Tuesday, August 11, 2009

Tuesday, August 11, 2009

Quote of the day: "Sometimes even to live is an act of courage." ~ Lucius Annaeus Seneca


Mattie took a nap on Monday from 7:30pm to 9:30pm. At 9:30pm, he awoke, and then couldn't go back to sleep until 2am. He was experiencing a lot of pain. Ironically his pain is in his right arm. After his thoracentesis on Monday, Mattie was transferred from a stretcher back to his bed in the PICU. During the transfer, Mattie was moved onto his right side, so that all the sheets and blankets that were wrapped around him could be removed. Because he was under sedation, he did not feel any of this movement, however, I have a very vivid visual memory of this movement, because in hindsight, I realized this wasn't a good position for Mattie's arm. Sure enough, despite having massive tumors in his body, the pain he is experiencing and complaining about is from something that could have been avoided. Any case, I have to let that go, because I am carrying many other weights around with me at the moment. Needless to say, Mattie's pain is so intense, that in addition to his Fentantyl pain patch which he wears constantly, he is also on IV morphine every two hours. Last night Mattie tried to build a Lego model with Peter, but his heart just wasn't into it. We have at least two different Lego models that he started in the room, none of which he finished or wants to pursue. Mattie and I watched Scooby Doo episodes until early in the morning.

At 1am, we determined that Mattie was running an 101 fever. Never a good thing with an oncology patient. Because what that instantly generates is MORE testing. So besides taking tylenol, blood was also drawn from both of Mattie's central lines for cultures. In addition, he was started on antibiotics last night as well. The nights for me are always the worst, and it is funny how things seem to go awry at that time. Mattie was PICU status yesterday, and wasn't assigned a HEM/ONC nurse. However, the PICU nurses were wonderful with him and us. Though he is an oncology patient, you need to understand that most of the PICU nurses know him too, since Mattie had three major surgeries here. By 2am, I had it, I had to put my head down. I slept last night in a chair, and I forgot how much fun that is. Lord knows how I managed this for 11 months, but somehow when you think you are fighting cancer you can tolerate almost anything.

So we shut down at 2am, but Mattie was up periodically through the night, not to mention IV pumps were going off. I don't think I shall ever forget the beeping of an IV pump, it is permanently ingrained in my head. Despite going to bed so late, and period wake ups throughout the night, that did not stop the steady level of traffic that started to float through Mattie's room at 7am. In fact, at 7:30am, a cleaning person entered the room, said good morning loudly, and proceeded to bang around and remove trash. Mind you, the lights were off in the room, and we were all sleeping! I am so exhausted, but I could feel internally that I wanted to just scream. First of all, there is NOTHING good about the morning, and second, does this woman realize we have been up most of the night, not to mention most nights for the last 12 months? Probably not! Does she care, or have compassion that she is walking into a room of a seven year old who is terminally ill? So many things were running through my mind, but the level of insensitivity I experienced today did not end there. Normally, if I was rested, and in a better place psychologically, I could rationalize many of the behaviors I was accosted with today, but this week, I am ABSOLUTELY in no mood for anything.

At around 9:30am, a nurse from sedation entered our room to let me know that she was coming for Mattie in 15 minutes to take him downstairs. I just looked at her, since I was in my pajamas and half out of it, I asked her where she was taking him. She told me he was scheduled for Cyberknife at that time. I told her she was incorrect, his appointment was at 3:30pm. None the less, I learned that the schedule had been changed and instead of someone telling me, so I could prepare Mattie, this did not happen. I was livid and I snapped. I decided to take a shower, while Peter took Mattie down to the Cyberknife department, which is in the basement of the hospital. It is like heading to the catacombs! While they were downstairs, I attempted to take a shower, only to learn that there was NO light in the shower room. We reported the need for a light bulb change, and then I grabbed a flashlight and took a shower (this only added to my already high stress level). But I am telling you this story to highlight more of the incompetence I experienced today. After I got out of the shower, someone from the facilities department came to change the light bulb. Mind you, I was only partially ready, and my hair was dripping. The lack of privacy I think particularly got to me today. For the past 12 months, I have learned to brush my teeth and handle all personal matters in front of just about anyone. It is a humbling experience for sure, but now I am more fragile, and the lack of personal space today, was a major problem. So this fellow who came to change the light became my own personal comedy show today. Mind you we reported that the light was out, but when he showed up he did not have light bulbs with him. He told me instead that he would be right back with a new bulb. He came back about 15 minutes later, but this bulb didn't fit into the socket. This craziness went on three times, until it finally dawned on him that maybe he should actually unscrew the light bulb and take it with him to the parts department. It is now almost 7pm at night, and guess what? We still don't have a light bulb. So apparently it takes 24 hours here to change a light bulb. Maybe longer, we shall see! While this fellow was jumping in and out of our room, I then had another person visit. A cleaning person. She saw I was brushing my teeth and using the sink, but she proceeded in anyway, and then it became a competition between us for access to the sink. She was literally hovering around me. I finally gave up, and took myself, and all my things into the bathroom and closed the door behind me. You need to understand that the bathroom is as small as a closet. But I just needed a minute to myself, where no one was going to be bothering me. My stress level kept building, and as it was building one thing came to my mind immediately! Am I going to let Mattie die in such an environment?! An environment where I can't think for a second, where there is no privacy to be with your emotions, and where his room is like a super highway? I want to clarify that I am NOT talking about the nurses and the doctors. They have been absolutely fantastic. It is all the extraneous other non-essential personnel who are not only clueless but insensitive to the children they interact with. The answer to my questions became a resounding NO!

This morning Jenny, one of Mattie's art therapists, e-mailed me and I told her how upset I was. I have a feeling Jenny mobilized forces, and then of course Linda entered the scene. Linda came up to get me at 11am, to bring me down to the Cyberknife Department. I waited for Mattie there. His procedure was over 90 minutes. During the procedure he was completely sedated. The sedation team was outstanding, as they always are. Debbi (our sedation nurse angel) is on vacation, but Norma, her colleague is helping us. We love Norma too, and she came out periodically to let me know how Mattie was doing. The Cyberknife procedure is being staged for Mattie. The doctor is first targeting the large tumor behind the rib cage. He radiated it today for 90 minutes, and will radiate it tomorrow for another 90 minutes. He will then let us know when the gold seeds have settled in place in the liver to start Cyberknife in that location. It may be later in the week or even next week. Mattie tolerated the procedure very well today, and even came out of sedation quite well. But Mattie is edgy, wants no visitors, and even turned Linda away. That is always my gauge to how well Mattie is doing. So in addition to dealing with the emotional toll of Mattie's diagnosis, Peter and I are working around the clock to care for him and to play with him. This is a lot for us to take on, I assure you! He is complaining non-stop, cries because he can't eat, and wants 1oo% of our attention.

I think it was very clear today that I was upset. At one point, Gail, our patient advocate came by to visit me. Mind you I did not call her, she came on her own accord because she got wind to my level of frustration. I explained to her all the insensitive facility people who came barging through Mattie's room today, and Gail immediately got on it. The PICU staff have also offered to move us to a better room, since we are in Room 1, the worst room on the floor, but Mattie refuses to move. Kathleen, one of our great HEM/ONC nurses tried to rationalize with Mattie about a room change, but he wasn't budging. Gail came back later in the day to let me know that NO ONE will be allowed in our room, without checking with our nurse first!

I also met with Ellen, Mattie's dietitian this afternoon. Ellen told me how Mattie's TPN will be modified. Apparently you can't supplement someone's diet with calories all at once, you have to gradually do this. Ellen gave me the analogy of giving Mattie 10 snicker bars at one time. I wouldn't do that because that would be sugar overload, same thing with TPN. The electrolytes, fats, proteins, and sugars need to be introduced slowly over four days. She showed me Mattie's height and weight on a growth chart, and no surprise to me, he is way below the 50th percentile. In fact, I would say he is in the 10th percentile for weight if I remember the curve correctly.

However, what caught my attention today, was my meeting with Dr. Biel. Dr. Biel is Mattie's psychiatrist. As you know, Mattie has been meeting weekly with Dr. Biel. Dr. Biel discussed with me the play scenario that Mattie plays each time he comes to his office. This was the first time hearing about this. Mattie always plays out the same scenario, and the scenario was initiated by Mattie. He also re-initiates it during each session. Dr. Biel is aware of Mattie's close connection to Jocelyn and Brandon (both cancer survivors), and he is also aware of the difficulties Mattie has been having transitioning back to his outside world. Any case, here is a synopsis of the play scenario. The set is a large house that is inhabited by three ghosts (in essence Mattie, Jocelyn, and Brandon). Mattie is one of these ghosts. The ghosts do not want any worldly possessions in their house, and in each session, Mattie removes anything that is in the house, because he tells Dr. Biel that the ghosts have no use for these things. Also in the play scenario there is a group of children. Mattie does NOT play a child, but instead as a ghost works hard at keeping the children out of the house. He says these children can't and don't interact with the ghosts. The children are not a part of this ghost world. As Dr. Biel was telling me this story, I just paused. Now that we know about Mattie's terminal condition, both he and I couldn't help but feel that on some profound level Mattie is telling us he is different, and perhaps he even knows that he is no longer a child. He is actually exploring or playing out what life looks like after death. I told Dr. Biel, that it is hard to evaluate this without putting my own lens on the situation. Perhaps the scenario can be easily explained away by the fact that Mattie has just watched too many Scooby Doo episodes. But Dr. Biel agreed with me, that this was a more introspective and existential form of play Mattie was performing. I told Dr. Biel that my own seven year old is exploring death better than I am. I also told Dr. Biel something I shared with Ann a few days ago. Mattie told me a few days ago that I should have another child. At the time, I talked to him about it, and I concluded he was just looking for a play partner. But Ann felt that Mattie was giving me permission to eventually move on, if Mattie dies. I hadn't thought about it this way, because having another child seems so disrespectful to Mattie and I am deeply wounded from this whole experience, but Dr. Biel concurred with Ann's analysis. Mattie, at least on a subconscious level, is exploring his own mortality and how his mortality will impact others. Amazing to me! I spoke to Dr. Biel about the fact that I can see pain in many of the hospital staff who know us. He told me that he has had a meeting for all the hospital staff, because everyone is concerned about how to help Mattie in the best possible way. They also know that Mattie is very clever, and they all want to be on the same page about how to respond to his questions, in case he asks them things about his situation when Peter and I are not around. I was impressed that Dr. Biel and the staff had such a meeting. Dr. Biel told me not to worry about the staff, though my natural instinct is to worry about others, he told me that the staff has outlets to handle this type of stress and grief . So in essence the message was to worry only about my family right now.

I want to thank Carrie (my wonderful teaching assistant) and Pat (one of my supervisors at GW) for bringing us a wonderful lunch today. I can assure you that the cookies were very needed to make it through the afternoon. Thank you for supporting us through this difficult week.

We also saw Brandon and his family this afternoon. Brandon's mom, Toni, gave me a big hug and told me she loved me. We love her and her family too, and we shall never forget the time we had together fighting cancer in the PICU.

This evening, Peter and I are wiped out. I can feel my head pounding, I can barely keep my eyes open, and of course my emotions are all over the place. I feel terrible for shutting down and not allowing people in our lives, but at this point, I really can't handle any in depth conversations. It is my hope that our readers understand where we are coming from. Despite not wanting face to face conversations, I still appreciate all your e-mails. We want to thank the May family for a wonderful home cooked dinner and for all the wonderful Lego gifts, and the Senior Saints t-shirt you gave Mattie. The chocolate covered strawberries are SO beautiful. Thank you for your support.

Mattie's fever is back to 101.5 tonight, and therefore is unable to leave the hospital for 48 hours. Mattie heads for his second round of Cyberknife tomorrow at 8am. So keep us in your thoughts and prayers. We are fighting intense fatigue, emotional turmoil, and the feeling of having no control in our lives.

I would like to end tonight's posting with three messages I received today. The first message is from my friend, Charlie. Charlie wrote, "I am so relieved that Mattie made it safely through the first stage of his treatment to relieve his pain. Leave it to Mattie to put right up front how he feels about the situation and his current inability to eat. I do so hope this makes the difference and he is soon back enjoying his donuts and vanilla shakes. When I read that you had fallen asleep after another night of virtually no rest and running around all day, all I could think was "I can't believe she lasted this long". Truly your energy level astounds me and I have no idea where you find the strength to keep on going even though I know there is no alternative. I hope that tomorrow we will read that the treatment with the clot buster worked and Mattie's line is again clear.Whether you decide to continue the treatment at Georgetown or switch Mattie to an outpatient for the remaining radiation treatments, we will all be here with you praying for its success in helping make Mattie more comfortable."


The second message is from my friend, Mary M. Mary wrote, "I returned yesterday from my trip to Boston (yes, Boston, which I absolutely LOVE!), where Bob and I attended a wedding on the campus of Tufts University. Although it was a wonderful wedding, I was distracted, as my mind kept going back to you, Peter, and Mattie. I wake up each morning thinking of all that you are going through. The unfairness of your situation and the unanswerable questions about life's painful and unexpected events keep nagging at me. I'm rereading the book I recommended to you, "if I get to five" by Fred Epstein, MD, the pediatric neurosurgeon who writes about his experience with kids like Mattie, who have undergone such painful and traumatic illness. His insight on how kids feel about being sick and facing death is very insightful. It is comforting too. His perspective is that kids are unbelievably strong and resilient, even understanding and accepting their fate, when their parents are having a hard time. Although there are many inspiring stories and memorable insights, one paragraph particularly stand out to me at this time, Dr. Epstein writes, " Among all our fears, our fear of death is the most powerful. Death is so scary that we deny its hovering presence in our lives. In reality, death is our constant companion; it's proximity is part of what makes life so glorious. To me, suffering is the ultimate evil, not death. Love is the ultimate good, because it outlasts suffering and even death." If you decide to read this book, I hope it is a comfort to you at some point during or after all you are going through. I think it's meant to comfort parents and anyone who has gone or is going through what you are experiencing now. God bless you, Peter, and your darling little fighter, Mattie.

The last message is from another one of my wonderful former students. Jeff wrote, "I am one of your former students. I was in the cohort program at GW. I have been following Mattie's blog for many months since learning of his initial diagnosis. First and foremost, I wanted to extend my sincere condolences about the news you received last week. I read that blog entry with a heavy heart, and I can't even begin to imagine what you and your family have been through over the past year. I hope that you take comfort in the fact that Mattie has been such an inspiration to many people, which is evident from the many pictures you post on your blog, and especially to those who have never even met him. The stories that you post on a daily basis truly prove that he is one amazing kid, and he is truly blessed to be surrounded by such amazing people. It seems that you have a wonderful support system of family, friends, colleagues, and medical personnel who have been fighting for Mattie. I am sure they have truly been amazing. My sister works as a nurse in the PICU at a hospital in New York, and I always wondered how she could handle working in such an emotional and difficult environment. However, after reading about Mattie's various times in the hospital and seeing how the nurses have worked with and helped Mattie, I now understand how it can be a fulfilling career choice. So much of the medical "stuff" can be so confusing, so I am sure it helps having helpful staff to walk you through everything. I have always had a great deal of respect for you professionally, and after reading Mattie's blog, I have a great deal of respect for you personally as well. As a teacher, I thought you were one of the best I had during my counseling program at GW, and it is obvious that Mattie is extremely lucky to have you as a mother - your courage, persistence, devotion, strength, and love is truly evident in your blog postings, and it is admirable how you have remained this way throughout this difficult time. The pictures that you post, and Mattie's smile, are truly inspirational (I especially love the one of you and Mattie riding in Speedy Red! That one is a classic!) as is all of the wonderful things that people have organized for Mattie, such as the trip to the Lego store. He seems to be quite the Lego maniac! Most importantly however, Mattie's resilience and strength throughout this ordeal has been amazing to me. It is unbelievable what a child of his age can endure - most adults would not be able to go through what he has, but he seems to have that fighting spirit! I am sure that you have been flooded with emails, but I really wanted to take a moment to write to you. I know I am just one of many, many people that has been touched by Mattie's situation, and I will certainly be keeping Mattie in my prayers. Thank you for sharing with so many of us through Mattie's blog. I know so much more than words is needed during this time, and if there is ever anything I could do for you, please don't hesitate to ask."