We are all human-and even the greatest among us cannot escape this fact. Hubris or humanness is the downfall of many who begin with the noblest of intentions. I have had noble intentions. I am constantly questioning my own human failings.
Jose Baselga is a researcher-physician who has achieved great things and brought about enormous positive impact to the world. He is credited with the development of Herceptin, a game changing drug for women with HER2 positive breast cancer, which also has applications in other HER2 positive cancers. He has done enormous good for countless people.
I met Dr. Baselga a few years ago while visiting my dear friend Gabby, who had metastatic breast cancer. I am responsible for her seeing him, actually. I had read about some work that he was doing in cancer genetics in 2013, and because she lived near to NYC, suggested to her that she seek out his opinion. At the time, I was not aware that he was Physician in Chief for Memorial Sloan-Kettering, nor the depth of his influence. I simply read about a physician who was focused in Gabby’s particular flavor of cancer. She had arrived to point of medical complication that we both understood and agreed upon: There is time to follow protocol, and there is a time to be with those who write the protocols. I will never forget her squeals of delight on the phone when Dr. Baselga accepted her as a patient.
Years later, I shuttled with Gabby through Manhattan to her various appointments in different parts of the city. MSKCC has not had the luxury of contiguous space for expansion like some other cancer hospitals. Their growth has been accomplished via satellite buildings scattered across the crowded city, similar to the metastatic disease that they treat. Our long day ended with her appointment with Dr. Baselga. He was warm, encouraging, open to research ideas and collaboration, exactly as he came across in video clips that I had seen. I have to admit that I really liked him.
As Gabby’s disease progressed, I never doubted that she was in good hands. If there was anyone who would know of the latest scientific ideas out in the breast cancer world, it was Jose Baselga. He was part of Biden’s Moonshot Blue Ribbon Panel. He served as president for the American Academy for Cancer Research. He was a cancer darling, combining research, PR, industry and policy. We cheered and celebrated whenever we saw photos of him with our other favorites, because we are cancer groupies. And Gabby was being cared for by a rock star.
I fully trusted that Baselga was the best person to care for my friend. She loved him, and had complete confidence in him.
Like Brent, Gabby was hoping to ride the wave of progress in cancer, but recognized that it was not going to be an easy path. In 2016, she was doing very poorly. Her friends surprised her and flew in from across the country to lift her spirits before Christmas while she was inpatient at MSKCC. It was a magical weekend, one she dubbed “The Mutants take Manhattan.” We laughed often and inappropriately. Gabby insisted on taking a photo of five of us with LFS in radiation. We declared that we had more fun than should be allowed in a cancer center.
In this photo, there are over two dozen cancers represented. There is a very good reason that we are researcher groupies.
Gabby faltered and then rallied, over and over. I visited her at Memorial Sloan Kettering after Mother’s Day 2017. I had planned to return after completing a 100 mile bike ride in New York to support immunotherapy research. But Gabby died on June 2, with her sister by her side.
By this point, I was focused on my own two children and their very serious medical concerns, which would end in both of them having cancer again. I couldn’t fully stop to consider the loss of my friend. I had to come up with ideas for our own problems.
Our situation intensified. We traveled for options and clung to hope. My son died. My daughter was found with metastatic disease. I lost another dear friend to cancer. These are spare sentences, simple statements. But they cover complex events and equally complicated emotional responses. It has been an exceptionally difficult year.
In September, I read a NY Times piece that revealed that Jose Baselga had failed to declare conflict of interest and ties to industry in dozens of research articles that were published. He had received payments from pharmaceutical companies that he was partnered with on drug development projects. Shortly after this revelation, he stepped down from his position at MSKCC, and left the board of Bristol Myers Squibb. I would include the following articles, in case you are not familiar with it.
While the average person, and certainly anyone distrustful of Big Pharma, would be blown away about the size of the payments, there is nothing illegal about receiving compensation. I don’t actually have a problem with researchers benefiting financially from the development of the ideas that they have discovered. Partnership between academia and industry is so important, especially for advances in cancer. It is difficult to measure the impact of Herceptin alone.
Baselga is reported to have co-authored 178 scientific articles since 2013, an indication of a prolific researcher. I recognize that oftentimes contributions are uneven among the listed authors, and the conclusions of an article are not universally agreed upon. Nonetheless, Baselga failed to declare his relationships with industry to these scholarly journals, even if he might have had minor role in the work. His comments and conclusions, as an influential researcher, can sway markets. Transparency regarding his potential financial benefit is paramount to maintaining his integrity.
They are amending these articles to reflect his potential conflict of interest, fixing these mistakes in the journals.
But the greater damage from his omission is one of perception, which is not as easily mended as the record. There are those in the research world who are questioning the validity of his data, a whole body of work, because he failed to disclose his conflict of interest. Others suggest that financial gain might have influenced Baselga's conclusions, and every public utterance is being combed through. Some, even friends of mine, question if financial gain may have influenced his clinical advice toward patients like Gabby. I have no way of knowing if the omission stemmed from Baselga’s hubris or sloppiness, but neither are acceptable, particularly in a leader.
The reputation of an institution and the trust of the public in the research system is far bigger than one researcher, however gifted. A foundation of integrity is what medicine resides upon, as well as the tenant that patient care remains the first and foremost priority. This is why Baselga's departure from MSKCC was swift and complete.
I have long been playing the “What If’ game when it comes to my decisions and choices regarding my son Brent's care. Since reading these reports, I have begun questioning my failure to encourage my friend to seek other opinions and consider interesting clinical trials that might have been helpful. I recognize that this is a normal and perhaps unavoidable part of the grieving process, but I have moments where I question if I was enough. Did I serve her well?
The ripples of our actions and our omissions travel far. I spent only half an hour speaking with Jose Baselga, but it was an entirely positive and engaging conversation. My friend loved and trusted him unquestioningly. His sins of omission are most certainly haunting him today. I am going to replay the clear affection that he had for Gabby in my mind, and believe that I should not also be haunted, having put my trust in him.
I have been struggling with the loss of my son. People often ask how our family manages, how I even get out of bed in the morning. I have had physicians over the years declare that we must have a very strong faith, words that sounded curious to me partially because they come from medical folks, but mostly because we are not affiliated with a specific denomination.
What I can say with certainty is that regardless of your church membership, losing a child will give you spiritual pause. My conversations with God over the past month have been filled with questions and confusion. I had every confidence in traveling to Houston, that MDA was where we needed to be. Every sign, every single breadcrumb pointed to Texas. I prayed throughout the clinical trial process last fall, that if this was not the path that we should be on, to please make it very clear, very obvious, because God knows, I am not so smart.
While we were in Houston over the holidays, I knew that Brent's road to recovery would be exceptionally difficult. But neither Brent nor the rest of us have ever been afraid of hard work. And I kept thinking about the medical flight that showed up, one that I didn't even know that we would need. Brent miraculously got to Houston, and the cells were right there. His life was in a precarious balance, but our faith was not.
Since Brent has died, I am haunted, perplexed with what I am supposed to do with this experience. What was the point of his struggle? I haven't been afforded the luxury of being quiet and still, as some have urged, with Lauren finishing up chemotherapy. But I wonder during my quiet moments, why we needed to be in Houston, if not for the cells.
A dear mutant friend of mine offered to take me to see Joe Biden speak in Washington DC. Mills is a nurse with the Navy in charge of executive medicine. Among other people, she arranged care for Joe Biden's son, Beau and security for the Vice President and his family to visit him at Walter Reed. As a thank you to his son's caregivers, tickets to this event were offered, and I got to be Mills' +1.
I have not had time away for myself since Mother's Day, when I went to Sloan Kettering to visit our friend Gabby, while she was dying from breast cancer. So, I carved out some time for self care, and drove to DC on Sunday. I had hours alone in the car to think, and to cry some. I had conversations with God. While I have no doubt that there is purpose in all of this, I am super curious to know what it is.
Patience, we have long established, is not my strong suit.
I have followed the progress of the Cancer Moonshot from its announcement. As I would read research developments with my coffee each morning, I would share interesting and exciting things with Brent as he started his day. We spoke admiringly of how Joe Biden used his painful experience to help others. The Moonshot investment was incredibly encouraging and it was established just at the time that immunotherapy began to explode. I really thought that Brent and Lauren would ride the crest of that giant wave.
Joe Biden is on a book tour, sharing his experience with grief, having lost a son to cancer, a son full of goodness and promise. Beau was also in a clinical trial, hoping to ride the same crest. I went to the event thinking that hearing Uncle Joe speak might be helpful to my soul...because while we might seem like very different people, I could certainly relate to his disappointment.
When we got to the venue, Mills revealed that we had the opportunity to go to a 'meet and greet' where you can get your photo taken with the Vice President. I slipped a photo of Brent and Lauren out of my purse, because I wanted to share with him how much the work that he does has mattered to us. I struggled emotionally as we approached, and my dear friend introduced us. I could hardly speak for my overwhelming emotions.
When Joe Biden learned that Brent had recently died, and that Lauren was in treatment, the meet and greet line abruptly halted. He wrapped his arms around me and told me that he truly understood what I was going through, having lost two children. He murmured kind words and assured me that I would get through this. He held my hands in both of his and looked at me with eyes that I recognized...ones filled with understanding, and deep with grief. Mine were filled with tears, so it was a little blurry.
He called over to his assistant and asked that I be given his personal cell phone number--and Mills's eyes widened. The Vice President said that he wanted me to call him if I needed anything, even just to talk. It was rather surreal, thinking about how often our family discussed the important work that this man was doing. But at the end of the day, Joe Biden is simply a parent who knows what it is like to lose a child. There is no escaping this.
We took our seats in the theater to listen to the chat between Jay Cohen and the Vice President. As they began to talk about the book, I heard Joe Biden describe meeting me, our loss of Brent, and of Lauren being in treatment. The book, he said, was written to help folks with loss. An hour later, Jay Cohen brought our family up again...it was the strangest feeling, sitting there in the audience, anonymous among thousands, yet not anonymous.
As I drove through the mountains yesterday in particularly bad weather, I thought about what I will talk about when I reach out. (Mills keeps messaging me, urging me to make the call) I feel a kinship with Joe Biden, in faith, in loss, in determination to do something good with it all.
Uncle Joe should send me his dry cleaning bill, because I think that I might have snotted on his sleeve.
I forgot that I had written this blog post in February- the persistent snow in April feels the same even if other things are much different. Lauren has finished treatment, but another tumor was removed from her leg. The pathology was reviewed by MD Anderson, who determined that it was osteosarcoma, although this is a most unusual picture of metastatic disease. I waited anxiously during her PET scan, furiously playing words with friends and looking at my phone for distraction.
I couldn't pray in that moment, feeling overwhelmed by all that we have gone through over the past six years, and especially the events of the past six months. I was done petitioning God for guidance. I asked for no breadcrumbs. I was sort of throwing the bullshit card because, well, we needed a break, and clearly we weren't getting it.
It was then that an email response arrived from Biden's Cancer Initiative, suggesting a couple of advocacy groups that I might work with. That seemed like a rather big breadcrumb. And while I still could not pray, I did make a promise: I will do the work.
Lauren's PET was completely negative. Her lungs were clear. It was an isolated met in her skin, which isabsolutely not how this disease works. It is unsettling to have a child who does not follow conventions and rules. I think that it is unsettling for physicians as well.
I return to this story of Mills and Joe Biden.
I went to Mill's retirement party over the weekend, which was sort of like going to a wedding without a groom. I should mention that this is the first time that I have been in a large group where people don't already know our story. Socializing is kind of awkward.
"How do you know Jennifer? Did you go to college with her? Are you in the Navy?" Different shades of the truth always lead to the same end: I am a mutant friend. We met online in a support group. Mills is an amazing cancer friend. LFS.
Follow up question--so you have had cancer then? Nope. Sigh. My kids.
Inevitable follow, to the follow up question--How many children do you have? This feels like a trap, a trick question. I have four. Two affected. One died. It is a party, why am I talking about this? There were several non-cancer-y guests who went on to share some pretty cancery stories with me, which somehow made it less uncomfortable. We talked about the challenges of illness, to be sure, but also the good that can come after loss.
I am keeping that promise that I made, and am doing the work.
To my credit, I do not cry during this retirement party. At the pre-party, the night before, I met Mill's mother, who has lost both her husband and son to cancer. The majority of our 'mutant posse' was there, helping me to spill some wine and tears. Plenty of both.
But at the retirement party, I could focus on celebrating my friendship with Mills and my other dear friends there, rather than how sad I am about Brent and our friend Gabby who died from breast cancer last summer. There was a whole lot of laughter, which I know honors both of them.
Back at home, my brother shared our story with a friend of his who runs Senator Sherrod Brown's campaign operations for Medina County. He called me up out of the blue to offer tickets to a fundraising event. Joe Biden would be speaking at the dinner.
I very much wanted Lauren to meet the Vice President, and picked her up from Flying Horse Farms oncology camp a day early. I was stunned that the Vice President remembered me months later as I came up to introduce Lauren. (This is an amazing gift that politicians have) Ever kind and gracious, he offered encouragement to Lauren, insisting on a photo of just the two of them.
Neither one take a bad photo.
I have been mentally stuck, not writing very much. Our long year of grieving is coming to a close. I miss my son, but am channeling that energy, working to change the things that did not serve him well. I have seen some progress in both legislation and policy, something that I am proud to be a small part of, adding my voice to the chorus. There is power in the collective.
Last night, I read that Joe Biden had another stop on his book tour in Montana. He was interviewed by Bruce Feiler, who I had skyped with for two hours back in April, as part of his own book project. He is a best selling author, who also happens to be a 10 year osteosarcoma survivor, and a patient of Dr. Healey, a brilliant surgeon who worked tirelessly and successfully to save my son Brent's leg, back when he had his first cancer.
It is odd to me, how the world has become so much smaller, and more interconnected. I am very glad that I am tangled up with the sort of people who are using their time, their talent and the platform that they are afforded, to make good things come of their struggles.
I am trying to do the same, just fumbling my way through.
I wrote in September, anticipating difficult days ahead of me.
I sensed the inevitable march of time, as trees progressed in their colors in the predictable way. There were warm days when the yellow maples shone bright against a robin egg dome. I would pause, and whisper my son's name. I had compulsively planted salvia among my golden daylilies and yellow mums between my blue hydrangea bushes. I would see Brent's colors everywhere, whether by chance or by design.
There were wonderful opportunities throughout the fall, to be sure: Galas raising money for cancer research, and speaking opportunities for Lauren. Liv had soccer games; Lauren, cross country meets. There were birthdays for Lauren and Alex, who are here.
And for Brent, who is not.
I sat for an hour in my living room one Sunday, watching the wind carry leaves that were still falling as they mixed with snow. I was filled with a feeling of helplessness and dread, incapable of stopping the days to come. That afternoon, I felt incredibly small and insignificant--recognizing that I was unable to control the wind, powerless to corral the many leaves, or stop the snowflakes as they blustered about. Gazing out the window as my cup of coffee went cold, I couldn't even define the season.
I went alone to West Virginia, to spend two days at my friend's cabin. I tromped in the woods, recognizing that God resides in this natural cathedral. The towering trees drew my eyes to the gunmetal heavens beyond. Bronzed oak leaves still clung to branches high above. I whispered a prayer for my son in this holy place.
The snow began to fall as the darkness came, and Frost's poem began to fill my mind, carrying with it the memory of teaching it to my boys when they were young:
Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.
My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.
He gives his harness bells a shake
To ask if there is some mistake.
The only other sound's the sweep
Of easy wind and downy flake.
The woods are lovely, dark and deep.
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
I attended a more traditional church last night, the one where we had Brent's services. The music was beautiful, but unfamiliar. The voices combined like silver waterdrops, which soothed the ragged parts of me.
Father Walt spoke about Advent season being a time of waiting and promise. I remembered that last year at this time, I was filled with anxious waiting. Waiting, but still hopeful. I wanted to hurry the days along so that Brent could get to his trial. There were so many difficult days last December, opening the tiny door, but not finding the chocolate. Our hope was found in those cells, ones that Brent would never receive. My profound disappointment lead to profound doubt.
This year, Advent is rather the reverse. The days are relentless in their advance. They arrive without me wanting them to, without me being quite ready for them. Like the leaves and snowflakes swirling, they are blind to my outstretched arms and deaf to my pleas for a pause.
Father Walt also talked about doubt last night. Rather than being a spiritual weakness, he considers doubt to be evidence of faith. I would agree, and describe them as different sides of the same blade; you cannot experience one without the other. My friend's daughter would have been 21 yesterday, had she lived. Grief, we have decided, is evidence of love. It comes in equal measure. There is balance in the universe, the yin and the yang.
This morning, the leaves are not gone, but buried under a thin layer of snow. More is steadily falling. The advent season is here.
But I have promises to keep. And miles to go before I sleep.
As his nutrition lagged, I prepared protein and calorie laden shakes for Brent. After drinking these for a while, they had understandably begun to lose their appeal. I remember once gingerly sliding a glass of "calorific goodness" onto the table next him. I attempted to soften the chore that I placed in front of my son with an enthusiastic and overly cheerful "I love you, Brent!!" He glanced at the beverage, raised an eyebrow at me and rather than reciprocating the affection, he replied sardonically, "I am aware." These three words became something of a joke between us. Lord, I miss his laughter.
September is a month filled with awareness. I could certainly use Brent's same inflection and sarcasm about now. "Cancer? I am aware."
We Ramers have long been "going gold" for childhood cancer in September, which, conveniently for us, is the same month and color for Sarcoma awareness, a malignancy that we have dealt with three different times in our children. We can thriftily drape those gold ribbons for double duty. In addition, the Leukemia Lymphoma Society recently notified me that September is also Blood Cancer awareness month, but I am pretty sure that this would be a red ribbon. Even so, we seem to have a good portion of our cancer awareness bases covered as autumn commences.
I have had trouble writing lately. My thoughts and feelings are difficult to articulate, and when I do tease them out, I am reluctant to weary the world with them. Grief is complicated.
Our summer began with a week of sketchy scans in Houston for Lauren. Her concerned doctors ordered follow up imaging in August (which was found to be blessedly clear.) In the interval, we filled our calendar with as many fun things as we could manage, including a quiet week at the beach. There is an unspoken urgency in our planning, both to make up for things that we were previously unable to do, and to do them quickly, before we become medically busy again.
Our summertime activities were good of course, but it was kind of like enjoying Nutella between moldy slices of bread, which is hard to stomach at times. On the other hand, if you all you have is moldy bread, slathering it in Nutella is definitely the way to go.
In addition to some purely recreational activities, I recognize the luxury found in having time for advocacy, and the chance to bring about positive changes. Lauren has lent her voice to organizations that she trusts and believes in: Kick It, which is now a part of Alex's Lemonade Stand Foundation, Flying Horse Farms, Teen Cancer America, Flashes of Hope. She has spoken with folks at Rainbow Babies and Children's Hospital about partnering with them in order to make things better for teens with cancer.
In addition to doing similar work at Rainbow, I have been reaching out to national advocacy groups in order to help shape policy at FDA and NCI. Whenever I think about how I might make it better for Lauren with her next cancer, I return to the arbitrary wait that Brent was forced to endure. Despite relapsing in early July, he had to delay until after his 18th birthday in October to queue up for the adult CAR-T clinical trial. He was not able to have his cells collected until mid November. The next six weeks, spent waiting for the cells to be modified and expanded, were excruciating. We helplessly watched as Brent got sicker and sicker. As tenacious as my son was, both the disease and the system were stacked against him.
Lauren will be 16 in a few weeks. I am keenly aware of this happy September event, but recognize that it might not be sufficient to her needs. I would never wish away this time as she returns to deliciously normal high school experiences, but we know that lot can happen medically in two years. I read every day about promising adult trials, for every type of cancer. While I sincerely hope that Lauren never needs them, the fact that she is barred from until she turns 18, this absolutely haunts me.
We Ramers interviewed with a local television station back in April (Alex was not there--off studying in Australia) Fox 8 began airing the piece last week to promote their annual charity walk/run. The 2018 Fox Trot on Saturday, September 8th will benefit Alex's Lemonade Stand Foundation. (Come on out!)
I am hoping that by sharing our story, we might encourage folks to attend the event, which raises awareness and funds for pediatric cancer research. But also, I hope it increases awareness about how adolescents are excluded from participation in adult clinical trials, an entirely arbitrary limitation that has enormous consequences, as we have experienced. I hope that by sharing our difficulty, we can help to change this policy.
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.
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 wecan 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.
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!
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.
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:
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.