Quote of the day: "Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever." ~ Isak Dinesen
Mattie had a decent night of sleep on monday. He was up a couple of times going to the bathroom, but other than that, it was a quiet night. I arose this morning at 6:30am, so that I could take a shower in peace, before people started coming in and out of the room, which can happen as early as 7am. Taking a shower here is always a fun experience. It takes a good 10 minutes for the water to turn hot, and the shower nozzle is so old that it feels like you are taking a shower under a dripping garden hose.
Tricia was Mattie's nurse today, and she allowed him to go to the playroom early in the morning, because she knew he would have to be in his room during the afternoon for his platelet transfusion. Jey, Mattie's 'big brother,' came to visit Mattie and he helped us to the playroom. Once we got to the playroom, Mattie was out of sorts. He was grumpy and demanding. He also couldn't figure out what he wanted to play with. After about 15 to 20 minutes debating back and forth about what to do, Mattie finally played with cars in the playroom, and even designed his own race track on paper. He gave the track some thought. While he was playing there was a two year old in the room with us. She wanted to play with Mattie, but he did not want to have anything to do with her. As a typical two year old, she kept coming over, sticking her face into Mattie's play space, and even grabbing his toys. At one point, I thought he was going to explode. I tried to explain to him that she is smaller than he is, and that she looks up to him and wants to play with him. But that explanation only bought me some time.
As we remained in the playroom, Margaret came by to visit us. Margaret was Mattie's first preschool teacher at Resurrection Children's Center. Like all of Mattie's friends from his outside world, he greeted Margaret with hesitation and agitation. Margaret gave Mattie a game, and that seemed to take his mind off of his tension. They played for a while, and then we headed back to his room for his transfusion pre-medications. Margaret continued to chat with Mattie and was making some head way with him, but none the less, Mattie was super edgy. The irony is at one time, Mattie was very close to Margaret. Not that he still doesn't feel a level of fondness for her, but cancer has profoundly changed Mattie. It is a combination of things, but there are very measurable emotional consequences to having cancer, and these consequences have taken their toll out on Mattie. In many ways he has regressed to having three year old like behaviors when it comes to coping. Margaret gave Mattie some wonderful linzer cookies in the shape of hearts, and Mattie later ate one in the afternoon, and enjoyed it. Thanks Margaret for the visit, and for trying to give me a break today.
At lunch time, Liza (an SSSAS upper school mom and now friend), came to visit and brought us a wonderful lunch. Liza gave Mattie's lunch a great deal of thought. She literally put his lunch in a special blue bag, and gave him a whole bunch of things like butterfly pastas, pears, applesauce, and a whole bunch of other goodies. Mattie literally ate some pasta, all the applesauce, goldfish, and some pears. It was the most I have seen him eat in a LONG time! It was thrilling, even Tricia was impressed. Great work Liza. Liza made me a phenomenal carrot soup and a chicken salad. There wasn't anything left to Liza's lunch after Mattie and I got through with it. The carrot soup needs to go into Mattie's recipe book! However, Liza also gave Mattie an adorable Valentine's bag with a game and a book in it. Liza inscribed the book for Mattie, because it is a family favorite. The book is entitled, "Love you forever." While Mattie was eating today, I read him the story. The story brought me to tears. Mattie thought I was an absolute riot. He in fact had me read the book twice because he said he wanted to see me cry again. I highly recommend this story, it is so touching. Basically it is a story about a mom and her son, who she raises from a baby to adulthood. Every night she sings him a special song ("I'll love you forever, I'll like you for always, As long as I'm living my baby you'll be), and even when her son becomes an adult she still feels her son is and will always be her baby. Toward the end of the story, you see the mom as an older person, and very sick. The son comes to visit her, and rocks and cradles her with the song his mom taught him. It was touching, and speaks to the love between a mom and her son. But I think it caused me to take pause, because I realize with Mattie's illness I may not have the opportunity to see him grow up the same way as the little boy in this story.
I had a revelation today about Mattie. Mattie was agitated with me, and he really disliked hearing the conversation in his room among myself, Margaret, and Liza. At one point, he told Margaret and Liza that they both had to go. In fact, he was so bold to say he "hates people." I have to tell you, even though I can put what Mattie is saying in perspective and I empathetize with what he has and continues to go through, I too am human, and his behavior can be embarrassing and I feel it is a poor reflection on me. In fact, there are some people at Georgetown who have mentioned to me that Mattie is "mean." I view these folks as ignorant, because they have no idea what Mattie has survived and is overcoming. I would like to see any adult deal with 9 months of chemo and two major surgeries which involve taking out and replacing bones in three limbs! I have no doubt they wouldn't be the same person who entered the hospital prior to all this treatment. Margaret and Liza did accomodate Mattie's wishes, but his possessiveness and desire to isolate us isn't easy in any stretch of the imagination. But here is the revelation. While Margaret and Liza were leaving the room, Jenny and Jessie entered. I told Jenny that I did not think Mattie wanted any company at that moment. But Mattie surprised me, he wanted his friends to leave, and he wanted Jenny and Jessie to stay. So it appears to me while Mattie is in the hospital, he really can't relate to his outside world. When the outside world comes in, Mattie becomes agitated and it is almost as if he needs to shut down to protect himself. I try to understand this behavior, and I can only assume he does this because he feels that friends from the outside world (outside the PICU) do not fully grasp what he has and continues to deal with. I don't know if there is any credence to this theory, but I am exploring it further.
Jessie worked with Mattie today in his room while he was getting a platelet transfusions. The transfusion went very well, thankfully. This is his second platelet transfusion since he was admitted last wednesday to the hospital. We are going on ONE week now. Jessie brought Mattie a large cardboard canvas to paint with today, and Mattie painted with his hands and feet. You should have seen the mess Mattie was making and the sheer joy in this mess! I took a picture of Mattie's beautiful and creative painting. I asked Jessie if she directed the painting and she said it all came from Mattie. I love his tree and his smiling sunshine!
While Mattie was painting, one of the PICU staff came out in the hallway to find me. Mattie has a case of diarrhea today from all the antibiotics. It is a bit explosive, I experienced this in the morning. But this afternoon. Mattie did not make it to the bathroom in time, and it was on the floor, on Mattie, and his clothes. Jessie did a good job containing it, and I finished up the clean up.After Jessie worked with Mattie, Jenny came up from the clinic and took over. She brought Mattie to the childlife playroom and they started working on creating popsicle boxes. You got to love watching Mattie with a hot glue gun! Mattie had a good time with Jenny, and then Linda took over. Linda says she always enjoys her "Mattie time!" Jessie, Jenny, and Linda were VERY well coordinated today. They really tried to give me a break, even though I know I can't go far, because there are times that Mattie just needs me. But I have NO idea where I would be without these three ladies. They are phenomenal.
Throughout the afternoon, we were also worried about Brandon. Brandon had a terrible afternoon of pain. It is hard to see another family going through this pain, because in a way, it only compounds what you are feeling. It is my hope that Brandon has turned a corner tonight and will continue on the upswing. I think this surgery and pain was a major letdown for Brandon. He thought his treatments were over, and that he could close this chapter on his life, but he got more than he bargained for.
This evening we had a visit from Gibby Earnest. Gibby is Mattie's librarian at SSSAS. I know Gibby personally, because last year I volunteered in the lower school library and had the opportunity to work with Gibby. We want to thank Gibby for a wonderful chicken casserole and goodies. We also want to thank Gibby for the book, "How to be a pirate?" Mattie and I enjoyed reading and looking at the pictures. He has determined he wouldn't make a good pirate. When Peter arrived tonight after work, Mattie was thrilled to see him and together they got into a snake series on the animal planet. They are both grossing me out with this whole topic. It is nice to have Peter back tonight, but I am convinced now that we will have to switch off occasionally staying over nights in the hospital when Mattie isn't getting chemo. This will be the only healthy way to preserve us!In terms of Mattie, his absolute neutrophil count is still ZERO. He had a platelet transfusion today, and is holding steady. He will not be released from the hospital until his counts reach 500, so we have a way to go still. Wednesday he will be resuming physical therapy, he has been unable to do therapy because he has been too weak, and of course on thursday, he has another administration of MTP-PE.
I end tonight with an e-mail I received from Charlie. Charlie wrote, "It is clear that the roller coaster ride of cancer treatment continues. I don't know any other one thing that seems to sum it up as well as a picture of a coaster. The ups and downs, twists and turns are beyond belief. It seems all you can do is hold on tight and look for the next hill or the next turn and try to anticipate as much as you can and "lean into it". I think you are Mattie's safety gear/seatbelt for this ride and that is why he clings so tightly to you. The other reason a coaster comes to mind is because you talked about how you are outside of normal time. I remember feeling that way on a ride; some moments were long, others amazingly fast and when I got off I had no idea how much time had passed. I hope at the end of this ride, when you, Pete and Mattie look back, you remember your time as a family, with multiple bright spots for the love and support of friends and extended family and that the pain and trauma of it becomes just a short "blip" on the long road of health and joy."
