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.