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
Tyler
& Annie
click on the photo to see Annie's art
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 was a Nevada Union High
School Sophomore who saw first-hand
that the federal hospice rules do
not work for children. In 2003, he
went to Washington D.C. to ask
congress to change the rules, and at
that time, also started working with
the Children’s Hospice and
Palliative Care Coalition (CHPCC),
and Governor Schwarzenegger here in
California.
Very few children receive hospice
care because in order to qualify for
hospice care under the current
system their parents and their
doctor must state that the child has
likely less than six months to live
and the child must stop all
treatment intended to cure their
disease, or prolong their life.
These eligibility requirements take
an “all or nothing” approach either
- “we are trying for a cure” or “we
are managing pain,” stated Shannon
Snow, Nick’s mom, “This unnecessary
split causes heartache, confusion,
anxiety, and stress among medical
professionals, caregivers, and
families and ultimately compromises
care."
It is Children’s Hospice and
Palliative Care Coalition’s position
and the position of other experts,
including the Institute of Medicine
and the American Academy of
Pediatrics, that it is inhumane to
ask a parent to give up hope for
curing their child in order to
receive the compassionate family
support services provided by a
hospice team.
Under The Nick Snow Hospice and
Palliative Care Act (AB-1745),
California was authorized to submit
a federal waiver which will enable
children to receive potentially
curative treatments, as well as
comfort care and compassionate
family support services provided by
a hospice team.
Lori Butterworth, and Devon Dabbs,
the founders of CHPCC said, "Our
work in Central California has
demonstrated that under this model
we can provide better healthcare for
children and make more efficient use
of taxpayer dollars statewide."
The first five of thirteen pilot
programs will be launched
in Alameda, Monterey, San Diego,
Santa Clara and Santa Cruz counties.
These will be followed by Humboldt,
Marin, Orange, Sacramento, San
Francisco, and Sonoma counties in
2010, and Fresno and Los Angeles
counties in 2011.
For more information, you can
contact Devon Dabbs at:
1-831-763-3070 ext.204
←Senator
Barbara Boxer and Nick Snow
Nick's
mom &
dad
photo by
Becky
Reetz
Nick's Dream: A New Pediatric
Palliative Care Benefit for
Children
Nick Snow
is on YouTube!
video
time = 10 minutes, 10
seconds
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.
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.
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)
