Wednesday, April 29, 2009

Wednesday, April 29, 2009


Quote of the day: "The highest form of wisdom is kindness." ~ The Talmud

I would like to start off tonight's blog with a lovely quote I received today from Mattie's art teacher, Debbie Pollak. This is how she describes me: "The tenacity of a Navy Seal, the patience of a Polar Bear, and the wit of Groucho Marx." I enjoyed Debbie's quote a lot, and I continue to reflect upon it tonight. To make it through this ordeal, I think Debbie may be onto something, you do need tenacity, a whole lot of patience, and wit!

My parents and I took Mattie to clinic this morning. We arrived at around 11:30am. After vitals and a blood draw, Mattie spent the rest of the time playing with Jenny, Jessie, and my mom. In fact, Mattie glazed a vase that he made a few weeks back on the pottery wheel, and then created a wonderful story. I was busy running around trying to get Mattie admitted to the hospital, that I did not see the story unfolding. But Jenny gave Mattie a composition type book with blank pages. He did ALL the illustrations and Jenny helped him print out the words. The book tells the story of SUPER MATTIE. It is actually a wonderful and creative story about how Super Mattie saves a town from a mean and terrorizing monster. Mattie was very proud of his creation today, and has shown it to Whitney and even Jerry and Nancy this evening. In fact, tonight, Mattie and Nancy brainstormed selling Mattie's book with the proceeds going to benefit the art therapy program at the hospital. It was a riot, because Mattie started recruiting nurses to buy his book!

Left: A picture of Mattie holding his first book, The Adventures of Super Mattie, surrounded by (left to right) Whitney, Grammie, Jenny, and Jessie!

When I went down to register Mattie into the hospital today, it was a royal experience. There were many people waiting to get admitted, and some of us noticed they were taking folks out of numerical order (since you are assigned a number in the waiting area and they process you in turn). I went to address this issue since several other patients were upset and were waiting for a long time. One woman was there with her 96 year old mother. So I advocated for myself and two other people in the waiting area. I tried to lighten the mood with the others waiting, so when the admissions person came out, and started calling out a number, I turned it into a BINGO game. Needless to say, I had the woman next to me, with the 96 year old mother, laughing. When it was finally my turn to register Mattie, I walked in, and the man behind the counter started going into his talk about who he was and what he was going to do. But before he could start talking, he took one look at me, and I said, "Dennis, I already know who you are." After all, why wouldn't I? I feel like this is my community, I am here almost every week!

When I arrived back in clinic, Whitney had arrived. I thought Whitney's last week with us was last week, but it turned out that she is in training this week for her full time job, so she was able to spend part of the afternoon with Mattie. Whitney was very helpful, and she assisted me as I brought Mattie up the PICU. She played with him, read his Super Mattie story several times, and played several rounds of the board game, Life. In the game of Life today, Mattie landed up with 24 children. Wow!

As 5pm approached, Dr. Bob came to visit Mattie to rewedge his cast. Mattie will wear the cast for another week, and then have it permanently removed next week. I was fortunate enough to have Linda and Whitney with me, to help distract and support Mattie. Mattie was premedicated with an anti-anxiety medication, which I personally feel is no longer effective for Mattie. In any case, Mattie was a trooper, because it is painful to get your muscles stretched when they have been frozen for many months. Mattie did cry and was in pain, but as soon as Bob straightened out the leg, Mattie did calm down. But what helped to distract Mattie was my camera. He grabbed a hold of it and took photos of Bob sawing through his old cast and the wedging process. So I will let the pictures speak for themselves!

Left: I took a picture of Mattie and Bob as the process was starting. Bob is holding a cast saw. It doesn't hurt per se, but it makes quite a loud sound. Like a very powerful vacuum.

Right: Mattie snapped a close up of Bob with the saw in motion. I personally LOVE this shot! Look at Bob's eyes, to me Mattie captured a great picture ---the look of precision and concentration!

Left: Mattie snapped a picture of Bob as he was using this metal plier type device to remove the orange slice wedge that he made through Mattie's old cast.

Right: Linda holding the wedge removed from Mattie's cast.

Once the wedge was removed from the cast, Bob manipulated Mattie's leg so that his knee was completely straight. Once straightened (which was the painful part), Bob then recasted just that portion by the knee. Mattie snapped a picture of this final step!

Left: The recasting located by the knee.

Once Bob was finished, my parents and Whitney signed Mattie's cast by the knee. In addition, the running joke is that every time Katie (one of Mattie's wonderful HEM/ONC nurses) signs Mattie's cast, Bob cuts it off. So today she signed Mattie's cast for the third time. We all got a good chuckle out of it!

Right: Whitney signing the cast!

We want to thank Lana (one of Mattie's preschool teachers) for delivering us a beautiful home cooked meal tonight. Thank you for thinking of all of us. Mattie devoured the hot dog and fresh corn! He also loved his new batch of his favorite cookies. Thank you Lana for a very thoughtful and tasty meal!

My parents watched the movie, Chitty Chitty Bang Bang with Mattie this evening. It is a long movie, and while the movie was taking place, Peter arrived from work, and with him came all our room items. So I unpacked the room, and then sent Peter home for the night. As Peter was leaving, Jerry and Nancy, our favorite musical volunteers arrived. Jerry and Nancy played Name that Tune with Mattie. The contest was to see if Mattie could guess all 12 songs that Jerry played. If Mattie guessed them correctly, he would win a prize! Jerry and I worked this out before tonight. I e-mailed Jerry back and forth a list of songs that Mattie would know. As Jerry played the songs tonight, Mattie thought he recognized the song, but actually had a different song in mind. So Jerry did not skip a beat, he would change the song in mid stride. We all got a good laugh at this. But Mattie loved how Jerry and Nancy were hamming it up, and of course Mattie loves to win. You can see Mattie pictured with Jerry and Nancy, as he received his prize. When Mattie opened his prize, he received a hat, and on the hat it was written, Piano Man. We call Jerry the Piano Man, so this was a special hat to receive. Mattie is the Piano Man, Jr., because Jerry knows that Mattie is learning to play.

The night did not end here. Mattie literally popped up out of his chair and started to lead us in exercises. Literally he was recruiting nurses from the floor into the room. Mattie was moving his body, arms, and legs. Dr. Bob would have been VERY proud of Mattie. Mattie was also a task master. He made all of us get a work out. No one was allowed to sit. At one point there were six adults in Mattie's room exercising!

Left: A picture of Mattie and Nancy moving their legs together.

Right: Mattie leading us in neck exercises!

Left: Mattie showing the crowd how he can throw his legs over his head!

Mattie was a live wire tonight. After all the exercises were complete, then Erin, Mattie's wonderful HEM/ONC nurse, was in playing ghost games with us. But it hasn't been an easy night for us. It is 11:40pm, and Mattie just vomited. He is on ativan for break through nausea and also is on morphine because his knee is bothering him from recasting. So for most of us we would be very relaxed and sleeping from such medications, but NOT Mattie. He hasn't given myself or Erin a minute's peace. The irony is today I felt very tired and my patience with Mattie was low. He can be very demanding and sassy at times, and normally I can reason with him, but today I wasn't in the mood, and we had our share of blow ups together. I think the ironic part is I had many people today comment on how nice I looked. Maybe because I was in a bright color, in comparison to my usual dull hospital uniform. Of course it was nice to hear that I looked nice, but don't be confused by looks. I assure you looks are deceiving!

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As usual, I see two sides of this posting. One is the relief as you see the end of the chemo in sight and the other is the anxiety of the upcoming scans and lung surgery. I also see how this disease takes over every moment, every corner of your life in a way that many of us don't realize. Getting out of the hospital and home to familiar spaces and then to be on call every moment as playmate, transporter, nurse is an incredible challenge when put on top of what you have already done. Your exhaustion comes through very clearly. I know that the scans and the surgery have to be scheduled, I am just sorry that the chance to get this done came at the expense of an opportunity to get some much needed rest."