even  one written for just $5, and imagined how funny it would be to cash it in at the bank.  Dr. Letterio tucked this away, and a few days later sent the ceremonial research check from Hyundai to her hospital room while she was sacked out from chemo.  You will notice that there are quite a few zeros after the five.  We are so grateful for the generosity of this organization.

Lauren has since been talking with Kathy, the art therapist at Rainbow  Babies and Children’s Hospital on how to transform this check into a fun piece of art. Lauren wants to make it collaborative work, getting patients on the oncology floor to interact and to have the art project from these young people serve as a thank you to Hyundai.  While isolated in the hospital, it is good for the patients to connect with one another.  The art would also serve as a reminder to young people who might not have been at the event, that they do not battle this alone—donors and researcher are trying to figure out better ways to address cancer. 

I am proud of how she is forwarding several goals at once. 

Research matters, a truth that has never been more evident for our family than right now.  Brent is most fortunate that he turns 18 in a few weeks, because the clinical trials that are most suitable for his relapsed leukemia are not found in pediatrics, but rather on the adult side.  If he were closer to Lauren’s age (nearly 15), his challenges would not be limited to finding how to best deal with a tenacious cancer, but in finding appropriate trials that he would qualify for, not because of safety issues related to organ function or disease load, but solely because of how old he is.

Age discrimination takes on a whole new meaning, if you are a teenager with cancer.  

Most look forward to when their teen becomes independent and goes off to college. For years, I have been anxious for Brent to become an adult for a very different reason: so that these adult treatment opportunities would finally be available for him.  If we, as a nation, are content to spend less than 4% of the NCI budget on pediatric cancer research (which is wholly inadequate) then the very least that we could do is provide these underrepresented patients in the Adolescent and Young Adult (AYA) population access to adult clinical trials.

It has long been a double whammy for teens, being first neglected in terms of dedicated research dollars and then being locked out of adult trials, kids with their noses pressed against the glass. 

Obviously, our main goal should be to increase pediatric and AYA funding.  Our family supports various foundations like Kick-it, Alex’s Lemonade Stand and St. Baldricks’s, to supplement the paltry federal spending.  I have spoken to lawmakers about the needs of families like ours, and the spillover benefit of this research for the population at large, so that the federal allocation for pediatric research might improve.  (Alas, children do not vote.)

But a secondary objective should be to increase access to cutting edge therapies by lowering the age restrictions on clinical trials. Will Brent be significantly different, medically speaking, a month from now, when he reaches his legal majority, at 18?  Actually, with an aggressive cancer, a month could make a huge difference.  But in every other way of medically evaluating him, a birthday milestone is completely arbitrary. 

With a swipe of the pen, and an extra page of consent in the bundle of forms (for parents to sign), treatment options could open up for teenagers with cancer.  It would not cost an additional research dime.  My family does not need this regulatory change at the moment, but other families who are out of options do.  And unfortunately, even more families will find themselves frustrated by clinical trials that are tantalizingly close for their child, yet inaccessible merely for how they are written and approved by FDA and IRB.   

We thank you for your continual support over the years, for buying T-shirts, supporting various fundraisers and sending donations to cancer research organizations on our behalf, like the Cancer Research Institute which forwards research in immunotherapy. It has been so meaningful to us. 

The Ramers will soon be taking on a new role in supporting research.  Brent will be enrolling in an adult clinical trial when a slot opens.  We recognize our good fortune, that he is permitted to queue up.  Hopefully, there will be a greater recognition of this unmet need, and more pediatric trials will be funded, and adult trials will be written in an age expanded and more inclusive way.

Thursday, September 7, 2017

The month of September

It is September, the month where we "Go for Gold" in honor of pediatric cancer.  I write this from my daughter's hospital room as methotrexate drips in the darkness, the same yellow poison that we pumped into my son Brent nearly six years ago.  We are giving Lauren the identical chemotherapy regimen that caused Brent's leukemia. 

It sounds like madness, but we have no other option.

It is September, and my brave, bald daughter sleeps fitfully, frequently waking to ask for a basin, or medicines to help with the nausea.  I am not sleeping, partially because of these requests, but mostly because I know that I should be writing something.  It is September, after all.

I am not sure how to describe how we manage as a family, having two children with active cancer. Lauren is being treated for high grade osteosarcoma.  Brent relapsed over the summer with his treatment induced leukemia.  The RamerNation is shopping for clinical trials. We are enormously grateful for the support of our community.

We have said for many years, that research matters.  We have lamented that only 4% of federal spending at NCI is dedicated to pediatrics.  It is not nearly enough.  We have worked to support pediatric cancer research, raising funds for supplemental grants through non-profits like Kick-It, St. Baldrick's and Alex's Lemonade Stand.  We want to help other families who face a cancer diagnosis in their child, understanding how difficult it is to live with fear and uncertainty.  The Ramers also know the devastating side effects of a 'successful treatment' including organ damage and secondary malignancy.  We have worked to try to find a better way.

Research does indeed matter, and I concede and celebrate that some progress is being made. However, despite our varied efforts, there are currently no alternatives for treating Lauren's osteosarcoma, aside from toxic drugs dosed at levels sufficient to kill her without very careful management.  Brent needs a clinical trial for his leukemia, specifically a cellular therapy.  This alludes to the bit of progress that I mentioned.  We will travel next week to MD Anderson Cancer Center in Houston, a literal disaster zone, in the wake of a hurricane.

It is all madness.

Our difficult reality is more striking in September, when the Ramers typically talk about pediatric cancer and post yellow ribbons.  We usually visit a local field filled with golden sunflowers- a blooming awareness campaign along the highway sponsored by Prayers from Maria, a foundation that supports pediatric brain tumor research.  This year, regrettably, we are far too busy for such things.

I often say that God wouldn't give us so much cancer if we were not supposed to do something about it. I would certainly prefer to support these fundraising efforts than to participate directly in clinical trials.  God, apparently, has other ideas for us.  So, next week we will push back Lauren's chemotherapy treatment a bit so that we can travel to MD Anderson and speak to researchers about both kids.

I try not to think about what our life 'ought to' include, like being able to watch Lauren in the marching band on Friday nights, or seeing her run in cross country meets.  I try not to grieve senior activities and graduation for Brent, recognizing instead that his mental toughness is immeasurable, his endurance remarkable and his overall experience has been nothing that can be taught or prepared for in an academic setting. I truly try to focus on the things that we have been given: prayers, love and support from unexpected places, compassionate care from our team here at Rainbow, family time, even in a hospital.

We currently have the opportunity to speak with folks who are developing cutting edge therapies, a gift that I do not fail to recognize.  My hope is that the best and the brightest have good things to offer us in the month of September.  

I watch my daughter sleep in the dim light, listening to the hospital sounds, the familiar beeps and yellow drips. The scars on Lauren's body increase in number each year, but her sweet soul remains intact.  For this, I am grateful.

We welcome your prayers for our family.

Saturday, August 5, 2017

Someday is today.

Two weeks ago, my sister asked me to ride with her.  We took a familiar route, one that we had travelled many times in the months that we trained. It was a beautiful day, and the first time since our race in June that I had even been on a bike.

"Laurie, we rode our bikes for 100 miles."

I repeated this statement, for the literal meaning, which was kind of astonishing to me on its own merit. 100 hilly miles is no small thing.  But it represented something far more significant and symbolic: the medical hills and distance that we have travelled as a family.  I find myself in a bewildering place.

Since that beautiful New York day, a mere seven weeks ago, my daughter Lauren has had three surgeries and a confirmed diagnosis of extraskeletal osteosarcoma. As we searched for therapy options that might spare her the risk of treatment induced leukemia, Brent was found to have AML.  This devastating relapse was confirmed the night before Lauren began the exact protocol that caused Brent's blood cancer.  Without any better options, we nonetheless began pumping Lauren with the same poisoned cocktail that we fed to Brent six years ago. 

Watching this infusion made me just as nauseous as the cisplatin made my daughter.

There aren't words to describe how busy, nor mentally and emotionally taxing these weeks in hospital have been. 

Each of the kids prepared for treatment, dyeing their hair in anticipation of losing it: Lauren donning bright purple and Brent going with sky blue. Lauren worked with her tutor, finishing all of next years math while she waited for chemo to begin and healed from surgery.  Lauren shopped for hospital gear. Brent had a get-together with friends. Cancer has become somewhat normalized in our home, which is probably good, but is also kind of disturbing.

We have had several admissions with both of them in at the same time, often on separate units and in different buildings. This has been completely overwhelming.

My sister had urged me to bike with her, in order to clear my head.  As we passed familiar barns and climbed elevations that we had trained on dozens of times before, I would pointedly repeat, "We rode our bikes for 100 miles." 

My sister would affirm this statement.  "Yes, Ann.  Yes, you have. You have done this.  And you will again."

While the specific challenges of finding appropriate treatment options are new, the process of 'figuring it out' is not.  We found a way to graft skin from Alex to Brent, relentlessly asking folks to consider our unique problem.  Dan reminds me of how we initially and repeatedly have been told 'no' over the course of the past six years and urges me to keep asking. It is often about asking the right people. Bold, creative and courageous people, in the right specialty. We have been blessed to have so many cross our path, just when we needed them.

I have worried and doubted about how this will happen again, the RamerNation pulling another rabbit out of a hat. My son is determined, so this inspires me to get busy looking. My daughter is strong, which bolsters my faith.  My husband encourages me to keep asking, learning and advocating.  Our family is simply better together. The combination is synergetic. We are much stronger than the sum of our parts.

As Brent finishes his bridge therapy this weekend, after a gnarly detour through PICU, I am thinking about our next steps. We will look in earnest for trials, particularly immunotherapy options.

I was biking less than two months ago to support Cancer Research Institute, with the theory that immunotherapy might be something that my kids would someday need. Someday certainly came crashing in on the heels of that ride.

Someday is today

We welcome your prayers for our family.