Love Waves

Sending you lots and lots of love waves for a great day tomorrow!

"Me and Akemi are sending you love waves"
"Ride your bike fast"

September

Our girls are growing up so fast!

 Here are some highlights from September.

 Keira took swings at her first pinata
 





 Akemi learned how to do "So Big!"

 Keira taught her "friends" to stand on their heads

 We baked rainbow cupcakes in honor of Bodhi and Nina's 3rd birthday

 Matching pj's for the first day of fall

 Akemi learned how to fold laundry

Monday Night Football!





















Clifford turned 50!


 Akemi finally got her bottom 2 teeth!
 

  Play slideshow - 31 
View photos in flickr

PAA 2012 - Day 2 - Providence RI -- Hartford CT

"It's not an adventure until something goes wrong" -- Yvonn Chinourd

The day started out with a weather forecast that called for a clear morning with some afternoon showers.  As everyone got ready for a dry roll-out, the downpour started.  Within 2 minutes into the ride, we were soaked -- I should have opted to buy the non-cheapo rain gear ;)

We warmed up pretty well and kept a strong clip for the first 65 (out of 95) miles or so and the rain kept up on off and on, but eventually subsided for some beautiful fall weather in Connecticut (check out this guy, he looks fast):

But then the fun began ;)

One guy felt ill, got into the support car, and we pressed on.  

Then another guy 5 minutes later.

Then another guy.

And another.

Soon the field of 12 riders was down to 8, and the support cars/vans were shuttling this initial group to the hotel.  

Then as the 8 of us pressed on, we did some rolling hills, some dirt roads, hit some rain, and sure enough one by one, we started getting picked off too.  

As beautiful as these country roads were, something didn't feel right and this is where I called it quits after getting sick at about the 70 mile mark.  Big thanks to the SRAM support  crew for hauling us all back.

I got back to the hotel, showered, and slept for about 3 hours straight -- As it turns out, we think we all got food poisoning! 

In the end there were only 5 riders that were able to make the entire ride.

We are all rested now, started slowly re-hydrating, and slowly eating.  Once I did get my appetite back, I think I ate 5 plate-fulls of food (and I think I could eat more if they didn't run out).  

Rain, mud, dirt, glorious fall scenery, winding country roads, food poisoning, being picked-off one by one, and even seeing a double rainbow, the day was definitely one that goes down in the storybooks.  In his 50 years in the bike industry, Butch Balzano of SRAM Race Support said he's never seen anything like this day.

Tomorrow we will do a chill ride, maybe 30 miles just to re-group and make sure we all get back into our rhythm.

(pics complements of Jim Lehman)

Go Naveen Go!

We wish we could be on the East Coast with Naveen this week, but it wouldn't be a good idea for Keira to be on a plane with a bunch of possibly sick people.

 So... we're cheering him (and all the Pablove riders) on from California!

 We love you!

PAA 2012 - Day 1 - Boston MA -- Providence RI

Day 1 is done!  What an amazing day and what an amazing event to be a part of.  There was a lot of excitement and anxiousness in the crew as we got ready to this morning, despite the cold, foggy, and rainy weather.  We took off from our hotel to our kick-off event at the local Cambridge Whole Foods where we had some needed coffee and bagels to begin the day.  

The Pablove Foundation renewed their research that was funded last year to the Dana Farber Cancer Institute.  If you haven't donated already, and would like to see a $50K check made out to OMS research next year, please take a moment to make a quick donation: http://stayclassy.org/naveen.

We are professionally (literally) supported by a SRAM crew, fully stocked with a support van and wagon -- super nice.

Here's one of the quick breaks we took to de-layer after the rain setup (can you tell which one is me?).

And finally at the end of the day, here's my treat that I found in my bag from my girls back home!

And here was the ride report from the day -- 75 miles to get things started -- not too bad.  

Tomorrow - we ride 95: Providence RI to to Hartford CT.

Thanks for everyone's words of encouragement, support, and donations.

PAA 2012 - Day 0

The week has finally come!  It's so hard to believe that we put this ride on our calendar at the beginning of the summer and all that has happened this year since then.  Both ups and downs, but we as a family have a lot to be thankful for given where we are now.  And somewhere in it all, I managed to get some training rides in and am (hopefully) ready.

Keira and Akemi gave me a gift of encouragement before I took off yesterday so that I remember to always keep the pace up...those were Keira's actual words by the way when Crystal asked her what she wanted to tell Daddy.

I took the red-eye into Boston last night and it was a cold and rainy morning when I landed.  Not the best weather to step into when you're getting ready to be on a bike in 24hours, but we'll make the most of it (at least it's not snow).   I spent the day camped out at Google Cambridge, finished off some work and then met up with the Pablove crew and fellow riders for a group dinner.

Everyone here is riding because their life has been somehow affected by cancer.  Their kids got cancer, their niece or nephew got cancer, some are fighting it now, some have fought it successfully and are in remission, and some lost their fight.  Listening to everyone's story definitely brought back a lot of memories of Keira's diagnosis nearly 2 years ago, but more importantly it reminded me of the power of action and what we've done since then.  In that short time, our friends, family and community have taken what happened and poured out so much love and support that we are all now looking forward, not behind us.  In that short time, we helped bring together doctors and scientists for 3 days in Oxford England to build support for researching OMS.  And now, we have raised nearly $18K the ultimate goal of funding a $50K research grant for OMS.  And while it doesn't seem like much money overall, I can tell you that the awareness and momentum that we have built over the past 2 years is phenomenal given how rare this disease is.

For those of you that have supported us in any way through our journey, whether it's helping adjust your schedules so we can take Keira to her appointments, spending time with Keira on long treatment days, whether it's the words and notes of encouragement, or whether you've made a donation to OMS, we SINCERELY THANK YOU -- We are making an impact.

And if you haven't donated already, you can still do so at http://stayclassy.org/naveen 
(and I know that some of you have said that you've had issues donating.  If you thought you made a donation and didn't receive an email titled "Donation Receipt", your donation didn't go through, so please try again or let us know).

And finally, I want to thank Crystal for all her love and support throughout this year.   Crystal has spent almost every weekend for the past 2+ months holding down the fort with the kiddos while I put in the training miles.  She has supported me and the family so that we can make a difference for OMS -- BEST WIFE EVER :)

Keira's Journey

It's always amazing to us to see what an affect Keira has on other people.  She truly is one of the strongest, bravest people I know (and she's only 3!)

Below is an essay that Maya wrote about Keira.  Maya is the daughter of my good friend and teaching partner of 12 years.  We've had the privilege of watching her grow up into a mature and responsible young lady.  Keira has known Maya since the day she was born and has always looked up to her - I have to say that Maya is one of Keira's favorite people.  :)  

When Keira was in the hospital after her initial diagnosis, Maya was one of the few people who could always get her to smile.  This year Maya is in 8th grade and she chose to write about a memory she had at LPCH for her "moment in time" personal narrative essay.  We were touched by her thoughtful recount of this memory with our daughter.  

Maya did say that she used her "creative license" to make the story a bit more descriptive, but most of what she wrote was true to the moment.  

Keira’s Journey

“Maya!” Keira starts running towards me, but loses her balance and starts to tip over like the Leaning Tower of Pisa.  I run frantically forward to try and help her, but it’s too late.  She’s already sprawled out on the cold, tile floor in front of me.  As her eyes start to tear up, I quickly think of a way to comfort her.  “Whoa!  It’s ok,” I say, picking her up with a fake smile on my face.  Her face is round and puffy, and she looks like she’s going to faint any second.  My heart melts as I look into those big brown eyes.  Those knowing big brown eyes.  Knowing that something is wrong.  Something can’t be right.  And that that something won’t get better anytime soon.  

While I wait for Keira to get checked on, I decide to walk around the hospital a little bit.  The Lucille Packard Children’s Hospital seems so bright and happy when you walk in the doors, but that feeling doesn’t last long at all.  That feeling of helplessness as all of these little kids are being wheeled around with bald heads, pale and puffy faces from steroids, and IVs attached to them.  They all stare back at me with deep, hollow eyes and not even bothering to plead for someone, anyone, to take them away from this nightmare.  Being only 18 months old, Keira is one of the youngest ones with a sickness, and hers is one of the worst.  Not only does she nave cancer, but also a neurological condition called OMS (Opsoclonus Myoclonus Syndrome).  This condition affects her brain making her unable to walk, have trouble talking, night terrors, sight issues, and complete meltdowns for no apparent reason.  Just thinking about all of the terrible things that could affect her in the long run makes me want to just collapse and cry, but I know that I have to be strong for her.

When Keira comes back, she says, “Train, Maya, train.”  I can barely comprehend what she is saying, but I take a guess and say, “Train?”  When I see her eyes light up, completely forgetting where she is, or why she’s here, it actually makes me smile, no matter how much I thought that I could never smile in this place.  Her dad carefully places her in a cherry red wagon, and I grab the handle and follow the signs to the train.  I don’t know how there could be possibly a real train here, but it turns out to be a pretty big model train.  As soon as the train comes in sight, Keira scrambles around in the wagon with Brown Bear, her stuffed bear who helps her through tough times.  Brown Bear falls out of the wagon, and Keira starts to cry again, but I quickly grab him and hand him to her before this gets out of hand.  

“It’s okay, Brown Bear,” she says, patting his head and hugging him as tightly as a snake choking its prey.  “You be ‘right.  You have to be strong, like Mommy told you.”  As we start heading to the train again, I think about what Keira just said.  Did she really mean this for Brown Bear, or was she talking about herself?  Just as I start figuring out my thoughts, we arrive at the train, and Keira hops out to find herself back on the floor.  I pick her up to prevent any more incidents.  

As we walk over to the train, she wiggles around in my arms to try to see better.  I take her right up to the glass, and she breathes a sigh of astonishment and relief, as if the good times have finally come.  She just sits, fascinated for almost two minutes, and then starts whining to move on to the next part.  We go to all of the sections of the train, but she keeps wanting to go back to the train station.  Once I take her back, tears start streaming down her face like Niagara Falls and I wonder what I have done wrong.  I start to panic, and check to make sure she still has Brown Bear, the wagon is close by, and that she really did want to see the train.  

“What’s wrong?” I ask her, careful to talk slowly and calmly to not upset her further.

“Train not moving,” she chokes out between sobs.  I sigh with relief, but what scares me the most is what she says next. “Train sick like Keira.  Train no walk like Keira.  Train scared like Keira.”  Her raspy, raspy voice makes the statement all the more emotional.  My eyes fill with tears, and this time I can’t hold them back.  I turn from her quickly because if she sees me crying, me, her hero, her role model, crying, she will break down on the inside and out.

The only thoughts running through my mind keep playing over and over and over: Strong for Keira. Strong for Keira. Strong for Keira. Strong for Keira.  And as I turn to see that courageously feeble face, I realize that right now, Keira is being stronger than I am.  And that’s when my attitude, my confidence, my perspective changes.  Or maybe it’s just the button on the glass case that changes me.  “But the train is like you because even though it is sick and scared, it pushes through it and says to itself ‘I think I can. I think I can. I think I can.’”  And just at that moment, the train miraculously starts up again.  

She hears the toot toot of the train and recognizes the phrase I just said, which makes her beam with the joy of the Little Engine That Could after he finishes his journey.  

After that moment, I will always remember to be strong for her, and that kids with cancer or other sicknesses alike shouldn’t be pitied, because they don’t need that in their life.  They need more of that courage that they have so much of already.  The kind that you can never have too much of.

If you haven't yet donated... please take a few minutes to make a difference in the lives of children dealing with OMS.  All donations will go towards much needed research to discover more about this rare disease.  http://www.stayclassy.org/naveen

Colorado Friends!

Greg, Ale and Violeta were back in California and we were lucky enough to spend an afternoon together. It's amazing how quickly kiddos grow up. Violeta is getting so big! It was nice to be able to spend some time with her and also introduce our friends to Akemi.

 We're hoping we see each other again soon!

 







Play slideshow - 7 
View photos in flickr

The Final Push for Fundraising!

Since last weekend we've raised about $2000 extra dollars and are currently sitting at $15K in donations.  Crystal and I are very grateful for everyone's support and donations so far.  Thank you!

As I mentioned in my last update, our longer term goal is to raise $50K and fund an OMS research grant in the summer of 2013.  We are thrilled to be so far ahead of our fundraising goal for this ride but still feel that we can make a push to raise as much as we can towards our longer-term goals and try to be the #1 fundraiser for this year's Pablove Across America ride.

Imagine how amazing it would be if OMS, as rare of a disease as it is, is the #1 fundraising recipient for this ride, and we are close to making it happen.  Right now the top fundraiser is sitting at $18,700 and with a week to go, we still think we can get there.

If you haven't donated already, please consider supporting OMS research: http://stayclassy.org/naveen

Also, I wanted to note that we've heard from a number of you that you may have encountered issues in donating, or thought you donated but never received a confirmation.  If you tried to donate and haven't received a confirmation email with the subject "Donation Receipt" that looks like the one below, then your donation didn't go through.  Please try again and if you don't receive a "Donation Receipt" email, please email me and I'll pass it on to the organization to try and help -- and apologies for the inconvenience.

And as for my riding, I'm putting in the final training miles this weekend.  I did another 86 mile ride today with 4600ft of climbing, and I hope to replicate the ride tomorrow and do another 50 mile ride on Monday and perhaps one more taper ride later this coming week.  Wish me luck!

St. Louis Walk to Raise OMS Awareness!

A big THANK YOU to our St. Louis friends and family who came out to help raise awareness for OMS this morning.   The group met at Creve Coeur Park and walked 3.7 miles as a way to show their support for Naveen's upcoming ride and our hope to fund a 50K research grant for OMS research.

We are so blessed to have such supportive people in our lives... we couldn't do it without you!

If you have not had a chance to show your support, there is still time.
Please click on the following link
http://www.stayclassy.org/naveen

Any donation is much appreciated, it all adds up!

Fun in Capitola

As Naveen's training rides for Pablove Across America neared the big week, he had to get in more miles which meant he was out on his bike for most of the day.  As a nice compromise, Naveen figured out a route down to Capitola.  He'd leave really early in the morning on his bike, and we would leave after lunch in our car, and we'd all arrive at the beach about 2pm.

Perfect time for some fun in the sun.


Play slideshow - 18 
View photos in flickr

The 10K Challenge - Update

What an amazing weekend!

When I was planning out my rides on Friday evening, I never would have imagined that we would have blown past our goal of $10,000 so quickly this weekend.  Crystal and I are simply humbled by all your generosity and support to raise funds for OMS research.  For those of you that have already offered your support, Thank You!

As many of you know, I went to Oxford England earlier this year for an international OMS conference (a conference that we literally made happen through your donations last year for our One More Step hike).  It was at this conference that I set a personal goal to fund and issue a research grant for OMS.  We would like to raise $50,000 by April 2013 with the goal of issuing a research grant for OMS through the Pablove Scientific Advisory Committee by June 2013.

This bike ride was just the first step towards reaching that larger goal.  Although, we have already surpassed our $10,000 for the ride, we have a ton of momentum and with 2 weeks to go, we're wondering how much more we can raise.  

Right now we are at $13,100, and are the 2nd highest fundraiser for Pablove Across America!

With all the momentum, and 2 weeks left, can we get to #1?  Currently the top fundraiser is sitting at $17,800.  It's a stretch goal, but for those of you that haven't already donated, there's still time left to get us to #1 and get us that much closer to our larger goal of $50,000.  

Please take a moment to keep the momentum going: http://stayclassy.org/naveen.

And for how I fared this weekend?  Well, I thought I was doing pretty well on my climbing until I finished my ride on Saturday and saw how many of you had donated.  Clearly, this is one challenge that I wasn't too sad to lose ;)

Total Miles: 187 miles

Total Elevation: 11,653 feet

Total Dollars Raised (so far): $13,100

And here's my biggest fan, little Keira who met me in Santa Cruz with Mom and Akemi after my Saturday ride for an afternoon at the beach.

The 10K Challenge!

Friends and Family,

First off, thanks for all the donations and support so far for my upcoming bike ride to raise awareness for children's cancer and OMS.  We're currently sitting at about $7,500 in donations which is great!

For those who haven't donated yet, there's still time and in fact to make this interesting, I have a proposition for you: The 10K Challenge!

What is this challenge you ask?  Well as part of my training and preparation for the big ride, I'm planning on getting in about 200 miles and climbing 10,000 feet in elevation by Sunday evening.  So the question is, do you think we can also get to $10,000 by Sunday evening?  Please show your support and get your donations in to see if you can match in dollars what I'm planning on climbing in elevation. 

If you haven't already, please donate: http://stayclassy.org/naveen 

This evening, I already got about 45 miles and 1,500 ft in elevation.

And if you're interested, here's what my Saturday ride is going to look like:

Dex Pulse #3

Keira is truly a trooper. This past Wednesday, Thursday, and Friday were Dex Pulse #3 for our sunshine. After talking with Mrs. Louise, her preschool teacher, we opted for keeping Keira in her normal schedule with the hopes that being at school with her friends would help distract her from how crummy she felt.

 Keira seemed to do OK in the mornings, however the afternoons/evenings were harder for her. I really think that the medication just exhausts her, but with a few extra hugs from her teachers she was able to get through her days at school and we would have very mellow evenings at home with early bedtimes. On Friday night she told Naveen, "I want to go to bed. I'm not sleepy, I'm just tired."

 It's so hard to see her on the medication. She just looks drained and her spunky, happy self disappears for a few days. Thankfully our silly, talkative Keira was back in full force today... and she had lots to say! Dinner was filled with laughter and fun. Keira even taught Akemi to how to put her arms over her head for "Soooooo big!" She said she's going to work on "Peek a Boo" next. :)

After our Clinic Visit with Dr. Effinger and Dr. Twist we are moving forward with another prednisone wean this week. Keira is now on 3.34ml every other day. We're hoping to be completely off the prednisone before 2013. It's crazy to think that she has been on treatment for almost 2 years now! We were also told that Keira's 2 year MRI might be her last. As great as that would be, it also scares us to think that we aren't "watching" to be sure that the cancer hasn't returned.

Fighting OMS, One Pedal Stroke At A Time

This fall I plan to ride 450 miles from Boston to Philadelphia to raise awareness and reseaerch funding for OMS.

I’ve teamed up with the Pablove Foundation which was started by Jeff Castelaz and Jo Ann Thraikill in honor of their son Pablo who lost his battle to cancer at the age of six years old.  I met Jo Ann and Jeff in LA and they have been very supportive of our cause, and given that OMS is a paraneoplastic syndrome (disease that is the consequence of cancer), have agreed that 100% of the funds I raise through this bike ride will be earmarked for OMS research.

My goal is to raise $10,000 for OMS through the Pablove Across America bike ride.

Please take a moment to make a donation to support OMS research, to support Keira and her courage to continue to fight OMS, and all the other kids that are living with OMS:
http://stayclassy.org/naveen

I also want to mention that over the course of the coming year, we hope to raise a total of $50,000 with the ultimate goal of issuing a research grant for OMS. We are planning a number of subsequent events, including the “One More Step” hike we did last year, but have decided to hold this hike in the spring of 2013.

All the love,
Naveen