Monday, December 1, 2008

Monday, December 1, 2008

Message of the day (Thanks Charlie!):
Charlie wrote, "This is how those of us who read the blog see Mattie:"

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. ~ Christopher Reeve

"And what we all pray for:"

Expect to have hope rekindled. Expect your prayers to be answered in wondrous ways. The dry seasons in life do not last. The spring rains will come again. ~ Sarah Ban Breathnach

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. Synder, 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 insensed 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 Synder decended upon Mattie. The whole next episode was painful to watch, much less to experience. Dr. Synder 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 Synder 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.

We then moved Mattie upstairs to the PICU. Mattie was greeted by Linda, Miki (his nurse) and Jane (one of Mattie's PICU nurses). Linda gave Mattie a remote control airplane and was able to encourage Mattie to go to the playroom. Mattie also met up with Brandon (his big buddy) today in the playroom and they built some legos together. While Mattie was gone for a little while, I ate a nice lunch. I thank the Bentsen family for thinking of me. I loved the dumplings and soup. It hit the spot! Thank you for also dropping off two wonderful gifts for Mattie. I can't wait to do the gingerbread train with him. While eating I spoke with Lorraine and my mom and I told them if I should survive this process, I plan on starting to do things I enjoy, rather than what pleases others or what others feel I should be doing. This is a big revelation for me! Thank you Lorraine for your visit today. Mattie loved the cupcakes and the chips and Peter and Mattie played tic tac toe together tonight!

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 guarentee 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.

This evening Mattie had a visit from Zachary (his close preschool buddy) and his mom, Katie. I thought Mattie was going to throw Zachary out of the room, but instead Mattie was thrilled to see him. Zachary and Mattie started doing legos together and Zachary was at times acting like Mattie's hands when Mattie couldn't do something. It was amazing to see. Mattie and Zachary have a special connection that I suppose even such an illness can't break. Zachary just rises to the occasion. It perked Mattie up and Mattie even ate a chicken nugget during the visit. After a day we had, it was incredible to see this transformation. Mind you when Katie and Zachary arrived I was sitting outside the room, giving Mattie space. Thank you Katie for a wonderful dinner and a nice chat!

Mattie's chemo began tonight at 9pm. Mattie needed a whole day of hydration in order to meet the criteria to start chemo. Mattie already had his Etoposide administered tonight, and managed that well. He is currently getting an Ifosfamide infusion. After the four hour infusion, Mattie is administered Mesna. Which basically rescues his bladder from damage from the Ifosfamide. Melba, Mattie's nurse, has already given me a heads up that Mesna can add to the nausea.

I learned today that my friend Sara has a family member who is a reiki practitioner. Sara explained to me that reiki is a form of psychic healing. She said you can do it in person or from a distance. When someone does reiki from a distance they just keep the people in mind that they want to send healing powers to. Thank you Juliet for doing this for our family. All positive energy is needed and appreciated.

I want to end tonight on a positive note. Jenny let me know that one of Mattie's pottery sculptures was entered into an art show, sponsored by Tracy's Kids. Tracy is an art therapist who started the art therapy program at Georgetown. Mattie's sculpture will be featured at the Carroll Square Gallery from December 1 until January 2. The gallery is located at 975 F Street, NW. I am not sure how many 6 year olds get their art featured at a gallery, but this was something that brought a huge smile to my face.