Monday, March 23, 2009

Monday, March 23, 2009

Quote of the day: "When one begins to purposefully perform acts of kindness, thespirit changes and soon doing good deeds becomes a focal point for ourlife; doing good begins to be the same as feeling good. The periods ofemptiness when we search for the 'meaning of it all' begin to fill withacts of kindness." ~ Gary Ryan Blair

Peter helped me tremendously with Mattie this morning. He helped me get Mattie dressed, packed up hospital items, and helped me transition Mattie to the car (along with putting the wheelchair in the trunk). Having him around made the whole process go much smoother today. We checked in the clinic around 11am. Mattie was happy to show Jenny his lego creation of "what a hospital should be." Jenny really liked it and asked Mattie about all of its parts and features. Mattie was animated with Jenny, and this animation continued for the rest of the day! Mattie worked on a wonderful boxed structure with Jenny. He was creating a pizza parlor, however, it isn't like one I have ever seen. It has wonderful things hanging from the ceiling like butterflies. Mattie and Jenny made cute little chairs and tables for the people sitting in the restaurant. While we were in clinic, Mattie had a special visitor, Margaret. His first preschool teacher from Resurrection Children's Center. Margaret spent most of the day with us. She enjoyed seeing Mattie happy, talking, and engaged with others. It was a full day, Mattie even celebrated the birthday of two patients today! While Mattie was in clinic he had his vitals taken and his blood drawn to make sure his platelet count rose today so he would qualify for chemo!

I want you to get a feeling for timing here. We arrived in the clinic at 11am, we found out maybe by 1pm, that Mattie met his required counts. So then I went to the admission's office to do the same old admission process. Some things DON'T change! After the admission's process, I headed back to clinic, where Mattie was playing with Margaret and Jenny, and packed things up to head to the PICU. Mattie started his MTP-PE infusion at 4:30pm! This is five and a half hours after we arrived at the hospital! I did not give this time difference a second thought, because I have gotten used to it, and I have learned to just deal with it, what a sad commentary, no? But Margaret reflected upon the intense waiting time to me, and she said this must be hard on me to do with each admission. So true! In the beginning it drove me crazy, but I equate this to traveling to a foreign country. At first the different ways and customs catch you by surprise, but then you become acculturated to the new ways and you adapt to being in that Country. So in essence after eight months, I have adapted to the hospital culture and its slow turn around time.

Okay to really put timing in perspective, Mattie began methotrexate at 1opm tonight! Almost 12 hours after his admission.

Mattie's grandparents arrived back from their trip to South Carolina today, and before heading back to Boston, came by the hospital to spend a few hours with Mattie. Mattie enjoyed their visit, and also enjoyed introducing them to Margaret, Jenny, and Liza. They brought him back a pirate t-shirt that he thought was very neat!

Liza also visited with Mattie today. Liza is one of Mattie's favorite volunteers. After great discussion, this weekend, Peter and I decided to ask Liza whether she would like to work four hours for us every weekend. To my joy, Liza has agreed to do this! Peter and I both realize we need a few hours for ourselves each weekend. Liza brought a special book which she gave to Mattie today entitled, Mr. Popper's Penguins. Apparently this was one of Liza's favorite stories and she wanted to read it to Mattie. Margaret mentioned she loved this book too! The story helped to keep Mattie in the room long enough for Katie, Mattie's wonderful HEM/ONC nurse, to hook him up to his MTP-PE. Mattie was Mr. Social today. He spent a great deal of time in the hallway and childlife playroom. I think people were very surprised by Mattie's good mood. I am not sure how long it will last, but when he is like this it makes it easier for others to play and interact with him.

While Liza and Mattie's grandparents were visiting with Mattie, I went out into the hallway and had lunch with Margaret. Margaret brought me a lovely lunch and we had a nice time chatting and catching up with each other. I really appreciated the lunch and adult conversation. Thank you Margaret for spending the entire day at the hospital with us, and of course for all the goodies and activity books for Mattie. The watermelon was a hit!

Later this afternoon, I had a visit from Virginia B. We never met Virginia but she learned about Mattie through her neighborhood listserv. She is a faithful blog reader! In fact, Virginia told me that her son's school knows about Mattie too! Amazing. Virginia came to visit us and brought Mattie two wonderful gifts, a wind up roach and a lego fork and spoon. Wonderful! Mattie is excited about both additions. Thank you Virginia for your kindness and for opening up your heart to a six year old you never met before! It means a lot.

This afternoon, Mattie spent a great deal of time with volunteers, Meg (one of Linda's interns), and Linda of course. Mattie even had a race around the hallway on FOOT. He raced against Liza and Meg. Of course he won. They really hammed it up and he loved it. Mattie was introduced today to Wii Fit! Thank you Lana, you brought a whole new world to Mattie. Mattie has achieved the title, Yoga Master. You should see how well he balances. In fact, Mattie's nurse, Katie, came to find me because she was so impressed with Mattie. Katie even took pictures of Mattie in motion. I think she really captured the moment. Thank you Katie!

We want to thank the Pisano family for a wonderful dinner today. We so appreciate the support on our first night back in the hospital after two weeks!

I had the opportunity today to meet a young lady in her twenties who has osteosarcoma. She is back in because she has a reoccurrence. Mind you she only had one tumor during her first diagnosis. I think the fact that she had a reoccurrence is making me see that it is the luck of the draw who gets a reoccurrence and who doesn't. This young lady is so bright and has such a positive attitude, but you must marvel at these individuals who get a cancer reoccurrence, and where they find the inner peace and spirit to continue fighting are amazing. They give me pause, because I know how hard this is to deal with cancer the first time around, I can't imagine going through this treatment again.

So at 10pm, Mattie started his four hour infusion of the toxic highlighter yellow chemo, methotrexate. This is a particularly horrible process, because every four hours you have to collect urine for analysis. Should be a fun night. Especially since Mattie will have a whole lot of hydration post-infusion in order to try to flush this stuff from his system! After tonight, then it is a waiting game until his blood methotrexate level comes back at .1 or below.

I end tonight's blog with a message I received from my friend Charlie. Charlie wrote, "Sunday's blog had a message--sometimes the best thing we can do, in the midst of pain, sadness,or situations we cannot control, is to do something for someone else. Vicki, you are a perfect example of that for me. A full fledged member of the "circles of care" community, you find time to give back. Many people don't realize how much small things mean to others, whether it is a newspaper to read about your favorite team or sharing bread so that someone else can feed the ducks. It all comes around to reaching out and showing love, care and compassion for others."

"The world is never saved in grand messianic gestures, but in the simple accumulation of gentle soft almost invisible everyday acts of compassion"......says Chris Abani, a storyteller of interpersonal humanity. He recalls the S. African phrase of ubuntu: the only way to be human is to reflect your humanity back on me.