Patch & Nick

 

The Amazing Nick Snow

Get in and get your hair wet!

Nick News Links Photo Gallery Archives Visitor's Notes

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 a 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 the news

Article by Kirsti A. Dyer MD, MS, FT


Wheeeee!!!
Click on the picture to see pictures from
Nick's Celebration of Life Party.

 


     


Shannon Snow's Facebook profile



www.johnnysangels.org


Locks of Love and Nick Snow's mom

 

 


 

 

Ruben needs your help!


Click here for details.

 

 

 



 



Nick Snow would have been 19-years-old  July 17th. He would have been so excited to vote in this presidential election, and there is no doubt he would have campaigned his heart out for Mr. Obama.

He 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.


Paige Peterson, Jessica Fitz, Dr. Clarke Anderson, & "Senator" Nick Snow at the Capitol in Washington, D.C.

 I wonder what he could have achieved if given more time. Yes, his life was complete, but as his mom, I wanted more.


 

          The Nick Snow bill waiver is set to begin in January!
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 January of 2009. For more information, click on waiver.

The Nick Snow Children's Hospice and Palliative Care Act of 2006.

Nick's "Get In And Get Your Hair Wet" Bracelets

   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.***


Printed on the back of the bracelets:

childrenshospice.org
Nick


All proceeds benefit the
Children's Hospice and Palliative Care Coalition
The "Get in and get your hair wet" t-shirts are ready.

Nick's mom & dad photo by Becky Reetz
You can get yours at: I Spot Compassion
 


 

Nick Snow is on YouTube!

video time = 10 minutes, 10 seconds

See You Next Christmas -- an essay by Nick Snow

nick snow
 

nick1996
Partnership for Parents has made an informational 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 and MesaTyler Snow
 


My myspace is: www.myspace.com/tylersnowsmom
Contact me: Shannon Snow

 

Amy B. MD  --  call me.  It's time we worked this out.

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