Wednesday, December 10, 2014

American Society of Hematology - Sickle Cell Awareness



The American Society of Hematology had its annual meeting in San Francisco, Ca this past week.

Sickle cell disease was on the agenda and Dr. Dubaun gave an account of our struggles during his  Ernest Beutler Lecture Series presentation.

Take a look at the images of the people who help us live.

Flicker images here.


Sunday, November 30, 2014

Sickle Cell & Bioethics - What is it?


At the Johns Hopkins Berman Institute of Bioethics there is a vision of hope.

Specific to Sickle Cell, there is the VISION OF HOPE: INTEGRATION OF PALLIATIVE CARE IN CHRONIC PEDIATRIC DISEASE


The Vision of Hope Project builds on the curriculum developed by the Initiative for Pediatric Palliative Care (IPPC) to help facilitate the learning of practices in providing comprehensive and integrated care for adolescents and their families.

What - originally piloted in a 2.5 day retreat-style and subsequent 60-90-minute in-service trainings

Where - at selected children’s hospitals throughout the eastern US.

Why - a holistic interdisciplinary model of care that incorporates emotional, spiritual, developmental, and physical dimensionsotional, spiritual, developmental, and physical dimensions.

Thursday, November 20, 2014

The price of fun - life with sickle cell



I recently attended my twin grand children's 2nd birthday party. I travelled to an area that recently had a rain storm. Though it had past, the chill was still the air. The chill got into my arm and that was it! I spent the next week fighting with sickle cell. I did everything I knew to NOT have a crisis. I used heat, pain killers and a whole lot of prayer.  Fast forward, I beat the odds once again.

As I age, I have to consider everything I do. I must consider travel time, what the temperature is, how much "FUN" I will be having, and recovery time from this fun.

My goal is to see these two babies graduate college, get married & have children of their own. This is my prayer. And, I'm going to do everything I can.....God willing....to see these wonderful days.


Thursday, September 18, 2014