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!

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.

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:

Forever RamerNation

The month of September

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

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

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

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

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

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

It is all madness.

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

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

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

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

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

We welcome your prayers for our family.

Someday is today.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Someday is today. 

We welcome your prayers for our family.

We Pedal On

We got to West Point Friday night just in time to pick up our registration packet and drop off our bikes.  I got to meet my first friend from AstraZeneca.  Priscilla was a riot of optimism and enthusiasm, asking to take photos and promising me that we would see each other in the morning. She assured me that we would encourage each other throughout the 100 miles. She did not lie

We had time to grab some delicious pasta dinner, get Dan and the other kids settled into our Airbnb (Dan gets extra points for being the lone driver in the later car) and then go to bed. No late night Cav's watching for this girl--although it seems that they did quite well, even without my attention.

Jamie gets extra chauffeur points for getting up so early to take us to the starting line and a round of team points for getting snazzy custom RamerNation jerseys made for the three of us. The morning weather was mercifully cool. West Point was stunningly beautiful. The course, as advertised, was hilly throughout. I felt great for the first 45 miles.

I met Orlaigh, a woman from Ireland, (actually from the same town that Laurie just returned from) who now lives in Long Island. She was riding 100 to honor her mother, who had breast cancer. I hate cancer, kind of a lot.

I thought a lot about the people who travel with me in spirit. My phone, which carries a fantastic biking playlist from my volleyball girlfriends, dinged text messages of encouragement throughout the race. Jamie, Dan and the kids waited for us at the rest stops and finish line, ever supportive. I saw a ladybug on a flag, a symbol of my friend Gabby. I felt both a rush of grief and a dose of her encouragement, something which always bolstered my confidence. We don't really do anything alone in this life, regardless of how it may appear.

I came to this century ride with Alex (who absolutely killed it, finishing an hour and a half before us) and Laurie (who was announced as the 4th highest individual fundraiser). However, we ended up riding most of the miles alone, only bumping into one other at rest stops, which is how these races tend to work out.

Like a starry sky filled with constellations, there are vast stretches of quiet in between. Throughout the ride, I thought about how Alex was somewhere in front of me and my sister just behind me, connected by invisible bonds.  My husband would be cheering just up ahead. Glimpses of Brent, Lauren and Olivia could sustain me. Jamie often drove by, shouting encouragement through the window.

I met some researchers who had good things to share about their work.  This lifted my spirits as I considered Lauren's current issue. Potential issue, I should correct, because it is not a problem until it is a biopsy confirmed problem. 

I say this kind of a lot, a mutant mantra for mental health.  Because there are lots of worries along the way, which could rob me of today's blessings if I allowed them to dominate my thoughts.  It is difficult mentally to tamp down worry, particularly when I have intimate knowledge of how long and difficult a sarcoma treatment is.  But today is not that day-- which is another handy phrase.

It got hotter in the afternoon, but the folks from CRI did a fantastic job of providing support. There was food, water, Gatorade etc, every 10 miles or so, and the SAG trucks patrolled the routes to make sure that everyone was covered. Laurie struggled at the very beginning and tailed the pack of 100 milers.  She told me that for the first 40 she had her own personal SAG driver, Paul, who insisted that he would not leave her. And he didn't, until she began passing people, and met up with me at mile 55.  It was an extremely well run event.

I biked with Debora, another part of the AstroZeneca team, an ebullient woman who is comfortable hugging a sweaty stranger on a bike. She evoked Gabby's social fearlessness and perpetual optimism.  

In the second half of the ride, the century riders chatted more at the rest stops, encouraging one another, plying pickle juice on those who were cramping and plotting out the distance remaining. Breaking down the miles we had yet to grind out, into smaller more manageable chunks really helped. "Only 12 miles to the next rest stop!"

Around 70 miles in, just after passing a SAG truck, I lost use of my brakes.  Laurie, ever practical, pointed out that I wouldn't need them for at least the next quarter of a mile, which was clearly uphill, so we climbed.  At the top, there happened to be three riders from AstraZeneca who were stopped at the crest. They kindly helped me with what ended up being a simple fix, something that any experienced rider would know how to handle.  A downhill followed, one that was perilous even with functioning brakes. Without their help, I would have had to wait for the SAG truck. It felt somehow prophetic to see how these researcher-riders became directly involved with my plight. 

Laurie and I later worked our way up a ridiculously steep and winding road that hugs the rough rock face of a mountain, with the Hudson River flowing below. We had come down that gloriously scenic hill early in the morning, when our adrenaline was rushing, and our legs were fresh. We did not stop for a photos in our haste. Racing along, I had seen a huge bird take flight and I thought about how extraordinarily beautiful, but fleeting it was. 

As we reached that same peak after a long climb on our late afternoon return, Jamie was waiting there to take our photo, capturing us sweaty and tired. It was still a glorious view. As we posed, a biplane which I can only describe as 'Gabby Yellow' came out of nowhere, passing close, and commanding our attention.  It was perfect.

An exhilarating downhill followed.  However, we did not return through West Point. The course took us instead a different route that involved some hills that Laurie and I neither anticipated nor appreciated. There may have been some swearing. We passed a woman who shouted encouragement to us, telling us that we were only three miles from the finish.

Heartened, we pedaled on.

Two miles later, we read a sign that said '5 Miles To Go.' There was definitely swearing at this point. And murder plotted. Disheartened, but determined, we pedaled on.

   

Finally at the finish, I hugged my family--Alex looking irritatingly well rested--and we cheered Laurie and our new friends in.  Dan bustled us to a massage tent where angels of mercy put their hands on our positively disgusting bodies, encrusted with 100 miles worth of crystalized sweat (sorry to be gross, but it was like sand on my face)  They stretched us and pummeled our muscles. It felt positively amazing and I think this saved me, because believe it or not, I was not sore the next day.

Over $900,000 was raised at the event for immunotherapy research. I know that more will roll in for CRI until Sept 1, when fundraising is finalized. It was an honor to be part of this effort, and I am grateful for every bit of encouragement and support along the way

.

In the morning, I sipped coffee and listened to musical gift from my volleyball friends, a lyrical affirmation of their belief in me. Laurie and I talked about how fortunate we had been in the weather.  On Sunday, it neared 80 degrees by 9am.  Biking in that kind of heat would have been an altogether different sort of challenge.

I was enjoying the beautiful gardens at our airbnb and watching Olivia feed a goose and her four fluffy chicks. It suddenly washed over me that there was nothing left to do, no 100 mile buffer between me and Lauren's surgery. 

This is the next step.

Deep breath.

Heartened, or disheartened, we will pedal on.  We do not do this alone.

Riding 100 miles for the past, present and future

They say that you should have an Elevator Pitch--a point that you would make to a captive audience that lasts the length of an elevator ride.  This makes me imagine folks in the business world lurking at a bank of elevators and carefully slipping in when an important ear should be leaving for the day, speech at the ready.

I am not sure that there are buildings tall enough (or elevators slow enough) to accommodate what I would want to say these days.  I might, however, be able to cover it over the course of a 100 mile bike ride. This is assuming, of course, that I could breathe enough to speak as I pedal uphill.

Tomorrow, I will be driving to West Point, NY.  On Saturday, Alex, Laurie and I will bike in support of Cancer Research Institute which funds immunotherapy studies and trials.  Biking 100 miles will not the biggest event of my week--it is currently ranking 4th--behind the devastating loss of my friend Gabby to metastatic breast cancer, the challenges of finding appropriate treatment for my son Brent's GVHD and the surgery that we are organizing to remove my daughter Lauren's latest cancer concern.  

Biking 100 miles will feel like a vacation.  

I do hope that it will be a 'working vacation,' and that I will have the opportunity to speak to researchers about the things that they are learning, because advances in immunotherapy would impact all three of the things that have dominated my time, emotion and attention this week. 

When life throws you challenges, rapid fire like this, it can be overwhelming. 

I grieved over the weekend for the loss of my friend, a mutant Auntie who knew my children well. Gabby remembered better than I did when 'library day' was for Olivia, and often greeted her after school through the wonder of FaceTime. I would chat with Gabby while I folded laundry, which transformed this mundane job into an engaging social event. She had a special relationship with Brent as a multiple cancer survivor and visited him both at MSKCC and in our home. Like Brent, Gabby frequently found herself in medical messes, and like Brent, she always seemed to find a way out. 

I cannot express how much Gabby brought to my life, in laughter which came easily, and random knowledge, which rivaled google. But beyond this, she had a grace and wisdom in how she faced her own life-one filled with cancer, but overflowing with love. She recognized that life is not measured in years, nor health, but rather in lives that are touched. As an example, she knew by name, nearly every person we met at MSKCC, from the nursing assistants to the elevator guy, teasingly dubbed "chief of vertical engineering"

"Has your son returned from his vacation?"  

"Do you have photos of the new baby?"  

I told her how remarkable this all was. (I am decent with remembering people's stories but horrible with retrieving their names).  She scoffed. "But, Amish, they are all so important. They care for me." And they clearly did, more than simply as their jobs required.  I know this with absolute certainty because some came to her room to check on her after they finished their work elsewhere in the hospital.

People were important to Gabby. And she treated them like the treasure that they are.  Even in hospital, even struggling, she always thought of others, which was the defining quality of her life. While nothing can be changed for Gabby, a better understanding of the immune system and advances in cancer treatment would benefit others, including our mutual mutant friends. In this way, I feel that biking the century ride honors Gabby's generous spirit.

I learned yesterday how to stick a 3/4 inch needle into my son's chest to access his mediport. For years, my personal measure of success was found in avoiding this particular nursing skill.  I will now be doing this procedure daily, in order to give Brent infusions from home.  I also navigated my way through several pharmacies this week in order to get the specialty medications that he needs. We are transitioning to a new adventure. 

It may sound like a complaint, but I consider it to be a blessing, to do this at home. (Brent sits cozily in our living room with his infusion dripping as I type this) He has had a ridiculous medical journey and his time at home is hard earned.  We never take it for granted. 

After facing three significant cancer diagnoses with Brent and the devastating side effects of treating them, I would gladly bike to support more effective and less toxic treatments. Biking 100 miles is a trifle, in the grand scheme of what life and cancer has required of my son and how both impact him today.

I took my daughter Lauren to meet her surgeon this afternoon, a hand me down from Brent's osteosarcoma days. Dr. Getty greeted us warmly, saying that he could not believe that it has been five years.  I told him that it was five cancers ago, if he wanted another measure of time.  He seems to bring out the snarkiest of humor in me.

Lauren is now fourteen years old, becoming a beautiful young lady.  While normal parents might talk to their children about the birds and the bees, a mutant sign of coming of age is learning to pick a surgical plan or evaluate treatment options. Today, my daughter asked good questions and signed assent for the first time.  

They grow up so fast. 

Lauren and I laughed in the car on the way home from this appointment about how I had bought a baby photo album for her, but as a third child, it was completely empty.  (I didn't even purchase an album for Olivia, our fourth.)  Lauren joked that instead we could fill her baby album with cancer memorabilia.  "Oh, look at that adorable adrenal tumor!  I remember that hospital gown..."  She certainly comes by the snark honestly.

Her surgery will be on Wednesday.  We welcome your prayers.  With any luck,she will not need any sort of additional treatment, but I am shopping for immunotherapy options if this growth proves to be malignant.  

Past, present and future.  This is why I ride.

Our team leaves tomorrow.  We each do what we can.  My sister Laurie, Alex and I will ride our bikes. Dan, Jamie, Brent, Lauren and Olivia will cheer us on. Thank you for doing what you can, whether it be encouraging our family, sharing our story, or donating to the cause by following this link:

Team RamerNation 

As I ride, I will be thinking of Gabby's disease, unconquered by traditional chemotherapy, about Brent's current challenges, which are side effects despite the success of treating his cancer, and of Lauren's future challenges. I know that we can do better.

I will have 100 miles to think about how.    

Pediatric cancer, LFS style

September is pediatric cancer awareness month, something that we have quite a bit of experience with, thanks to LFS.

With many inherited cancer predisposition syndromes, like BRCA, there is an ethical debate about testing children, who are unlikely to develop cancer until later in life. With Li-Fraumeni Syndrome (LFS), half of all cancers occur in childhood, so there is a real benefit to testing and screening minors. While the emotional burden is heavy, screening can save a child's life.  The Ramers have personal experience with this, having discovered four of the six cancers in my children, not due to concerning symptoms, but because we were armed with the knowledge found in genetic testing.  We were looking for cancer, before it found and overwhelmed us.

Through routine screening, physicians discovered two brain tumors, metastatic melanoma and acute myeloid leukemia in my children over the past five years, prior to any symptoms developing.  Early detection offered the advantage of less complicated brain surgeries for Lauren.  Consequently, my daughter's cancer diagnosis has not slowed her down. Lauren is an honor student in high school, in the marching band and she is currently running cross country.  I am so grateful for these blessings.

My son Brent has had a tougher run with his three cancers.  He has endured well over 30 surgeries, months and months spent in hospital, chemo, radiation, bone marrow transplant, immunotherapy, and epigenetic therapy. He has worked incredibly hard with his doctors, finally achieving a well deserved remission. I am proud to say that he is applying for National Honor Society and has returned to school for the first time in a year and a half. However, had either the melanoma or the AML progressed further, prior to his diagnosis, he might not have had the same treatment options.

Today, we are so grateful and yes, even hopeful.

• The Toronto Protocol, the guide that helped our doctors find these cancer early, was published just months before our diagnosis.  It has made a difference in outcome for us, and it showed up just in time. 
• We are incredibly fortunate in our team at Rainbow Babies and Children's Hospital. I could never properly express how we have been touched by people there who care for our family, and in a way have become part of our family.  I am so grateful that they are willing to think outside of the box.
• We recognize the diligent effort of cancer researchers worldwide who doggedly work to make this condition even more manageable. All advances in oncology benefit the LFS community because we are at higher risk for all forms of cancer.
• I am encouraged by the recommendations of the Cancer Moonshot Blue Ribbon panel which were revealed today.  Among other things, they urge that the research on the drivers of pediatric cancer be intensified and provide strong support for immunotherapy research, which is not DNA toxic. Brent got his latest cancer, a therapy induced AML, from the DNA-toxic chemotherapy he received to treat osteosarcoma. I stewed (kind of bitterly) in that fact for quite some time. We can do better, and will.

This brings hope that our future will be brighter than some very dark days that we have experienced. Lauren and Brent have had cancer simultaneously, on two different occasions. In 2011, Lauren had a brain tumor as Brent battled osteosarcoma.  Again in 2015, Lauren headed back to neurosurgery while Brent did chemotherapy for leukemia, preparing for bone marrow transplant with his brother Alex as his donor. Twice within a month, the Ramers had two rooms on the pediatric oncology floor, which sounds completely ridiculous.

This is pediatric cancer LFS style in its current state.  But I know that working together, it will get better. I am really looking forward to helping with that work.

Today is not that day.

A few weeks ago, I contemplated some time of my own, relishing in the luxury of how I might spend it.  I have a friend who frequently mentions that this sort of activity might anger the cancer gods.  I don't believe that life works this way, although I might have to give greater consideration to this notion. You can decide for yourself.

We are not, most gratefully, busy with cancer at the moment, but rather, cancer's aftermath.  

I worry that I might be developing a credibility problem.  If you google Li-Fraumeni, our rare inherited cancer predisposition syndrome, you will find an explanation for the six uncommon cancers in my children. If you search "necrotizing fasciitis," you might conclude that we are branching out from cancer, but in a no less devastating or dangerous way.  If you do not know our family, you might not believe me at all. 

Brent has spent the past two weeks in the hospital with a stunningly aggressive infection: a flesh eating bacteria. Four of these days were spent in the pediatric intensive care unit, three sedated and on a vent as they managed his septic shock.  Shock, would be the most appropriate word in that sentence.  He had six surgical interventions to remove necrotic tissue on his back and he faces several more in the coming months of healing.  

It is surreal, even typing these words out.

Whenever we have faced daunting odds with a cancer diagnosis, invariably someone will helpfully point out that death by cancer is not assured.  We might just as easily get hit by a bus.  For the record, I have never found this to be terribly comforting. If you find that you must support someone with cancer in this vein, I would add "or flesh eating bacteria" to the bus comment. 

The most helpful bit of encouragement that I ever received, came nearly five years ago from my sister.  As I despaired about our genetics, and the osteogenic tumor that encompassed Brent's entire right pelvis, my fear overwhelmed me.  Laurie was everything that I needed in that moment, acknowledging my fear as justified. "It is possible that all of the things that you fear may happen. It is possible that your children may die. But today is not that day."

I cannot say how many times I found the strength to tamp down my fears as worrisome things happened with these words "Maybe... But today is not that day."  I found a way to live, and to laugh, and to love.

However, in the interested of balance, I should also mention that I cannot count how many times in the past five years that I prayed "Dear God, please help me, because today very well could be that day."  Thursday, July 14th can be added to this tally.  

As they wheeled Brent out of the PICU to the OR, I despaired in a room littered with medical debris from hours of efforts.  Dan turned to me and firmly said, "This is only another chapter in the book." My husband is a rock, full of faith, in my moments of doubt.

As Brent's health progressed last week, our family resorted to humor. We told Brent of the things that transpired while he was so very ill and sedated. Upon learning that he had flesh eating disease, Brent quipped that this was nearly as cool as Lauren's proposed scorpion venom trial, something worthy of a zombie apocalypse.  Alex had offered his own skin if a matched graft for Brent would be a better option. (I am so proud of him for offering his brother a pound of flesh, in addition to bone marrow) There was much joking about how hairy Brent's back would be with Alex's skin attached. I am a firm believer in whatever gets you through. We are going to laugh as much as we can, and fairly inappropriately, or so it would seem.  

We are blessedly home, but many medical issues remain. Equally challenging, I am left wondering how to thank the legions of people at Rainbow Babies and Children's Hospital who have cared for us. I have felt this way before, once with Brent's orthopedic surgeon at Sloan Kettering. I struggled to find words that were adequate in expressing our gratitude for his help, saving both Brent's leg and his life. Dr. Healey, full of grace, simply asked that we go and lead a full and happy life, using our talents to make the world a better place.  

Well, then.

Despite my ardent wish, The RamerNation has yet to find a bit of 'boring,' the term we use for medical quiet. But beauty is evident in all of the unexpected places that we find ourselves.  Our experience has been extraordinary by every medical measure, and by virtue of the folks who have crossed our path. 

I am so grateful for every day of our life together, trials included.

Small, focused moments

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

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

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

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

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

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

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

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

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

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

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

We are so very grateful for your prayers.

The colors of cancer

ROY G BIV  Doxorubicin, the red devil. Methotrexate yellow. Mitoxantrone blue. Colors and nicknames. These days, the chemotherapy colors are more familiar hues to us than the ones found in a Crayola box. We will also get to see Propofol this week, which is white and opaque.  But this isn't a chemotherapy agent.  It is a sedation drug, which is kind of fitting, when you think about it, a liquid like White Out, a primer that blots out everything.

I wake up not sure where am, or why I am there, even on the rare occasions that I find myself in my own bed.  Our situation changes so frequently.  In my sleeping hours, I wonder if I escape to an empty landscape.  I do not remember my dreams anymore.

Perhaps my lack of dreaming comes from my late night reading.  I looked over the consent forms for an investigational drug last night and considered the odds.  The problems that we currently have are certain.  The potential problems that we are signing on for are substantial.  We have arrived at a place where there is no standard of care. There are no obvious answers. Dan and I are required to make difficult choices for both of our children,  all of which carry significant consequences.

We have been doing this for years, but it somehow doesn't get any easier with practice.

I am writing, but not writing well or easily.  This leads me to believe that maybe I am dealing, but not dealing particularly well.  Perhaps though, it is just because we are so bloody busy.  And I am so tired.

Interrupted just now by rounds, I learned that the beat down has begun.  The anticipated dip in blood counts has commenced for my son.  These counts will continue to drop until we are required to transfuse, repeatedly.   Brent will be wide open for infection.  Knowing this, we will continue the Cookie Monster blue medicine for another two days.  And then we will add another drug, which will drive down his marrow even further.

Brent is currently doing very, very well,  I remind myself.  This is a big breadcrumb.

Pick your poison.  Brent joked that we literally did this ten days ago, when we met with a group of doctors and learned that his leukemia had infiltrated the lymph nodes. The disease has to be controlled before he can go to transplant, using the perfectly matched marrow that his brother Alex offers.  The menu had been filled with all sorts of unappetizing things.  Brent helped select his own poison, at fifteen.

Lauren will have surgery this week to deal with a grey area in her grey matter.  Dan and I had to decide with her, as a twelve year old, about how to manage the tumor that is slowly growing in her brain.  I looked over the series of black and white MRI images with her doctor and saw the changes.

There were no clear answers offered from the medical folk, and the nuanced opinions all required that we take the lead.  The Ramers decided to deal aggressively with this, having experience that suggests that nothing improves with the wait. We will wait only until Thursday, when we will have two rooms on the pediatric oncology floor.

It will be a busy week in cancerland.  I would love to vacation somewhere else, but the Ramers are together, at least.

My nephew just came to visit, a ray of sunshine on this drab day.  He is a reminder of the outside world.  Another breadcrumb.  Eric shared the wonderful things that he is learning.  His visit reminds me that this day is one to celebrate, because it is filled with love, with wonder, with joy.

Despite our burden, or perhaps because of it, all of our days are worth celebrating, because all of our days are clearly filled with love.  I really need to focus on this part, and put the technicolor cancer options behind me now.  Decisions made,  I must leave it in God's hands as we move forward.

We are always looking ahead.
We always welcome your prayers.

I have another son

We all live with cancer in this house.

Alex, my 17 year old,  has been raised in a home where cancer visits with alarming frequency.  He has witnessed many things that most adults cannot even imagine.  I don't often write about him, and have tried to offer him space to be a normal teenager, independent of this oncology nonsense.  I am certain that I have failed, but I am pretty sure that he knows that I have tried.

Alex is extraordinarily independent, partially by necessity as Dan and I have been off 'cancering' with the other kids.  But in part, this autonomy is achieved by design, because our job is to make our children self sufficient.  Alex is driven, choosing an academic course load filled with AP classes, joining clubs, marching band, and varsity athletics.  Sometimes I feel like we need to tether him to us, he is so ready to fly.

As he finishes his junior year, Alex is preparing for college, although we have yet to visit any.  Demonstrating initiative and leadership, he began plans for a service project some time ago.  He is organizing a t-shirt sale at his high school, raising funds for Kick-It, which supports pediatric cancer research. His idea is an extension of a program begun at the middle school.  Alex wanted to build on this heritage of community and service.  And lets face it, pediatric cancer research is not beneficial in any sort of theoretical way for us.  We regularly engage with researchers as a practical matter at the RamerNation.

Things were going along swimmingly for Alex, until Brent was diagnosed with his third cancer in the midst of this project. I had hoped to offer Alex some help and guidance, but found that I was preoccupied with doctors, tests, and organizing what I could, in advance of the chaos to come.  

Alex moved forward with his sale with guidance from Dan, as well as some teachers from school.  The Ramers also moved forward, testing for a match and waiting for results, which is excruciating, when so much hangs in the balance.

On Wednesday, Alex was blessedly, most thankfully, found to be a perfect match for Brent.  In this case, blood is thicker than water, because a full sibling is the best accepted donor.  

Alex has just become an active participant, rather than an intimate spectator.  He will undergo more testing. He will be poked and prodded as his siblings have been.  He will spend time at the hospital.  He will spend time in the OR.  

As part of the Kick It program, the focus this year is on sibling impact.  Lauren will speak to her peers at the middle school about what it is like to witness her brother's struggle. She will also share how this has impacted Olivia and Alex.  In the very moment that she gives her speech, Brent will be in the midst of the chemotherapy regimen that will kill off his own marrow, making space for Alex's stem cells, which we pray will be accepted and grow.  She will no doubt be thinking of this process, of the importance of family.

Alex is following through on his t-shirt sale, taking orders this week, profits to benefit pediatric cancer research, hopefully finding treatments that are less toxic and less likely to cause subsequent cancers like this latest one for Brent.  I am enormously proud of the person that he is becoming.

His service project at the high school will finish, just as he heads to the OR, beginning a service project of a different kind.  We welcome your prayers.

Donations to Kick-It via Team RamerNation may be made here:  

http://www.kick-it.org/games/2015/06/kick-it-with-the-bees/team-ramernation

Alex participated with other siblings of cancer patients in a video for Flashes of Hope last year:

https://vimeo.com/108471100?from=outro-loca

Visual art and the impact of seeing it all

As another load of snow landed at my house overnight, I am not entirely sad that I cannot leave today.  I am waiting for a delivery of Interferon, which is horrendously expensive and requires a signature, despite the fact that there is no street value to these drugs.  As the snow is piled up waist deep along the sidewalks, house arrest is not exactly viewed as a punishment.


It is a pause that I am having today.  I am taking a break from the work that I have been doing, both at the hospital, as well as for our non-profit.  I am reasonably caught up on laundry and feel indulgent this morning, letting the words leak out of my head.


A few weeks ago, I began an art project, which evolved into a sort of art therapy. With a bit of medical quiet, I took a visual journaling class with Lauren, as a special time to connect with her.  I have been feeling pressure, to cram in these sorts of good things, to prepare the kids for college, to do the work that I feel passionately about, to find a paying job... The list seems endless and overwhelming sometimes.  Cancer has required a great deal of our attention, and it has not often been out of view, or for very long, evidenced by our Christmas march through radiology and surgery.


To be honest, this pressure and constant medical interruption is incredibly frustrating.  Even in the 'quiet,' there is much that needs to be arranged, planned and organized.  I am not complaining about the quiet, believe me, but I think that few understand what is involved. 


Anyway, I appreciate art, but generally consider it a spectator sport.  Dan is visually imaginative, and I generally defer to his efforts in photography, graphics and every manner of design.  I have no regrets about this, because his creativity is no match to mine.  However, after taking this art class with Lauren, I was inspired.  I explained to her that I was going to make a collage of sorts, to represent the past several years of our life in the rabbit hole--the good, the bad and the ugly.  I have things that are fair representation of each: x-rays, pathology reports, photos with friends, words of support.  There are things that represent both the hardship, as well as the help.


Not quite understanding, Lauren asked if I was going to cover a canvas in glue and dump the contents of my hospital suitcase onto it.  Well, sort of.  I had a box of 'cancer memorabilia,' for lack of a better term.


I worked through the box, looking over the various items, each that triggered specific memories for me.  As I spread it all out, and selected the most important things, the sheer number of visual representations of our story kind of hit me.  I went out and bought a second canvas. 


Evaluating the different bits, I was struck by how dark some points were.  And how lonely. And how filled with despair.  But that in those same moments, encouraging words would come, or a friendly face would appear.  In our struggle, we found connection. From our isolation, we found a much bigger world.


I am have been frustrated with our lot of late, because of the ways that cancer and that the realities of LFS hold me back.  I have felt limited, inadequate and unable to be the person that I would like to be, in many, many ways.  It has been hard.


But as I look over my art therapy project, my gaze is drawn to a hand crafted card that Brent's nurse gave to me at our lowest point, when we had two children in the crosshairs of cancer.




What cancer cannot do

Cancer is so limited...

It cannot cripple love.

It cannot shatter hope.

It cannot corrode faith.

It cannot destroy peace.

It cannot kill friendship.

It cannot suppress memories.

It cannot silence courage.

It cannot invade the soul.

It cannot steal eternal life.

It cannot conquer the spirit.

Cancer is so limited.  I really like this. 

And when I notice that the vast majority of the photos around this card are of our smiling family, even when some are bald, or hospitalized, I believe it.  Cancer truly is so limited.  And if cancer is that limited, then maybe I am a bit less limited than I sometimes feel.

A desolate beauty and the perspective that cancer offers

Today I went for a run with my daughter and the dogs.  It was cold out, a crisp winter morning, but lacking the snow cover that would make it feel overtly Christmas-like.  We are fortunate to live in a neighborhood that is nestled into the national forest.  It is truly beautiful.


Lauren and I stopped at the lake and sat for a bit in the stillness and quiet.  I thought about how different that this place feels from the summertime when the air is filled with birdsong, cicadas, children's laughter and more than anything else, the color green.


The trees seem naked and cold.  The earth is covered in spent leaves, interrupted only by brown tree trunks and frost.  It is a lonely landscape, where you can now see quite far, view the contours of the land and detect streambeds that had previously been hidden by the summer foliage. 


For some, looking upon this landscape, it would have seemed bleak and despairing---a loss. The summer warmth had left. All of the vibrancy of autumn had been stripped down. It was still and cold. But Lauren and I could look across the land and witness countless trees including some truly enormous oaks that a few short months ago were completely hidden from view.  They stood together in the denuded forest, their presence pronouncing a quiet strength, and each form proclaiming a solid footing.


I talked to Lauren about how in the bustle of daily living, you can get lost.  You can fail to see the forest, for the trees. Sometimes, you can even miss the trees for the abundance of leaves obscuring your view. 


The Ramers are having a bit of a pause right now, as we anticipate my son's surgical biopsy later this week.  It is one of those moments that your life swivels on.  Unfortunately, we have become somewhat accustomed to such moments.


As we walked back home with the dogs, Lauren and I ran into our neighbors, who we seldom see.  One is a pilot, who had reached out and generously offered his help when Brent needed to return from New York after surgery three years ago. We exchanged pleasantries, but I was suddenly struck by how large the forest is, and how numerous the trees. 


When cancer enforces a pause in life, removing all of the comfort and distraction of routine living, you can see so much farther. The forms and structures of the landscape become evident.  The character of the terrain is revealed.  And we are reminded that many surround us, who in our busy moments of daily living, we cannot see, or simply fail to notice. 


While I detest cancer, it is the vehicle by which I have seen a great forest, a community of strength, of support and of compassion. Vast evidence of love has been revealed to me in our exposed and vulnerable state.


So even in this, I find an uncommon beauty.

Mutant Mentality

I was walking the dogs with my daughter Lauren, to stretch out her sore muscles from her recent foray into cross country.

We have long been talking about being thoughtful, and developing good habits.  Mostly, these have been tangible or outwardly visible habits:  eating healthy food, exercising our bodies and minds, spending time in service to others, both in our family and in our community.  Like running, it is hard work at first.  But with practice, we do not need to think about these things, as they simply become incorporated into who we are.

Last week, however,  I spoke to Lauren about her mental habits, the ones that go beyond developing an intellectual curiosity (my kids are daily encouraged to read 'something smart' that is not covered by doing homework)  While I can check in with Lauren to see how she understood an article in the newspaper, I cannot as easily see the mental dialogue she has going on.  After she joined cross country this fall, I have gotten a glimpse of a mental muscle that needs stretched and strengthened along with her quads and hammies.

We talked about how on the back stretch of the course, when the sun is hot, the encouraging crowd is sparse and her body begins to rail against the run, her mental dialogue is, unsurprisingly, fairly negative.  She is tired, and sometimes she walks a bit.  I do not mind the walking, for the record.  But we talked about how the thoughts in her head influence her actions in those lonely parts.  In order to get better, to be stronger and to win--not the race overall, but to win the competition, the one that really matters in my opinion is the one in her mind--she needs to be disciplined in her thoughts.

Over time, repeating the affirmations ("I can do this."  "I am getting stronger." "The crowd will be around the bend to encourage me." "There are those ahead of me and those behind--I am not alone") and repeating the motion of taking one step, then another,  both of these things will become habit, not worthy of the monumental effort that is required to accomplish it now. 

Focus on the good, always.  If you focus on a problem, let it be only in order to fix it, otherwise it is wasted energy.

I was reminded of our conversation as I checked in this morning on the LFS support group that I help a friend administer.  A woman from Brazil shared that while her brother tested positive for LFS, he did not consider it a death sentence, because their mother had beaten cancer 5 times.  I thought about how many people in our group have benefitted by sharing our experiences, particularly our successes and the successes of the researchers that we deal with.

Our individual stories may be frightening and overwhelming.  But through this support group over the past year and a half, I have seen a change in the collective mental dialog.  Instead of LFS being considered a death sentence, and one to depressingly bewail, waiting for the next cancer to arrive, there has been a shift, to cautious optimism, with encouragement coming across the internet in the lonely back stretch.  The prevailing theme is one of determination, and hope.  And action.

When we give voice to our fears, we can begin to conquer them.  When we are tired,  tired of cancer, tired of fighting, we can reach out for encouragement. For compassion. For ideas.  For information.  For resources.

We have begun to change the culture, that place in our brains that focused on futility, and despaired of our 'predisposition' to cancer, twisting its meaning to become 'predestination.'  While death will come to all eventually, and cancer is likely to come to us, we are now facing it on our terms.   There are meaningful and effective things to do, both in our personal battles, as well as in our community. 

We are now doing them together.

While every day cannot be a raging success either on the mental or physical front, we are collectively improving on both, becoming stronger and more proactive.  I am proud to be part of this change.  I am grateful to be part of this community, cancer aside.

We are busy Living LFS.


LivingLFS.org

Milestones and Statistics

I haven't written in a while. This could mean that there has been so much going on medically, that I have been too busy and full of worry to empty my head here. I am most happy to report that this is not the case. 


We have had a summer. A delightful summer, with sand and sunshine, non-medical travel, time with friends and time to heal.  It has been terrific, stringing these days together, these days that were hard earned.  I couldn't possibly tell you how wonderful it has all been.  There just are not words.


Last week, Dan and I celebrated two milestones.  We have now been married for 19 years, which isn't one of those anniversaries that most people note, as it fails to end in a 5 or a 0.  But, I recognize that our relationship is nothing to take for granted, so I do note the milestone.  It is a blessing, not unlike the long summer days that we have been enjoying. 


But, like the blessing of our much anticipated summer, our time together has been hard-earned.  The stresses on our family have been great, if I might be so understated.  I recognize that cancer has forever altered what I envisioned our family.  If I were married to that vision, rather than to my husband, I would be bitterly disappointed, and most unhappy.  While I could do without cancer, I am most grateful for my husband, our children and the life that we are making every day together. It is not at all what I planned, but wonderful, nonetheless.


The second milestone happened on Wednesday, which was scan day for Brent and Lauren.  It was a long day, one that required much mental fortitude, but ended in good news.  Brent achieved 'event free 2 year survival'  for the osteosarcoma which, if you put much stock in the statistics, is a very, very good thing.  While the whole melanoma episode was quite an event, it does not factor into this equation: Brent has not had relapse of osteosarcoma for the two years since he completed treatment, which is statistically relevant.


I have sworn off statistics.  Dan and I absolutely should not still be married, if you embraced the marriage numbers.  They are pretty bad for the average couple, but are far worse for families with challenges like ours. Statistics, I have long said, do not matter.  However, I did find that I was heartened with the news on Wednesday, well beyond the whole "neither kid has cancer" notion.  I am feeling more confident as we stretch out the time between chest CT's.  I am a firm believer in "whatever gets you through." and if these numbers are helping, well, I may be a hypocrite, but I will selectively grab at the encouraging statistics and ignore the unhelpful ones.


We are in full swing now, gearing up for school which officially begins in a couple of weeks, although Alex is already gone much of the time for soccer and marching band.  I am grateful for another span of time to enjoy without much medical interruption.  Maintenance treatment for melanoma allows much time for living.  And that is what we are doing.  We are making new dreams, and alternate plans.  Different, we have decided, does not equal bad.


I am grateful for the opportunity to dream, for the relative medical quiet, for the milestones, for all of it.