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.

Bald and isolated, but never alone

Cancer is so isolating. 

We lived in the hospital for many months, often confined to a single room.  Three weeks ago, only 21 days after transplant, we were finally, and most gratefully, discharged.  While we are incredibly blessed to be home, Brent is restricted from attending school for some time.  The geography may be far better, but the isolation continues.

This morning I logged into Facebook and the first thing that I saw was a video from a St. Baldrick's event in March, when we first learned that Brent would need a bone marrow transplant.  The nurses from Rainbow Babies and Children's Hospital had banded together. Thirteen of them shaved their heads in honor of their patients.  They held hands, draped in barber's capes, in an effort to raise both awareness and much needed research dollars.  That was nearly six months ago.

Over the ensuing months, we watched these same nurses work tirelessly to care for families affected by pediatric cancer. While some might argue that caring for tiny oncology patients is their chosen occupation, they do many meaningful things that are not included in the job description. It is true that these nurses are paid to care for pediatric cancer patients, but they also care about these kids.

In solidarity with their young charges, the nurses going bald that day was a visible manifestation of something that I know with absolute certainty: These caregivers do no punch out at the end of their shift and walk away from the things that they see.  They carry our burdens all day long, and then they quietly carry them home.

I am grateful that my son, after months spent in the hospital, is home. I am glad that his current concern centers on when will his hair grow back, because he is anxious to shed this latest cancer identity and a bald head tags him as a cancer patient. I measured up one of the nurse's hair in clinic yesterday while we were there, and am pretty confident that Brent will not be making an appointment for a haircut any time soon.

It is difficult sometimes, when strangers ask my son if he has cancer. (And yes, they frequently do)  It pains me far more to hear these inquiries, than when the subject of cancer was just stumbled upon. A few years ago, seeing crutches, folks would ask him if he had a sports injury. Brent would respond openly and truthfully during 'elevator small talk,' and indicate that he had no hip because of cancer. But now, when strangers ask him directly, "Do you have cancer?" he is reminded that he looks sick, in contrast to looking healthy, but perhaps just injured. We all understand that the difference in the conversation is primarily driven by his lack of hair.

Which brings me back to the nurses, who voluntarily took on this identity.  I imagine that they fielded many similar inquiries, particularly in the earlier, and much colder months.  Prior to the St. Baldricks event, they might have changed out of scrubs, and escaped their outward association with the hospital during their off hours.  But there is no escaping the bald head, the stares nor the open curiosity you witness as people try to figure out your story from your appearance. I don't have to explain this social phenomena, at least, to these beautiful shavees.

We have been so blessed in our 'adventure.'  (I am quite weary of the phrase 'cancer journey' at this point).  Because even amid our forced isolation, we have had so many reach out and reassure us that we are not forgotten. The kind words, prayers, gifts and time offered to my family have been a meaningful reminder, just like the bald nurses who came in to our room at all hours of the day and night:  We may be isolated, but we are not alone.

https://www.youtube.com/watch?v=mahNw23yL70&sns=fb

Cancer Nesting

I had finished a blog for Living LFS about how we watch the shadows, and wonder about the sharks, always battling those closest to the boat.  I thought that I would step up my game a bit, and include a stock photo of some sharks with the post, which would require tech back up from my husband or kids.

The phone rang as Dan got home, our oncologist calling with the results of the next phase of the pathology.  Suddenly, it became clear that my kid had slipped into the water. Brent is now swimming with the sharks.  The best chance that we have, is for one of my other children to help him back into the boat. He needs a bone marrow transplant to cure his latest cancer.

They are all children.

I have been busy for the past week on multiple fronts.

Medically, there was the trip on St. Patrick's Day for our family.  We went to the hospital to be tested, all hoping that one of us is the lucky Perfect Match, and can be a donor for Brent.  I saw many touching photos that day, of oncology nurses with shaved heads, raising money for pediatric cancer research via St. Baldrick's.

We had a meeting after tumor board with the transplant team, to learn about what is involved in the transplant process, which is daunting all on its own.  It also happens to be littered with potential for complications.

I have been doing the things that I know, as a veteran of four previous tours of cancer duty:  Talking to folks at each of the schools; Contacting my social worker, my case managers, the insurance company;  Notifying those who I made commitments to, knowing that I will not be able to follow through; Canceling my few cleaning clients, which had been a feeble attempt at finding work; Cutting back on interests outside of my family.  I did this all understanding that it is necessary, but not without regrets. It was not always accomplished without tears.

I reached out to some researchers that I know.  I am using every tool at my disposal.  I am following the breadcrumbs that God puts in my path.  I pray.  A lot.

I have not yet been able to open the binder we recieved entitled "A guide to your child's transplant."  My volunteer work at the hospital, which I am forced to leave behind, asked for parent input in creating guides just like this.

Over the weekend, as Brent went to the Cav's game courtesy of a dear friend, and spent time with his buddies, I cleaned, organized, and tidied...both my house and my life. Like at the end of my pregnancies, I need to have things in order before we become indisposed. I am cancer nesting.

I have a quiet in me that I cannot explain, but one that am grateful for.  We wait to learn of a match.

We pray.

We wait.

We pray some more.

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