Wilms' Tumor Symposium (Friday)

You are probably wondering where I have been lately.  Sorry for the blogging lapse.  Life has been crazy and I am still just processing all that has happened.

I just returned from a trip to LA.  I know, quite the jet-setter.  I wish I could say it was for some great vacation, but actually it was even better.

The Pablove Foundation was hosting the first ever Wilms' Tumor Symposium. Jeff and JoAnn Castelaz started this foundation after their 6 year old son, Pablo, lost his battle with Wilms' tumor in 2009.  Their mission is to fund research, empower families, and improve the lives of children battling cancer.  They have a accomplished so much in such a short time, but this past weekend tops the list.


I flew out to LA on Friday.  I was greeted by the perfect CA weather and checked in to one of the poshest hotels in the country, who so graciously offered rooms to all of us for next to nothing.  As I settled in that afternoon I had no idea what the weekend would hold.

It all began Friday night.  We had been told to meet in the lobby where a bus would whisk us away to Sunset Blvd for a cocktail party reception at the home of Pablove and Dangerbird Records. (Compared to my normal Friday night in my pjs on the couch playing WordsFree with my hubby on our itouch's- a whole 'nother ballgame! The kind that requires a dress, heels, and shaving your legs!)  As we arrived in the lobby, I came face to face with other Wilms' families for the first time.


When your child is diagnosed with cancer one of the first things every parent does is "google".  We want to learn as much as we can, as fast as we can, and find other people in our shoes.  We ache to know we are not alone.  With the growth of Blogger, and CaringBridge, and listservs there is a community at our fingertips wherever we may find ourselves. For those fortunate ones, there is a group we can turn to for support, encouragement, advice, and understanding.  In the Wilms' world that group is the ACOR Wilms'-Kids.


As I walked into the lobby I came face to face with people whose stories I knew well in print and pictures.  It was as if they had stepped right out of the computer screen.  We all began chatting instantly.  I finally met Eve's parents.  They live only an hour away and we meet for the first time on the other side of the country!

As we climbed on the bus for the first event of the weekend, we came face to face with Dr. Dome.  For those of you in the Wilms' world, he needs no introduction.  Dr. Dome is the premier Wilms' doc in the world.  He is the go-to man in every tough case, the final word on protocols, the chair of the COG board, and the top mind in our field and there he was sitting in the seat in front of me on the bus.  He was the most friendly and personable man you could imagine.

As we arrived at the party, the introductions and sharing continued.  Everywhere you looked there was someone else to meet and hug.  The hugs from another Wilms' parent speak a thousand words.  If nothing else happened the trip would have been completely worth it just to be able to wrap your arms around the people who have walked this road with you.  There were many parents of angels in attendance, too.  I was so glad they had decided to make the trip.  I cannot even imagine how hard that decision must have been. It was so great to be able to hug them in person.  Jeff welcomed all of us to LA and shared some of Pablo's story and his vision for their organization.

Then Hollyn spoke.  She is an amazing 10 year old and 3X cancer survivor!  She shared her story with the group and touched every one of us with her maturity and courage.  Then we heard Erin's story.  Erin was treated at the age of 3 in 1986.  She shared with us her journey to adulthood as a Wilms' survivor and her challenges with her health and long term side effects, as well as psychological and emotional challenges.

Erin and Hollyn

There was not a dry eye in the house. As we looked around the faces in the crowd it really started to hit everyone why we were all there.  All of our children are facing this monster called cancer.  We were all feeling so grateful and blessed to be there, but everyone of us wished there was no reason for us to be there in the first place.

JoAnn and Jeff Castelaz

JoAnn looking at the album that was put together of our Wilms' Warriors and angels...

It was a night of laughs, excitement, fun, tears, and emotion...

 Angie(Skye's mom), Christy(Eve's mom), Tanya(Hannah's mom), 

Kerry(Sicily's mom), Melissa(JoshR's mom), and me

 After a long travel day Friday and hopping across three time zones, we were all thankful to finally crawl into bed.

TO BE CONTINUED........