Saturday, June 27, 2009

May you build a ladder to the stars, and climb on every rung, may you stay forever young



I met my hero a few weeks ago.

Most people, knowing I work in Hollywood recording studios, might ask "Wow, did you meet 'insert famous musician's name here' ?"

While I have indeed met and worked with many famous people, the hero I met was a cute 6 year old boy named Pablo.

I'm putting together a new recording studio for an indie record label here in L.A. One of the owners of the label, Jeff, and his wife Jo Ann, have a great son named Pablo. Unfortunately, just over one year ago Pablo was diagnosed with Wilms' Tumor, a rare form of childhood cancer:
Wilms' tumor or nephroblastoma is a tumor of the kidneys that typically occurs in children, rarely in adults. Its common name is an eponym, referring to Dr. Max Wilms, the German surgeon (1867–1918) who first described this kind of tumor.

Approximately 500 cases are diagnosed in the U.S. annually. The majority (75%) occur in otherwise normal children; a minority (25%) is associated with other developmental abnormalities. It is highly responsive to treatment, with about 90% of patients surviving at least five years.

90% survival rate sounds great. Unfortunately, Pablo & his family have been on the roller-coaster ride from Hell for the last year. In and out of the hospital, in and out of chemo, in and out of panic and hope, a trip no one wants to take. You can read the diary of this journey at Pablo's blog: http://getwellpablo.blogspot.com.

Jeff and JoAnn are smart and caring people, and knowing that Pablo's care would be paid for, established a fund to help other cancer-stricken children and their families at Childrens' Hospital of Los Angeles (CHLA), called The PABLove Foundation:
Specifically, the Pablove Foundation will make an annual contribution to cancer research and treatment at CHLA's Saban Research Institute, one of the top cancer research facilities in the United States. It will also support play activities, music and arts programs and sponsor play rooms in the soft tumor units at CHLA. These 'units' are actually entire floors of the hospital, which are filled with brave, beautiful children at any time of the year. A strolling minstrel, a board game, a book, or an art easel bring such joy to the heart of a child whose life has been temporarily reduced to a small hospital room.

Note that this isn't a personal charity; all of Pablo's care is taken care of. But it will really help in the healing and care of many other children fighting pediatric cancer.

I met Pablo at the record company offices a few weeks ago, after reading the blog for a few months. I was more nervous than meeting a rock star, because Pablo is something they aren't: a kid asking for nothing other than to be loved by his family and to have some fun, yet representing a strength and fearlessness that would humble most adults. I introduced myself to him, asked about the bike ride he and his Daddy had gone on the day before, and then we shook hands.



When you donate to The PabLove Foundation, you can get a snazzy yellow bracelet embossed with the logo. I'm wearing mine now, it looks like this:


You will also have the satisfaction of knowing that you're helping the most fragile among us: children with illness. Click on the bracelet to donate, if you feel inclined. Please.


Sadly, I have a confession to make. In all I wrote above I used to present tense verbs 'have' and 'is'. I really should have said 'had' and 'was'. You see, Pablo left us Saturday. The good news is he won't hurt or be afraid anymore. The bad news is his loving family and friends miss him terribly.

Here's Saturday's entry from the Get Well Pablo blog:
Dear friends, Pablo Thrailkill Castelaz passed from this life at 1:30 p.m.

He left this life in the same way he entered it: beautifully, gracefully and in the loving arms of his Mommy and Papa and dear big brother Grady.

He left this life in the middle of his parents' bed - the bed he's grown up in, from day one until today, his final day.

Our family is grateful for your love and light.

From our hearts,

Jo Ann, Jeff and Grady


Pablo doesn't need our help anymore. But many more kids do. According to the National Cancer Institute, 10,400 kids were diagnosed in 2007. And the rate is rising:

Over the past 20 years, there has been some increase in the incidence of children diagnosed with all forms of invasive cancer, from 11.5 cases per 100,000 children in 1975 to 14.8 per 100,000 children in 2004.

If you're a data geek, read the whole short page. While overall cure rates are up, childhood leukemia and brain tumors are on the increase. So more research is needed, and sadly more children will die. If you choose to, please honor Pablo by contributing to The Pablove Foundation, or to your preference of charities.

Pablo's family and the other thousands of families confronting childhood cancer will appreciate it.

Finally, to understand the love and grace of this family, read Jeff's Saturday evening blog post:
We have all wept and wept and wept. At one point I thought I was going to pass out. But this is the purpose of crying and weeping and letting go, isn't it? It's about clearing out. It's about finding the bottom and scrubbing it clean with the tears, the breath, the tornado of release. There is no doubt the sorrow and mourning and tears and gut-wrenching will go on for a long time. But there's also no doubt that our acceptance will grow and take on color and shape and dimension. We're nowhere near that today, of course. But we know that this is the promised land for a family who has lost a boy named Pablo who lived exactly six years and six days.

Read the whole post, please. It's painful & beautiful poetry. And it's full of love, because that's who these people are.

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