Patch Adams, M.D. and Nick at Camp Winnarainbow
photo by Becky Reetz
Nick Snow was
diagnosed January 1996 at the tender age of 6 with
Neuroblastoma, a rare and deadly childhood cancer. He underwent
84 months of treatment (chemotherapies, surgeries, 4 types of
radiation, a bone marrow transplant, many experimental
therapies), and finally reached remission December 2002. Sadly, after
more than three years of being cancer-free, he
died April 2, 2006 from an infection. He remains a beacon of hope to all who are battling
this disease.
Nick's 2005
Christmas letter to us
Dear
Mom + Dad,
Hey I wanted to let you guys know how much I love you. I can’t
even put it into words how much I owe you and thank you both for
being there for me through all of this. I still have grief and
anger about putting our family through this. Yes, I have thought
about ending my life so our family does not have to live with
the deep scars that this disease has brought us.
I can’t thank you guys enough for having faith and belief in me,
and keeping that hope, knowing that I could beat Neuroblastoma
and prove to the doctors that it is beatable. And if it weren’t
for you guys, I would not be here today. Now knowing what we can
get through together, I hope we can work out our pain and guilt
that we have. I believe we can heal our scars if we come
together as a family.
We can accomplish anything!
Every Christmas is special to me in its own way. I don’t know
how many times we have heard the doctors say I would not make it
to the next Christmas, so it’s just a great feeling to be alive
and be able to enjoy Christmas with you both.
I don’t think I have brought this up, but I have a lot of
depression about how Tyler had to grow up when I was sick. He
had to do a lot by himself since you guys were with me in the
hospital. Also, I don’t think he realizes how much I love him
and from the bottom of my heart, I thank him for being such an
amazing brother that I can look up to.
Well Mom + Dad, I love you guys so much! I hope we can start
putting some of this medical stuff behind us and move on, and I
hope I’ll see you next Christmas.
Love you lots!
Merry Christmas.
Love from,
XOXOXOX
Nick with the dolphin in Hawaii - January
2006
Nick's Drumming CD
click on picture to hear track 12 photo by Kristen Oliver
We sold Nick's drumming CD, and raised $2785.45 for
Dr. Pat Reynolds' Neuroblastoma research.
Nick
Snow
so
loved
politics
that
by
the
age
of
13,
we
were
calling
him
"Senator
Nick."
He
even
took
his
message
of
children's
hospice
reform
to
Washington,
D.C.
I Spot Compassion, is a social
revolution using children’s messages
of hope, healing and love to seed
compassion and build a more
compassionate society.
On January 19, the National Day
of Service, we encouraged
acts of compassion in honor of Nick
Snow. Nick was an incredible young
man who, even though he was gravely
ill, testified in Washington D.C.
and Sacramento with Children's
Hospice and Palliative Care
Coalition and spoke out on behalf of
families to urge the government to
change the hospice eligibility rules
for children. Because of his
efforts, the Nick Snow Children’s
Hospice & Palliative Care Act of
2006 Assembly Bill 1745 was signed
into law last September.
Nick's Dream: A New Pediatric
Palliative Care Benefit for
Children
Because this Coalition has had
the courage to believe in
comprehensive, compassionate and
cost effective care for children
with life-threatening
conditions, new ground is being
broken in healthcare services
for children. Together we have
spoken out and taken action for
those too little or too sick to
speak for themselves. Thank you!
We are deeply grateful to the
staff at the California State
Department of Healthcare
Services Children's Medical
Services and Waiver Analysis
Branches, and we thank Governor
Arnold Schwarzenegger for
signing Nick Snow's dream into
law. This would not have been
possible without the vision and
dedication of all of CHPCC's
financial supporters including
the California Healthcare
Foundation for its investment in
this policy initiative and to
the Hospice Foundation for its
investment in the Partnership
for Children model of community
based care.
But mostly, we would like to
express our profound
appreciation to the children and
families who have led this
effort with tireless dedication
and wisdom.
Now, together as a strong and
dedicated Coalition, we have an
opportunity and a responsibility
to roll out a successful
three-year pilot that improves
the quality of life for families
and makes better use of
tax-payer dollars.
With love and gratitude,
Lori Butterworth and Devon Dabbs
Co-Founders and Co-Executive
Directors
Children's Hospice and
Palliative Care Coalition
The Nick Snow Bill waiver is set
to begin this July.
The waiver is a
Medi-Cal CCS demonstration
project that will enable
children with life-limiting
illnesses to receive curative
treatment as well as home-based
palliative care services similar
to those that are provided by
hospice agencies. The program
will be open to children who
meet medical diagnosis criteria
and have Medi-Cal coverage. It
is anticipated that Alameda,
Santa Cruz, Monterey, Santa
Clara and San Diego Counties
will be able to begin enrolling
children in April of 2009. For
more information, click on
waiver.
Nick always knew that if you sit
on the sidelines of life, too
afraid to dive in, you would
miss living. He inspired
everyone he met to never give in
to doubt and fear. Through his
courage
and humor, Nick reminded us not
to worry about the silly stuff.
Whenever life gives you the
opportunity, you gotta...
"Get in and get your hair wet"
***Click
on the images for ordering
information.***
Partnership for Parents has made a website for parents of
children with serious illnesses. I
would like to invite you all to
check it out.
Partnership for Parents
THE PEOPLE OF THE STATE OF
CALIFORNIA
DO ENACT AS FOLLOWS:
Click Here
To read the
press release
from governor's
office:
Click Here
Nick's Bill was
signed into law
by Governor
Arnold
Schwarzenegger.
Shannon Snow (Mom)
at the podium
Click on the picture to see
the video. Fast forward to
14:45 to see my speech.
MRS. BUTTERWORTH:
Thank you. Good afternoon.
I’d like to call up Devon
Dabbs and Shannon
Snow. My name is Lori
Butterworth, I’m the
co-Executive Director and
the Co-Founder of the
Children’s Hospice and
Palliative Care Coalition.
Devon Dabbs is also the
Co-Founder, Co-Executive
Director.
Assembly Bill 1745, which we
are so grateful will be
signed today, is a vision,
it is a reflection of a
vision, the vision of Wilma
Chan, the vision of Senator
Ortiz, all of those who came
together to say, “We can do,
care better, for children.”
In 2001 the Institute of
Medicine recommended that we
do something about hospice
eligibility for children. In
order to access hospice care
a parent must decide to give
up on saving their child’s
life. In order to get that
compassionate care that’s
available and ready to serve
them, they would have to say
this child has six months or
less to live. We think
that’s unfair. We think
that’s wrong, and California
has a vision to change that.
And with the signing of this
bill today, the Nick Snow,
Children’s Hospice and
Palliative Care Act,
California is taking a huge
step in setting into motion
in other states this vision
of integrating compassionate
family-centered care without
the child having to give up
on trying to save their
life.
So I want to turn this mike
over now to Nick Snow’s
mother, Shannon Snow. She is
the one who has held this
vision, and this was Nick’s
vision. Right before he died
he made a commitment that
this would happen. And so I
want to give you Shannon
Snow, Nick’s mother.
(Applause)
MRS. SNOW:
Thank you all. I’m Nick
Snow’s mom. Nick spent seven
years being terminal, and he
saw firsthand how the system
was failing him and all of
the other children. And he
met Lori Butterworth at a
party and said, “Let’s do
something. What’s happening
right now isn’t working for
children. It’s not working
for me. We have to change
it.” And so we are.
So thank you, dear Governor,
for allowing this to happen
today. This is a great day.
Thank you. (Applause)
Tyler
& Annie
