About the blog
HOPE Notes, the blog for Children’s Hospice and Palliative Care Coalition, offers news and views on the latest in care for children confronting chronic and life-threatening illness.
You’ll learn about policies affecting seriously ill children and their families, innovations in pediatric medicine, community-based care for children, educational opportunities in the field of pediatric palliative and end-of-life care, and much more. The blog also features the first-hand experiences of children, parents, and the doctors, nurses and other professionals entrusted with their care.
Teeter Totter
Posted Saturday, February 23rd, 2013
One of the many things that happens for families when a child is sick is that their former social relationships change. I think it takes awhile for a parent to let go of only seeing their child as “ill” and so there is this idea of binocular vision, a kind of double vision of what was, and what is now.
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Celebrating Chelsea
Posted Thursday, January 31st, 2013
Chelsea Lane died peacefully on January 7, 2013. Chelsea has been a champion for children with serious illnesses, sharing stories of her life journey through her blogs here on CHPCC’s website. CHPCC is honored to have worked with Chelsea in bringing her voice to the world. She will be missed tremendously.
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Chelsea Reporting from the Red Carpet
Posted Wednesday, November 28th, 2012
On November 12th, I went to the Los Angeles premier of Breaking Dawn – Part 2, the last movie from the Twilight Saga. My Mom and I spent all afternoon getting ready. We had to put on make-up and I got to wear a new dress. My Mom had on a cute outfit and looked beautiful. My Dad was wearing a tux and looked like a movie star.
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Ebb and Flow
Posted Tuesday, November 13th, 2012
As I walked on an early summer day in South Florida, I listened to Duncan Sheik’s “She Runs Away.” I caught a phrase about “symptoms” and then “the darkness comes and the darkness goes,” followed by “happiness ain’t never how you think it should be so.”
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Chelsea’s Fantastic Surfing Adventure
Posted Friday, September 28th, 2012
On Saturday September 15, 2012, I went surfing for the first time in my life. I had the most fun time ever. I was there with a bunch of people who also never surfed before; most of them paralyzed or with a disability. One of my friends, Daniel, went with me along with my sister Bri and her friend. My Mom and Dad were also there and everyone got to surf.
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Those Precious Minutes
Posted Monday, September 24th, 2012
During my daughter Jillian’s 10 short years of life, she required quite extensive medical care. Based on my calculations we wasted over a month of time getting care in the traditional model (traveling to the clinic, finding parking in a crowded parking lot, waiting at the clinic for the appointment, having the appointment, waiting for the blood draw, waiting for the lab result, traveling back home, etc., etc. I haven’t even factored in the anxiety and stress attributed with going to the hospital and being admitted at times.) Over 4,000 minutes lost.
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Wake Up Call
Posted Thursday, September 13th, 2012
There is a humanitarian emergency in the United States. An estimated 1,000,000 children live with serious illnesses that may cause them to die before reaching adulthood. Many will survive because advances in medicine and technology enable them to breathe, consume nourishment, and overcome infection and injury. Until recently, the majority of these children migrated unseen
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Bridging the Bridge
Posted Tuesday, September 11th, 2012
Joe Wuelfing is an obscure ambassador. He isn’t a U.N. Delegate or a known personality on CNN. Most bloggers don’t know him, and he’s no Twitter who’s who. Wuelfing is a parent, a bereaved father, and a self-identified change agent in a growing movement to enhance dialogue between families and clinicians around the issues of caring for a seriously ill child.
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Medicine With A Heart
Posted Thursday, September 6th, 2012
The Institute of Medicine commissioned “When Children Die” because they had heard from a number of their members that there was a problem in the pro- vision of compassionate, consistent and affordable hospice and palliative care to children. Our goal was to quantitate the information and put it into one place in order to increase awareness about the issue within the medical community and among the general public.
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Leading And Learning
Posted Thursday, August 30th, 2012
As a mission-based not-for-profit hospice provider, we are fully committed to providing the highest quality end-of-life care to all in our community who need it and choose it. It would actually go against our philosophy in a very material way to not provide care to children. Our opportunity has been to try to figure out a way to operationalize and fund the availability and access to that care, but our philosophy as an organization is inclusive of all in our community.
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