Give A Little Bit

Yes, it's true: You're supposed to think of Supertramp as you read that and perhaps hesitate to wonder where all the good prog rock went. Sigh....

OK, with that out of my system, on to the task at hand. First a quick update on life: We are all doing well coming off the back of an excellent Thanksgiving vacation. Mimi (my mom, for those of you not in on the Grandma speak) came out to visit for the week and seemed to enjoy herself and we spent Thanksgiving itself and a couple of bonus days up at Cassie's parent's ranch in Santa Ynez and could not have had a better time--Lucia and Andrew got to ride a horse, I got to ride my bike and Cynthia got a ride to the movie theater in town to see "New Moon." For the second time. If you were to take a poll, I think we would each say it was the perfect holiday....

And now, here we are in the second week of December and the cold and wet has finally descended upon Southern California and we have to (grudgingly) embrace the fact that winter is here. To be fair, it is nice to have a change up in the weather--how much sun and warmth can you take? (don't answer that)--and it's a decent trade, knowing that Christmas is only a few short weeks away. We managed to get our lights up on the house right after Thanksgiving and the tree decorated on Sunday. We are committed and ready. Bring it on, Santa!

Andrew-specific news is good, in that there is no news. We are in a lull with the exception of this "tiny" milestone: Andrew started his final round of oral chemo (Accutane) on Monday. This means that in a little less than two weeks--and, not-coincidentally, right before the Christmas holidays--he will have completed all Neuroblastoma-related treatment. And then some. In truth, we are throwing in the towel one cycle earlier than we had previously planned (standard treatment calls for 6 rounds of Accutane, we had originally thought to do 15, but we are capitulating at 14), but the fact is that each round gets progressively harder on Andrew in terms of side effects (his hands now blister and scab over) and Cynthia and I are hitting the wall of treatment fatigue. It will be almost two solid years of treatment for Andrew--he started January 18, 2008--and it is simply time to move on and start 2010 not only cancer-free, but treatment-free. Andrew has received every available treatment for "first-run" Neuroblastoma, so we have to put our faith in that now and hope that it continues to serve him. He will have scans again in January, immediately after the holidays, so please pray for continued NED status at that time.

In the meantime, it is the holidays and the year end and so, it is my cue for my annual plea (rant?) in support of those organizations near and dear to us. This year is a bit different in that there have been some shifts in the Neuroblastoma community in the last year, but the intentions and effects of your giving are the same. Donating to these organizations is important and necessary, as they are the best avenues through which to make an impact on this disease and on a child's life. Pediatric cancer--in its totality--is largely orphaned by our government and the drug companies; Neuroblastoma is like an orphan of an orphan.

To make a small point: A couple of years ago--under the previous administration and with much fanfare (at least in the pediatric cancer community)--the Carolyn Price Walker Conquer Childhood Cancer Act was signed into law. It called for...wait for it...$30,000,000 to fund pediatric cancer research. Let that sink in for a moment. That's $30,000,000 for ALL pediatric cancer research. In the country. And do you know what $30,000,000 is relative to the government's annual budget? It's like a rounding error. But--and this is the kicker--the $30,000,000 has yet to actually be funded in the budget! Even under the new administration. So, there is a law calling for $30,000,000 to be funded--no, rather "earmarked"--for children's cancer research, but arms still have to be twisted to force the dollars to be printed. Cancer is BY FAR the leading cause of death in children, yet this is its priority. Pathetic.

This is why we must act on our own. This is why these organizations are so critical to our cause. They will gather the funds and do their homework and fund the research grants that have the best chance of making a difference, grant the wish of the sick child, implement the art and music program for hospitalized kids and support the growing number (touch wood) of survivors of this disease as they move from treatment into the unknown of long-term side effects from treatment. In short, any and all support is worthwhile, as it will go directly to making an impact on this disease in one form or another.

Without further ado, please consider how you can help this year or in the future:

http://lunchforacure.org/
As with last year, this is where we are asking you to focus your support. This is the new Lunch for Life site and it strikes us as the most effective, yet perhaps effortless, way to give: as little as $5 at a time. We recognize that this has been a very difficult year for a lot of people and families, so anything that you can muster is appreciated and valued. The true beauty of Lunch for a Cure lies in this:

100% of the dollars received will go to fund neuroblastoma research! NO administrative costs, NO marketing costs, and NO foundation salaries - just research.

Perhaps most importantly, Lunch for a Cure is the site of the Giving Trees, which we had tremendous support for last year. Andrew's tree is certainly in need of ornaments, if you would like to participate in filling it!

If you are interested in doing more and would like suggestions of other worthwhile organizations, we are happy to make the following recommendations:

http://www.neuroblastomafoundation.org/Default.aspx
This organization is focused primarily on funding research for novel and promising treatments for NB. This is not entirely altruistic. Most research, as a matter of design, is targeted at relapsed or refractory disease; if Andrew (God forbid) sees Neuroblastoma again, this will be his lot. We need breakthroughs here.

http://wish.org/
This is the Make-A-Wish Foundation, a truly worthwhile organization, whether you support them monetarily or perhaps volunteer in your local chapter.

http://www.pablove.org/
I recently posted about the Pablove Foundation and Jeff and Joann's personal commitment to improving the lives of children with cancer through music and art programs in hospitals.

http://friendsofchla.org/Friends_of_Childrens_Hospital/Welcome.html
Friend's of Children's Hospital works to support the survivors of this disease as they confront and work through the long-term consequences of their treatment.

Again, we feel that Lunch for a Cure is an ideal charity on many levels and ask you to support it, if you are able. And, at this time of year in particular, you can have a good time doing it through the Giving Trees. If you are in a position to do more, perhaps with one of these other organizations, that is simply tremendous. We are grateful for all that you do.

May your holidays be exactly what you hope for. Here's to a healthy and happy 2010! Take care.

Paul Filippone