Friday, February 10, 2012

Friday, February 10, 2012

Tonight's picture was taken in August of 2009, a month before Mattie died. As you can see he was having trouble breathing by that point and needed oxygen at all times. Featured with Mattie in this picture was Jocelyn, Mattie's Osteosarcoma buddy, and Denise, Mattie's social worker. As I was sitting in this clinic today taking with Denise, I couldn't help but remember this exact moment captured in this photo.


Quote of the day: What happens to a person is less significant than what happens within him. ~ Louis L. Mann

What happens within a person as tonight's quote aptly points out is not only vital to a person's character development but it is crucial to defining one's mental health and well-being. Sometimes we do not focus upon what we are thinking and feeling inside, because we are distracted by a host of other priorities. It is when we get sick and have to reprioritize our lives, do we then stop and take stock at what we are made of and basically what lies within!

This week has been yet another moment in my life in which I have had to re-evaluate myself, life, and the strength I need to manage again through the medical system. A system which is beyond flawed and in need of an overhaul. If I had a ton of money, I would start right back at square one, which is revamping medical education and training. The importance of empathy, listening skills, and positive regard for a patient's needs and concerns needs to be integrated within medical curriculum. If it currently exists in medical academia, then it isn't effectively being communicated nor applied based on the resulting products I have unfortunately have had the distinction of working with. I thought families of children with cancer needed advocacy and support with psychosocial care and access to services, but what I have learned this week is it is the WHOLE BLOODY SYSTEM. The atmosphere of support for an adult cancer patient is appalling and most likely why there is NO standard of psychosocial support (besides the fact that most physicians don't think it is important or relevant) for children with cancer is because there isn't one already established for adults! Amazing beyond amazing to me! Yet it confirms my suspicions.

Today was an emotional roller coaster. The physician I saw yesterday called me with what I perceived as good news. So I went into my meeting at Georgetown Hospital feeling more positive. Well that is until I consulted with the actual doctor. Now I feel as if I am back to square one and needing more testing. So I head for a MRI on Sunday at 7am. What shocked me however, is he handed me the script for the MRI with no intention of helping me set it up. That may not sound shocking to all of you, however, when Mattie was being treated at Georgetown, we had a whole team of people there to assist me with these tasks. Nothing like this exists in the Lombardi Cancer Center for adults. So I literally walked out of that clinic and text messaged Dr. Aziza Shad, the director of the pediatric cancer center at Georgetown. She is also the doctor who assisted us the week Mattie was dying. This is a doctor extraordinaire, who literally will answer calls and questions from patients at ANY time of day! Though Mattie is NO longer alive, when I have a problem Aziza is the first person I text message. NO matter where Aziza is in the WORLD, she text messages back within minutes. So literally picture me walking out of one clinic with my Blackberry in hand typing to her that I need help coordinating an MRI. Seconds later she wrote me to meet her in her clinic. As I walked into the clinic, she grabbed my script and insurance card and marched herself up to the MRI department and got me an appointment. Naturally I could have called for the appointment myself, but I know how the system works. I wouldn't have gotten a Sunday appointment, maybe next week at best! As Aziza says she has faith for both of us, since I gave up on faith and prayer a long time ago. In fact, you will rarely EVER hear me say "keep me in your prayers." 

While Aziza was working her magic, I had Mattie's nurses and Denise, his social worker, sitting with me. If it weren't for Mattie, I would never have met these amazing women. Women who stopped everything to talk with me for over an hour. I learned today that Katie, one of Mattie's HEM/ONC nurses has her infamous grey sweater hanging over her office chair. She never wears it anymore, yet she can't part with it. For my faithful readers, you may recall that Mattie loved Katie's sweater and would use his "Curious George" left leg and foot to remove the belt from her sweater while she was examining him. In fact one day, he kept her sweater belt for the entire day in his possession. Whereas, Denise was telling me that she still has the flower lei we gave her from the first Mattie Walk in 2009, when he was still with us. She says the lei has dried up but she just can't part with it. I tell you these stories because to me these are very meaningful signs. These are signs that I feel deeply within, signs that tell me we were all connected to each other not necessarily just through a medical process, but we became important to each other. After all friends and family save and cherish memories and mementos like this. So today just by instinct, when I had a problem, I turned to my medical family to help me and Peter once again. They did not disappoint, which is why I feel very convicted to work through the Foundation to financially support several incredible people who make a difference in the lives of their patients and families each day. For these fine professionals, working in a hospital isn't only a job and their income. This is their way of life and being.