A nice reminder that there are survivors out there!

I wrote this in response to an email I received from an NB Mom who's child is NED (no evidience of disease):

Shirley - I don't know who you are but I'm so thankful to have received this Happy New Year email from you. My son, Max 5yo, just recurred with NB and we are facing the horrible reality of how few kids survive this damn thing. I can't tell you how happy I am to read that your son is alive and well. I wish I could hear from more parents in your shoes! Thank you so much for the great news.

She responded to me:

Dear Melissa, it was good to hear back from you. You don't know me because I don't post that often any more -- the details of Simon's treatment (98-01) are a bit out of date for those now in treatment. However, I decided to send my holiday e-mail to the newer members of the listserv in addition to the old-timers I'm close to. I was a bit uncertain about doing that, but I do want people like you to know I am available as a resource if needed.

There are many parents like us whose children are NED -- but most such parents choose to depart the nb world and try to live a normal life (who can blame them). I think there are only a few who have stayed on the listserv whose children are ahead of Simon. I know there is at least one parent of a long-time relapse survivor on the list. I feel it is important for those in the battle to know that there are many of us out here who so far are staying one step ahead of this beast.

I took a look at your website and enjoyed seeing the beautiful pictures of Max. I see you are a pal of neil and sam's! I have spoken several times by phone with neil, what a good guy. The picture of Sam and Max is priceless!

Neil would no doubt tell you with a chuckle that I am a biased fan of the mskcc nb team -- Simon did his entire treatment at mskcc, so you can understand we probably are a bit biased!! We do believe that the 3F8 antibodies and the hot antibodies are the main reason simon is still walking around almost 9 years from dx. We are still very close to the nb team and try stay abreast of what is going on there. In fact, I met up with Dr. Cheung about a month ago and was incredibly uplifted by his firm conviction that he IS going to save some relapsed children. We have seen tremendous progress in the past few years and I do feel a breakthrough is right on the horizon. When Dr. C says there is hope, I believe him.

We live about 30 mins away from mskcc by subway. SO, if you ever come this way, or if you ever have any questions about mskcc, please just drop me a line. Alternatively, maybe our paths will cross at the NB conference this summer. I've never been before, but I hear it's an incredible gathering, so I'm going to try to make it.

Mainly I want you to know that Max and your family are in my prayers. I hope this current treatment will do what is needed!! SENDING HOPE!! Very best regards, Shirley Staples