Wednesday, February 14, 2018

Processing a Valentine Memory

Yesterday, a Facebook memory appeared on my feed, the following blog post from 2014.  It rather put me into a funk:

Life-Work Balance for a Stay at Home Mom

I read it over with mixed emotions, remembering how happy Brent and I were with the good orthopedic news in New York, and how quickly that news changed when the pathology call came from University Hospitals.  I recall being concerned at how soon he developed cancer number two...and that metastatic melanoma was nothing to sneeze at.  I didn't realize it at the time, but melanoma was the easiest diagnosis that Brent would face, one that allowed him to get shots at home and attend school.  All things considered, it was a pretty great year.

I feel that re-posting this blog is worthwhile because it still rings true with regard to how Dan makes the kids' lives special, whenever I sort of check out.  Olivia has had many birthdays where I have been in hospital, racing home from one, or medically preoccupied.  Dan is the father that steps in, creates magic and finds joy, particularly when my stores are depleted.  I am incredibly grateful for this. I often tease that I should marry that man. 

The snarky part of me thinks that I could just edit that post, Mad Lib style, leaving blanks for cancer diagnosis, name of hospital and current crisis to be filled in each year, (Lauren managed to escape from Rainbow Babies and Children's Hospital from flu, fever and neutropenia with a full day to spare, in case you are filling in the form.)

However, the better part of me is glad that we managed to focus on the simple but important things over these years: being together and strengthening our bonds as a family. My children have always looked out for one another, both in celebration and in challenge. What brings me most joy, is knowing that I am not the facilitator of their relationships, because they independently look out for one another.  I have always thought that our work as parents is to make ourselves non-essential.

Olivia has been such a blessing in our family, from the very beginning. Today we celebrate the gift of her, with Dan, once again, taking the lead in making her day special. Happy Birthday Olivia!  And Happy Valentines Day!

Friday, January 26, 2018


I sleep restlessly, returning to images that are not dreams so much as rehashed memories of infection, anxiety, and decisions.  I sometimes see my son, silent and sedated in the background.  I am waiting for the true dreams to come, the ones where Brent is featured in an altered story line, like the vision I once had of my father and grandmother in a fictional episode involving an elaborate family dinner at a restaurant and them smiling and waving as they departed in a rag top jeep.  There was warmth and laughter in this visit, a dream that left me smiling and comforted.

After a week of inpatient chemo with Lauren, I began to work my way through the house.  It occurred to me that none of us have really been home much since June, between Lauren's treatment, Brent's trips to Houston and countless unplanned visits to Rainbow.  Alex has been back and forth between Ann Arbor for school and Columbus for his internship.  I recall several times when all six of us were working out of suitcases, Ramers coming and Ramers going.

There are so many things that I have to sort through, medical supplies to dispose of, equipment to return, stacks of papers everywhere.  I used to be incredibly organized, but my dining room should be reported to FEMA. 

Overwhelmed, I dodged the dining room altogether and began to sort through Brent's desk, which seemed far more manageable.  I began with obvious and easy things,  like textbooks that should be returned to the school.  

As I slowly worked through the papers, there were bits of memory that opened up. I found pages of incomprehensible equations in Brent's tiny handwriting from his progress last summer in AP Calculus. He always preferred to focus his efforts on math, even when he was feeling poorly because, "math made sense" and was easy for him.  I flipped through his biology homework and thought that this ought to have been easy for him, given his medical experience and the multitude of explanations of biological processes that were both practical and personally relevant. 

His planner from the 2016-17 school year listed detailed assignments for each day.  I remember my son's determination to attend the first day of school. only a month after being septic with necrotizing fasciitis.  That fall, he carried a portable wound vac pump as he crutched to his classes.  I noticed that the homework entries ended abruptly around the time that Brent had an incredibly painful surgery. I regret consenting to this procedure, one of the few decisions in all of this nonsense that I sincerely wish that I could have back. We worked hard that fall looking for better surgical options. Thankfully, we found them. But Brent never returned to school.

His wallet contained ticket stubs from movies and sporting events that he attended.  It also contained a decent amount of cash.  Brent seldom spent money on himself.  I remember him fretting a year or two ago about not being able to work, as many of his friends did.  Partially, this was because it was another notable difference between the path that his life had put him on, and theirs.  I had told him that he had a different sort of job, important and meaningful work.  I urged him to not worry about money, and assured him that we would buy him whatever he needed.  Brent didn't have specific wants for himself, aside from wanting to be more normal and productive. But he did cite concern about how he would buy birthday and Christmas presents for others.

I found a stack of novels with scraps of paper marking Brent's progress in them.  As a monogamous reader, I am bewildered by folks who have multiple books working at once. I remembered that he struggled with The Great Gatsby, telling me that he disliked all of the characters. I tended to agree with his assessment of them.  Brent's generous soul could not understand shallow or selfish behavior in real life and he found it difficult to immerse himself in a fictional version.  I noted the bookmark, and was rather pleased that he did not spend more of his precious time with unworthy and irredeemable characters.

I scanned a copy of the school newspaper and saw an article featuring one of his closest buddies.  I know that Brent celebrated his friends' athletic success, even while he struggled with his own mobility. He had remarkable friends that he longed to spend more time with. I found a class selection form. He still had his eye on the prize when he relapsed with leukemia.

I opened a composition notebook, one that recounted interesting articles that Brent had read on a variety of subjects:  art, architecture, natural sciences.  One entry described the work of Lin-Manuel Miranda, written long before Hamilton was a smash hit. I turned the page with some regret.  We had always intended to see that production together.

I discarded vials of eye drops and relocated a dozen travel packages of Kleenex, both persistent necessities after chemo and transplant. Traditional cancer treatments certainly take a toll on the body. We chose the best options available, but they often carried devastating side effects. Brent always said that it was worth it.

I found a card from the oncology clinic for Brent's 18th birthday, signed by people who have cared for him a very long time, and not just in the medical sense.  I remember the photos that we took that day. He was happy because Lauren was with us, her bald head covered in henna.

I flipped through a photo album that Brent kept on his desk, a birthday gift from his grandma. It contained happy memories of family gatherings and represented so much love.  I found the scribbles of a working copy of a poem that would become a gift to his other grandmother.  He had debated between haiku and iambic pentameter while he crafted something personal and complimentary.

As I inventoried his desk, the evidence piled up.  I was reminded of the essence of Brent's life, of the people that he loved and how hard he worked to be well for them.  He was always pushing to be his best self while he was with us. He was required to work incredibly hard. 

I hope that the effort of this archaeological dig helps to bring me physical sleep, as well as the dream visits that I so long for: where Brent is happy and whole, his health not a challenge that requires a creative work around, but a detail that recedes in the background.  I am working to focus my waking thoughts on who Brent was, and how he expressed this while he lived, rather than the heartbreak I have felt since he died.

This goal requires so much effort at the moment.  But I am inspired by Brent's example to make the most of what we have been given, even as we watch some of those gifts slip away. I was given a wondrous gift for a time, an extraordinary example of strength, of courage, of determination, of love. 

I am grateful for the experience.

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.