Quote of the day: "The person who says it cannot be done should not interrupt the person doing it." ~ Chinese proverb
Mattie had a difficult Wednesday night. He had a hard time falling asleep, and he finally went to bed after 1am. He was up multiple times during the night such as 2am, 4am, 5am, and then at 6am he started screaming in pain. His right ankle (the one with the fracture) was bothering him. I called his nurse in, and she gave him some Morphine. But it was like she pushed water into his central line instead of Morphine. He continued on screaming and I called her back in for help. She then pushed a second syringe of Morphine. Thank goodness that finally worked. As he was waiting for the Morphine, he was writhing in pain. I encouraged him to calm down, that the medicine was coming, but I realize it is hard to calm down when you are in pain. He was getting me very worked up and I told him we both needed to sleep, and that if I did not get sleep, I was going to be very sick. I asked him if he wanted me to get very sick, because there are times he is so self focused I get the feeling he could care less. But he stopped and said that he definitely did not want me to get sick. In fact, later this morning when he woke up to go to the bathroom, he said he had something for me. I asked him what it was, and the next thing I knew he leaned over and gave me a kiss and told me he loved me. When some of you asked me this weekend at the Walk what keeps me motivated to do what I do, the answer is simple. Mattie, because Mattie is worth it, and deserves a better life.
Mattie could not get up this morning. In fact, Meg came over to play with Mattie. We have been so lucky to have Meg in our lives, and it is just unfortunate for us that she is leaving to go back home very soon. Though Meg was here to play with Mattie, Mattie did not wake up until 2pm. When Mattie woke up, he went into the playroom, and had fun selling plastic food to Meg, and used a cash register and play money that Linda gave him to make the buying and selling of food more official.
While Mattie was with Meg, I went on campus to have lunch with my parents. I also had the opportunity to sit outside in the rose garden for a little bit with my mom. However, that is where the fun and pleasantries for the day ended!
My mom and I met Mattie in the physical therapy gym of the hospital. Mattie had a session with Anna today at 4pm. In the session, Mattie had his ultraflex knee brace sized for him. Mattie tolerated this for a little while, while Linda and I were playing with him. Mattie landed up using his arms to throw balls into a parachute that Linda and I were holding. Mattie seemed to enjoy this distraction, which happened to be good exercise for him since it got him lift and stretch his arms. But adjusting the brace wasn't easy to do, and Mattie started to get frustrated with the process. Also he did not care for the stretching pain that the brace caused to his knee. I wish that was the only problem we contended with today! Anna told Mattie that she wanted to work on stretching his leg and getting his brace back. Mattie refused to this request. So Linda tried to cut a deal with Mattie. He could do one activity he wanted to do in the gym and then he would need to comply with what Anna wanted to accomplish. If he cooperated, Linda promised Mattie another wonderful cat to keep Lynx company. This seemed to catch Mattie's attention.
Mattie did some movements on a ramp he enjoys working with in the gym, and after that was over, we told Mattie it was time for stretching. It was at that point that he got very upset. He cried, and cried, and basically shut down. There was no rationalizing with him. He started screaming at me, and insisted on getting the cat that Linda promised him. I told him he had to earn the cat, but that fell on deaf ears. In his mind the cat was promised to him, and it was a lost cause to explain that he couldn't get the cat because he did not put the brace on or stretch. Mattie was simply hysterical and demanded that he get the cat and that I had to take him to the hospital gift shop so he could get it. He said he was going to scream, scream, and scream, and even vomit until he got what he wanted. He kept saying to me, "say yes, say yes!" I tried to encourage him to calm down, but it was impossible. It was like experiencing a full blown three year old tantrum, except he is seven, and has a lot more physical strength. In so many ways, Mattie's behavior has regressed back to his toddler years as he adjusts to the major traumas in his life. By the time this was over, I felt bad about many things. First, I felt bad that I caved into Mattie's irrational demand for this stuffed animal. Second, I felt worn out because his behavior was so over the top, and it is very frustrating that I couldn't rationalize with him, and third, Mattie can take a lot of his issues out on me, which isn't the best of feelings. However, I have come to a simple conclusion. Mattie must buy into the therapy process. We can't do it for him. I am not comfortable with bribing him or motivating him to do exercises for toys or other items. Because the down fall of this is when is enough enough? The prize or item just needs to get better and better in order to motivate him. I have never been a person who liked the token economy system. I would prefer to find a way to internally motivate Mattie. I have no doubt it will take longer, but in the end, this will be a great life lesson. Therapy isn't fun, it will be painful, and in order to actually undertake this process, Mattie will need to buy into what he is doing. I think if he bought into the process, he would then more likely participate in physical therapy regardless of his location.
Turning this tirade, Mattie had to go to the bathroom. Anna carried Mattie's urine sample up to the PICU for me, and in the mean time, Linda, my mom, and I were still in the gym trying to convince Mattie to pull himself together and leave the room. Because I wasn't home, I felt the need to cave into Mattie's demand in order to get him into his wheelchair and back to the PICU. However, he was so hysterical, he wanted me to sit in the wheelchair, and he sat on my lap. Linda pushed both of us in the chair, and my mom pushed the IV pole. What a sight we must have been, with Mattie crying, and his eyes blood shot. When I experience one of these emotional meltdowns with Mattie, it depresses me. Why? Because it further illustrates to me how difficult Mattie's recovery process is. He is strong willed, and though that is an asset when dealing with a rare cancer, it is also a curse. Because he can be non-compliant, hostile, and difficult, which on top of everything else, is wearing and tiring.
Before Linda left the hospital today, she presented me with a collage she made for me with some wonderful pictures of all of us and the nurses and support staff. In addition, the nurses wrote some beautiful good-byes to us along the frame of the collage. Friday is our last official day of receiving chemo. A strange feeling indeed. I have become very used to this schedule of receiving these toxic chemicals in order to keep Mattie's disease in check.
I was not in a happy place tonight and Ann called me to chat. I really appreciated her ability to hone in on what was really upsetting me about today's situation. Thank you Ann for always listening and getting it!
We want to thank the McSlarrow family for an incredible dinner tonight. After the kind of afternoon I had, eating wonderful food perked me up. Your tiramisu inspired me to even have the energy to write this blog. At 9:30pm, Mattie started receiving his fourth infusion of Ifosfamide and Etoposide and the infusion will be complete at 2:30am. Friday, will be his fifth and final infusion of these chemicals, and Saturday, Mattie will spend the day receiving hydration. It is our hope to leave the hospital on Saturday evening.
Peter came over after a long day at work, and sat and played with Mattie, building Legos and playing with some of the Cars character vehicles. Peter did his best to entertain Mattie so that I could eat, and sit and write the blog. Peter didn't leave for home until after 11:30pm, which I know makes for another long night for a member of the Brown Family. Peter gets up at 5am to start dealing with other offices around the world that his company operates. Needless to say, both Peter and I are feeling massive fatigue.
I end today's posting with a message from my friend, Charlie. Charlie wrote, "Anyone who is a regular reader of the blog should understand how difficult it will be to replace all those wonderful people who are supporting you at the hospital every time Mattie goes in for chemotherapy or a procedure. Yesterday's blog seemed like the cast of a major movie production with all those people coming and going and helping Mattie (as well as occupying his time). I can well understand why you are concerned about how to find others who will be as much a part of his life as this special group of people. On top of this is the approach of the date for the lung surgery; what awful decisions you have to make for Mattie. My heart sank when I read the report with eight tumors (which turned out to be a typo) but I can just imagine how awful it was for you to read that; how horrified and frantic you must have been. I am sorry you had to read that and think even for a second that the situation was worse than it already is. All I can say is, if there is a person who can bring together the right people in a situation like this, it is you."
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