Tuesday, June 13, 2017

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.






Thursday, June 8, 2017

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:

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.    

Thursday, May 18, 2017

What doesn't kill you...


I spent nearly two months in the hospital this year with Brent, who is thankfully regaining his strength every day. I have things to work out in my mind.  I really need to work out my muscles as well.  So, I have been preparing for a hundred mile bike ride on June 10th in support of immunotherapy.  I have been writing a bit as I train with my sister and son Alex, both who are joining me in the fundraising event. I thought this entry was worth sharing.

5/10 (27 miles)

It was a lighter day for us after the long ride, really just trying to keep our legs loose.  

I thought, with gratitude, about the scientific community working on cancer.  A number of people have asked me why I am biking for Cancer Research Institute, when we have historically been active in pediatric focused efforts, like Kick-It.   We still support childhood cancer research, which is seriously underfunded.  But as I pedaled along, I thought about Brent and his gauntlet-run through oncology over the past six years and the role that immunotherapy has played.  

Throughout, I have prayed for specific things--for blood counts to rise, for pain to be avoided, for healing to happen.  I prayed all the time.  But often, I simply prayed for guidance.  "Show me what to do, and I will do it."  

Back to immunotherapy.  Brent first had osteosarcoma in 2011, a huge pelvic tumor.  After he had his limb preserving surgery at MSKCC, he was plagued by infection, something that required several other surgeries, further hospitalizations and delays of his chemo, all really bad stuff.  A few months after Brent completed this regimen, I read an article about how folks with infection issues suffered less sarcoma relapse.  I always try to find an upside in our struggles and remember sharing this bit of information with our docs. "Good thing we were dogged with infection."  They were fairly horrified.  The correlation was there, but calling infection good, is like telling a bride that rain on your wedding day is considered good luck--cold comfort when a weather event ranked somewhere between a deluge and a hurricane blows over the reception tent.

We marched onward...and discovered Brent had metastatic melanoma. Curious about how common this diagnosis is in LFS, and desperately seeking treatment ideas, I shared Brent's struggle in Living LFS's online support group. A friend messaged me and offered to text a family friend about Brent, someone who "works in melanoma." Her family friend was Jim Allison, who is now a stadium filling rock star in cancer immunotherapy. Back then, he recommended doing Interferon just as our local team had suggested.  But if it should fail, he recommended that we consult Jedd Wolchok at MSKCC, a former colleague of his. Brent did almost a year of interferon, which is an immunotherapy drug.  Melanoma, thankfully did not return. But as a result, I began following immunotherapy researchers and reading as much as I could about this emerging field.

The most exciting thing for me about immunotherapy, is that it does not rely on p53 function to eradicate cancer.  With Li-Fraumeni Syndrome, Lauren and Brent have only one effective copy of p53. The work of detecting and shutting down a faulty or damaged cell is seriously impaired, which is why my children are so prone to getting cancer in the first place. If the immune system could be harnessed to detect and eradicate cancer, it would bypass a weakened cellular mechanism and not do further damage to that already sketchy process, as chemo and radiation are prone to do, quite indiscriminately.

Brent's melanoma treatment was interrupted by just this sort of collateral damage. He developed treatment induced AML, an aggressive leukemia that requires bone marrow transplant. We were fortunate to have a perfect sibling match and we spent the better part of 2015 in the hospital, fighting to just get to transplant and then going through that arduous process. (Lauren threw a recurrent brain tumor into our summer schedule. It is a ridiculous life with LFS.)  

Brent relapsed almost immediately with AML.  I prayed for health and ideas.  He became desperately ill that autumn, and his oncology team at Rainbow Babies and Children's Hospital tried to just get him home for Christmas. They proposed using the power of Alex's transplanted immune system, boosted with extra T cells, unchecked by any protective immunosuppression.  It was dangerous and uncharted and shockingly, it worked beyond their hopes, although Brent didn't achieve a complete response. We tried epigenetic therapy through the spring, trying to bridge Brent to a trial.   

As I pedaled along, absorbed with the twists and turns and how I came to be training for 100 miles in support of immunotherapy, I wondered if God speaks through Mick Jagger, because the Rolling Stones were stuck in my head--"You can't always get what you want/ but if you try sometimes, well you might find/ you get what you need." Like the persistent infection that nipped at his heels during osteosarcoma, Brent seems to have benefited from a stunningly aggressive case of necrotizing fasciitiis (which is flesh eating bacteria-I return to the notion that we live an absurdly unbelievable life)  This infection nearly killed him last summer.  No one would prescribe such a thing, but in hindsight, there may have been an upside: The giant immune response required for Brent to overcome sepsis seems to have finished off his leukemia. Certainly not what we wanted, but perhaps this was what Brent needed.

Brent lived an incarnation of the phrase "What doesn't kill you makes you stronger"  Trust me, administering a drug like nivolumab would be a far preferable way to achieve this immune response, than dealing with the surgical after-effects of this devastating infection. I support immunotherapy research to help scientists try to understand the mechanisms of the immune system and develop more refined therapies than what Brent has endured.  The immune system may be powerful, but current therapies are bluntly applied, unevenly effective and not deeply understood. CRI helps scientists advance this promising new field.

We will never know for sure, but as I look over the explanations for how Brent has survived these malignancies, science would point to the power of the immune system being a significant factor, although I do not question the power of prayer: a combination therapy.  

Brent gratefully remains in remission.

If you would like to help me support this research, click on the link below.  Many thanks!




Tuesday, January 24, 2017

Shaking it up

With a bit of time on my hands, while Brent naps, I thought that I would write something.  I found several empty, untitled drafts from the past two months.  I vaguely remember sitting down, but not knowing how exactly to describe what our family was doing.

In November, we successfully grafted skin from Alex and covered the large wound on Brent's back, something that has never been done before.  Alex took time from his studies at the University of Michigan to do what he was uniquely able to for his brother.  I am proud of his generosity to Brent and of the man that Alex is becoming.

While the graft has been a raging success, Brent has since developed painful lymphedema, GVHD and open wounds on his legs that have required a great deal of attention and care.  It was isolating, exhausting and discouraging for all of us, in ways that are difficult to put into words. Seeing your child in pain, unable to alleviate it, is incredibly difficult.  Causing the pain, even as we were caring for these wounds, was even harder.

Whenever I despaired, which was often, I would mentally point with gratitude to the things that were working: the absence of cancer and the success of the skin graft. I struggled this fall, trying to balance gratitude and grief. I was paralyzed emotionally, and physically weary from tending to Brent's medical requirements, discouraged without seeing progress or an end to his suffering.

I thought that I would shake things up in the new year by committing to a 100 mile bike ride that will take place in June.  The event raises funds to support immunotherapy research via Cancer Research Institute.  I registered for the race and began to train, believing that this would be good for me--mind, body and soul-- as well as benefit cancer patients like my children.

Brent's idea of shaking it up in 2017 was developing septic pneumonia, and enduring a five day stint in the PICU.

I write today from his hospital room, beginning our third week here.  My sincere hope is that we have checked the box for 'life threatening episode,' for 2017, a habit that is alarming on its own, but especially in the way that it has become routine for us.

Brent is improving slowly and we hope to return home sometime this week.

We welcome your prayers for the RamerNation, and if you were inclined, your support for Cancer Research Institute.

Tuesday, November 15, 2016

The Giving Season


Jack Frost came to our house yesterday, much to Olivia's delight.  The sweatshirts worn in the weekend sunshine as we raked mountains of leaves to the curb had become wholly insufficient. Fall has taken a turn, as the majority of the trees have shed their colors. Only a few retain their vibrant glory which was commonplace two weeks ago.

I walked with Olivia and her friend Maggie on Halloween, dressed as Hermione and Rey.  The ghosts of Elsa and Ana followed me, the princess innocence of last year replaced with more active and powerful characters. Fantasy and magic remain constant, but the fight against evil and the defense of justice have appeared.

The girls are clearly growing up, apparent in their costumes. But I was more haunted by the other memories from last fall, when Brent was so desperately ill with leukemia. Birthday season was mentally challenging, as reminders of last year's relapse continually wormed their way into my thoughts on these special days.

It is now November, the time of year when the Ramers take pieces of Alex and transfer them to Brent in ways that are in conflict with established medical practices. I pointed out to a dear mutant friend that normal people simply call this time of year 'Thanksgiving.'

While part of me feels rather snarky about this truth, it is layered with some wonder and gratitude. After donating bone marrow, then peripheral stem cells, Alex is once again stepping up for his brother and donating an impressive amount of skin to cover the large wound that remains from Brent's summer infection. This graft -this gift- is only possible because of the success of last year's bone marrow transplant.

Alex will arrive tonight from Ann Arbor, setting aside the demands of his first semester of college in order to do what he is uniquely able to do for Brent in the OR.

I have always believed that siblings are the best gift you could give to your child, never quite understanding the common worry about jealousy when a new baby arrived.  When they were only toddlers, I taught our children the mantra, "We are Ramers. We look out for one another."

It would seem that Alex took that tribal chant to heart.  While I am glad for his other accomplishments, his devotion to family is what makes me the proudest. He, quite literally, has Brent's back. 

Like with Elsa and Ana, sibling love is powerful. We fight a cancerous evil like Hermione and Rey, using the magic found in science and medicine, all of it backed with the power of prayer.

We welcome your prayers on Thursday, as we once again dive into uncharted territory.




Tuesday, October 11, 2016

Blurred lines

I recently applied for a job at the FDA, one that I never dreamed that I would want. In truth, it is a position that I probably will not get. But the Ramers try not worry about odds, and just go for it. The application asked about my advocacy experience.

My first thought was "Damn, I just had plans to go to Washington DC for that pediatric cancer rally via Truth 365 with Lauren for her birthday." Truth 365 is an advocacy group that works to change the travesty found in only 4% of the NCI research budget going to pediatrics.  I do recognize that this trip might sound like a crappy gift for the average fourteen year old girl.  The only thing crappier? That I stood Lauren up for her birthday cancer rally because Brent had surgery and a five day admission to the hospital.

It was a stellar weekend, all the way around.

But, back to my application.  I tried to remember official ways that I have represented the RamerNation.  It occurs to me that our core community is really hard to identify. Is it found in organizations that support pediatric cancer research, like Flashes of Hope or Alex's Lemonade Stand? Should I continue with non-profits focused our genetic problem, like Living LFS? Should my effort be directed toward organizations serving people with specific cancers that we have experience with, like the Leukemia and Lymphoma Society or Be The Match? The Sarcoma Alliance? Perhaps a more general cancer organization like Stand Up to Cancer, or the American Cancer Society would be more appropriate because apparently, the Ramers have an 'equal opportunity' approach when it comes to developing malignancies. But I also serve on Family Advisory Council at Rainbow Babies and Children's Hospital to address the more immediate practicalities of hospital living, which has nothing to do with cancer whatsoever.

While all of these relate to some facet of our identity and each addresses issues that we care deeply about, no single organization is adequate to represent our family's needs in total.  No official group has a platform sufficient for all that I have to say. Like an awkward teen, I joined a bunch of cancer clubs, trying to find where I best fit, and where I might be a clear voice for my children.

Rather than finding my place in a chorus, I find that I am more suited to singing solo.

I sought out our elected officials while in Washington DC in May, to speak about how children with limited treatment options ought to have access to adult clinical trials. I didn't represent any organization officially.  I was just a mom, sharing our personal experience, and our needs.

I recently attended Cancer Research Institute's Patient Summit in NYC, dedicated to immunotherapy, something that I have been following with great interest for years. Researchers are developing safer and increasingly more effective approaches to cancer, harnessing the immune system to treat various malignancies. Traditional chemotherapy and radiation are genotoxic.  With LFS, we have rather questionable DNA to begin with and don't need to add insult to that injury.  I spoke with researchers, of course mentioning LFS, the array of diagnoses that the RamerNation has faced, as well as the potential of immunotherapy for children. Advocacy lines in these situations can seem blurred.

A few days later, I went with my friend to her oncology appointment at Memorial Sloan Kettering, and witnessed in someone else how the lines become blurred for the greater good. Gabby advocated for herself as her treatment plan was sorted out, for her local community as changes in hospital formulary were enacted because of her efforts, and for the overall LFS community as her physician outlined a potential research study for early detection of cancer. This all occurred quite informally, while Gabby sat on an exam table in a hospital gown. As she talked with her oncologist, who is an influential doctor in an influential institution, I saw her passion, and heard her speak for our community, echoing a sentiment that we have held privately for years. "If you fix mutants, you fix cancer."

It was powerful, but nothing that you can easily put on a resume.

Lucky for me, I don't actually need a resume for the position that I currently have: I advocate for my children and for the various communities that they belong to.  Advocacy doesn't require rallies, titles or fanfare. Like Gabby and so many folks, I just see what would be helpful, and talk with those who could make these things happen.


Wednesday, September 7, 2016

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.