Saturday, April 25, 2009

Saturday, April 25, 2009

Quote of the day: "In the confrontation between the stream and the rock, the stream always wins--not through strength but by perseverance." ~ H. Jackson Brown

Peter stayed in the hospital last night with Mattie, while I went home. Peter told me that Mattie was up until 1:15am. Together they played Candyland, Battleship, and even watched a movie together. As usual, Mattie was up several times during the night. I love how Peter describes our current state, he says we are both part of the Twilight Zone, or basically in a constant state of fatigue and fogginess. Well put! Peter and I are both happy to report that Mattie's appetite is coming back. Which is fantastic!

Mattie's day started out with a visit from Dr. Gonzales. Dr. Gonzales is the HEM/ONC doctor on call this weekend. Mattie refused to allow Dr. Gonzales in the room to examine him. So Peter joked with Mattie. He said why not have Dr. Gonzales jump into the room like a bunny. Well Mattie liked that idea. Dr. Gonzales is a good sport and can hold her own with Mattie. She jumped into the room like a bunny, and was followed by her residents. The exam must have been a sight to see! Mattie was picking Dr. Gonzales' pockets with his left foot and pulled out her ID and her pager. Apparently Mattie even learned how to use a pager today. He got a tutorial from Dr. Gonzales. Dr. Gonzales had Travis, her resident, go out into the hallway and she had him page her. Needless to say, Mattie caught on quick, and then paged Travis on Dr. Gonzales' pager. I am sorry I missed this dialogue today, but Peter captured a great picture of Mattie and Dr. Gonzales chatting and working on her pager.

Mattie had a very exciting day. It is funny, I thought things were going to be difficult for Mattie and Peter today, because it is a Saturday. But wonderful things have a way of unfolding. Brandon, Mattie's big buddy, text messaged me Friday night and asked if Mattie would like company today. Mattie is usually up for seeing Brandon, and since Brandon is familiar with the effects of chemo, he knows and understands many of the ups and downs Mattie can have in one day. Brandon spent several hours with Mattie today and they started off their day together playing Candyland. Mattie refers to himself as the "King of Candyland."

I hear that Mattie's room was the place to be today. Robbie (a friend of Brandon's and now a volunteer at the hospital) also visited Mattie, and together Brandon and Robbie helped Mattie design a set for their production of Three Little Pigs. In fact, Katie, Mattie's wonderful HEM/ONC nurse, was asked to participate in the play as well. Mattie was Katie's only patient for half of the day and thereby was able to spend one on one time with Mattie. Mattie loved her attention. Before I tell you more about the play, I have a story about Katie to share. Two weeks ago, when Mattie entered the hospital with a high fever and was neutropenic, Katie was his nurse. Despite Mattie being quite ill, he happened to see Katie's beautiful red colored shoes. They are more burgundy than red, but they are special. Mattie started asking Katie about her shoes, and he told her that he liked them. Katie's heart melted, because she said the shoes were new, and it meant a lot to her that he noticed them. Since that time, we have nick named Katie, "Dorothy," since you recall the beautiful ruby red slippers that Dorothy wore in the Wizard of Oz.



Right: A picture of Mattie and Katie!



Back to the story about the play. So they used a large cardboard box and transformed it into a straw, stick, and brick house. Because every good play needs a good prop! Each side of the box represented a different house. The yellow part of the box represented the straw house, the brown pipe cleaner side was the stick house, and the red construction paper side was used to represent the brick house.

Left: The Straw and Brick Houses

Right: The Stick and Straw Houses

After the scenery was created, the story unfolded. Robbie was the narrator and Peter was videotaping the play. Mattie was the littlest pig, Katie was the middle pig, and Brandon was the big pig of the family. In fact, I am thrilled this was videotaped because it was a riot to hear these three oinking like pigs, I would have hated to miss this, so I am glad Peter captured it! The play was taking on a life of its own though, and the actors needed more room to perform. So the play relocated to the childlife playroom. During the transition from Mattie's room, they recruited two more volunteers to be a part of the play. It was wonderful, Mattie had a great time, and he and Katie took bows once the performance was over. Katie told me this evening that this was her first play she acted in ever within the PICU!

While Mattie and Peter were having a dynamic day together, I was home trying to get some chores done, and managed to also do laundry. In addition, Mattie sent me out for particular foods he wanted to eat today, and literally I went to several different stores to meet his needs. My goal was to get to the hospital by 5:30pm. Dr. Bob was visiting Mattie at that time. When I did arrive, Bob, along with Abigail and Katie (Bob's daughters and buddies of Mattie) were already there and Bob had assessed the situation with Mattie's left wrist. I will try to explain the problem to you. In November, part of Mattie's radius (part of the arm bone down by the wrist) was removed because it had a tumor. Well in removing that part of the radius, the growth plate was also removed. Now within the lower arm there are two bones, one is the radius and the other is the ulna. Well the ulna was untouched and therefore has an intact growth plate in it. So in essence what is happening is Mattie's ulna by the wrist is growing (so much for chemo stunting growth!), but of course the radius can't grow because it doesn't have a growth plate, which helps the bone expand naturally. So one bone by the wrist is expanding, and the other can't, which explains the contorted left wrist that we are seeing. Bob says he has some ideas for how to correct this, but clearly it can't be done until after Mattie completes chemotherapy. So though Bob isn't telling me this, I know that correcting the problem will mean more surgery. Not what I want to hear right now.

Once Bob left, I found myself getting very upset. When I am upset, I get snappy and difficult to be around, and unfortunately Peter took the brunt of that, until he pointed out how I was treating him. This is the challenge of having a sick child. As a couple you really can't vent to each other, because we are both dealing with the same issue, and therefore do not have the distance or the perspective to help the other.

However, because it was a beautiful 80 degree day in Washington, DC, I felt the need to get Mattie out of his room and into the fresh air. Katie allowed us to take Mattie to the gardens of the hospital. All three of us went for a walk. While on our walk, Peter took a photo of Mattie and I by a beautiful azalea bush and we also had the wonderful opportunity to look at the Lombardi Clinic's "Elephant Wisdom" statue.

Left: Mattie and Vicki in the hospital gardens.

Right: "Elephant Wisdom," which is a wonderful piece that is maintained by the art therapists in the Lombardi Clinic.

Right: The plaque explaining Elephant Wisdom. It reads:

"Elephant Wisdom was created by patients, families, and staff in pediatric hematology/oncology at Georgetown University Hospital's Lombardi Cancer Center, as part of their art therapy program. Since elephants are thought to be lucky, the children reason that they can make wishes on the elephant. We have covered ours with wishes and added facts about elephants. We have also shown the elephant's bones, as in an x-ray. Since so many of the kids have had such tests. We hope you enjoy our wishes!"

Left: Mattie in front of Elephant Wishes. However, look closely. Do you see Curious George on the elephant? Well this is a clay piece that Kathleen (one of our great HEM/ONC nurses) created for Mattie to go on the elephant. Kathleen wrote on Curious George, "I wish for a Mattie Miracle, Love Kathleen."

Left: A close up of Kathleen's Curious George dedicated to Mattie!

When we got back from our walk, Mattie decided to wash a rock he acquired along the way. Mattie loves to find things and keep them, to remind him of what he experienced. Perhaps he learned this from me, since we are both rather sentimental. However, I think Mattie is more of a pack rat than myself! While Mattie was washing away, I observed Peter watching the Red Sox game on TV. In between watching, I noticed he kept text messaging someone. I really had no idea who he was communicating with, until he started laughing. Who was he texting back and forth? Dr. Bob! Bob is technically a Yankees fan (which is hard to imagine since Ann, his wife, is a die hard Red Sox fan), and Peter and Bob were exchanging barbs at each other about the game. It had me laughing, because despite Bob being an outstanding surgeon, he is also just like the rest of us. He is a devoted parent and a person who can joke around about a Red Sox/Yankees game. I have never had a friendship before with any of my doctors, Bob is a first!

Ellen is Mattie's night nurse tonight. Ellen is one incredible HEM/ONC nurse. You always know you are in good hands when it is Ellen's night. Peter tells me that Ellen brought in a birthday present for Mattie. She got him a wonderful Scooby Doo tote bag, filled with a color explosion craft project and a wonderful and creative story about bugs! I think Ellen knows Mattie well!

Tonight, I am writing this blog from home. I will head back to the hospital tomorrow, and switch places with Peter for the night. It is possible Mattie may clear Methotrexate as early as Sunday. However, I am hoping that he does not, because Mattie will need an infusion of MTP-PE on Monday. If he is released from the hospital on Sunday, I will just have to bring him back for a full day in clinic on Monday. In my perspective, you might as well just leave us in the hospital, but I will keep you all posted.

I end tonight's posting with a message from my friend Charlie. Charlie wrote, "Mattie had a pretty good day overall on Friday, lots of attention and playing and eating! Certainly good to hear that! All I can say reference Mattie's wrist is, don't feel guilty. Whether you did not see it before, thought it was normal or felt that this was just one thing too many, doesn't matter. There is time to deal with this and it will be evaluated and the options will be put forward. There is too much for one person to do to monitor everything, especially when you have to do it on little or no sleep. This is not life threatening regardless of the outcome (a brace, PT, etc) so let it go. You are an amazing mom and a wonderful advocate for Mattie and this is not a failure on your part. You are surrounded by medical personnel including physical therapists, occupational therapists and others and they did not see it either."