Keira on skis!

We spent ski week in Park City this year. Keira was excited (and a little nervous) about taking her first ski lesson. We were so proud of her determination... she improved quite a bit in just a few days!

Here's a little video of her three days on the slopes.

Park City

We had a blast during ski week this year.  Naveen loaded up the Volvo and we made our way to Park City for some fun in the snow.  We drank lots of hot chocolate and went sledding every day! Keira had her first ski lesson, and Naveen and I got in two days on our snowboards!

 

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Valentine's Day 2014

The girls woke up to Hello Kitty balloons and donuts from dad!
Not a bad way to start your day.


 Akemi spent the day with her best bud, Cyrus.

Keira had a blast at her school party and came home with quite the bag of goodies.

 Hearts were the dinner theme - pizza shipped from Lou Malnati's, strawberries and a big cookie!

 


Love my family!  Happy Valentine's Day!

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Nursery Rhymes by Keira

Keira is learning Nursery Rhymes at school this month!

We've been reading and singing Nursery Rhymes at home since she was a baby, but of course she is much more excited about it now that she's doing them at school with her friends.

Here are the two she brought home today.

2014 and the Road Ahead

Thank you for an amazing 2013!

2013 was an extremely successful year thanks to you, our community of friends, family, and colleagues who have provided love and support for our cause throughout the years. We remain amazed by how many of you continue to encourage us, help us, and inspire us with your words and actions.

All of you are part of our journey now and we cannot be more grateful for that. And what we have achieved together is quite amazing...we’re happy to report that in 2013 we surpassed our fundraising goals of $100K!

We also want to thank Jo Ann Thrailkill, Jeff Castelaz and all our friends at the Pablove Foundation for the love and support they've provided through the years. This passionate and dedicated group of individuals has provided invaluable guidance through our journey.


While there is still quite a bit of work to be done in 2014 to try to award an OMS research grant, we thought it appropriate to look back to where our journey started, and celebrate the events, people and memories.

• October 1, 2010 - Keira diagnosed with Neuroblastoma/OMS; the rare cancer/autoimmune diagnosis that changed our lives forever. We saw her begin to fight a battle that no child should have to fight
• October 29, 2010 - Keira miraculously starts walking again, something her doctors didn’t expect her to do for several months
• October 15, 2011 - First OMS Hike, commemorating 1yr from diagnosis - raised $12K
• February 2012 - OMS conference in Abingdon England (funded in part from the hike)
• April 2012 - Partnered with Pablove Foundation with the goal of funding an OMS Research Grant
• October 2012 - Naveen rode 400+ miles from Boston to Philly in Pablove Across America - raised $30K

And onto 2013…

April 2013 - One More Step Urban Hike, San Francisco - $20K Raised
We had a beautiful day in Golden Gate Park in San Francisco celebrating our community of supporters and raising awareness for OMS. Keira was also pretty happy to have all of her friends come out and hike with us and celebrate at Park Chalet afterwards.

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October 2013 - Pablove Across America, San Francisco to Los Angeles - $45K Raised
What an amazing event where Crystal and I, along with good friends Brian Kemler and Gautham Iyer rode 500+ miles from San Francisco to Los Angeles. We were grateful to have Brian and Gautham on our team dedicating so much of their time to fundraising and training for the ride.  We shared many long miles on the road with fellow Pablove riders, connecting with their stories and the “rolling hope” that this event provides to families who have been touched by cancer.

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November 2013 - Kuchipudi Dance Academy Event, St. Louis MO - $15K Raised
A big thanks to the Kuchipudi Dance Academy, our community of friends and family in St. Louis, and to my parents for organizing this amazing event and donating the proceeds to the Pablove OMS Fund. Our hearts were touched by the generosity and the graciousness of all the organizers. I was able to attend in person to participate in this amazing event and also share Keira’s story and that of our journey.

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Update on Keira

Through the past 3+ years, our little Keira has courageously battled through all the challenges of Neuroblastoma and OMS, and her battle continues. Keira has been off of her Dexamethasone for about 4 months now (this is the steroid pulse that suppresses her immune system).  We didn’t know it at the time, but a week before when we left for PAA 2013 in October, we gave Keira what hopefully was her last dose of Dex. This means that she has been receiving no treatment for OMS for 4 months. This seemingly momentous milestone was tempered by the anxiousness of the uncertainty around how her body would react. The hope is that the antibodies that cause OMS have lost their ‘memory’ but as we know, ongoing flare-ups and relapses are fairly common.

While we haven't noticed any motor or coordination issues in the past 4 months, recently, we did begin to notice a fairly dramatic shift in Keira’s personality and mood. Almost anyone who has met her knows her to be spunky, bright, energetic, adventurous and outgoing. However in the past month or so, we noticed her being much more withdrawn, less engaged, less confident at school and at physical activities, and more varied overall in her mood. Initially we were thinking that the variability of the holiday schedule and perhaps natural developmental changes of a 4 year old might account for such a personality shift, but after consulting with Keira’s psychologist, we’ve learned that such dramatic shifts aren’t typical.

We also know that behavior, mood and sleep issues are all symptoms of OMS so seeing this change is unnerving. The team at LPCH (PT, OT, Speech, Psych) have extra eyes on her development and we are closely monitoring her at home and school as well. This is unchartered territory for Keira and although we hope that this is not the start of an OMS relapse it has certainly prompted us to start discussing the possibility of what our next steps might have to be with her treatment.

Right now we all agree that we need to give Keira the benefit of time to see if things settle down. We’ll be evaluating her in about a month.

Looking ahead into 2014

Grant Applications
We have raised over $100K in our Pablove OMS Fund and are shifting our focus now towards engaging with clinicians and researchers to applying for a grant. Our target is to award a grant this summer, however we will need to do a tremendous amount of advocacy and marketing of the availability of our OMS Fund to get enough grant applications to ensure that we have a high quality pool to choose from. We already started sending out a 2-pager in the fall of 2013 in anticipation of being able to fund a grant this year, but we will continue to encourage researchers.

Abingdon England
A key event that we hope will be a catalyst to the grant process is the upcoming biennial OMS conference in Abingdon England (just outside of Oxford) in early February, which is the largest gathering of OMS researchers and clinicians worldwide.

It was this event that I attended two years ago and was heartened to see so many compassionate doctors in attendance but disheartened to feel that the lack of funding was gating progress. Here we are two years later, and we hope to change that equation with our OMS Fund. I will be advocating for grant proposals this year and also encouraging researchers to think long-term, as we will continue to raise funds for OMS so as long as good scientific research is being conducted.

Our little Zebras

This journey has connected us with so many people whose lives have been scarred by the effects of OMS and/or Cancer. And as I type this post and get prepared and packed to head out to Abingdon England in a couple of days, I can’t help but think about all of those families and their little warriors fighting battles that no child should have to fight. I wanted to thank all of those families who have shared their stories, shared their scars, and shared their inspiration with us throughout our journey. From families dealing with OMS, to those that share the Neuroblastoma bond, to those who who have been affected by other Cancers. As I type this, some of our little warriors are doing well, some are still actively battling cancer and/or OMS and some have turned into angels even just this past month. They are all battling rare diseases and it is for these little zebras that we continue to forge ahead.