Tonight's picture was taken in January of 2005. Mattie was at a birthday party with his cousins. The funny part about Mattie was the "cake time" was not his favorite part like most children! Mattie would pick at the frosting (maybe) but for the most part Mattie was NOT in love with desserts or sweet things. Instead, he saved those treats for me. I always did very well in the deal. I got most of Mattie's treats! However, as you can see right in front of Mattie was a sippy cup! That thing never was far from reach. We always had a cup filled with milk in tow with us where ever we went. Which wasn't easy because milk spoils easily especially in our hot summers! With the amount of milk Mattie drank, we always thought Mattie would have had the strongest bones around.
Quote of the day: The purpose of human life is to serve and to show compassion and the will to help others. ~ Albert Schweitzer
Over the weekend my long time friend Mary Ann, sent me the article below entitled, "When a Nurse Says Goodbye." As soon as Mary Ann sent me the article, the title intrigued me, so I immediately read it. Mary Ann knew that Mattie's nurses served a crucial role in our lives and I suspect when she sent this to me, she had a feeling the article was going to resonate with me emotionally. She was absolutely correct. Mary Ann and I went to graduate school together and we met in our ethics class and became instant buddies. You can learn a lot about a person in an ethics class and of course the test of time places a great deal of challenges before us. Yet our friendship has remained consistent. To me that is something to be celebrated.
I am deeply grateful that Mary Ann and several of my other faithful readers understand the meaning and connections that I feel for Mattie's nurses. To me these are extraordinary women who went above and beyond the call of duty to care for Mattie, Peter, and I. Naturally, there are a few that I am particularly indebted to and remain in contact with even today. These nurses remain a continual part of my support system. Tricia was one of Mattie's HEM/ONC nurses who we met the first week of Mattie's treatment and Debbi was Mattie's sedation nurse. These nurses may have been part of the hospital team who cared for Mattie, but in essence became a part of our family then and remain a part of it today.
When I read Mary Ann's article below, I actually forwarded it to Tricia. There were so many times within the hospital that she helped Peter and I. In countless ways. Here are the top three listed below that should never be forgotten and the beautiful part about all of this is the feelings we have for Tricia are mutual (as the article so eloquently illustrates about nurses)!!!
1. The first week that Mattie under went chemotherapy, he was very upset, emotional, and aggressive. While in his hospital room, he became inconsolable and hostile. He started yelling at me, he told me he hated me, and then threw me against the door and started to kick me. Tricia was in the room with us and observed it all. Mind you neither one of us had much sleep because we were adjusting to living in the pediatric intensive care unit and we were stressed out and frazzled with this new diagnosis of cancer. Tricia could have easily walked out of the room to let me deal with this tirade. However, she didn't! She instead got a hold of Mattie and told him that he did not mean what he said or what he was doing. She told him that we were both tired and moved us both to his bed and tucked us in together for a nap. She understood my feelings were hurt and I was crying, and she got all these feelings because she is a mom herself. Her kind, compassionate, and sensitive gestures, showed me that day that I was not only dealing with a competent health care professional, but I was dealing with a human being who cared for my son and my emotional health. She wasn't going to walk away when times got tough and with cancer times are always tough!
2. One of the pediatric intensive care unit (PICU) nurses mentioned to Mattie's physician that the reasons Mattie complained of pain was because of me. That he was seeking pain medication to get my attention. She felt that Mattie spent TOO MUCH time with me and that particular afternoon this nurse barred me from Mattie's room. Meanwhile Mattie was in his room SCREAMING for me to come back!!! In the hallway, I was sitting with this PICU nurse, Mattie's physician (who believed the PICU nurse over me!), and Tricia. Thankfully Tricia was working that day and not only put this PICU nurse in her place but also gave it to the physician. Tricia fortunately had been working with our family for a much longer period of time than this other nurse and knew our family dynamics. It was an absolutely horrific moment and without Tricia's advocacy Mattie would have been beside himself and I honestly felt like I could have throttled a nurse and a physician that day. Clearly in retrospect, we now know that Mattie had dealt with extraordinary pain throughout his entire battle and I sometimes wonder how some of these physicians who wanted to withhold meds from him feel about this NOW?! If they even think about it at all!
3. The final example (though there are MANY! with Tricia) relates to the article. In August of 2009, Mattie was complaining of not feeling well. He hadn't been eating. He couldn't drink ANYTHING either. The doctors kept telling me this was a side effect of the chemo. Some even told me that Mattie was manipulating me and that was why he wasn't eating (as if a seven year old post chemo was going to be developing an eating disorder??????). Finally I couldn't take it any more and we demanded that Mattie get rescanned. It was on scanning that we learned that Mattie's cancer spread everywhere just 6 weeks off of chemotherapy. The doctors SEEMED stunned. Despite being stunned, we treated Mattie with cyberknife radiation to reduce the pain. In all reality the team was so focused on his treatment for so long, the transition to end of life care was impossible to accept. I couldn't accept it either. However, about a week or so before Mattie was going to die, Debbi and Tricia finally confronted me. Debbi actually started the process with me outside in the hospital garden and then Tricia addressed it with me inside the hospital. At the time I did not understand why none of Mattie's doctors could tell me. But I have come to understand that discussing death with patients and their families is just not something doctors are comfortable with, it seems to me their training is lacking, and their goal is to fix and heal. Yet unfortunately with cancer this isn't always possible. I am so grateful for the truth and I am grateful that Tricia cared about our emotional health then and today.
For every family member who had a special connection with a nurse...... this article is for you!!!!
http://kitchentabledevotions.com/when-a-nurse-says-goodbye/
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