Trick-or-Treating

The girls had a blast trick-or-treating with their friends. We had FIVE Elsas in our group this year! 

Earlier this fall when we were trying to decide what the girls were going to be I specifically asked Akemi first (so she wasn't influenced by her big sister) and immediately she said, "Elsa!" Keira was a little disappointed because she wanted her to be Anna so they could be just like the sisters from the movie. She even thought (for 10 seconds!) that maybe she would be Anna, but quickly decided that wasn't going to work.  :)

When Naveen got home that evening and heard their decision he said, "That's sad, who is going to be Anna then?" In unison they both said, "Mom!"

So this year our family theme was Frozen.

Naveen lucked out with an easy Sven the reindeer costume. I have to give big props to an amazingly creative mom at my school for turning some felt into a beautiful cape.

Thanks Thao, you made two little girls really happy!

  Play slideshow - 21 
View photos in flickr

Halloween Party

With rain in the forecast we were worried that the Little Stompers Halloween Parade would be cancelled. Luckily for us we were able to get a quick walk in before the sprinkles started.

As would be expected there was a class full of Elsas! And one sweet little Anna.



This was Akemi's first Halloween parade. She was a little nervous so I got to be her partner.



When we went back inside the preschool the kiddos took turns passing out treats for the goodie bags. This year Keira and Akemi made Halloween bracelets and we put them in cute little ghost bags that the girls decorated.





Of course they had fun eating all the fun food the parents brought in for the snacks party.

What a fun day!

Play slideshow - 24 
View photos in flickr

Keira and Dr. E

Keira was super excited to show her Elsa costume to Dr. E at Clinic this month.

Pumpkin Carving

We had a lot of fun carving pumpkins as a family this year. Both girls were good helpers. As you can imagine, they both had very specific ideas about what their pumpkins should look like... luckily for me daddy was able to make everyone happy! Counting seeds proved to take forever and the roasting had to wait until later in the week since it was bedtime.

Play slideshow - 18 
View photos in flickr

Apple Picking

Keira and Akemi have been learning about apples at school this fall and really wanted to go apple picking.

What a fun fall activity to do rain or shine!

We woke up to the pitter patter of raindrops and decided to grab our boots and umbrellas and head to Clearview Orchards anyway. It turned out to be a wonderful day.

We will definitely go back again next year!

  Play slideshow - 50  View photos in flickr

PAA 2014 Day 3 & 4: Houston to Beaumont (92mi) to Lake Charles (101mi)

PAA Day 3 & 4 Houston to Beaumont (92 miles) to Lake Charles (101 miles) We left Austin TX 4 days and 373 miles ago and are now just over half way to New Orleans. Along the way I've already met several amazing people, and ridden for many little warriors who have been affected by cancer, including Harper Frank, our very own Keira Viswanatha, Madison Major, and Kylie Simonds. It's definitely been a harder road than we thought, long stretches at strong pace in the hot humid southern sun, but still nothing compared to what these kids go through. OMS and Fighting Cancer We also had the pleasure of meeting Dr. Andras Heczey who is working on harnessing the immune system to try and kill cancer and also received a research grant from Pablove. Although he's not working on OMS directly, in my conversation with him, he was already very familiar with it, primarily because it represents a natural example of the human body trying to fight cancer.

While it can be a devastating disease, OMS also has the potential to unlock our understanding of how the immune system interacts with cancer, which could one day lead to developments in cancer immunotherapy.  This was also recently highlighted in an article from the Institute of Cancer Research by Dr. Louis Chesler. Thank You! Thank you for those of you that have already supported us, the momentum and outpouring of encouraging words and messages have been inspiring. We've collectively hit $30K between Crystal and Naveen and are now trying to see if we can get to $35K for the ride. If you haven't already supported us, we appreciate your consideration, and if we can hit a $35K milestone, we'll be well on our way to support research for 2015. Donate to Crystal $1K More to $15K! Donate to Naveen $4K More to $20K!

Thank You St. Louis! October 2014 OMS Walk We're so fortunate to have friends and family support us from all over the country. This year, our community in St. Louis came together to do a walk to raise money for our Pablove OMS fund.  Our community has been supportive for many years now and this year was no exception. Despite a cold, rainy fall morning, we had a tremendous turnout of about 65 people ready to brave the rain and support our cause.  And for those that showed up, it ended up being a great morning with the rain stopping and spirits lifted! The event began with a short introduction with my Mom followed by Nandini Aunti and Leena's short talk about parents with a child in a similar condition.  Many of my childhood friends, including Rishi, Sneha and Leena and their families came out to raise awareness and of course Venugopal Uncle chronicled the event.  And several others also helped prepare brunch for everyone and thanks to everyone's generosity, we believe we've brought in over $4000 through this walk! We can't thank you enough St. Louis, your kindness, generosity and ongoing support through the years for our family has been tremendous.  Thank you!

PAA 2014 Day 2: Columbus TX to Houston TX - 80 miles

PAA 2014 Day 2

Columbus TX to Houston TX - 80 miles

We woke up to blue skies and sunshine in Columbus. The temperature was cooler than yesterday and there was lots of welcomed cloud cover. After fueling up at breakfast, we had the privilege of dedicating today's ride to our sweet Keira (click on the pic below to watch the dedication).

Today's ride was filled with vistas of Texas countryside. We saw lots of cows and horses, and they were intrigued with a group of cyclists flying down the road. It was a perfect day to work in a pace line and taking turns at the front of the pack against the wind. Part of what I love about PAA is getting to know my fellow cyclists and hearing the stories that lead them to this ride.

 

As most of you know, October 2014 marks the fourth year since Keira's OMS diagnosis. She has proven to a strong and determined little girl. Keira never lets the setbacks discourage her, nor does she complain. Although we don't have the answers to OMS, nor do we know what treatment is the best for her, we do know how to ride our bikes as a way to fundraise and hopefully bring awareness to this underfunded and rare disease. The training for PAA is never easy. Our spring and summer rides are shorter and usually fun but as fall nears the intensity of our training must ramp up and unfortunately this is also when the school year is in full swing so there are lots of extra things happening with kids and work.  And while I can't say we don't ever complain but when we don't feel like we can pedal anymore all it takes is a second to think about October 2010 and the years of treatment and therapies that followed to put things into perspective. Keira has come such a long way on this journey.

Keira's first popsicle after her surgery Brown Bear (and Aunt Mary) helping K learn to take her daily medication

Going for a walk with dad during her all day infusion - usually 9-10 hours! Brown Bear and K on treatment day

Keira and Brown Bear at an MRI Keira and Dr. Effinger

PAA 2014 Day 1: Austin TX to Columbus TX - 100 miles

You're getting this email because you're an awesome person and/or have supported us in the past :) You can opt-out here.

PAA 2014 Day 1 Austin TX to Columbus TX - 100 miles It was a warm autumn day in Austin when we rolled over to Mellow Johnny's Bike Shop to kick off PAA 2014.  There was much fan fare given that this was our first roll-out and we had a special dedication to a spunky little 4 year old named Harper Frank. Harper was diagnosed with Wilms Tumor at 13 months and recently got clear scans after 3 years! It was great to meet this little trooper. We also got to meet Lance Armstrong, who said he'd ride the first day with us.  Many of you don't know this but if it weren't for Lance, we never would have gotten connected with Pablove.  Three years ago, I randomly a tweet from Lance about PAA 2011 leaving from Milwaukee to New Orleans, and that moment of chance, I learned about the Pablove Foundation, what they do for kids cancers, and Pablove Across America...the next day I wrote Pablove an email and the rest is history.  You may have your own opinions about Lance, but he has done a ton for cancer and continues to do so, and without him we may never have discovered Pablove.   Why I Keep Pedaling Today was much tougher than I thought.  We rolled through the beautiful country roads of Texas at a strong clip.  But as the day progress, the heat amplified and while I was feeling strong for most of the day, at about mile 90, I started cramping and the heat really got to me. The last 10 miles of the ride were pretty brutal as I entered the pain cave and started hoping for the hotel to be just around the next turn, and seriously considered just tossing in the towel and being bussed back.  But when I enter these states on my bike, I often go back to why I ride. When Keira was going through treatment, or begins to have a flare up, she can't not toss in the towel.  She can't just stop the symptoms.  She just has to push through, she can't just get off her bike.  And neither can kids going through any cancer treatment really.  They can't stop, so I didn't. Here's a great video that my good friend Jeff Castelaz, co-founder of the Pablove Foundation made about the subject matter as well. Evening Dedication - Zoë Slayer Through this journey we have become connected to so many people who have experienced cancer.  This past year, I had the benefit of working with an amazing person on my team at work, Peter Jin Hong. Shortly after we met, we found out that we shared a painful link, we both had special little girls who had cancer. Unfortunately, Zoe Slayer lost her battle last year and her birthday was October 17... would have been 11 years old today.  So in remembrance to Zoe and her amazing spirit, I had the pleasure of making our evening dedication to her tonight. Thank You Thank you for those of you that have already supported us.  We also hit another milestone today and I surpassed my $15K goal thanks to your support! Crystal needs $3K more to get to her new goal.  If you haven't already supported us, we appreciate your consideration, and if we could collectively get to $30K we'd be in great shape to fund research again in 2015! Donate to Crystal $3K More to $15K! Donate to Naveen $4K More to $20K!

OMS Research Update

As most of you know this past year we funded 2 OMS research projects through the Pablove Foundation. I had the opportunity to get in touch with both researchers and wanted to provide a quick update on the research projects that YOU helped fund.

Bethan Lang, MD, Oxford University, Detection of Novel Autoantibodies 

• Dr. Lang was able to combine our funding with other research funding to extend the OMS study to two years...wow!
• Post-doc assistant is already starting on some preliminary experiments, and their bio-bank already has new samples available for study
• In process of Interviewing research assistants to begin 2-year project assignment

Dr. Gregory Owens, University of Colorado, Targets of the Intrathecal B-Cell Response 

• The single cell PCR is up and running! They are now efficiently sorting cells from OMS cerebrospinal fluid (more on PCR).
• The technique being utilized here has been successful in identifying target antigens for another rare neurological disease called NMO, so very hopeful this will translate to positive results for OMS. 

Our Approach to Research

When we started thinking about research several years ago we didn't know much about this process. However, Crystal and I both agreed that we should ensure a “high bar” for scientific research. We wanted to make sure we were funneling our dollars and efforts to high quality research, with clear milestones and with peer review built into the process. We wanted there to be healthy competition in the application process and didn’t want our dollars sitting in a general research fund at a single institution or with a single doctor.  For a such a rare disease, the more open and collaborative the research the better, and many prominent OMS clinicians and researchers (Gorman, Mitchell) are in full support of this approach.

We also knew that if we started from scratch, building the infrastructure and scientific advisory committee to support such research would take significant full-time focus and likely take several years and domain expertise that neither of us had. We were lucky to have partnered with the Pablove Foundation who enabled us to ramp up our efforts to fund high quality research in such a short period of time.

Ongoing Funding

As we look to 2015, we would want to be in a position to continue funding these projects or potentially new innovative research projects. If you haven't already donated, please consider doing so on this eve of our departure for Austin so we can hit our $25K $30K goal.

Donate to Crystal $5K More Needed

Donate to Naveen $4K More Needed

Fall Fun!

I love having two weeks off in October.

 The girls and I were inspired to try what looked like an "easy cookie recipe" using orange and yellow dough...
     

it proved a little harder than it looked, however the cookies still tasted sweet so K and A were happy with the results!



We also had fun creating our silly pumpkin faces to decorate the fridge.
Some of them were pretty creative.

 

Play slideshow - 8 
View photos in flickr

Pumpkins - Half Moon Bay

We braved the traffic and headed to Half Moon Bay today for some pumpkin fun!

The girls were all smiles when we arrived to a sea of orange.

The pony ride was a hit. Akemi rode on PeeWee and Keira chose Chief.

Jim, Sumita and Kiran joined us for the fall festivities

The girls were so cute hugging each other as they went down the big slide and their good manners paid off when the attendant let them go down an extra time without a ticket.

After picking some pumpkins we headed over to the winery next door for a picnic lunch.

 Good times, good friends!

Play slideshow - 69 
View photos in flickr