Quote of the day: "Endurance is patience concentrated." ~ Thomas Carlyle
Mattie was up until 2am on Saturday. He and I were watching a movie together, and I literally fell asleep and my head way bobbing on top of Mattie's. Mattie kept waking me up and was getting annoyed with me. I tried to watch the movie, but the will was there, but not the way. Fortunately Peter jumped up and down with Mattie the rest of the night, because I did not have the energy to do this. In fact, Kathleen, Mattie's HEM/ONC nurse, came in this morning and I had no recollection of her even being in the room. When Mattie woke up today, he was in a much better mood than he has been all week. However, I need to see a pattern, before I accept this as a reality. Mattie was eager to show Kathleen all his Lego creations and she was very impressed with "Chompy," the big green alligator he created yesterday. He also showed Kathleen his medieval castle he was planning on building today.
Mattie spent the entire day playing with Peter. Peter worked hard on engaging Mattie and building Legos. It clearly was a "boys" day, and three was a crowd. So after doing laundry, I packed up and went home. While home I cleaned up some things that I left all over the place before rushing Mattie to the hospital on Monday. I had the pleasure of taking a shower at home and then I went out to lunch with my parents. We had a nice lunch, chatted, and shared some stories. While at lunch, Peter called me with food requests from Mattie. Mattie is now craving cheese again, which is a great thing for him to eat, not only for his stomach, but for his calcium level.
Mattie continues to have an absolute neutrophil count of zero. It is possible that he may need another platelet transfusion on Monday, and of course he will be receiving MTP-PE on Monday. It is my hope that the blood tests confirming an ulcer will come back soon, because in my opinion Mattie should just be treated now. This stomach pain has been occurring for weeks, and Prevacid is not cutting it. Dr. Myers' the on call attending HEM/ONC physician told me today that many kids like Mattie who are neutropenic for so long, sometimes need intensive care. Fortunately Mattie is holding his own. Dr. Myers was very kind today, and asked what he could do for us to make this weekend easier. This is not a typical question I hear from a doctor! I thought it was very meaningful and meant a great deal to me, because yes it is a holiday weekend, and like so many holidays we have spent them in the hospital.
When I arrived back at the hospital this afternoon, I sent Peter home. He needed a major break! Playing non-stop for several hours is taxing. We want to thank the Bentsen family for their wonderful "Rolling Thunder" care package today. In Washington, DC, during Memorial Day weekend, the city is transformed by thousands of motorcycles. Here is some information on Rolling Thunder: Incorporated in 1995, Rolling Thunder, Inc. is a class 501(c)(4) non-profit organization with over 88 chartered chapters throughout the United States and members abroad. While many members of Rolling Thunder are veterans, and many ride motorcycles, neither qualification is a prerequisite. Rolling Thunder members are old and young, men and women, veterans and non-veterans. All are united in the cause to bring full accountability for POWs and MIAs of all wars, reminding the government, the media and the public by our watchwords: “We Will Not Forget.” The name Rolling Thunder is derived from the constant bombing of North Vietnam in 1965 and was given the name, "Operation Rolling Thunder." No officers or members of Rolling Thunder, Inc. receive compensation; we all donate our time (http://www.rollingthunder1.com/about.html).
The Bentsen family gave Mattie a shopping bag filled with American Flags, streamers, a great bandanna, and pinwheels. The idea was Mattie could decorate his wheelchair, and recreate his own Rolling Thunder. Mattie had a blast reading the lovely notes the Bensten family wrote to him, and he had a great time decorating. You can see Mattie in motion below. Also after Mattie decorated his wheelchair, he was motivated to show others. He left his room today! Hurrah! This was a first for him in several days. We saw some of his nurses, and they enjoyed his artistic creation. Peter and I were also given a pit crew goodie bag of chocolates and cherries, to help support Mattie Thunder!
Left: Mattie opening up his Rolling Thunder package, and he immediately put on the hat.
Right: The package motivated Mattie to get out of bed and decorate his wheelchair. I loved seeing Mattie use his legs and arms!
Left: Mattie was ready to head out of his room to roll down the hallway.
Right: Got to love that smile!
While Mattie went for a walk, he stopped by the parent lounge and was concerned about Linda's fish. He wanted to make sure they were fed. So we did that. My parents came with us, and Mattie had a good time staring at the fish and talking with my parents about them. They made up stories about the fish, and naturally Mattie was very interested in a particular aspect of the fish. Remember he is a boy and 7! The hot topic was watching and discussing the fish pooping. That provided him with great laughter. After the emotional havoc we have experienced this last week, laughter was very welcomed regardless of the subject matter.
Mattie continued to play with my parents back in his room. They made up pretend stories, featuring the main character, Captain Mattie. They were following the fish theme, and my dad and Mattie pretended to transform into a fish (the discussion of how they developed gills and fins was a riot), and they dialogued about this for at least 30 minutes. I just observed this discussion, and my dad worked hard at removing me from the play scene, so that Mattie was solely engaged with my parents. Mattie had a great time, and he eventually decided to watch a Scooby Doo video with them.
It is now 9pm, and I await Peter's return to the hospital so we can change Mattie's central line dressing, which is important, since his current one is falling off of his body. We tried to change his dressing last night, but we had to abort that disaster. I believe Peter will be going home tonight and will return tomorrow morning. It is my hope that Mattie is stable enough to have only one of us here at night. So tonight should be very telling. At the moment, Mattie is complaining of pain, and is whining. Which at this point that sound alone makes me edgy.
We would like to thank the Cooper family for a wonderful homemade dinner. The soup and pasta were delicious. We also want to thank the Magnuson's and the Cooper's for offering playdates today. Your support means a lot to us!
I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "I hear your anguish at having to spend day after day at the hospital with everyone (especially Mattie) missing out on the joys and the ups and downs of a normal childhood. It must feel like you are frozen in time with the situation not showing a resolution or even a significant change any time soon. On top of that, there are no clear right or wrong choices for Mattie's surgery and chemotherapy; and certainly no guarantees regardless of the direction you choose. This is anxiety provoking to the highest level and causes you to continually weigh and revisit your decisions. Each new piece of information, rather than making things clearer, seems to muddy the water even further. I know you would like company but with Mattie's emotional situation as fragile and changeable as it is, it ends up costing more in emotional energy than you gain from a visit so you have to remain isolated in your "nuclear family" for the most part. I know this is hard on you since you are a very social, involved person under other circumstances. I just hope that Mattie's emotional reactions level off soon so that others can come and visit and provide some much needed social diversion for all of you."
No comments:
Post a Comment