Any Hope Will Do

Naveen's dad wrote the lyrics to this song and practiced singing it with the girls while we were on the bike ride. They performed for us when we got home. What a sweet memory, singing with Thatha.

I closed my eyes
and started dreaming
Maybe day dreaming
Any dream will do

Far far away
Someone was crying
But the world was ignoring
Any hope will do

I still have faith
in fellow humans
in loving and caring
oh yes yes I do

And in this world
They are still waiting
Faithfully hoping
Any hope will do

It's my Dharma
It's my duty
To lend a helping hand out of love
To help the less fortunate and not abandon them

Open my eyes
Back to the real world
And saw hope glimmering
And some smiling too

Yes you and I
Let us be their light
And be their hope too

Any dream will do

Any hope will do

PAA - Dedication to Keira

An update from the road. Yesterday we rode 110 miles through Yosemite valley and dedicated the ride to Keira and kids and families fighting OMS. It was a long, grueling day but a day that we as parents choose to endure. Kids with OMS don't have a choice, their strength in fighting this disease comes not from choice, but from the will to just be a kid. It's humbling to reflect on this during these long days while we ride. Check out our dedication video below.

Also, as a team Crystal and I (and our friend Eric) are just $5K away from funding another OMS research grant thanks to your support! If you haven't donated, please consider doing so, we can literally fund another project with your support (100% of your donation will go to research).

Donate to Naveen

Donate to Crystal

With love and gratitude, Naveen, Crystal, Keira, and Akemi

Pablove Across America: East Bay to LA

Why We Ride

On October 2 2016, we will begin our 600 mile bike journey from Oakland to LA. On October 2 2011, our daughter Keira, at 18 months old, began her journey as a cancer patient, being diagnosed with a frighteningly rare cancer (Neuroblastoma) and autoimmune (OMS) diagnosis that had nearly crippled her. This began her long and arduous journey, first to treat the cancer but then combat the autoimmune disease that it had triggered, which was attacking her brain and central nervous system. Now at 7 years of age now Keira has endured more adversity than most of us will in a lifetime. And while she's doing relatively well, OMS is still very much a persistent part of our lives as we constantly surveil for symptoms, balancing on the edge of normalcy and signs of relapse, treating aggressively and managing the risks and side-effects of treatment.

While our journey pales in comparison, on October 2, we will our Pablove Across America bike ride to raise awareness and money to fund badly needed research for OMS and Neuroblastoma. We ride for Keira and her ongoing battle to just be a kid, for her little sister Akemi who bravely and compassionately stands by Keira’s side, for all the children with OMS and their families that walk this uncertain path, for the parents who fight tirelessly with insurance companies who deny treatment and conveniently hide behind ‘lack of evidence’ as their excuse, and for the few researchers in this world willing to try and build a body of knowledge around a disease that won’t fetch any headlines and won’t fetch massive attention for their institutions.

What is OMS?

Opsoclonus Myoclonus Syndrome (OMS) is a neurological autoimmune disease similar to MS that is triggered by Neuroblastoma (cancer of the nervous system). It affects 1-in-10-million children, it is extremely rare and designated by the NIH as an ‘orphaned disease’. Some children have significant physical and cognitive deficits, requiring special assistance throughout their lives, other children do relatively well, and yet others live normal lives but in the blink of an eye can suffer from massive relapses years after seeing any symptoms. Keira has teetered between doing relatively well but has had 2-3 relapses a year which require aggressive immunosuppressive treatments to try and limit neurological damage. We know very little about this disease, which is why we desperately need to fund research.

What’s being done

When Keira was diagnosed, there was no active research in OMS. Since then, through the support from our community and he Pablove Foundation, we have funded 4 OMS research grants and renewed 3 of them. These projects are focusing on using different methods to find the elusive antibodies or biomarkers linked to OMS, which would help with better diagnosis, insurance claims, and more targeted treatment development. But there are always more promising ideas that need attention and early stage research could unlock more questions than answers. Which is why we continue to ride to raise money for ongoing research.

OMS Research is Important for 3 Reasons:

OMS is a complicated disease, but here’s a reminder of why research matters:

(1) Understanding which antibodies are attacking which targets in the body will be life-changing for the diagnosing and treating OMS. This can help kids and families within their lifetime

(2) Early research insights could help shape future studies. Given how little OMS has been studied, early findings could reveal new directions and leads for future researchers to follow.

(3) Understanding the mechanism driving OMS could ultimately lead to breakthroughs in diagnosing and fighting the cancer that triggered it, an area of cancer research that is receiving a lot of interest right now.

Forever Grateful

For all of our supporters and donors, friends, family, colleagues, fellow hikers and riders we’ve met along our journey, thank you. Your support alone is what has gotten us this far. Unlike other diseases, that receive funding from the government and pharma companies, OMS and other rare diseases get nothing.

Thank you for getting us this far and as we ramp up again, we would be forever grateful for your support (and 100% of it goes directly to research)!

Happy!

RJ is the best! This is one Little Stompers tradition that I LOVE!
How can this video not make you HAPPY!

Akemi's End of the Year Performance - Little Stompers 2016

It's hard to believe Akemi is going to be a "big" at Little Stompers next year!

She was very excited about her end of the year performance this year. She asked if I was going to "do that thing so I can watch myself on TV"... so here it is in case you want to watch her performance too! :)

Balancing Act - A Mother's Perspective

Life is all about balance.

Once you become a parent you begin to learn how difficult it can be to balance all the things in and out of your control.

For the last few months we've been watching Keira closely for signs of a relapse.

Little things will happen that take us back to when we were in the worst parts of her treatment. We've learned how to cautiously keep moving forward, living and enjoying life as best we can, but it's hard to completely put it out of your mind.

Then more little things happen.

Other people start to see/notice things.

Even Keira will mention things.

One night at check-in Keira told me that, "when I close my eyes, my brain won't stop spinning." She also casually observed that she's been getting a lot of bumps and bruises lately. Our whole family re-adjusts and does our best to keep moving forward, but we've been here before and know that we will need to make a decision on treatment yet again.

For the moment that means a steroid pulse. Keira is two doses away from being done with yet another dex pulse. I stayed home with her today because day two is always the worst for her. She never complains but she just asks for extra "love". We know that the steroids will help her feel better and make the symptoms go away. We don't know if it will truly arrest the OMS antibodies from attacking her brain. That's what keeps us up at night. That's why we haven't slept well in almost six years, but there is nothing we can do except raise money for research.

I'm not trying to be overdramatic but I actually HATE fundraising.

It's awful asking our family and friends year after year to donate to this cause but my fear is that if we don't continue to do so no one else will. There have been plenty of other children diagnosed with OMS since Keira's diagnosis so you'd think there would be lots of families ready to fight for research that might change their child's future.... but sadly that's not the reality.

Naveen and I both work. We don't really have the time or energy to organize and train for all these events but not doing it means giving up... how can we give up on our seven year old?

Mother's Day Gift from Keira

Keira came home from school Friday and hid her Mother's Day present from me.
She was so excited on Sunday morning for me to open this adorable envelope she drew of the three of us. She said that I was jumping because I was really happy. :)

Inside the envelope was this sweet writing... I love that last line,
"Thank you Mother for having my sistr"

My gift was her blowing me kisses! This should definitely be in a frame.

Mother's Day Breakfast

I always love the Mother's Day Breakfast at Little Stompers.
Mrs. Louise and children do a fabulous job spoiling us.

The children brought out all the supplies for our yummy breakfast.
Then each child spoke about their mom.



The whole group sang two really cute songs.


Of course they made us some darling gifts.

The mother drawing/writing is a favorite part of this special day.
I love my fancy dress, shoes and curly eyelashes!




Akemi gave me two fancy new necklaces. I remember getting my shrinky dink necklace from Keira three years ago and now I have one from Akemi too!



She also made me a cute jewelry box to keep my necklaces safe in as well as super cute "Owl always love you" handprint keepsake.



What a great start to my weekend!

Barnyard Moosical

We're so proud of our FUNKY CHICKEN!

Keira has been singing the songs for weeks and we can't wait to see her evening show tomorrow night! I was able to attend their first show yesterday during the school day and the kids did great. More pictures to come.

Spring Sing Along

We always look forward to these performances. Akemi was excited to be one of the big kids this year. She's been practicing her songs at home for the past two months and was very happy to have some speaking parts too!