Monday, May 14, 2018

Being Auntie

This weekend, I celebrated being an Auntie, after a long hiatus.

I was struggling with the thought of facing Mother's Day, having just lost my son at Christmastime.  I was daunted by a public celebration of motherhood, considering that this rather significant aspect of my identity had so recently been damaged, and irrevocably altered.

I was pretty sure that I was not going to feel comfortable or complete as a mother.  So, I elected instead to focus on being Auntie this weekend, driving to Virginia to see my nephew graduate from Randolph College.  I hiked some beautiful terrain with my sister's family, watching the comfortable companionship of her adult sons, as the brothers ambled ahead of us on the wooded trail.  I tried to embrace this unusual gift of time with them, since my nephews both have travel plans that will take them far away.

Despite the beauty all around us, my serenity was hijacked, invaded.  Often, my thoughts became jumbled with emotion as I made simple comparisons between my sister's slightly older children and my own.  I imagined how Brent would have enjoyed a vigorous walk in the forest. The scenery conjured conversations with my son as I tramped along, a blending of poetry and science in my mind. 

Seeing warm affection between my nephews, I reflected on how Alex's closeness to Brent was often defined in medical terms, of HLA matching and their shared blood, tissue and cells.  It was clear to everyone that far more than biology connected them.  I wish that I could have seen their relationship develop and mature in more normal settings. I am happy for Nathan and Eric, who will have a lifetime to share experiences.  In the interest of honestly, I confess that it does make me a bit wistful.

I remember with gratitude, how close my children had been with their cousins before cancer disrupted our lives and our time became more restricted.  Coordinating vacation plans obviously became impossible, but I also watched the incidental time that our families often shared begin to shrink.  The easy, unthinking, spontaneous events like having dinner together after one of the boys soccer games or school events, disappeared altogether.

So much thought and planning would be eventually be required even for local excursions, as all things became complicated by our medical challenges and uncertainty.  I am so grateful for the time and attention that Eric and Nathan devoted to each of their younger cousins over the past seven years, but especially for Brent.  They would come visit him when they were home, for pizza and game night, even in the hospital.  Brent enjoyed hearing about their adventures when he could not have his own.

My weekend was filled with sunshine and glorious weather in Virginia.  I was proud of  Eric's college experience and of his fearlessness as he travels across the world.  But walking the campus, a pleasing contrast of brick and green, I was also haunted by Brent's college dreams which will remain unfulfilled. By extension, there are associated experiences as his mother that I am denied.  Perhaps I feel this more acutely because Brent would have been graduating now and heading off to college, had he not relapsed with leukemia less than a year ago.

Over time, I will somehow reconcile how my son's life, while cut short, was nonetheless complete. I am not even close to understanding this dichotomy.  But I believe that for me, this is where peace will eventually spring from.

Rather than banishing these difficult emotions whenever they arise, I try to acknowledge my disappointments.  And then, I turn to the gifts that I have in front of me, of the family that remains, of the love that remains.  I believe that this part, the love, will never diminish.




 

Monday, April 2, 2018

Easter 2018




The screensaver photo on my phone is from last Easter.  I remember that Brent had blessedly begun regenerating skin after a horrific case of GVHD.  He was weaning aggressively from his narcotics.  We were filled with so much hope.  Alex was home from Ann Arbor and we were all together after a long and stressful couple of months in hospital, most of it spent in the PICU.  Lauren was healthy. Life was good.





This year is quieter.  Brent is not here with us.  Alex is in Australia.  We finally found a moment of grace after the escalating cancer concerns of the past month.  Doctors have determined that Lauren has shockingly relapsed with osteosarcoma, but at least she had some reassuring staging last week.  While we have much work in front of us, sorting out a plan and likely returning to Houston for help with these uncharted waters, we are blessedly starting from a good position.  There is no evidence of disease in Lauren's body at the moment.  God willing, it will remain this way. 



Lauren and I have been listening to the Hamilton soundtrack over the past couple of weeks. I think of Brent when we listen, because he and I had always hoped to see this show together, long before it was a smash hit.  We schemed several times to attend with my dear friend Gabby, when Brent had appointments in NYC at Sloan Kettering. A mutant's calendar is hugely unpredictable, and this uncertainty is only compounded by trying to make social plans with another mutant. The planets never quite aligned. Gabby died last summer of metastatic breast cancer just as Brent relapsed with AML and Lauren was diagnosed with osteo.  I miss her tremendously.
 



Hamilton is tenacious, hardworking, outspoken and ambitious.  He yearns for glory in the revolution, even at the risk of martyrdom. There is a line in the musical where Washington sagely warns him, "Dying is easy, young man. Living is harder."  The truth of this statement echoes and reverberates.

Brent and Gabby are both gone now, remarkable individuals who worked incredibly hard to remain among the living, to share their laughter and love.  Living may have been harder for them, but I do know that it was worth it, for both.

Brent's living days were filled with so much activity-doctoring wounds, counting up nutrition, dosing medications and problem solving, day in and day out.  But there was laughter, and there was so much love. It was hard work, his living, but it was hopeful.  It was always worth it.

As helpless we were in witnessing Brent's death and as difficult as it was to plan his funeral with Dan, living these more recent and somewhat emptier days has been much harder in many ways. We trudge through, always trying to honor Brent's struggle and bring about positive change for others.  It is something that we can do.



I attended a living "Stations of the Cross" service on Good Friday with Lauren, the first time that I have been to St Basil's since Brent's funeral. While we are not Catholic, I very much wanted to go to an Easter service there.  I was impressed by how these teenagers, classmates of Lauren and Brent, selected popular secular music to reflect the various challenges that Christ faced on his last day. Lauren was touched by how her peers related the stations of the cross to everyday life, using their own experience and explaining it in their own words.

I wept, each time that Jesus fell.  Lauren quietly passed me tissues, God bless her kind soul. The public display of Christ's struggle, his repeated failures, as well as the kindness and compassion offered by Simon and Veronica really spoke to me. The youth portrayed a very human struggle, and one that I could relate to, drawing any number of analogies. 

Lauren drove us home afterward and I gazed at an enormous full moon out the window, thinking of Brent.  This was the second blue moon of the year.

We decorated eggs when we returned home, a typical RamerNation creative endeavor.  We made some eggs for Alex and Brent, which helped to heal my heart some.




Our family celebrated Easter yesterday, a time of rebirth and renewal. We rejoiced in our moments of beauty. Olivia shared Wordsworth's poem about daffodils.  Lauren sang some songs and played her Uke. The world continued to turn, with Alex having adventures on the other side of it.  Brent, even farther away, will remain with me for all of my days.



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

Inventory

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.