Tuesday, September 9, 2008

A new endeavor

We love our caringbridge site for Laura but thought it would be great to have a blog where text and photos could be interspersed and commenters could include a photo of their own.  So we'll give it a whirl.  We just ask your patience while we get going.  New readers, please do check our caringbridge site at the above link for Laura's story and our journal, chronicling the struggle with neuroblastoma and ultimately the passing of a bright and gentle spirit, Laura Stiles, on December 22, 2006.

It was just 3 years ago when Laura age 12 was about to have surgery to remove her primary tumor at Memorial Sloan Kettering in New York.   Just came across this photo taken in the days leading up to the surgery, which we spent in NYC, while Laura had pre-surgical testing and stem cell harvest.  We're in Toys R Us in Times Square.  Laura has just completed five cycles of very strong chemo and has lost all her hair, including if I remember correctly a lot of her eyelashes and eyebrows.  Laura got her Nintendo DS that day, affectionately to be known as simply the "DS," a device which was to be a steady source of pleasant distraction for her, during many hours in the months to come.    

Neuroblastoma happens sporadically without known cause in about one in 100,000 children.  Researchers, including two of Laura's doctors, Drs Maris and Mosse at CHOP, are just starting with new research published in 2008 to get a handle on the first ever few pieces of what is the complicated "perfect storm" of genetic events, as Dr. Maris called it, that is neuroblastoma.

  Readers should not assume our case represents the typical.  Neuroblastoma is usually diagnosed in much younger children.  Since Laura was an older child for neuroblastoma, diagnosed at age 10, there was the initial hope that the neuroblastoma would not behave as aggressively as it often does.But, as Dr. Kushner, her pediatric oncologist at MSK would say to me this year, looking back, her case, so resistant to treatments, never going into remission, was a case he saw as an outlier among all, I'm guessing the many hundreds of cases, he has seen.

We're thinking of our friend Erin Buenger in Texas who is in patient for chemo.  Please drop by and say hello! 


  1. Well done, Mara.
    I have followed your every word on Caringbridge, and now look forward to doing so on this blog.
    There is little that I can say that can ease your grief, but I can silently share it.
    Love to all
    Ced B

  2. Glad I found Laura's new site and look forward to many beautiful photos along with your evocative prose.


  3. Welcome to the world of blogs! I'm a fellow caringbridge mom who has transfered to this medium as well. It's so much easier! I will look forward to reading you posts.
    Michelle's mom

  4. Hi Mara,
    blog looks great! Look forward to reading your posts in a different format. You all are in my thoughts.