A Friendly Stroll

Naveen and I continue to be humbled by the love and support of our community. 
Keira has the BEST friends a girl could ask for! 

A Message from Sharleen, Maddy's mom:

Hello Friends and Family-

As many of you know, Keira is one of her best friends. She has literally been friends with Keira since the age of 4 months.  Keira and Maddy met at the home day care ran by Emy, then followed each other over to Little Stompers (attended over 3 years) and now they each attend their own schools.  While they don't see each other every day, Maddy considers Keira to be her best friend. You should see the way these two interact with each other.  They laugh, sing, dance, at times bicker like sisters, but always love to hug and pick each other up (well Maddy picks Keira up).

Now that Maddy is 5, I took the time to share with her about Keira's sickness. While she doesn't fully understand, she does know we can help find a cure by raising money.  Maddy's school is having a Walkathon next Sat and instead of donating to her school (we will make a separate contribution), we thought it would be the perfect opportunity to walk for Keira.  Therefore, we set up this donation page through The Pablove Foundation.  Maddy and I will still walk the field and count her laps.  I told her she has to earn this money she is raising for her friend.  

We are excited to see if we can hit and exceed our goal of $1000!  

A Message to you from Maddy:

"My best friend is Keira. She has been my friend since I was a baby and I am 5 1/2 years old.  Keira is strong and funny and needs our help.  She has a sickness that is in her body. I am raising money to give to all the doctors who can go and research to find a cure for her sickness called OMS.  

I will be walking with my mom around my school field.  I promise if you donate, I will make you proud with all the laps I walk next weekend.

Please make a donation on my behalf.

Thank you for your support! I love Keira and will do anything to help her stay healthy.

Madison Ann Young
Age 5 1/2

PAA 2015 - 1 week to go!

One week from now, we will be on the eve of PAA 2015!

Every year has it's ups and downs in training, fundraising, and life ... and every year for the past four years, this time of year holds special meaning. Summer gives way to Fall (or in CA, extended summer), the anticipation of riding hundreds of miles brings nervousness and excitement, and being childhood cancer awareness month makes it that much more meaningful. But also, in a couple of days we'll be upon Keira's 5 year anniversary of being diagnosed with Neuroblastoma/OMS...this fact alone is the most sobering ... and for me inspiring to do what I do.

Team V sits at $29K on a goal of $40K, and we have a week to go 'till we roll, I think we can do it. This year, I'm grateful that my friend and 4yr PAA rider Bill Begien is joining Team V and riding PAA for OMS this year. It's an honor to have Bill on our team and also has personal meaning as we both rode PAA for our first time in 2012 from Boston to Philly. For me that was such a crazy time with so much uncertainty ahead...it was the first big ride I had trained for, I was away from the girls for a week, we had just had Akemi and Keira as still on active treatment. The crazy idea that we could somehow raise $10K that year for OMS kept me going. We ended up raising $30K+ ... totally blew me away, and Bill was there for that, and I'm glad he'll be joining me this year ... and blocking the pacific headwinds for me as well ;)

Also I'm grateful that my good friend Eric Cattell is joining Team V on his first PAA to raise money for OMS. Training and fundraising is hard, so putting in the hours on the saddle, asking people for money, and dedicating so much personal time to our cause, especially with a family is something I'm very thankful for. but it would be impossible without the support of his wife Maggie so big thanks to you and Spencer, for supporting Eric throughout this training year. I'm also looking forward to drafting off of Eric as well ;)

And speaking of family, a big thanks to Crystal for whom this ride is going to be bittersweet. We just couldn't fit it in with our life, work, and kid schedules to have both of us train. I know she wants to be on the road with me, but she's been beyond supportive at home, taking over school drop-offs/pick-ups, letting me train, and complain about all sorts of first world problems while being the foundation of everything.

So with a week to go, if you haven't already made a donation, please consider doing so, either to me (http://classy.org/naveen), or either of my fellow Team V riders, Eric (http://calssy.org/ecattell) or Bill (http://classy.org/beej2015).

Here we go again...

I never know how to share news of an OMS relapse because I know that everyone is hopeful that Keira will live a life free of OMS, that whatever treatment she has recently had will be the one that works.

Sadly, that has not been our reality for the past 5 years. We live life trying our best not to think about relapses, trying not to worry if subtle things are signs that the OMS is back and for the most part I think we do a good job living and loving life. We had a good stretch. The ritux + dex pulse we did last December/January gave us 9 months. It was wonderful, but in other ways it makes being back here even harder. We were almost to a place where OMS was a distant memory...

There have been subtle signs that her OMS is active again for the last 1-2 months, however the last 2 weeks we've seen a regression that was seen at home and at school. Physical therapy confirmed her balance is off. Her B-cells are back in the normal range. Thankfully, Dr. E doesn't want to take the "wait and see" approach this year. We've seen this pattern one too many times to not take it seriously and treat Keira now.

The timing isn't great with Pablove Across America leaving Los Angeles on Monday, but this is exactly why we ride and push so hard to fund research. I will be at LPCH with Keira for the day long treatment this coming Friday. She will also start a 3-day steroid pulse that will last until Sunday night. Depending on how she's feeling I hope to drive down and meet the Pablove riders at one of the hotels so that I can still help support the riders the second half of the week.

To add to our stress, we also found out that our beloved Dr. Effinger took a position in Atlanta, Georgia and will be leaving LPCH next month. She's been with us since those first days in the hospital before we were officially diagnosed and has become a part of our family. While we are happy for her this is a huge loss for our family. We are grateful that she is here for the next month to help formulate a plan and transition us back to Dr. Twist before she leaves.

It's so crazy how quickly life can change.

As always we appreciate your love, support and ongoing prayers for Keira.

 

Sleepover!

These kiddos have been friends for most of their lives.

What a special treat for them to have a sleepover together. The night started out with pictures for little Dylan who wasn't there for the sleepover this time. Then dinner, a night walk and a movie in their pjs.

All six kiddos fell asleep and stayed asleep until 6am!

Penguin of the Day

This cutie was the Penguin of the Day!

She said she was a little nervous and a little excited when her poster was pulled to share.
Fun kindergarten memories!

 

Happy Wedding Day Dr. E!

The one and only Dr. E got married today!

We wish her a lifetime of happiness and hope that she had the best day ever. Keira and Akemi were excited to make special wedding cards to give her at our last visit.

Keira had a lot of questions about what she might be wearing and put a lot of thought into her hair, shoes and flowers. I personally like the teal heels.

Akemi's picture was full of colors and detail as well. If you look closely you can see that Dr. E is outside at sunset and there is some lightning in the background. The hearts on the right are to show all the "love" and that fancy rainbow/blue veil.. well that's all Akemi.