Tonight's picture was taken on November 18 of 2008. It was six days after Mattie had his second major limb salvaging surgery. A surgery which removed cancerous bones from Mattie's right leg, left arm, and left wrist and replaced them with prosthetics. Mattie was hardly functioning after surgery and needless to say this greatly impacted his mood. Pictured around Mattie were his "3 angels," Linda (Mattie's child life specialist), Jessie (Mattie's art therapists), and Jenny (Mattie's art therapist). Jenny and Jessie designed the plastic bin fish tank you can see sitting on Mattie's right side. Their artistic talents were incredible. They hand designed fish and put magnets on each fish. Then they created a miniature fishing pole with a magnet on the end. The goal was for Mattie to use his limbs and catch fish. They knew Mattie loved to go fishing on the Potomac River with Peter, so they tried to simulate the experience within our PICU room. Years may go by, but I will never forget the kindness and skills of these three women.
Quote of the day: When faced with two equally tough choices, most people choose the third choice: to not choose. ~ Jarod Kintz
Occasionally I go back in time to review the blog. I went back to December 1, 2008, five years ago today. I copied and pasted that posting below for you to read if interested. When I read blog postings from the time Mattie was battling cancer, I really am in awe. I am in awe because what you might not be able to decipher is my complete lack of sleep and the intense stress we were living under. Some nights I slept no more than two hours. Yet somehow I was able to string words together and be not only coherent but express what was going on from Mattie's perspective and our own.
From this 2008 posting, I can proudly report that I have changed the admissions process for HEM/ONC pediatric patients at Georgetown University Hospital. No longer do families have to check in through the admissions department. Now patients and families can go directly to the pediatric clinic and then the clinic will process the paperwork for admission. When Mattie was alive, we would first have to go to the clinic, get examined and approved for in-patient treatment, and then we would have to walk (remember after November of 2008, Mattie NO LONGER WALKED!) to the admission's department and fill out paperwork for a hospital stay. Paperwork which I had filled out countless times before, with each admission to be exact. That might not sound frustrating but when you are balancing cancer care, a sick child, and a host of fear and trauma reactions, this venture down to admissions can start another crisis.
While serving on the parent advisory board of the Hospital, I mentioned that this admission process needed to be changed. So I contacted the patient advocacy department and put my issue in writing. I was very specific and cited many examples. I even had the hospital confirm my frustrations with doctors and nurses, all of whom were equally unhappy about the chaotic process. Literally within months after advocating for this change, the change was made. I am pleased that at least other HEM/ONC families do not have to do the admissions run around.
The second issue that this 2008, posting brings up for me was Mattie's first assigned oncologist. This doctor did not relate well to Peter or me. But more importantly he did not understand Mattie or our close dynamics. As you can read below, one day the doctor confronted me to imply that Mattie's tantrums were caused by ME and our close relationship with another. You can see my initial reaction to this, which was acceptance. But after thinking that over for about five minutes, reality hit me in the head and I put an end to that insane line of reasoning. This doctor and a particular PICU nurse did not have the foggiest notion about Mattie or us and yet they were quick to label us as the problem. The problem had NOTHING to do with parenting and everything to do with medical post traumatic stress disorder. A disorder that wasn't diagnosed by the doctors but my me, and seconded by a psychiatrist! If I did not advocate for the appropriate mental health treatment, Mattie would still have been hysterical, fearful, and unable to function. Psychotropic medications were very much needed in this extreme case and to this day, I will never forgive this doctor or nurse for being so judgmental and out of touch with Mattie's condition and our situation.
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Posting from December 1, 2008
There is so much to report, I don't even know where to begin. I will start by telling you about Sunday night. Mattie had an awful night of sleep. Basically he kept me up with his night terrors until 5:30am. At which point, I awoke Peter and told him he needed to go downstairs and spend the next two hours with Mattie so I could get two hours of sleep. I felt bad doing this to Peter but if I did not get some sleep, I knew I couldn't function today. I tried to encourage Mattie to take pain medicine last night, but he is refusing all oral pain medications now. I think he understands the connection between the medicines and his night terrors.
Mattie and I got dressed and packed up to go to the hospital today. Because his wheelchair is SO bulky, I couldn't take much with me to the hospital, the rest of the things we needed went into Peter's car. Getting Mattie to the hospital today was a production and fortunately my parents helped by dropping us off at the hospital door so we could just roll right on in. We went to the clinic today so Mattie could have his check up first before checking into the hospital. We waited in the clinic from 11am until 2pm. While we were waiting to see Dr. Snyder, Mattie played with Jenny. Jenny and Mattie are building a Christmas house. While they were doing that, I went to register Mattie for admission into the hospital for treatment. This is a task that truly upsets me each time. It is such a bureaucratic waste of time and energy. Though I practically know each person in admissions now, every time Mattie comes to the hospital I have to register him. Really this would be fine if we weren't such repeat customers. But I really feel cancer patients should have a streamlined admissions process. As a parent of a child with cancer, I am so worried about everything, should I be worried about the paper work too? I got so incensed by the process (mind you I have done it lots of time before, but the more tired I get, the less patience I have for this kind of busy work) that I called our patient advocate, Julie Andrews. I will see what Julie can do about this, because in my book I want to help myself and other families dealing with this additional stressor.
When I got back to the clinic, I found that Mattie was playing nicely with Jenny, until a nurse came over and told Mattie she had to check his weight. She wanted to put him on a bed and weigh him that way. As soon as Mattie heard this he instantaneously got scared and cried uncontrollably. Then started screaming that no one was allowing him to have lunch. I negotiated with him to pick a time the nurse could come back and weigh him. He selected 20 minutes and during that time my parents went around campus and brought back a mini cheese pizza for Mattie (which is what he wanted). I had the distinct feeling that things were going to get ugly before they were going to get better today. Twenty minutes later, the nurse and Drs. Toretsky and Snyder descended upon Mattie. The whole next episode was painful to watch, much less to experience. Dr. Snyder wheeled Mattie back to an exam room, and Mattie was clinging to me. So picture me walking sideways, with his arms wrapped around my neck screaming. When we got to the exam room, we tried to explain what the doctors needed to do and why he needed to be weighed. The nurse was going to pick Mattie up and place him in the bed, and I basically told her not to touch him. I then asked Mattie to comply and stand up himself and walk to the bed to be weighed (they can weigh you in a bed, because they can zero out the bed, and when you sit on it, it can calculate your weight). Mattie went along with this, but he really did not want to sit on the bed, much less lie down on the bed for this process. During this entire time, Mattie was absolutely hysterical, wouldn't talk to anyone but me, and was inconsolable. It was a very real fear for him, not the act of a child being non-compliant or testing the waters. All the doctors left the room, because Mattie demanded they leave, and the nurse and myself were left in the room. However, Mattie just got so upset with the idea of sitting on a hospital bed, that it was almost too much to handle. So finally I asked for a scale to be brought into the room, because Mattie would be happier doing it this way rather than being confined to a bed. We finally got his weight this way. Throughout this ordeal, my parents and my friend Lorraine were in the clinic watching and hearing this emotional meltdown through the door. The interesting part is that both Drs. Toretsky and Snyder got to see a glimpse into the kind of week Peter and I have been dealing with at home. A week filled with anxieties, fear, and emotional outbursts. Both of them commended me on my patience, and then said they couldn't have handled Mattie the way I did. They also then started mobilizing and finding ways to help us through these issues with Mattie, because at this rate, I won't be able to sustain Mattie's care. This was blatantly obvious today when they saw his reaction to a simple request. I have been complaining all week about Mattie's fears and anxieties, but I guess seeing the behaviors unfold in front of you makes a lasting impression.
Mattie continued to be agitated for most of the afternoon. He had a meltdown about the type of legos I brought to the hospital, and thankfully my parents ran back home for me to bring the type of lego he wanted. Dr. Toretsky then paid me several visits in Mattie's room. The first time he visited Mattie was crying and screaming, and the second time, Mattie was asleep, most likely from all of his tantrums. Jane (Mattie's PICU nurse) at one point came in and told Mattie that he needed to stop screaming. That no one can help him with all the screaming. She told him to calm down, focus on our sound machine, and take a deep breath. They had me waiting in the hallway while all of this was taking place. Mattie did quiet down. So some things were concluded today. One, Mattie isn't really experiencing pain, he is dealing with anxiety (which is what I have been saying all along), and two, Dr. Toretsky explained that Mattie has set up a bad cycle with me. Because I was primarily responsible for his care at home and did not have a whole hospital staff at my disposal, Mattie learned how to act in such a way that would guarantee my 100% attention. I am sure that wasn't an easy message for Dr. Toretsky to deliver to me, and frankly I have mixed feelings about what he is saying. Part of me agrees, certainly my behavior impacts Mattie's. However, from a parent's perspective when your child is in fear, can't sleep, has gone through so many traumatic events, it is hard not to want to comfort him. At first I felt bad, but as I have been thinking about it, I use Sandra's (our in home nurse) acronym, WTF!? I am doing the best I can do, and I know Mattie's fears are real and I did the best I could to keep him safe, secure, and protected. Tomorrow a psychiatrist is coming up to talk with us. To evaluate the situation. Mainly because I want to help Mattie get through his fears and anxieties, I am willing to deal with this and strategize with this doctor. But I am in no mood at this point to be hearing how I helped contribute to Mattie's emotional condition.
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