Monday, April 20, 2009

Monday, April 20, 2009

Mattie's Quote or memorable dialogue of the day (Thanks Jenny!): Mattie was at the art table in clinic today and he started counting in Spanish. Jenny asked Mattie where he learned to count in Spanish so well. Mattie's response: "I learned from my Dad. Dude.... you know he is from Boston!"
We found this SO hysterical, because in Mattie's mind everyone in Boston speaks Spanish, as if that was the State's official language!

Quote of the day: "There are no unimportant jobs; no unimportant people and no unimportant acts of kindness." ~ Anonymous

No matter how early I get up, get ready, and prepare things to leave for clinic, I just do not seem to be able to get there until close to noon. Mattie got up this morning and had a slow start, but he cooperated and got ready to head out for the day. But what a LONG day it was. Mattie and I did not return home from clinic until 7pm! So we had a seven hour day in clinic!

When we arrived in clinic, a birthday party was under way. Another patient, who is much older than Mattie, but also has osteosarcoma, was celebrating her birthday. She chose a fun theme, and served non-alcoholic margaritas, chips and salsa, and of course cake. Mattie tried the margarita but did not care for it, in fact he puckered his lips from the sour taste! None the less, Mattie ate chips and cake! It was a fun way to start off our clinic day. Then Mattie had his vitals checked and a blood draw. It turns out Mattie's white count fell, and he is neutropenic again. His absolute neutrophil count was 400 today, and it was 1400 on Saturday. Mattie's platelet count is rising, it was 29 today, up from 18 on Saturday, however, his count needs to be 50 or higher to qualify for chemo. So we are heading back to clinic on Thursday in hopes that his body will be ready to receive high dose Methotrexate. If his counts look good, he will be admitted on Thursday.

So what took up the rest of our time in clinic? A MTP-PE infusion! At lunch time, Ellen (Charlotte's mom) came to visit us, and brought us both a wonderful lunch. Ellen knows how much I love mango chicken salads and she introduced me to a lovely carrot cake today. Normally I am a chocolate person, but this carrot cake was hard to resist. Ellen also gave Mattie a special baseball hat that she got for him from Legoland in the United Kingdom. It was also Mattie's favorite color, red! I continue to be touched with others who consistently think of Mattie on their vacations. It means a great deal, and it makes us feel like you not only thought of us while on vacation, but that you wanted to share a part of your trip with us. How special, and in that sense, we are a lucky family. Of course, I think our luck ends at that point!

While Mattie was playing non-stop with Jenny designing a "haunted boat," I had the opportunity to sit with Ellen and chat with her. I continue to be in amazement and deeply touched with how much Charlotte (One of Mattie's first friends in Kindergarten, and what you need to understand, Mattie and Charlotte were talking about marrying each other last year. It was very cute!) thinks about and misses Mattie. I am not sure why this surprises me, maybe because I figure this type of caring and concern are more typically expressed in adults. I think I expected many of Mattie's friends to forget about him as the year went on, but this has been the farthest from the truth. His true friends are still there! It is an interesting life lesson. Through Charlotte I am learning a lot about the depths of friendships that children are capable of. Charlotte can't understand why Mattie developed cancer and is so sick. This is a tough question to answer, because there is NO real answer. Nothing about Mattie's illness makes sense and I agree with Charlotte, it is "UNFAIR." I couldn't have said it better. What Ellen said to me today really made an impression on me. She said that I am constantly thinking and caring for other people and the daily blog is just an example of this. She thanked me for opening our lives to our readers and for our honesty. Saying this was a gift to receive, because the blog is indeed a labor of love. Thanks Ellen for the visit, a wonderful lunch, and of course for the support!

For most of Mattie's clinic visit he was very much active, and went through Jenny, a volunteer, and a medical resident. Jenny and Mattie played for hours, and they developed a new play scheme using his character, "Pinkie." Some of you may remember Pinkie. She is a rebel and a risk taker. Any case, Pinkie defied her parents today and boarded a haunted boat. Jenny was a real sport and kept the dialogue going. I tried to join in, but I just did not have the energy today, and Jenny took over my part too. Jenny is great at balancing multiple characters in a story. Mattie loved it! Then Mattie played for a bit with a volunteer and medical resident. This resident really tried hard with Mattie. She took off her white coat, and just was herself as she played today. It was an excellent way to build trust and rapport not only with Mattie but with me. The first time I met her, I was irritated that I had to deal with her line of questioning and examination of Mattie. Especially since Mattie would have to undergo the same questions and exam when his doctor was present. So to me we were asking Mattie to do the same thing twice, and frankly the less he is poked and prodded the better. After today however, I feel this resident went above and beyond to try to get to know the children in the clinic. Once Mattie's MTP-PE infusion was done, Mattie played hide and seek with the volunteer and the medical resident. Mattie was loving it, and wheeled himself around the entire clinic. However, at around 4:45pm, I noticed Mattie was shutting down and he was looking very pale.

The nurses called Dr. Abu-Ghosh to the clinic to examine Mattie. We moved Mattie to a bed, covered him with blankets and tried to assess whether his chills were going to turn into a full blown negative MTP-PE reaction with rigors (or intense chills and teeth chattering). To my amazement, Mattie did not develop rigors, but he developed a fever. This is a possible side effect of MTP-PE, but not one I had experienced before. While dealing with this ordeal for over an hour, Jenny (one of Mattie's art therapists) sat with me the whole time. She plugged in the movie, Aladdin, for Mattie and he rested and watched quietly. Resting and quiet time for Mattie means only one thing, he ISN'T feeling well! While we were with Mattie, it was nice to have Jenny's support. Jenny is just a delightful person and professional, and though it was after her work hours, it meant a great deal to me that she stayed with us. Jessie and Linda also came by! During this time, I also had the opportunity to see a poster that Jenny and Jessie are presenting at a conference on Friday, and Linda came to see Mattie because she heard he wasn't feeling well. This is an incredible threesome, who are worth their way in gold.

Mattie and I finally got home at 7pm. He did lose his fever, and now he is up and energized. As if nothing ever happened. The beauty of being seven. He has recovered, and I am wiped out! We want to thank the Magnuson family for a wonderful dinner tonight and the great gifts you gave Mattie. Mattie was going to see Zachary tonight when his mom dropped off dinner, but it never happened since we got home so late.

We want to thank Joan Holden, Mattie's head of school, for calling us today and leaving us such a meaningful and heartfelt message. We value Joan's support and that of Mattie's school.

I would like to share a message I received today from my friend Charlie. Charlie wrote, "I am so glad that Sunday was a good day all around. It is great to read about Mattie enjoying the company of others and wanting to help with chores. Resuming his place in the family is a critical part of the healing process and it is wonderful that you and Peter are understanding and supportive of that. Too many times we are impatient with someone who can't do it "fast enough" so we do it ourselves. It is a gift to give a child or anyone the opportunity to help even if that makes the task take longer. It is easy to forget this in our rush to get things done; we lose the feeling of satisfaction of companionship and of actually working at something. I also appreciate your ability to transition from the 24/7 mom to the more normal situation of being able to give Mattie space now that he is ready to have more independence. Lots of parents have great difficulty making this transition and it slows down their child's recovery although that is clearly not what they intend. This too is a great gift-and it is wonderful that Mattie is once again secure enough to take advantage of it."


I end tonight with a video clip that Charlie sent me. This video caught my attention, because a simple act of kindness can have profound effects on others. There is a lot we all can learn from Johnny. I hope you enjoy this as much as I did.

http://www.stservicemovie.com/