Friday, February 15, 2013Tonight's picture was taken in February of 2009. As you can see Mattie did some art work at the hospital and we decorated the outside of his PICU room door with it. Though decorating was just one more thing to add to our moving in and discharge packing agenda, I felt it was worth it. First of all, seeing Mattie's art work, the gifts people gave him, and other decorations we accumulated over a year's time made us feel better. Sometimes these items grounded us to the outside world because living in an antiseptic two by four was beyond challenging and stressful. But our decorations also signalled to others in the hospital that this wasn't just a room, this was our home. That a child was living inside this room, and this child had interests and therefore shouldn't just be a number to them. So I decorated for MANY reasons!
Quote of the day: The best index to a person’s character is (a) how he treats people who can’t do him any good, and (b) how he treats people who can’t fight back. ~ Abigail Van Buren
This morning was busy. We began the day at our exhibit hall table. Peter and Dave manned the table together and interacted with many attendees, I joined them at about 8:45am. I am happy to say that t-shirts and drawstring bags are popular items at our table and we have gotten several inquiries and opportunities to chat about the Foundation. I transported 80 drawstring bags to California, 200 pens, over 60 t-shirts and other materials. I am THRILLED to see them moving!!! There are about 20 exhibitors in total and we are located next to rows and rows of poster sessions. So we get a lot of traffic because the exhibit hall is also where one gets free snacks and can attend poster sessions. There were 100 poster sessions today!
I went to several poster sessions and talked directly to about 10 researchers. I selected topics from art therapy to end of life care and bereavement. I truly enjoyed chatting with the art therapist and exploring some of her patient artwork. I also met a lovely researcher from Dublin, Ireland and spoke to him about a wonderful end of life care study. The study revealed that no one on the care team likes delivering the news that a patient is dying. However, when this message is delivered by the multi-disciplined care team rather than one person on the team then each member of the team feels better supported and able to help the patient and the patient's family. I remember all too well how no one really wanted to talk to me about the fact that Mattie was dying. Until Tricia, Mattie's nurse, confronted me. Keep in mind that the Hospital's policy was that this information had to be delivered to a patient's family by the treating physician. That did not happen, now looking back at this more objectively I can see why this was hard news to deliver and why people were uncertain how to approach me with Mattie's pending death.
Peter snapped a photo of a poster session that intrigued him. I surmise this interested him because assessing for "burden," caregiver stress, and depression were all components of my research work years ago. It is ironic that I investigated the stresses of caregivers of older adults while in graduate school and as a professional, and yet when Mattie was diagnosed with cancer, I got to live out so much of what I already knew from years of research. Though I was caring for a child with a life threatening illness, there are great overlaps in the types of stressors experienced by all types of family caregivers. 
I was fascinated to see the format of poster sessions now. The last time I had to do a poster session, which was years ago, we literally were tacking up 8 1/2 by 11 inch pieces of paper on a cork board. Now with technology the illustration of data looks so much more professional. This study conducted at Sloan Kettering was not earth shattering to me at all. Family caregivers have as much if not more mental health issues as the actual patient and report high distress and need for support services.
A summary of the results! I think bullet point three is key. Caregivers of older adults or those like me who cared for a sick child do not have the time or resources to devote to their own psychosocial needs and care. We know we need to take care of ourselves, but that can't happen unless we know that our older adult or child is being cared for in our absence! Mechanisms need to be put into place to give us these much needed breaks so that we can potentially find outlets to care for ourselves. 
In this photo you can see Dave interacting with a conference attendee. The lady in the photo is Andi. Andi is a counselor who works with Jason's Dream, a non-profit that provides financial help to children and their families battling cancer. We learned about Jason, his battle with Burkitt's Lymphoma and how this Foundation in his memory is helping grant wishes to many children. To read more about Jason's Dreams, go to: http://www.jasonsdreamsforkids.com/index.html
Our neighbor in the next booth, Michelle, took this photo of us today! Pictured are: Peter, Vicki, Denise, and Dave! For Peter and I, having Denise and Dave with us has been incredibly helpful. Not only from a logistical standpoint, but from a social and emotional one as well!
Dave took a close up of Peter and I With our Banner. We received a lovely compliment from one of the psycho-oncologists we worked with yesterday. He told us that the word on the street is that we are the "real deal" and we know how to get things done! I accept this title happily!
After morning sessions, we stepped outside of the conference center and saw Catalina in the distance. Typically it is so hazy or foggy that it is hard to see this island. But today it was crystal clear! The blue water is a therapeutic sight to see.
I have no idea how this particular Hyatt Regency has trained their staff. But I can say that I haven't experienced such professionalism, care, and hospitality in a very long time. They will make it very hard to leave this property tomorrow. EVERYONE is extremely helpful from the person cleaning your room to even the person who opens the door for you and wishes you a good day. They spoil you and frankly other hotels could learn a lot about the art of service by studying this hotel's model! This 29 acre property has fountains in each garden. I went around snapping photos of fountains today. Mattie would have LOVED this aspect of the hotel. 
In the lobby of the hotel is this incredible floral arrangement. It greets you as soon as you enter the hotel, but there is also an inviting fragrance being piped into the lobby as well. I can't determine if it is like a homemade apple pie or some sort of fall harvest fragrance. Either case, the charm of the staff, being right on the ocean, and surrounded by greenery makes this hotel top on my list. 
The conference center is connected to the hotel by this charming open air atrium. Again you can see a fountain surrounded by breathtakingly beautiful flowers. 
The part of the complex where our hotel room is located, you can see a Koi pond. I went over to visit the koi today, something Mattie would have definitely done if he were with us. In fact, there are many families here with their children. Of course as we see them interacting with their children, it makes us pause and of course this highlights who is missing in our lives or the simple fact that we can't share this experience with him, like other parents can with their children. 
I end tonight's posting with a picture of these glorious flowers that I fell in love with. They look like some sort of sea rose, but I don't know what they are actually called. Other than vibrant and beautiful! Tomorrow is the last day for us at the conference and at 2:20pm we will be receiving a distinguished public service award. Thank you for checking in on the blog and for sharing our Huntington Beach journey with us this week!
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