Autumn Awareness and a Nutella Summer

As his nutrition lagged, I prepared protein and calorie laden shakes for Brent.  After drinking these for a while, they had understandably begun to lose their appeal. I remember once gingerly sliding a glass of "calorific goodness" onto the table next him.  I attempted to soften the chore that I placed in front of my son with an enthusiastic and overly cheerful "I love you, Brent!!"   He glanced at the beverage, raised an eyebrow at me and rather than reciprocating the affection, he replied sardonically, "I am aware."  These three words became something of a joke between us.  Lord, I miss his laughter.

September is a month filled with awareness. I could certainly use Brent's same inflection and sarcasm right about now. "Cancer?  I am aware."

The Ramers have long been "Going Gold" for childhood cancer in September, which, conveniently for us, is the same month and color for Sarcoma awareness, a malignancy that we have dealt with three different times in our children.  We can thriftily drape those gold ribbons for double duty.  In addition, the Leukemia Lymphoma Society recently notified me that September is also Blood Cancer awareness month, but I am pretty sure that this would be a red ribbon. Even so, we seem to have a good portion of our cancer awareness bases covered as autumn commences.

I have had trouble writing lately.  My thoughts and feelings are difficult to articulate, and when I do tease them out, I am reluctant to weary the world with them.  Grief is complicated.

Our summer began with a week of sketchy scans in Houston for Lauren.  Her concerned doctors ordered follow up imaging in August (which was found to be blessedly clear.) In the interval, we filled our calendar with as many fun things as we could manage, including a quiet week at the beach.  There is an unspoken urgency in our planning, both to make up for things that we were previously unable to do, and to do them quickly, before we become medically busy again.

Our summertime activities were good of course, but it was kind of like enjoying Nutella between moldy slices of bread, which is hard to stomach at times. On the other hand, if you all you have is moldy bread, slathering it in Nutella is definitely the way to go. 

In addition to some purely recreational activities, I recognize the luxury found in having time for advocacy, and the chance to bring about positive changes.  Lauren has lent her voice to organizations that she trusts and believes in: Kick It, which is now a part of Alex's Lemonade Stand Foundation, Flying Horse Farms, Teen Cancer America, Flashes of Hope.  She has spoken with folks at Rainbow Babies and Children's Hospital about partnering with them in order to make things better for teens with cancer.

In addition to doing similar work at Rainbow, I have been reaching out to national advocacy groups in order to help shape policy at FDA and NCI.  Whenever I think about how I might make it better for Lauren with her next cancer, I return to the arbitrary wait that Brent was forced to endure.  Despite relapsing in early July, he had to delay until after his 18th birthday in October to queue up for the adult CAR-T clinical trial.  He was not able to have his cells collected until mid November.  The next six weeks, spent waiting for the cells to be modified and expanded, were excruciating.  We helplessly watched as Brent got sicker and sicker. As tenacious as my son was, both the disease and the system were stacked against him. 

Lauren will be 16 in a few weeks.  I am keenly aware of this happy September event, but recognize that it might not be sufficient to her needs.  I would never wish away this time as she returns to deliciously normal high school experiences, but we know that lot can happen medically in two years. I read every day about promising adult trials, for every type of cancer. While I sincerely hope that Lauren never needs them, the fact that she is barred from until she turns 18, this absolutely haunts me.

The Ramers interviewed with a local television station back in April (Alex was not there--off studying in Australia) Fox 8 began airing the piece last week to promote their annual charity walk/run.  The 2018 Fox Trot on Saturday, September 8th will benefit Alex's Lemonade Stand Foundation. (Come on out!)

I am hoping that by sharing our story, we might encourage folks to attend the event, which raises awareness and funds for pediatric cancer research.  But also, I hope it increases awareness about how adolescents are excluded from participation in adult clinical trials, an entirely arbitrary limitation that has enormous consequences, as we have experienced.  I hope that by sharing our difficulty, we can help to change this policy.

Here is a link to the piece: Fox 8 News Story

2018 Fox 8 Fox Trot
Saturday, Sept 8
Rock Hall Plaza
7am   Race Day Registration
8am   1 Mile Walk
9am   5K Run

REGISTER HERE

If you cannot attend the race, but wanted to support ALSF, here is a link to Brent's Obituary page:

Forever RamerNation

Thank you always for your kindness and support.

Gratitude for support, balanced by a hunger to do better

I nearly forgot to post a link to the Hyundai Hope on Wheels clip that Lauren did. We shared this on FaceBook last week, but everyone is not on social media. As we travel back from Houston, where we have been shopping for clinical trials, I can finally process and put this into context.

A few weeks ago, while Lauren was doing chemo, they asked if she would be willing to share about her experience with pediatric cancer. This is the video that they put together. 

https://www.youtube.com/watch?v=5PuQDE4TyLI

Lauren really enjoyed the ceremony held at Rainbow Babies and Children’s Hospitals, where folks from Hyundai presented one of those giant checks for research.  Lauren, along with other pediatric cancer patients, were encouraged to put colorful handprints on the white car and the researcher's white lab coat.  It was a day to bring together researchers, donors and the patients that they hope to serve.

Lauren joked with Dr. Letterio that she always wanted one of those giant oversized checks, even  one written for just $5, and imagined how funny it would be to cash it in at the bank.  Dr. Letterio tucked this away, and a few days later sent the ceremonial research check from Hyundai to her hospital room while she was sacked out from chemo.  You will notice that there are quite a few zeros after the five.  We are so grateful for the generosity of this organization.

Lauren has since been talking with Kathy, the art therapist at Rainbow  Babies and Children’s Hospital on how to transform this check into a fun piece of art. Lauren wants to make it collaborative work, getting patients on the oncology floor to interact and to have the art project from these young people serve as a thank you to Hyundai.  While isolated in the hospital, it is good for the patients to connect with one another.  The art would also serve as a reminder to young people who might not have been at the event, that they do not battle this alone—donors and researcher are trying to figure out better ways to address cancer. 

I am proud of how she is forwarding several goals at once. 

Research matters, a truth that has never been more evident for our family than right now.  Brent is most fortunate that he turns 18 in a few weeks, because the clinical trials that are most suitable for his relapsed leukemia are not found in pediatrics, but rather on the adult side.  If he were closer to Lauren’s age (nearly 15), his challenges would not be limited to finding how to best deal with a tenacious cancer, but in finding appropriate trials that he would qualify for, not because of safety issues related to organ function or disease load, but solely because of how old he is.

Age discrimination takes on a whole new meaning, if you are a teenager with cancer.  

Most look forward to when their teen becomes independent and goes off to college. For years, I have been anxious for Brent to become an adult for a very different reason: so that these adult treatment opportunities would finally be available for him.  If we, as a nation, are content to spend less than 4% of the NCI budget on pediatric cancer research (which is wholly inadequate) then the very least that we could do is provide these underrepresented patients in the Adolescent and Young Adult (AYA) population access to adult clinical trials.

It has long been a double whammy for teens, being first neglected in terms of dedicated research dollars and then being locked out of adult trials, kids with their noses pressed against the glass. 

Obviously, our main goal should be to increase pediatric and AYA funding.  Our family supports various foundations like Kick-it, Alex’s Lemonade Stand and St. Baldricks’s, to supplement the paltry federal spending.  I have spoken to lawmakers about the needs of families like ours, and the spillover benefit of this research for the population at large, so that the federal allocation for pediatric research might improve.  (Alas, children do not vote.)

But a secondary objective should be to increase access to cutting edge therapies by lowering the age restrictions on clinical trials. Will Brent be significantly different, medically speaking, a month from now, when he reaches his legal majority, at 18?  Actually, with an aggressive cancer, a month could make a huge difference.  But in every other way of medically evaluating him, a birthday milestone is completely arbitrary. 

With a swipe of the pen, and an extra page of consent in the bundle of forms (for parents to sign), treatment options could open up for teenagers with cancer.  It would not cost an additional research dime.  My family does not need this regulatory change at the moment, but other families who are out of options do.  And unfortunately, even more families will find themselves frustrated by clinical trials that are tantalizingly close for their child, yet inaccessible merely for how they are written and approved by FDA and IRB.   

We thank you for your continual support over the years, for buying T-shirts, supporting various fundraisers and sending donations to cancer research organizations on our behalf, like the Cancer Research Institute which forwards research in immunotherapy. It has been so meaningful to us. 

The Ramers will soon be taking on a new role in supporting research.  Brent will be enrolling in an adult clinical trial when a slot opens.  We recognize our good fortune, that he is permitted to queue up.  Hopefully, there will be a greater recognition of this unmet need, and more pediatric trials will be funded, and adult trials will be written in an age expanded and more inclusive way.

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.

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!

http://www.a2c.org/RamerNation

Graduation

It seems that now, at every age, there is a "Graduation," marked with ceremony and celebration.  I was unable to attend Olivia's preschool graduation last year.  But, while I had initially thought that such a thing was a bit over the top, I must concede that the photos of the munchkins in tiny caps and gowns were absolutely adorable. Her eager anticipation about going kindergarten was no less than her current excitement about going to first grade. She loves school.


Graduation, pausing to note accomplishments and a time of transition, was less frequently celebrated when I was growing up, reserved for the completion of high school, and again for the completion of college.  But, while there seems to be more ceremony these days, I hope that there is equal pause for reflection.


I have often said that I would return to middle school or high school for neither love nor money.  In talking with others, there is a common memory of it being an awkward transition, of not feeling comfortable in your own skin which, in literal terms was morphing while you watched, not quite child yet not quite adult.  Never mind about being comfortable with your place in the world.  During those teenage years, the world is filled with equally awkward, morphing beings.


So, as we have recently been immersed in medical transition, punctuated by what I hope to be considered 'final exams' in the form of a broken foot for Brent and a few days later, an EMS visit to our home in the middle of the night, Brent noted that he would be going to the high school next year. I was aware of this in a rather theoretical way, having signed his class selection forms some time ago.  But as the march to the end of the school year wraps up, and his days at the middle school can now be counted on one hand, this transition has become far more real.


Last week, there was an academic awards ceremony that we attended.  I had never gone to this before, which I find curious.  Alex has always been a good student.  But early in his middle school years, both boys played travel soccer.  Perhaps one (or both) of them had games on that evening and we elected not to go.  In Alex's eighth grade year, we were in the midst of chemotherapy for Brent, and there is no question as to why we would have missed.


At any rate, this night marked the accomplishments of honor roll students and academic teams such as Power of the Pen, the math team, and model UN.  There was a string quartet and later a flute ensemble.  It was a lovely program that they put together.  Additionally, there are special awards given for art, strong moral character and inspiration.


Brent received the inspiration award, for maintaining his academic standing despite being absent for nearly half of his middle school years.  He received a standing ovation and I wept like a baby.


I think about the awkward changes that Brent has endured at a time when all kids just desperately want to fit in.  Brent went to school most erratically, attended bald-headded for a time, on crutches for two years, for weeks with a drain pinned under his shirt, and always with the determination to stay in his advanced classes, and to do the work that was required.  While his identity could not be attached to his physical form, which has morphed even more than the average teenager, he was grounded in his intellectual identity and his friendships.


I am most grateful for the environment that the schools here promote, as well as the individual families.  The middle school years, which can be fraught with uncertainty and transition have not disappointed us in this regard. Ours was filled with medical uncertainty and perpetual transition.  However, the one constant that we found, was the kindness and compassion of the community, particularly in the students at the middle school.  The teachers and the staff there have fostered an environment of empathy, and validation, evidenced by the awards given for students who serve as models of courtesy, compassion and respect


I have seen countless other examples of this.  Just yesterday, as a part of the Kick-It campaign, where individual students organize events to raise money for pediatric cancer research, a special needs student called the Chardon Polka Band to come play for the lunch periods.  They generously agreed, and there were students pushing others in wheelchairs, teachers dancing with each other, with students.  It was all fantastic.


While I would still not want to return to the awkward teenage years, if I had to, I would certainly like to do it in an environment such as this one. I think that Brent is ready to graduate from the turbulent times of the past three years.  I think that we all are. 

Less grass, less hair, less cancer

There has been much activity in our household as spring has arrived. Spring is a season of transition, as we can finally, happily, and with all hope, safely put away snow shovels and cold weather gear, after such a brutally long and cold winter.  There is what I refer to as the "march to the end of the school year" filled with band concerts, awards banquets, art shows and final exams for the older ones.  We were tested throughout the winter, but we can celebrate our success in spring.

We have medically transitioned as well, ending daily travel to the hospital for treatment and getting interferon delivered to our home where we can give Brent the injections ourselves. Wow... I have just compressed countless, horribly frustrating hours spent on the phone over the past several weeks into one sentence.  Sigh... But spring is a time to clean up the winter messes, and then move on, leaving those things behind.

Several weeks ago, we got started doing just that, cleaning up our yard.  Dan found me in the front where I was moving some bulbs and weeding the flower beds. He urged me to come to the backyard, because there was something I really needed to see.

I walked back to discover that Alex was supervising and had been giving a tutorial to Brent...who was cutting the grass.  Gratitude washed over me as I watched Brent, who was in the midst of interferon treatment, who is missing half his pelvis, who has has endured over ten surgeries in the past 2 1/2 years...who has fought hard and repeatedly for the opportunity to walk again and for the gift of being able to cut the grass.  At 14, this shouldn't be considered a big deal, but let me assure you that for those of us in this house, it is.  It was an amazing thing to see.

So, we are also busy with Kick-It, which raises funds for pediatric cancer research.  Lauren is making earrings and selling them to raise money.  Alex collected donations from businesses in the community and is doing a Chinese auction at the High School next week.  Back in the fall, Brent had committed to shaving his helmet of hair this month in support of those kids in treatment, which feels like several lifetimes ago.  I would point out that this was before Brent was once again, one of those kids in treatment. However, he has not wavered in this commitment.

Over dinner, after that long day of yard work, we talked with the kids about their projects.  I also shared news about the daughter of my mutant friend.  Lily, an adrenal cancer survivor like Lauren,  was raising money for St. Baldricks and also to honor her mother.  She grows a fantastic crazy mop of hair, btw.  In shaving it, she raised over $4,500, far, far exceeding her goal.   Brent thought this was pretty awesome.

But, Brent also wanted to DO something, to somehow earn it.  After brainstorming, he decided to offer to cut the lawn of the highest donor... BECAUSE HE COULD, which, as I have mentioned, is nothing that we take for granted here.

Last weekend, Brent and Dan went with a group of friends and their fathers to tromp in the woods and play paintball, which we thought was a great way for Brent to celebrate finishing the first phase of melanoma treatment.  He had a fantastic time, enjoying his new found mobility like he hasn't been able to since 2011.  He was moving pretty slow on Sunday.  Limp was more pronounced on Monday. Pain lingered on Tuesday.  Wednesday, back at Rainbow, we found the break in his foot.  He is back on crutches.  Sigh...

Medically, there are not concerns about this break being cancer driven, only that he has been non-weight bearing for so long that the bones in that leg are not so strong.  We will x-ray again in a month.

I asked Brent if going to paintball was worth it, knowing that he is on crutches for a bit again.  His face lit up, and he had an ear to ear grin..."Absolutely! It was so much fun, mom!"  I like that he has no regrets.  His solution to the lawn mowing prize for Kick-It?  He will cut the grass for the highest donor in July, rather than in June.  It will be no less meaningful a month later.  And I have no doubts that he will continue to work hard.  It is just what he does.

If you were interested in supporting the RamerNation for Kick-It, we would be most honored and grateful.  The grass grows high in July!

http://www.kick-it.org/games/2014/06/kick-it-with-the-bees

'Clouds' and Seasons

Today was a glorious day.  There was plenty of sunshine and decently warm weather.  It was clearly a day to get in the yard.


I have to admit that gardening, one of my former passions, has taken a hit lately. We have been in our home for nearly nine years (whoa--that doesn't seem right, but I just did the math)  We have spent most of our efforts converting grass to garden, and garden to grass.  We are perpetual work in progress.


We need to have some trees removed, which I have said is one of the least sexy ways of spending money, right behind new tires for the car, a new furnace, or a new roof.  These are expenses that no one will ooh or ahh about.  But if you fail to plunk down the cash, and it subsequently rains in your living room, well, people will notice.


There is a lot that we intend to do, with our limited time, and limited budget.  Happily, this will mean that I will be required to dig in the dirt, getting back to my roots so to speak.  While the gardens have been largely neglected by us for years, they have had the attention of the 100 pound puppy (who, now, nearing on the two year mark, is rapidly approaching the point of being simply considered a dog of questionable training...sigh... We have been a wee bit busy)


So, I was back in my element today, working the soil, weeding and moving some bulbs.  Busy hands and a free mind.




I woke this morning, hearing the song "Clouds" by Zach Sobiech in my mind.   Yesterday was the kick-off for the middle school Kick-It campaign, which lasts the month of May every year. The children raise money for pediatric cancer, devising their own fundraising events, pooling their ideas and gathering the funds as a school unit.  They see the impact of their collective effort at the end of the month, last year raising $32,000.  Pretty awesome if you ask me.


They showed our Flashes of Hope video to the school, which was hard for me, revisiting our struggle.  Children (including Lauren) gave short speeches about how cancer has impacted their lives.  And one girl got on stage to play the piano, "Clouds" by Zach Sobiech, whose story I know all too well.  The entire school joined in singing, and I had to slip out of the auditorium, too overcome with emotion to remain.  They sounded amazing from the bathroom, fyi.


In the garden today, I was working through my varied emotions. Zach, who lost his battle with Osteosarcoma last May, was an amazingly positive, generous and loving person by all accounts.  Despite having never met him, this loss, well, it lands a little too close to home for me to be at all comfortable with it.  But, I choose to be inspired, and to take the lessons that were offered in his story.


While I worked the soil this afternoon, I worked this song out of my head, one of impending separation.  It was replaced with Ecclesiastes...which Lauren had read at her great-grandfather's service not that long ago. But I tend to hear it in my mind as the Byrds sang it...all Forrest Gump like:


To every thing there is a season, and a time to every purpose under the heaven:
A time to be born, and a time to die; a time to plant, a time to reap that which is planted;
A time to kill, and a time to heal; a time to break down, and a time to build up;
A time to weep, and a time to laugh; a time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
A time to rend, and a time to sew; a time to keep silence, and a time to speak;
A time to love, and a time to hate; a time of war, and a time of peace.


I am cognizant that there is a time for every purpose, I just do not always know what season it is and that is not just because of the crazy weather here in northeast Ohio.  It would seem however, that this is the season for planting.  A time to heal.  A time to laugh.  A time to build.  A time to speak.


And always, a time to love.

A moment of Thanks and the spirit of Giving

This is the week when the seasons blend a bit, a concept best illustrated by the still life in front of my neighbors house:  A giant pumpkin covered in snow.  This same snow will hopefully hide the fact that we have been derelict in gathering up our leaves.  Ehh, those leaves will still be patiently waiting for us in March… or May, depending upon the weather and our ability to get to it.

So, Thanksgiving was a week ago.  It is probably my favorite holiday in its simplicity and pureness.  You get together with your family, you count your blessings, you eat a really nice meal with people that you love and watch a comedy together, or maybe a bit of football. Perfect and complete!  I received an email from an old friend who wondered what our Thanksgiving answers would be to the age old question "What are you grateful for?"  More to the point, what am I not grateful for these days? 

My children show No Evidence of Disease, which is something that I will never, ever take for granted, with the understanding that we will always live in three month periods of grace.  But even better than simply dancing with NED,  Brent is making strides in PT, becoming stronger and more balanced.  I am trying to do the same, both literally and figuratively. 

We have had the good fortune to have met some incredible people over the past two and a half years.  I am obviously very grateful for the medical professionals that have helped us on this journey… they are far too numerous to count. 

But outside of the medical setting,  we have met others who have used their time and talents to help make it possible for us to get to this point, or certainly make it a bit easier.  For example, pilots from Angel Flight have frequently flown us to New York.  This gift of time and resources has made it possible for Dan to conserve his sick time, saving it for chemo and our various surgeries, while Brent and I traveled to NYC for follow up appointments. This generosity and kindness has mattered a great deal to our family and will never be forgotten.

We have benefitted from other charitable organizations.  I cannot adequately express how humbling, and touching it is to have complete strangers extend such courtesy and caring to my children.  At Ronald McDonald House, which offers discounted housing near to the hospital, volunteers will play games with the kids. Some companies sponsor dinners, and their employees will come in and prepare meals for the families who spend long hours in the hospital. 
 

The Make a Wish program provided welcome distraction for Brent while on bed rest, as he fantasized about what he might wish for.  When he anticipated another long stint in a NYC hospital, he used his wish to open up his world virtually, with a laptop computer.  Absolutely everyone involved in Lauren's wish trip was incredibly kind and created an opportunity for her that we could never have, which brings tears just thinking about it.   All of this was possible with the donation of airline miles, of volunteers time, and of financial contributions by companies and individuals, none of whom know us personally.  Amazing.

Kick It and Flashes of Hope help us in a larger sense, as potential beneficiaries of research that these organizations help to provide. But in a more direct way, our children feel empowered through these charities, by helping to raise awareness, as well as much needed research dollars. 

The stylists and the photographers that volunteer with Flashes of Hope donate their time at the hospital and have an enormous impact.  They help children to feel special and capture moments of beauty, tenderness and love.  While the photos are black and white, the experience is a bold splash of color in what can be an otherwise grey hospital existence.  It is a remarkable thing that they do, and it makes a difference for children with cancer on multiple levels. We were once again touched by people who we did not know, directly helping our family

I have met scientists who dedicate their efforts to understanding cancer and genetics.  I am grateful for their curiosity and for the dogged determination that such investigation requires. Research is methodical and thus, very slow to bear fruit.  The patience required would likely disqualify me from such pursuit.

On a more personal level, our friends have been exceptionally understanding of how flaky we can be.  I have made plans, and abruptly cancelled more times than I can say.  We have failed to attend weddings and other important events for people that matter a great deal to us.  It is a journey of long suffering, and patience, being a friend to the Ramers  And we have been blessed with some amazing, long suffering friendships.

I count all of these blessings like a bountiful treasure, reminding myself of how fortunate we are.  This week, I have also had several reminders of how difficult life can be.

A faraway mutant friend messaged me as she travelled to a military hospital in Hawaii.  Her daughter, married to a serviceman, was diagnosed with breast cancer and was having a double mastectomy this week.  Her other daughter recently had two brain surgeries and she travels back to the mainland next week to manage the chemo and radiation schedule that they are still devising for her. A third LFS positive daughter, had cancer while pregnant, as did the baby. It reads like fiction, but this is LFS reality. My heart goes out to Joann Million, as nothing about what she is doing is easy. 

I thought about what I might do to be helpful. I actually have a dear friend in Hawaii that knows Tripler Hospital all too well.  However, this is because Jen is currently getting treatment there for metastatic breast cancer and is hardly in a position to help.  The Mallory's have four beautiful mutant children, which can only be a constant worry and scheduling nightmare, medical and otherwise, but a blessing nonetheless.  I very much would like to be in Hawaii, and not because it is paradise, as I teasingly refer to it. 

I learned of the passing of Jacob Tholl, a father of 5, after a 19 day struggle following an electrical accident at work. My heart is heavy as I think about how this family's holidays are so different than what they had anticipated. 

My friend lost her father after a long battle with Alzheimer's this week. While the holidays are supposed to be joyful, they can be difficult as well. My prayers are with all of these people this holiday season, the juxtaposition of struggle in its various forms against the backdrop of Christmas and tinsel.  It is hard sometimes. 

I finally managed to work out the scans for the kids.  We do not intend to spend time with doctors until January 6th. I am trying to relax, and to enjoy our Christmas without an immediate concern about cancer or major surgery hovering over it.  For the past two years, that worry hung out with the angel atop the tree, also gazing down on us, but with a far less benevolent look.  It is hard to shake that feeling that a shoe might drop, having experienced a tornado in a shoe factory. 
 

 

As I saw someone cynically point out, only in America do we gather around the table in November to express thanks for all that we have, and exactly 24 hours later learn that some people have been trampled to death in an effort to get more.  Makes you shake your head.

But also in America, the spirit of thanks bleeds into the spirit of giving.  And while everyone speaks a different love language, I believe that this time of year gives witness to a conversation that is dominated by love.

When we offer the gift of our talent, like the little drummer boy, wonderful, beautiful things begin to happen. Everyone has a talent, some sort of gift to offer: the hairdressers at the hospital, photographers, pilots, those skilled at cooking or baking, something as simple as taking the time to read to a child, or to visit with a veteran, singing in the streets if you have such inclination...the spirit of giving does not need to be commercially driven, and does not, most thankfully require money. 

It is giving of yourself. 

Once you reflect upon your blessings, think about how you might turn and transform these gifts, in order to help others.  It might be financial, it might be a service, it might be kind words. Because it is not what we have in this life that is important, but what we do with what we have been given.  I feel like we Ramers have been given so much.

I met with a hospital administrator this week who said to me, "As much as we accomplish, I learn how much more we need to do for our patients."  Rather than being overwhelmed by this notion, he was inspired.  I seek to follow this example, and to do as much as I can, with what we have been given.

And to do it joyfully, compassionately and wrapped up in love.



Should you want to help the Million family that I mentioned above with travel and medical expenses, there is a link below:  

https://www.giveforward.com/fundraiser/yf23/help-the-million-s-fight-li-fraymeni-syndrome?fb_ref=1364692&fb_source=message

The Mallory family accepts help here: http://helpinghandsforthemallorys.blogspot.com/

And finally, donations may be sent to help Jacob Tholl's family here:
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=PQFK3TDSBSN4S

 

The ribbon, this month, is gold

September is pediatric cancer awareness month. 

Didn't know?  Don't feel bad.  I have two kids who have had 3 cancers between them, and I didn't know.  But then again, I am aware of pediatric cancer every day.  I don't need to set aside the thirty days in September to think about it.  We live with pediatric cancer like some hideous knickknack that we cannot ever part with.  I am grateful for the opportunity for this monstrosity to collect dust over the next 6 weeks, whereupon I hope to put it back on the shelf until after Christmas.  Very, very grateful.

But, as many of my friends either anticipate (or dread) the pulling out of the pink ribbons next month, this month's color is yellow. (Didn't know that either?  No worries!)  Dan made a fabulous banner on his facebook page, one that I only barely possess the technological wherewithal to steal.  But I did-so, take that technology!

 

 

 

 

Hollywood and our One Hip Wonder... 

 

Dan had posted something to the effect that we do not look at statistics, mostly because we have found no comfort in them, nor have we ever found that statistics have been relevant to our experience.  We absolutely never say the phrase "What are the odds?" in this house.  With only 400 people in the U.S. with our genetic disorder, well, lets just say we would prefer to take those odds to Vegas with a five dollar bet, and come home bazillionaires. 

 

However, there are some things that statistics can help illuminate.  Pediatric cancer is rare (unless you are a Ramer) According to the American Cancer Society, 11,630 children under the age of 15 will be diagnosed with cancer this year, making it less than 1% of all cancer diagnosis. But, while that may not seem like a lot of children affected in one year across the US, consider that one in 333 girls and one in 300 boys will develop cancer by the age of 20.   

 

While it is generally understood that every cancer is different, and even within "breast cancer," for example, that there are different subtypes each carrying their own treatment protocol and different prognosis, it is not generally understood that children's cancers behave differently than adult cancers.  Also, the considerations for children are vastly different because of their developing bodies, the effect of treatment on their bodies, as well as the length of time that they will live with the unfortunate damage of these toxic treatments. But, because of how rare pediatric cancer overall is, there is not much financial incentive to develop new drugs for kids.  They get the 'hand me down drugs' of the adult cancer world.  In 20 years, only one drug has been developed for kids with cancer.

 

I am not here to complain about the system, or to bash pharmaceutical companies, who are in the business of addressing the needs of the many, and yes, I do recognize, for profit.   Because loads of women get breast cancer, there is great need for new therapies, which is why there have been advances.  Honestly, I am very glad that there is not a more market driven incentive for pediatric cancer drugs.  I am not at all interested in more kids getting cancer.  Naturally.

 

But, that doesn't mean that I wouldn't like more advances, and much more research in pediatric cancer.  Dan and I feel passionately about research, and are hopeful about the collaboration of the Children's Oncology Group, which implements research protocols at hospitals across the country.  Because, while there are enough ladies in a city the size of Cleveland to make up a decent cohort for breast cancer research at either University Hospital or at the Cleveland Clinic, you have to consider that there are not enough children in one geographical area with osteosarcoma or even a more common cancer like leukemia (ALL), to make up a proper research group.  The COG helps coordinate research protocols for children, studying the efficacy of new drugs and treatments at institutions across the country, so that together, the children make one research group.

 

I was asked by a friend about how to best support pediatric cancer.  There are loads of charities, some of which help families directly (which I will talk about at another time) and some who have a mission statement dedicated to raising much needed pediatric research dollars. Not cracking on the American Cancer Society, National Cancer Institute, or the Leukemia and Lymphoma Society, but less than 4% of their money goes to pediatric research.  These are fine organizations but because their mission statements are much broader, the kids again are lost under the giant cancer umbrella.

 

If you were interested in supporting research on pediatric cancer, you could donate directly to an institution, one like Memorial Sloan Kettering Cancer Center, MD Anderson, or St. Jude's, earmarking your funds for a particular researcher, or research area, noting your interest in pediatrics. (This is akin to buying individual stocks)

 

If that seems like perhaps too much work, to establish which institution or researcher you would like to support, there are charities dedicated to supporting children's cancer research, where you get the most pediatric bang for your buck without sorting through researchers yourself.  (I like to think of them as the 'mutual fund' of pediatric research.)  Here are a few: 

 

Flashes of Hope                             http://www.flashesofhope.org/

Kick It:For Children's Cancer        http://www.kick-it.org/

St. Baldrick's                                  http://www.stbaldricks.org/

Alex's Lemonade Stand                 http://www.alexslemonade.org/

 

We are personally associated with the sister charities Flashes of Hope and Kick It.  Last year, Flashes, whose goal is to photograph every child diagnosed with cancer, until every child is cured, raised $650,000 at the Big Shots and Little Stars event in Cleveland.  Lauren had the opportunity to walk the runway that evening and enjoyed herself immensely while helping that cause.  This year, our family's story will be featured at the event, in an effort to raise some more research dollars. 

 

Kick It, which was begun by Quinn Clarke, a boy diagnosed with rhabdomyosarcoma, began with the idea that children could raise money for pediatric cancer research by playing kickball, Quinn's favorite game.  It has expanded every year, and this year at my children's middle school alone, they raised $31,000 in the month of May.  This money, raised by children, was dedicated to metastatic osteosarcoma research in Brent's name.  Osteosarcoma, being an orphan disease, generally affecting teenage boys, is the redheaded stepchild of research, receiving very little attention or funds.  We are so grateful for those dollars being directed in such a personally meaningful way.

 

The CDC lists cancer as the 2nd leading cause of death of children, after accidents.  We are hoping to push that way down the list.  No child should ever develop cancer, and I have to believe that with the proper resources, there are bright minds that will eventually figure it all out.  We are working on helping to secure the resources for those bright minds, right now. 

 

Any help you would like to offer would be appreciated.

 

 

 

 

 

Here is something that I found on the Kick-it website written about both kids, Hollywood and Mayberry:

http://www.cleveland.com/brecksville/index.ssf/2013/06/brecksville-broadview_heights_262.html

 

 

Brent the Great, the One Hip Wonder

 

 

 

I am not terribly tech savvy. But, as there was something graphic that I wanted to share (thus saving several thousand words, if my math is right), I have been required to learn something that most would find most basic...importing photos.  Normally, I would just haul my husband in, who is my tech guy for such things, and creative in ways that I am not.  For example, I will not likely sweat, picking the font that I use, which I am told, matters.  Heck, I cannot figure out how to clean up the text on this blog, in order to have a consistent size of text from post to post.   I am sure that Dan would work at it, and make it pretty for me if I asked, but this is supposed to be my deal. I should really grow up and learn something.  I will get there, eventually.

So, I was going through our photos, which incidentally, live on our hard drive and in some place called 'The Cloud.'  I will not dazzle you with my knowledge of how these things work, because I am a little fuzzy on the details.  Just know that like so many others out there, we take photos and they generally remain in digital form.  We almost never print them out.  But, I was looking for examples that will illustrate the design process for Brent's logo.  Because if you didn't know him, it wouldn't make any sense. 

It was hard, not simply in a technical way, to look over these pictures, and to see where we have been.

This first photo was taken on the last day of school in June of 2011 at our neighborhood bonfire, which is a tradition held dear in this household.  In order to properly kick off summer, the kids go down to the park and burn their old homework assignments while the parents grill off hotdogs and such, a wonderful way to catch up with other families.  My kids save their school papers all year in anticipation of this day.  Their "burn pile" is pretty big.  There is joy in burning that stuff...victory and satisfaction, all of which is quite evident in Brent's pose.  Lauren isn't unhappy either.

 

 

 

 

I look at photos now differently than I did before.  This is a great photo, just showing the delight of some children..."No more school! No more books! No more teacher's dirty looks!"  (Actually, they enjoy school and the teachers are pretty terrific)  But, I look at this now with the knowledge of what is coming in a few short weeks for Brent, and in 6 months for Lauren.  I am a little haunted.  Can't help it.

 

 

Brent was diagnosed the first week of school that fall, and our world fell apart.  Brent was incredible, I have to say, making the best of every situation, and finding joy in the small things.  Getting discharged after another week of chemo was always cause for jubilation.  This photo was taken a few weeks into treatment, less than 3 months after the one above.

 

 

I was telling my mom, that going through the photos was shocking, in a way. Even when Brent's hair all fell out, practically overnight, for his birthday (yeah, that was fabulous timing), the physical changes were small, and we saw him daily. He was still Brent.  He continued to celebrate discharge, or as we often called it, "parole."

 

 

 

 

 

 

 

Christmas.  Lauren had brain surgery. We traveled to NYC to see about a surgery that might spare Brent's leg. While there, we visited a huge Toys R Us, which was something to see, and apparently, to celebrate.

 

 

 

Brent had his 'giant surgery,' in NYC.  And 2 follow up surgeries.  And more chemo. Time passed. The seasons changed. There is a lot covered by these spare sentences.  

 

Before Brent finished with chemo, which is an experience so isolating that I struggle to express it, Brent wanted to see his friends. It was beautiful spring day, one weekend off, so we went to a soccer game, to see his former team play. I remember him crutching down the hill to the field that afternoon (which is steep enough to be a challenge, even without the mobility issues that he had) and I worried a bit as I watched, but you have to let them stretch their wings. 

 

Brent had the best day, sitting on the bench with his team and at the end, we took this photo, which still brings tears to my eyes.  The soccer club, along with the school and the community here, have been so amazingly supportive of our family.

 

 

 

 

 

After chemo was finished, Brent had physical therapy, to try to strengthen his leg, and learn how to walk on his new hip.  He returned to school, and we tried to get back to a normal life.  We were offered tickets to go as a family to a Browns game by Angela, the Child life specialist, with other families from the oncology floor.  We had a fabulous day, enjoying some beautiful weather, doing something that normal families do, and watching the Browns actually win.  Believe me when I say that a win for the Browns is cause to celebrate, nearly as much as the day Brent finished chemo. 

 

This time Alex struck the pose:

 

 

Brent had an awesome year at school, despite missing the month of January for another jaunt to NYC for surgery to do an muscle flap.  But, as I mentioned, May was a little rough when we learned about the donor bone disintegrating, and that he might have cancer again. When we found out that the pathology was clean and that there were orthopedic options involving limb salvage, we certainly celebrated.  We were cautioned that it would not be easy, that there would be at least 2 surgeries as part of the reconstruction. 

 

Always a surprise, but a pleasant one this time, Dr. Healey told us after June's surgery that the ligaments holding Brent's femur to the pelvic bones were pretty tight and might be sufficient to walk on, even without an iliac wing.  Unsure of what Dr. Healey might do leading into the second (really, 6th) surgery, Brent asked me, if he was left with what is known as a 'flail hip,' could we call him the "One Hip Wonder?"  He was giggling like nobody's business.  But that is just how we roll here.

 

Back in New York in July, after it was determined that we would not put in any hardware, Brent and Dan came up with the following, using an image, serendipitously discovered on the internet, and the magic of photo shop:

 

 





 

 

Cancer can take his hip bone, but it cannot take his humor (or his humerus-ha!). It may prevent him from playing soccer, but it cannot stop his determination...whatever he decides to do in this life. In doing this logo, he is defining himself, rather than being defined by cancer.  It is both empowering and powerful.

 

 

 

When we had scans earlier this month, Brent and I went to the Cleveland Museum of Art on a break between appointments.  We got the call while we were there from the hospital telling us that the scans were clean.  I snapped this photo at the lagoon.  His self-appointed title is "Brent the Great, the One Hip Wonder."  Given what he has gone through in the past two years, he can be called whatever he wants.  I like it though.  I kinda like the logo, too.