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Evolution of HOPE

Posted on February 2, 2012

This is a contribution by Paola Bruni, the Editorial Director of HOPE Magazine.

Hope Magazine

Since 2009, I have had the privilege of creating HOPE Magazine with many gifted contributors. We have shared a common bond—an understanding that no matter how contrary to the natural order it may seem, children cannot always escape illness or death. By holding this reality close to us, we are blessed with the fortitude needed to advance care that improves the lives of these children, their families, and the communities that love and care for them.

When we read about pediatric palliative care, the communication is all too often about government regulation, cost savings, and treatment protocols. Important? Yes, of course, but also critical are the real-life stories that indelibly remind us that children are fragile beings with struggles, hopes, and fears.

The real-life stories indelibly remind us that children are fragile beings with struggles, hopes, and fears.

They need us to voice their wishes for them, and to help them fulfill their deepest desire to live at home when struggling with debilitating illness.

On behalf of Children’s Hospice and Palliative Care Coalition, I thank the contributors for helping us to tell the emerging story of pediatric palliative and end-of-life care. I encourage you to share HOPE with your colleagues, friends, and family. By spreading the word, we add fuel to this compassionate movement.

Hope Notes
HOPE Notes, the blog for Children’s Hospice and Palliative Care Coalition, offers news and views on the latest in pediatric palliative care. Aptly named, HOPE Notes, the blog is a virtual extension of speaking out about the issues confronting children living with, and dying from severe medical conditions. The blog includes contributions from clinical professionals, care-giving and bereaved parents, healthcare journalists and public advocates. HOPE Notes will also be featuring the articles from the 2010 HOPE Magazine, The Pilot Assessment and Capacity Evaluation report on California’s Medi-Cal Pediatric Palliative Care Benefit as well as the latest 2012 HOPE Magazine to ensure these stories continue to emanate their insight and lead discussions on care for children with serious illness.

Readers of HOPE Notes will learn about public policies affecting pediatric patients, educational opportunities in the field of pediatric palliative and end-of-life-care, community-based care for children, innovations in pediatric medicine, and much more. The blog also features the first-hand experiences of children, parents and the clinical professionals entrusted with their care.

I believe that stories save us from isolation. They connect us to knowledge and shared experience. Fundamentally, stories remind us of our humanness.

On behalf of Children’s Hospice and Palliative Care Coalition, I thank you for helping us to tell the emerging story of pediatric palliative and end-of-life care. I encourage you to share HOPE with your colleagues, friends, and family. By spreading the word, we add fuel to this compassionate movement.

  • Kathie Nunes

    I have been involved with Fransiscan Hospice & Palliative Care in Western Washington for several years. My mother passed away while on hospice care in 2010.I would be interested in volunteering in Children’s Hospice & Pallative Care as well. My daughter is a long- term cancer survivor. I have not lost a child, but do understand what parents & children go through during a life threatening illness. My daughter was 3 years old at the time of cancer diagnosis. My grandson is 5 years old & has severe asthma & severe food allergies. In his situation we always have to be on guard to his health needs. One minute he is fine & the next minute he is at deaths door. I believe I would be a good candidate in this particular arena. In addition, I do have 35 years of experience working with children.I look forward to receiving feedback. Thank you for your time & thank you for what you do for children & their families.

    Sincerely,

    Kathie Nunes

  • Jennifer

    Hi Kathie,

    Thank you for visiting our website and reading our blogs, and most of all, for sharing your experiences. To discuss volunteer opportunities, please call our office at 831-763-3070.

    Sincerely,
    Jennifer L. Ramirez
    Deputy Director – CHPCC