Friday, January 13, 2012

Friday, January 13, 2012

Tonight's picture was taken in January of 2009 in a hotel in New York City. We took Mattie to New York to begin his experimental treatment of MTP at Sloan Kettering. I will never forget the hotel, The Affinia Gardens, we stayed at! When we checked into the hotel, they took one look at Mattie and us in the lobby, and immediately upgraded us to a suite with a kitchen, two bedrooms, and two balconies. Some how we really needed that touch of kindness. Thankfully we had Karen and our former neighbors from Washington, DC in the city, and it made the fear of having to be in a hotel and starting a new therapy less isolating. However, on the day of our arrival into the hotel, we were handed a package that came in the mail for us. The package was from Linda, Mattie's Childlife Specialist. I distinctly remember the card within the package, because she wanted us to know that our Georgetown Hospital family were thinking of us while we were away. I found that SO touching. Mattie loved all the great items Linda sent him. Linda knew exactly the kinds of things that interested Mattie, and the LEGOs and puzzles were a hit.

Quote of the day: We're never so vulnerable than when we trust someone -- but paradoxically, if we can not trust, neither can we find love or joy. ~ Walter Anderson

I have been reflecting on our dinner out with Jerry and Nancy this week. As I mentioned in Wednesday's blog, Jerry and Nancy were music volunteers at the hospital, who we instantly related to and appreciated because of their kindness, healthy diversion from our cancer battle, and their positive impact on Mattie. While at dinner we began talking about what our experiences were like living at Georgetown Hospital. After all, Jerry and Nancy met in the hospital while Nancy's son and Jerry's niece were in the PICU. So we all know quite well from a personal standpoint what it feels like to live in a PICU.

I sometimes make the assumption that we all have the same experiences, especially when living under the same conditions. But of course that is NOT true. I feel as if Peter and I have lived out Anderson's quote, because as soon as Mattie was hospitalized in August of 2008, we were very vulnerable. We did not have our friends and family around us and EVERYTHING and EVERYONE seemed foreign to us. Actually I would even beg to say that living in a hospital environment is like moving to another country, because there are customs, traditions, values, and a whole order to how the place operates. It is safe to say that we were hospital outsiders in August of 2008. However, Peter and I had a similar philosophy.... if nurses were going to come into our room and work with Mattie, then we were going to get to know them personally. Actually I am not sure if this is my philosophy in life because of my profession or because this is who I am at the core. Getting connected to people is important to me, and it was never more important than in the PICU. We got to know who our nurses were dating, we learned about their husbands, their children, their homes, their pets, their hobbies, their vacations, and so much more. Things you would most likely share with your family and friends. So while we were adjusting to their system and culture, they were also adjusting and getting accustomed to ours! I made the assumption that ALL pediatric families related to their nurses the same way we did. But as I was talking to Jerry and Nancy, they just looked at me in amazement. They were looking because they never forged this type of connection with their nurses and they went on further to say that they really don't see this happening with other patients they observe and work with.

I am not sure how I feel about learning this news. About our uniqueness! But I guess a part of me isn't surprised. I always felt that Mattie's nurses bonded with us and they were no longer just our healthcare workers, but they became part of our medical family fighting osteosarcoma with us. Mattie's nurses looked out for us, they advocated for us, and it wasn't unusual for me to receive hugs, a back rub, and hot tea from them! All extraordinary and compassionate women. In addition, my hypothesis is that Mattie's experience with some of them was so challenging that several of them either left the unit or even the hospital to work somewhere else. Naturally no one will ever confirm that for me, but there seemed to be a mass exodus of people after Mattie died.

So as Anderson's quote implies, by being vulnerable, honest, and sharing our feelings, fears, tears, and laughter, we developed a great deal of trust in one another. Through this trust.... love, hope, and joy were achieved. Who knew such things were even possible in a PICU. However, as we admitted to Jerry and Nancy, when Mattie died on September 8, 2009, we lost a huge part of our life that day, but when we had to leave our medical family behind and head home, it made the loss seem almost impossible. We entered the hospital as three people, and left with only two! In addition, the people we turned to for 14 months during Mattie's cancer battle, were no longer part of our daily community. Cancer is all about loss, and the loss does not only occur at the time of diagnosis and perhaps death. It happens at every stage of the treatment and even recovery process.

Today was another whirlwind day with a six hour long license board meeting and ethics violation trial. So I am wiped out tonight. However, I would like to share one more commentary from the undergraduate reflection papers. I found this one quite insightful. 

"To be completely honest, over the course of my Georgetown career, there have been few classes that I have looked back and gone "that was highly impactful to who I am as a person." This class has been able to have this effect on me mainly because of our involvement in Mattie Miracle. It has been an unbelievable experience and one that I hope to stay involved with throughout the following years. Throughout my life, I have been fortunate enough to be able to experience working for my family's foundation that gives away money each year. This is an extremely rewarding experience but it is not the same as what we did with Mattie Miracle. This project has been hands on, and we have been able to see the actual contributions and suggestions we made come to fruition. The event throughout this process that really stuck out the most was helping push the snack cart throughout the pediatric units. This was an unbelievable experience and really opened up our eyes when we did it. The thing that stood out about it was the extremes. There were the really young kids, who were in a crib and had so many things hooked up to them, it was devastating. Then on the other extreme, were the older kids who looked like they were more towards our age. This was something that we could relate to. But what it really did was put everything in perspective. We go through our days complaining about little things like a homework assignment or paper, while in reality we have an amazing opportunity to go to this amazing school while we all have relatively good health. We worry about things that are so minuscule in comparison to what these kids are going through that when you see their lives it really gives you a deep appreciation for what you have in your own life. In addition, when we pushed the cart around, we got to see the faces of the parents as they were actually going through the process. Vicki and Peter have already gone through it, as they talked to us in class. That is not to take away from anything they have been through, but they are not in the process at the current moment like these people. Seeing their faces and the pain that was in these parents as they watched their children go through this extremely tough process was unbelievably hard to see."