Thursday, May 5, 2016

Thursday, May 5, 2016

Tonight's picture was taken on May 19, 2008. Peter and I both came into Mattie's class that day to give the children a lesson on coconuts. Where they grow, what their materials (husk, water, and fruit) are used for and then the special treat was they got to watch Peter open up a coconut that his parents sent Mattie from Florida (right off the tree). If you have never seen such a sight, it is something, because the husk of a coconut is very fibrous and impossible to remove for most of us. Of course on the islands they seem to throw the coconut onto a stake and are able to rip it apart that way. But for the rest of us, we need power tools. The kids got to go outside and watch a drill being inserted into the coconut and of course witness how difficult a task this was. Then after the excitement was over they came back to the classroom got to taste the real coconut meat and also experienced coconut bread, which I baked. It was quite a visit to the classroom for us. 


Quote of the day: Generosity is not giving me that which I need that you do, but it is giving me that which you need more that I do. ~ Kahlil Gibran

 Today we attended the APHOES/AECMN conference held on the huge St. Jude Children's Research Hospital campus. I definitely mean HUGE!!! It is a compound literally and surrounded by gates. You can't get onto it without going through a guard gate. It is like no hospital campus I have ever been to! Well perhaps it is on par with going to the National Institutes of Health campus. Same sort of expanse and acreage!!!

What is very apparent by touring St. Jude is it is a LARGE business. They may do innovative research but the fundraising and marketing are both impressive. I can assure you that while on campus, we heard about three different stories regarding the origins of St. Jude. Which was started by Danny Thomas. However, what I am getting at is the STORIES aren't the same. I will leave it at that!

However, the hospital is about RESEARCH and in my perspective psychosocial services are not given the same priority... as their location in the hospital speaks volumes (these services are in the basement). I don't know why I was under the impression that the Hospital had a large number of hospital beds. WRONG. They have 72 beds and most of the treatment is outpatient. Putting this into context, Mattie's hospital (Georgetown) has about 48 inpatient rooms in all three pediatric units. 

I was thrilled to see the psychosocial standards of care being cited in conference presentations today!

Along the line, we also took about a 40 minute hospital tour today.  Interesting enough they start you off at this pavilion which is like a museum! With the history and accolades of the Hospital. Unlike other hospitals, St. Jude is filled with promotional photos of children who have been treated there. Whereas some of the photos are of the children alone and others are children posing with celebrities. I am sure people may feel all sorts of things when seeing these photos. For me, it was a marketing tool ALL over the hospital hallways and in my perspective this is not what I would want to see in a treatment facility I would take Mattie to. 

This ABC of cancer wall was created by Child Life at the Hospital. 

There were about 150 in attendance at the conference, and after receiving the Association's Bridge Award, we received a standing ovation. 

 The Actual Award

The famous St. Jude building you see in all the promotional photos. The campus is a fleshy pink tone. Every building has this color. 

A Sculpture featuring the genomic project, which is an scientific research project being funded by St. Jude. Basically trying to understand the science and genetic makeup of pediatric cancer to eventually target treatments to them using less toxic methods. 

 The Award's committee did a beautiful visual presentation highlighting Mattie Miracle. It was so touching we asked Nicole if she would record herself doing it again and sending it to us. We weren't prepared for it, otherwise we would have recorded it! 

Peter and I with Debbie Guigliano! The other award winner for achievement! We met Debbie in 2014, when we did a presentation at the APHOES conference. Since then we continue to be in touch with her and several other APHOES board members. These are very special ladies, two of whom contributed to the writing of the school article in the Psychosocial Standards of Care publication. 

Us with the entire board! We interact with many professional associations, but we became friends with many of these members! 

Us with Mary Kay Irwin. Mary Kay is the Chairman of APHOES and an outstanding researcher and clinician. It was Mary Kay who first reached out to us in 2014 and invited us to keynote her conference. We have been connected ever since and she reached out to use recently to ask if we wanted APHOES to endorse the Standards. Of course we said yes. We value this partnership!