Our Neuroblastoma Friends

In May, I received an email from Shirley of Alex's Lemonade Stand as follow-up to my joining their email list.  Shirley nicely asked me if I was interested in being matched with a mentor.  A couple days later, I received my first email from my assigned mentor, Megan.  I have to admit, just getting Megan's bio info from Shirley was rather impressive.  She is the mother of Brady, who was diagnosed with Neuroblastoma in January 2009 when he was 21 months old. He too was considered Stage 3 - Intermediate Risk, just like William.  Brady is one of a set of triplets and has a younger sister (yes, Megan is the mother of 4 adorable children!)

Right away, I felt a connection with Megan through her emails.  Her family also experienced the frustration of mis-diagnosis only to have the tragical proper diagnosis a month later.  In Brady's case, they were told he had Cerebral Palsy.  When his lower body control was suddenly affected, the family brought him to the ER where an MRI was completed.  Shortly after, they were told little Brady had a large tumor in his chest wall that extended into his spinal column, almost completely compressing his spinal cord. He underwent immediate surgery to remove part of the tumor to alleviate the pressure from his spinal cord. 

From there, the Williams' family story is remarkably similar to ours - they sought a second opinion at Memorial Sloan-Kettering, underwent two rounds of chemotherapy and then a second surgery to remove the majority of the remaining tumor (that surgery was completed by the same surgeon that did William's resection at MSKCC).  Today, although Brady is in stable condition from the Neuroblastoma perspective, he is also dealing with complications and long-term side-effects from the very treatment that helped him achieve wellness from cancer.

I've greatly appreciated Megan's uplifting and comforting messages over the past couple of months.  Reading them gives you some sense of consolation like only can be passed on from someone who has walked in similar shoes through the tragedy of having a sick child.  We've shared frustrations on the difficulty of advocating for our boys and the realities of the impact the experience take on you emotionally, on your marriage, on friendships....on everything.  To say the least, Megan has offered tremendous insight from someone further down the road to recovery than us and provided me great encouragement. 
 
So a few weeks ago, as we were emailing about Megan's upcoming second annual Alex's Lemonade Stand, I was most excited when she asked if we'd like to get our families together.  Last weekend, we met at the Strong Museum of Play in Rochester and had a blast with this amazing family.
 

Check out all the kids together! 

Back Row:  Brady, Cara, Nicholas

Front Row: Eli, William & Allie

 

  William thoroughly enjoyed every bit of his first trip to the museum, especially the kid's Wegman's.

1 - 2 - 3 - 4 - 5...(almost) all the kids playing together!  The helicopter was a big hit!

Nicholas and Allie were so adorable standing, engrossed in watching the train.  In the end, Allie and William ended up encouraging their older siblings to go for a ride!

My boys liked a game in the new Super Heros display...it involved activating lights and electronics - why wouldn't they love it!

Today I had the pleasure to help Megan prepare for her fundraiser for pediatric cancer.  Her family is hosting their second lemonade stand and donating all profits to Alex's Lemonade Stand.  It's amazing the effort a busy mother of 4 kids under 3 1/2 can do to advocate for a cause dear to her heart.
 

Megan thought of every possible detail to make this stand a success!

Thank you Megan for a wonderful two weekends of hope.

 

To learn more about Brady, our courageous Neuroblastoma warrior, visit their family blog:  Steps for Brady.