Monday, March 26, 2012

Monday, March 26, 2012

Tonight's picture was taken in April of 2005. That day we were celebrating Mattie's third birthday. As you can see, he was holding up three fingers to indicate how old he was. Birthday parties were challenging for Mattie. He did not like the noise, commotion, or lots of people around him. I would say the first three birthdays, Mattie typically landed up crying and needed time away from the party to regroup. However, this issue was short lived. Because by age 4, Mattie liked to socialize, he liked spending time with his close friends, and he appreciated most activities!


Quote of the day: Adopt the pace of nature. Her secret is patience. ~ Ralph Waldo Emerson

I began my day by going to the medical records department at Virginia Hospital Center (VHC). One of my doctors requested that I get a print out of two procedures in particular I had done at the hospital, because he feels that  my current situation maybe directly linked to my past medical history. Though VHC is a smaller hospital in comparison to where Mattie was treated, the turn around time to process medical records was slow. I requested these materials two weeks ago, and when I called on Friday, my request was still pending. Until I started screaming. It saddens me that the only way to get things accomplished is to scream, but fortunately for them I was busy with the Symposium, that I let me guard down for two weeks. Tomorrow, I will take this 50 page report with me to see my doctor in Maryland.

In the midst of paying Symposium bills, catching up on things all around me, and dealing with medical records, I did go to see Mary (Ann's mom) today. Mary was waiting for me, and as I walked in her room her eyes got bigger and I knew she was acknowledging me. For the most part, Mary is now mute, and caring for someone who is unable to talk is beyond challenging. Mary hears just fine and she most definitely understands what you are saying to her, it is just that her neurological disease leaves her trapped inside her body, unable to vocalize. I brought pictures that Ann had emailed me while she is on her vacation for Mary to see. I feel that the pictures help orient Mary to the fact that Ann is gone and also I believe the pictures allow Mary to know her family is thinking of her. After showing Mary the pictures, I taped them up on her wall, so she can view them the whole week. I also have the "Ann countdown chart" that I made up on the wall, so Mary understands when her daughter is coming back. Without a countdown, it truly is hard for Mary to distinguish the passing of time. This is not only a Mary problem, this can happen to any of us living in an institution. When your schedule is the same each and every day, and you do not leave your room and interact with others, it is absolutely disorienting. I remember this feeling quite well while caring for Mattie in the hospital. Some days I was so confused, I did not even know what season I was in, until I saw how people in the "free" world were dressed as they came into the hospital.

As promised, here are some more pictures taken at the Symposium!!!

This is a close up of one of the five outstanding legislative leadership awards we gave to congressional members. This one happens to belong to Rep. Mike McCaul (R-TX).

Before the Symposium took place, my friend and colleague, Denise came up to talk with me. Sheryl, our photographer, caught this special moment. Denise and I went to graduate school together, and Denise's daughter is Marisa. Marisa is in college now, but in the summer of 2009, she helped me with Mattie when he was home periodically between hospital visits. In addition, Marisa runs our Walk bake sale each year. This year will be her THIRD year coordinating and baking for the bake sale! Denise came up to me at the Symposium to give me a hug. With the hug came the message that it was from Marisa, who was thinking about me and wishing us luck from NY! Several months before the Symposium, I talked with Denise about how to get the word out to the professional community about our event. Many of her ideas were very fruitful, and I found once I got connected with one professional group, the rest started to get on board!

In this picture from left to right are: Ann Henshaw (Mattie Miracle Board Member), Vicki, Jimmie Holland, MD (Founder of Psycho-oncology), and Peter. Jimmie lives in New York and is affiliated with Sloan-Kettering. Lori, one of the wonderful psycho-oncologists on our panel gave me Jimmie's email address and to my surprise, when I told Jimmie about the event, she not only supported it but was gracious enough to attend it and say a few words. Jimmie, in fact, emailed me today, and looks forward to working with Peter and I in 2013. Her organization is hosting its 10th annual conference in California in February of 2013, and we are brainstorming ways for Mattie Miracle to support this endeavor and give pediatric psycho-oncology a presence at the conference (a conference that typically focuses on adult psycho-oncology research and needs).

This powerful group, was our parent speaker panel! Their stories, insights, and feelings made the afternoon very meaningful and memorable for all attendees. This group reminded us why we needed to have this Symposium and why it is vital to discuss the psychosocial needs of children and their families battling childhood cancer. From left to right are: Neely and Jon Agin (Parents to Alexis, a DIPG angel); Peter, Marilyn Eichner (Mom to Danielle, a Leukemia survivor), Gavin Lindberg (Dad to Evan, a Neuroblastoma angel), Patty Lubin (Mom to Greg, an Osteosarcoma survivor), Diane Mauk (Mom to Holden, a Brain Cancer survivor), Toni Johnson (Mom to Brandon, a Lymphoma survivor), Ann Henshaw (Mattie Miracle Board Member), Vicki, and Terri Tomoff (Mom to Ryan, a Leukemia Survivor).