In years past, my ride has centered around Keira. I think about her struggles, treatments and battle against the chronic affliction that cancer left her with. I’m grateful for how she continues to thrive despite setbacks, but also wonder why other kids with OMS don’t do well, and why most kids who get Neuroblastoma (cancer) don’t end up with OMS. This has been my focus and inspiration for riding, for the many miles of training, the many emails seeking support from our community, the outreach to researchers, for all the time away from the kiddos...all to help us find answers to these questions.
As I started training this year, something had changed. We have evolved as a family dealing with OMS and the ongoing role it plays in our life. I couldn’t quite put my finger on it but as I thought about it more, I realized that I’m riding for more this year...
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For Keira...
For the first time in nearly five years, we’re coming to terms with the notion that Keira’s OMS isn’t going away. While we knew this was a longshot hope, we also knew that Keira had surprised us in the past, so perhaps we were hoping for a pleasant surprise. Keira wasn’t supposed to walk or talk again so quickly, but she did. Most kids don’t respond so favorably to treatment, but Keira did. Many OMS kids can’t ride bikes, rock climb, swim, but Keira does all of these things. For nearly five years now, we’ve held on to the hope that this disease would somehow burn out. But after her last relapse in late 2014, Crystal and I started admitting to ourselves the likely truth; adjusting our expectations, letting go of some hopes and beginning to accept (and plan for) the pattern of remission and relapse that we see every six months. But questions linger: does each relapse have lasting damage to her brain? What affect will treatments have on Keira’s body long-term? She still has no B-Cells, will they ever come back? And why are her symptoms seeming to appear again w/o B-Cells? Only research will answer these questions.
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For Akemi...
Adjusting my time horizon to the long-term, I’ve also started to think about how OMS has affected our family. Years ago I saw another PAA rider’s page about how he was riding for both of his kids, the one who had cancer and the one who didn’t, and how the later often took a back seat in life to all the treatments, attention, and hospital visits. What a profound statement I thought, but couldn’t relate as Akemi was so young at the time. But now as I think about how amazing Akemi has been as a little sister, how empathetic she is and how much she looks up to her “brave” big sister as she goes through treatments, and how often she has taken a back seat to OMS and how they will grow up together with this disease playing a role in both of their lives, I am compelled to ride for her as well.
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For Crystal...
The bike has been cathartic for both of us. It’s our means of helping our daughter, but it’s also our time to reflect, to suffer, to engage the soul in the freedom of flight...together. For two years, it’s given both of us a powerful vehicle to connect and engage in something that is so meaningful for both of us, and it’s been a medicine of sorts for dealing with a chronic illness of a child. But as we set our sights on PAA 2015, it’s just not in the cards for Crystal to ride this year, and while this deeply saddens me, I can only imagine how much it saddens Crystal. Managing the complicated logistics of life, sitters’ schedules, Keira starting kindergarten while we both fit in training rides has proven to be an impossibility. So for the first time in two years, I will be riding without my wife and lifelong friend as she supports our family and our efforts in other ways.
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You’ve supported us in the past. We’ve accomplished a lot together, but there is more we can do. Every year we have to turn down promising research applications because we get more than we can fund. We’ve built strong interest in the research community and with your help we can fund more promising research that may help Keira and kids like her within her lifetime.
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With gratitude,
Naveen, Crystal, Keira, and Akemi
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