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ARCHIVE: AUGUST, 2007

I was at the Country Store when my friend, Roo asked me if I had been listening to the local radio station, KVMR, the previous night.  I hadn't.  Wish I had.  Our friend, Grace, from the band, Organic Flood, wrote a poem about Nick and recited it on the radio. The next time I talked with Grace, I asked her to e-mail me with the poem and here it is:

Hi Shannon,
Here is my poem about Nick...I think about him a lot and I think it
is an amazing synchronistic blessing to be making music with Shelby
right now.  It is truly awesome and exciting.  Thanks so much!
Grace

Nick Snow

Let's talk about Nick Snow, here we go, boy born
through a window of initiation where cancer transforms
with each beat beneath his hands, the water of his music,
a geometry sacred and crystalline, changing from one
beautiful snowflake form to another, keeping him company
as he keeps rhythm, healing his body, his ancient snow soul
knowing the same tools he had long ago will move
molecules, align stars and atoms, alchemical peace
healing with creative release of music, drum beat, heart beat,
the pulse of earth beneath his feet
conga cong, conga cong
baboom of kick, vibration of snare, tribal holla of tom,
crash, lightning symbols in his body configure into light
he grins at the camera, tosses all his sticks into the air
delighted to spark spirit, syncopation of time,
thrum of muscle against hide.
This is my body, he says, this is my blood
my holy, holy spirit
my miracle

                                                   love, grace tea


ARCHIVE: MARCH, 2007

I was invited to speak at a  Partners in Care  conference in Florida at the end of March.

   Keynote Speaker: Shannon Snow, Children's Hospice & Palliative Care Coalition, Watsonville, CA

Last September, the state Legislature made it at least a little easier for the 10,000 to 14,000 California families facing heart-wrenching options for their youngsters. The Nick Snow Children's Hospice and Palliative Care Act of 2006, named for Shannon’s son who had neuroblastoma, a cancer of the nervous system, who "flunked" hospice care twice when his condition temporarily improved, lets seriously ill children receive hospice and palliative care without having to forgo medical treatment that might cure them or prolong their lives.

 

ARCHIVE: OCTOBER 03, 2006


Thanks from Shannon: Nick Snow’s mom.

First, I would like to thank Lori and Devon and everyone working with the Coalition, for their tireless efforts to make the Nick Snow Bill a reality.

Having this bill pass is a huge step forward, but we need to keep in mind that it’s just the very beginning towards realizing Nick’s (and our) dream of improving the quality of life for seriously ill children and their families.

I don’t know exactly how many hours have been put into this, but I know with the extensive family interviews that were done, and the countless meetings to identify the problems with the system, and the brainstorming involved to come up with the solution (and this bill is just a part of the process of coming up with the solution), the number of hours must be astronomical.

Thank you everyone for all your hard work, for pulling together such a strong Coalition, and for caring enough to make a difference. ----And I want to especially thank the people who have funded this project!

It has been such an honor to work with you all, and we look forward to what comes next. Our family knows first-hand the deficiencies in children’s health services today. To allow this to continue is unacceptable, and we are dedicated to doing whatever is necessary to make Nick’s dream a reality.
 

ARCHIVE: SEPTEMBER 05, 2006

Mrs. Shannon Snow
18606 Cruzon Grade
Nevada City, CA 95959
530-478-9096
www.nicksnow.com

Honorable Arnold Schwarzenegger September 05, 2006
Governor, State of California
State Capitol
Sacramento, CA 95814

Subject: REQUEST FOR SIGNATURE AB 1745/Chan (Perata & Ortiz)

Dear Governor Schwarzenegger:

I am the mother of Nick Snow, the child who Assembly Bill 1745 is named for: The Nick Snow Children’s Hospice & Palliative Care Act of 2006. Nick spent seven years in treatment for cancer, and was known as the child who “flunked hospice twice.” From being through all that, he learned where the deficiencies in the current system are.

He saw first hand the agony parents go through when they have to give up hope and admit their child is dying. AB 1745 will change that. Children will be able to continue pursuing potentially curative therapy and concurrently receive hospice services.

He endured countless trips to the hospital for medications and infusions that could have very easily and safely be given at home if a care team had been in place. He felt that every unnecessary day spent at the hospital was a day of life ripped away from him.
AB 1745 will change this.

I thank you for your continued support, and respectfully ask you to sign AB 1745 into law.

Sincerely,
 


ARCHIVE: AUGUST 30, 2006

Assembly Floor - 08/30/06
Motion: AB 1745 Chan Concurrence in Senate Amendments
Ayes: 77, Noes: 0

Bill Location: Pending on the Governor's Desk!!!
 

From the desk of Lori and Devon:


Dear Friends and Coalition members,

As you know, AB1745 – Nick Snow Children's Hospice & Palliative Care Act – will be presented to Governor Schwarzenegger for his signature in next few weeks.

The Governor and his staff have been very supportive of our bill, and he is expected to sign it. In the meantime, in our ongoing efforts to raise visibility and support for the bill, we would appreciate it if you would take a few moments to write the Governor a letter thanking him and his staff for their support to date and encouraging him to sign the bill.

We have attached the letter which we sent to the Governor on behalf of the Coalition. Feel free to use it as a template but please do not quote it verbatim, as we don’t want to appear to be sending out a series of form letters. Your own words and experiences are always best.

Letters may be faxed or mailed; however, given the timeliness, we would suggest faxing if possible. Please do not e-mail the letter. Contact information for the Governor’s office is:

Governor Arnold Schwarzenegger
State Capitol Building
Sacramento, CA 95814
Phone: 916-445-2841
Fax: 916-445-4633


We want to thank you again for all you have done to rally support behind this bill. Your letters and calls to the California State Senate secured the bill’s passage, and you should all be very proud. Together, we have paved the way for the waiver and improving care for thousands of California’s children.
All our best,
Devon & Lori

Devon Dabbs & Lori Butterworth
Co-Executive Directors, Co-Founders
Children's Hospice

Children's Hospice & Palliative Care Coalition
65 Nielson St., Ste. 108
Watsonville, CA 95076
Ph: 831.763.3070 x205


ARCHIVE: JULY 26, 2006

Musings from Mom
This is the weirdest thing. I feel like I'm in a time/space warp or something. It's like in the movies where the woman has multiple personalities, and she wakes up now and again not remembering how she got dressed, or how she happened to get to the store. I think part of me is on autopilot, part of me is asleep, and part of me is on the side watching everything. Bizarre. For a few days, I was starting to think I had this grief thing under control..............then I'm back to the awful, physically painful, deeply sad place.

I had a list of four things I HAD to do before Nick's Celebration of Life Party. Make nicksnow.com.......done and getting better every day. (with lots of help of my friend, Connie) Take over webmastering darcana.com and update everything........done (still needs more work, but then they always do). Finish my book and send it for copyright. Done. Last thing is make The Nick Movie out of all the 8mm and digital video tapes for showing at the party. It took weeks to find the right software and hardware..........multiple false starts..........learned multiple software programs.....ugh..................I have exactly 6 minutes of movie so far and one week to gather and finish the other 84.
 
My brain used to be my friend. It worked well, fast, and logically. I tried to reboot my system by getting plastered at one of Shelby's gigs, but that only slowed down my RAM even more. And I think it deleted some of my harddrive. Now and again, my brain just stops and gives me the blue-screen, where I seem to just sit and stare, thinking of nothing, seeing nothing, and being totally unaware of my surroundings. I had an old computer that I had to whap on the side now and again to jar it into action...........someone needs to whap me.

Everything in my life was Nick related and now I'm feeling a little lost. Not that I only had an identity as Nick's mom and caregiver, but my job was Nick and I lost my job very unexpectedly. So without warning, I'm not only unemployed, but injured to boot. ---And probably a little insane.
Nick was Cancer Free. How can he be gone? In every scenario I ever came up with for his death, never did my imagination come up with him dying from anything other than Neuroblastoma.
 
He won. He beat the cancer. His prize was life. How can he be dead?

Thanks for listening.
Shannon: mom to Nick Snow
 


ARCHIVE: APRIL 18, 2006

Children's Hospice & Palliative Care Coalition
Invitation to Dedication Ceremony of AB 1745 to Nick Snow

At Hard Rock Café at Universal City
Monday, April 24th at 3:00 pm.
 
We will be gathering to honor Nick Snow on Monday at his favorite restaurant, the Hard Rock Cafe. As you know, Nick's life story personifies what this bill is all about. Nick "flunked hospice" twice - being told that he was "terminal" with less than 6 months to live and giving up on his attempts to cure his cancer. Both times, Nick beat the odds and defied the rules, tried more treatment and when he died last Sunday, we was cancer free.
For the past year or so Nick has served the Children's Hospice & Palliative Care Coalition as our spokesperson on the issue of children's hospice eligibility. It is fitting that we dedicate this bill to him and pursue the waiving of hospice eligibility in his loving memory.

Please join Nick's mom and dad, close friends and some concerned citizens for the dedication on Monday, April 24th at 3:00 pm. This is a private event.

Hard Rock Cafe Hollywood
1000 Universal Studios Blvd. #99
Universal City, CA 91608
 
Please RSVP to this email. If you are unable to attend and would like to send a message to Nick's family, please email them to us and we'll pass them on.

Thanks so much,
Lori Butterworth & Devon Dabbs