Quote of the day: "Life isn't a matter of milestones but of moments." ~ Rose Fitzgerald Kennedy
Mattie had another difficult Friday night in his fight against osteosarcoma. He was agitated, at times hostile, and had amazing mood swings. He can be hostile one minute, and then about a half an hour later remorseful. I spent some time in the hallway last night as well. I have appreciated the helpful comments from Lauren, a fellow osteo mom, who posted about the aggression and hostility she saw within her own child from a reaction to medication. It is quite a scary commentary, Mattie needs medications to mitigate the pain, and in the midst of this, it compounds other problems. Mattie's mood right now is very taxing.
We are lucky enough to have such wonderful friends who were willing to bring us breakfast, lunch, and provide a playdate this afternoon. However, based on where Mattie is emotionally, we decided not to take any visitors. This is a hard decision, and we so appreciate all of you who volunteer and are reaching out to us. I know you understand when such visits are not possible, but our energy levels are decreasing, and managing Mattie's reactions these days to other people takes its toll out on me and Peter. So we are respecting his decision to be alone, but it certainly can be very isolating for Peter and I. We are trapped in the hospital, but in all reality we experience similar isolation at home. When we are home, Mattie also prefers isolation. He doesn't like leaving the house for the most part, and some days won't tolerate visitors. I am hoping at some point we can claim back some normalcy, but I know it won't be any time soon.
One of Mattie's doctors came in this morning to let me know that Mattie's white blood cell count jumped up, and if this count was indeed accurate we could potentially go home on Sunday. However, the doctor was suspect of this count, and had the nurse redraw blood so that his counts could be reassessed. It turns out that the counts were not accurate, and Mattie's absolute neutrophil count is still zero. So for the time being, we remain in the hospital. However, Mattie continues to receive Morphine around the clock for stomach and mouth pain, so we are in no hurry to leave until some of these issues are resolved.
Mattie's nurse today was Miki. Miki is another supporter of Mattie. In the Fall, Miki helped me design a central line dressing change procedure for Mattie. We learned early on that Mattie was allergic to the standard dressing change materials, so Miki was tasked to find other materials that would work for Mattie. Once she came up with a plan, she had to teach it to me. Miki did an excellent job at that, because Peter and I have been able to keep Mattie's dressing clean and infection free for all these months. In fact, Miki commended us today, because she said most kids develop central line infections throughout their treatment. While Miki was working with Mattie this morning, Mattie was sticking his left leg into her pockets. He pulled out her calendar and within the calendar were some beautiful cut out butterflies. Mattie was intrigued by these butterflies and Miki let Mattie keep two of them.
Mattie had his heart set today on building a lego alligator. So while Mattie was sleeping Peter ran around and bought all green colored legos. This afternoon Peter and Mattie transformed our room into a lego factory. Here are some of the wonderful creations of the day.
Left: Mattie's alligator (not a set, it was designed by Mattie)!
Right: Mattie and his alligator!
Left: Mattie's latest Lego house!
While Mattie was building, my parents and I went for lunch on Georgetown's campus leaving Peter to play with Mattie. The weather was beautiful, and it was lovely to be outside in the fresh air. After lunch, my mom and I sat outside in the rose garden of the hospital, but when we got back to Mattie's room, I could see Mattie was edgy and hostile. When Mattie is like this, he gets snappy, says hurtful things, and also becomes disinterested in the objects around him. Despite Mattie's mood, I could tell Mattie enjoyed his time with Peter today, and I am trying to give them their space to play. But as it is 9:15pm, and I look at the clock and realize Peter and I have about six more hours of playtime and monitoring Mattie, it becomes overwhelming. I may not be doing a very good job at conveying my feelings, but Peter and I feel STUCK in which each day looks the same. We are isolated, tied to living in a hospital, we perform the same daily tasks for Mattie (because he is unable to care for himself and meet his own activities of daily living), try to make things consistent and pleasant to maintain Mattie's safety and emotional stability, and of course as a by product of all this care, we don't have the energy or desire to meet our own needs.
In addition to all the other things we are balancing, Peter and I also have to consider whether we would like Mattie to have two more days of Doxorubicin, a chemo drug, post lung surgery. I have asked Dr. Synder to compare the current treatment protocol Mattie is on the the experimental protocol that Mattie is no longer on (Mattie dropped out of the study in November, after the pathology results from the surgeries). When I saw these two protocols myself, I could see that the amount of chemo between them was quite different.
I guess my question to Dr. Synder was what did Mattie miss on this protocol that would have been beneficial to him? We want no regrets, and I feel everything at this point needs to be evaluated and questioned. What I love about Dr. Synder is she has NO ego. She is willing to investigate our questions and present the information to us, and help us to make intelligent choices. Clearly if the lung surgery loosens up any cancer cells, then having two days of doxorubicin may be very helpful. However, doxorubicin has many negative side effects, such as long term cardiac damage. In addition, I asked how effective was doxorubicin for Mattie anyway? It did not enhance his level of necrosis in his bone tumors at the time of surgery. But despite this fact, I still feel Peter and I have to seriously consider this. So another thing to add to our list!
After my parents left tonight, I had the opportunity to talk with a dad of a boy who has cancer in the PICU. This family is having their own challenges, and we commiserated. Though the cancers we are dealing with are like night and day, one thing is for certain, we long for the days when our children were healthy, and we so wish we had the typical parenting issues to contend with. We are instead losing out on the typical highs and lows parents have when they raise their children. For us, our decisions each day have ramification on our children's survival, and I can't quite describe how daunting it is to know that you are fighting a disease where you just don't know what the outcome will be.
The unknown is frightening, scary, and at times unsettling. I don't wish this feeling on anyone. While I am typing tonight, Ellen, Mattie's wonderful HEM/ONC nurse, is playing on the computer with him. He has sucked Ellen into his games and stories. In fact, Mattie even showed Ellen his video clip of when he, Brandon, and Katie acted out the three little pigs. We all got a chuckle out of that. I have no idea what tonight holds, but I hope things lighten up for us.
I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "I just sit here and think how unfair it is that on top of having to fight this horrible disease with its devastating effects, you have to deal with all the emotional upheavals caused by the side effects of the drugs. I know that you have mixed feelings about coming to the end of the chemotherapy but with all the horrible side effects this time (stomach pain, anxiety, angry moods, frustration, irritability, etc) and the usual neutropenia, I have to regard the fact that this was the last round of these drugs as positive. It appears that the effects of the drugs are cumulative and that while the intent is that they will clear Mattie's system within a certain number of hours, somehow he becomes increasingly sensitized to them. Peter, you are a hero for managing to get up and go find pasta late at night as exhausted as you were; I am glad you found what was needed and made it back safely. I know you must feel terrible when you are "rejected" and thrown out of the room by Mattie but this is like "The Exorcist", your child has been hijacked by the drugs and the disease and what comes out of his mouth has very little of Mattie in it. He is as much in the grip of it as you are, and likely as confused and unhappy about it as well. I hope this horrible, erratic phase of the journey to wellness ends soon and that you move onto a more even and calm road soon."
No comments:
Post a Comment