Tuesday, April 24, 2012

Tuesday, April 24, 2012 -- Mattie died 137 weeks ago today. 

Tonight's picture was taken in August of 2009. By this point we knew that Mattie's battle was a terminal one. As you can see, Mattie looked very sick here. His eyes were dull and by that point he was in excruciating pain. The black box next to him was a pain pump. He received pain medication around the clock whether at home or in the hospital. Getting released from the hospital to go home was a mixed blessing. It was nice to have privacy and to be in our own home, but it was also downright frightening and overwhelming. The amount of medications we were managing required careful record keeping and since all medication got hooked up to Mattie's broviac (central line coming out of his chest) sterile procedures needed to be followed, otherwise, he would develop life threatening infections. In 14 months time, I developed skills that were absolutely foreign to me, but it is amazing how one can rise to the challenge when pressed. Jenny, Mattie's art therapist, worked very hard that day in clinic to engage Mattie. She brought in a remote controlled dinosaur, which under normal circumstances would have made Mattie happy and smile with excitement. But that day really visually captured the fact that cancer was winning and slowly taking Mattie away from us.

Quote of the day: Your life is what your thoughts make it. ~ Marcus Aurelius

Thoughts most definitely influence one's life and for the past couple of weeks I have been pondering an issue a doctoral student from my Alma Mater brought to my attention. This young woman is interested in getting clinical training in a hospital, particularly working with children with chronic or life threatening illnesses. Naturally from an outsider's perspective that probably sounds great and you are asking so what is the issue?! The issue is it is very challenging for PhD candidates in my geographical area to find a pediatric psychology externship/internship within a hospital. So I naturally began by connecting this student to the clinical staff at Georgetown University Hospital.

Today, I met with the director of pediatric psychiatry, Dr. Matt Biel (who was Mattie's psychiatrist), and Dr. Paul Jones (who heads the HEM/ONC pediatric psychiatry team). Psychiatry has moved offices and it is no longer located on the main Georgetown Campus. So locating the new building was an adventure, but once I found the offices, I realized it was a much better location and space. The offices themselves have huge picture windows looking out onto trees. That alone seemed therapeutic to see. I remember the old building vividly. It had an elevator in it that absolutely scared me. It was the size of a telephone booth and OLD! I always felt when I wheeled Mattie's wheelchair into it we were taking our lives into our hands.

Mattie related very well to Dr. Biel and in some ways seeing Matt today brings back certain emotions. Matt is very interested in my desire to start a clinical training program at Georgetown for PhD candidates, and this is actually a function I would like to see the Foundation help spearhead. As I told Matt today, I can't think of a better way for the Foundation to continue to help meet the psychosocial needs of children with cancer, than by training future clinicians. Matt understands without me saying it that my motivation to help others is always firmly rooted in Mattie's memory and keeping his legacy alive. Before our meeting ended, Matt paused and said... "you know in this light, you look exactly like Mattie." Indeed! We looked a lot alike and I wonder what Mattie would have thought if he was in the room with me today watching me talk to Matt. The beauty about Matt and his psychiatry team is they believe in talk therapy, not just pushing medication and medication management. Which is why I believe this would be a very good training ground for doctoral candidates.

Naturally I understand the complexity of starting such a program, and a lot of information needs to be collected from my perspective from PhD educational programs in my area. But as tonight's quote says... your life is what your thoughts make out of it.

Later in the afternoon, I met up with my friend Ann and we walked almost 4 miles together. I can't even remember the last time we walked together, and with that said, I can't remember the last time I went to zumba. Time for exercising doesn't seem to fit into my daily routine anymore.

After two months of weekly acupuncture, myself and the therapist concluded that it isn't working for me at all. So I had my final session today, and continue to be plagued with daily headaches. I tried to be open minded and really hoped this alternative method would work since I know it has been successful for so many people. But I remind myself, as my neurologist told me, I fall into 2% of the population who have daily chronic headaches. These headaches are rare and much harder to treat than migraines. 

Tomorrow will be my last session in Donna's kindergarten classroom. The last session is also labor intensive because it involves setting up a still life for the children to paint and I also treat the kids to a buffet of fresh cut fruit which they can dip into caramel, marshmallows, or fudge sauces. I figure if they are going to paint a still life, they might as well eat it once they are done! So stay tuned for still life painting pictures on Wednesday.