Tuesday, February 10, 2009

Tuesday, February 10, 2009

Quote of the day:

"Life just seems so full of connections. Most of the time we don't even pay attention to the depth of life. We only see flat surfaces." ~ Colin Neenan

We received IV kytril last night by courier around 9:30pm. Thank goodness! Peter administered it to Mattie, and by midnight Mattie was hungry. Mattie ate ham, cheese, and owl and pussycat shaped cookies! We were thrilled. Thankfully our in-home nurse (that insurance paid for about two or three times) taught me in the Fall how to administer Kytril. It isn't like you can just put it through his central line. You have to follow the SASH principle/process, which means you flush Mattie's line first with Saline, then you Administer the Kytril, follow it by flushing the line again with Saline, and then lock off the central line by flushing the line with Heparin. Acronyms are VERY helpful to me! I stayed with Mattie last night, but I was feeling ill. I had a stomach pain that wouldn't go away. I had this type of stomach pain one other time in my life, so I knew it was brought about by stress. When they say stress can kill, they aren't kidding. Stress is a funny concept, because we all experience it, but if can be expressed and felt differently. Under intense stress, I may look okay physically, but internally things start shutting down. At 6:30am, I couldn't handle the pain anymore, and got up to take advil. Thankfully I haven't felt the pain since that point.

Mattie was up at 8am. He refused to get dressed today, and I was going to talk with Mattie about this, but I figured this wasn't a battle I wanted to take on. Fortunately for me, Ann was coming over to keep Mattie busy and in the process get his body moving. When Ann arrived, she had her basket full of activites (and delicious homemade spinach dip!) with her, but Mattie wanted to finish a project he started with Ann a while back. They built a volcano together, but Mattie never had the chance to erupt it, and he wanted to wait to do this with Ann. Mattie reminded me today to pull out the volcano and he had me set up a drop cloth for the excitement. Mattie loved it, he just kept pouring more and more baking soda and vinegar into the volcano to get a larger reaction!

Mattie and Ann did all sorts of activities together. They excavated some lizard toy bones from a block of clay, and also worked on valentine's day mailboxes for school. Ann helped Mattie design four boxes, one for each first grade classroom at SSSAS. All the first graders will be making valentine's for Mattie and placing them in the boxes. Mattie decorated these boxes today, and yesterday Mattie created a valentine's day card on the computer, and we forwarded this card to Mary Dressendorfer (SSSAS' director of technology), who will print out copies for every first grader and Ann will distribute them. I can't thank Ann and Mary enough for making this valentine's day card exchange possible. It helps Mattie celebrate this holiday and keep him connected to school. Ann also helped Mattie make valentine's for Peter and I, and they are very special to us. Check out the boxes and valentine's!

In addition to all the fun activites they did together, Ann got Mattie up and moving using his walker. Ann motivated Mattie and with each major move he made, he got to move the cockroach on the cockroach incentive chart. I have been unable to get Mattie to use the walker since we have been released from the hospital, so the fact Ann did this today was amazing. In fact, Mattie continued walking for me during the afternoon, and literally he walked so much, that the roach made it all the way to the finish line of the incentive chart. Mattie in motion........

While Mattie was with Ann, I had the wonderful opportunity to be treated to lunch by Ellen (Charlotte's mom). Ann and Ellen coordinated this beautifully. It was a surprise to me, because I did not realize I was going out to lunch until last night when Ellen e-mailed me. Ellen and I walked to Washington Harbor, and it was lovely to walk, talk, and to see the Potomac River. We had a delightful and calm lunch at Tony and Joe's. This is a day I won't forget anytime soon. It may sound funny, but in a way I have to learn to live again. I am so used to dealing with one medical task after another, that it is sometimes hard for me to let all this go and just be. I appreciate Ellen and Ann trying to help break this cycle today.

When Ellen and I came back to see Mattie, he wasn't pleased with me because I was trying to talk with Ellen and Ann. The focus was being shifted from him to others, and I know he doesn't care for this, but it is a fact of life, people talk to each other! We had an incident like this in the clinic on monday, and I gave him a time out in his wheelchair. But today, this technique did not seem like it was going to work. So Ellen left, which I felt bad about, and I sat down next to Mattie and hugged him. He started crying. I believe part of him knows he is doing the wrong thing, and the other part of him just feels some sense of security having me focus my attention on him. This is the perfect example of why it is challenging to parent a child with cancer. Sure I could have just disciplined him and had him melt down, but frankly this isn't always effective, and like any good parent knows you have to assess the environment, the content, and situation before reacting. After I hugged Mattie and redirected him, he pulled out of this funk.

After Ann left, Mattie continued to walk around and he literally moved the cockroach to the finish line of his incentive chart. With that, Mattie felt he earned a trip to the toy store. Peter and I need to set some ground rules for Mattie, because he can't be going to the toy store after the incentive chart is completed each time. I discussed this with Mattie today, and he said he understood and would work with us on what his prize would be each time the chart is completed. But today I let Mattie visit the toy store. However, that meant he had to get dressed. Unlike this morning, he was motivated to get dressed, and we headed off to the car. I really wasn't in the mood to make this journey and to lift the wheelchair in and out of the car, but I did it.

Mattie came home with a toy and he spent the rest of the afternoon setting it up. It was good exercise for him to use his hands and arms. At around 6pm, we have a visit. Olivia, a SSSAS mom, delivered us a wonderful dinner. I am enjoying the opportunity to get to know Olivia. We talked about our shared religion and how in all reality our spirituality and religion surrounds us in our everyday activities and tasks, and in our homes and our hospital room, not just at church. I know that Ashley (who hosted Mattie's prayer service in the fall) had spoken to me about this as well, and this philosophy really rings true to me this year. I think we are so programmed to think of our religion as confined to the four walls of a church, but in all reality this isn't the case. God is with us wherever we go, and for me right now, home and the hospital are our sacred grounds. Thank you Olivia for the wonderful breaded chicken stuffed with cheese, which I hope you consider submitting to Liza for Mattie's cookbook. We really appreciate the girl scout cookies and the movie, Black Beauty.

Mattie, for the first time in ages, wanted to sit with us at the dinner table. In fact, he even said grace. The same grace he learned in Kindergarten (We thank you Lord for this our food, for rain and sunny weather. We thank you Lord for happy hearts and that we are together). While eating Mattie started to feel nauseous. We moved his chair next to me, and I was able to put some food in his mouth, while Peter told some great stories about when he was a child. Mattie and I loved to hear them, and it distracted Mattie enough so that I got more food into his mouth. Once dinner was over, Mattie for some reason had the desire for blueberry pancakes. Fortunately, thanks to Denise (who delivered us some wonderful fruit a couple of days ago), I had blueberries. So I made homemade pancakes. Mattie ate four pancakes. However, soon there after he was sick to his stomach, and Peter gave Mattie another dosage of Kytril. As I type the blog tonight, Mattie is sitting right next to me, and seems okay.

Mattie has a big night tomorrow. Jenny (one of Mattie's art therapists) gave us several tickets to see Disney on Ice at the Verizon Center. Though Mattie is neutropenic, his doctors are okay with him going assuming he isn't being surrounded by people who are sick. We hadn't told Mattie about this event, because we weren't sure if he would be sick by wednesday, but tonight we told him the news. He is excited about this outting. As I sign off for the evening, I would like to share two e-mails with you. The first e-mail is from Whitney. Whitney is one of Linda's former childlife interns, and Whitney is working with us on mondays now. Whitney wrote, "I just wanted to thank you so much for giving me the opportunity to work with Mattie! Today was an absolute delight to see you guys again and I had so much fun with the both of you. When you went in to speak with the doctor, Mattie and I were hanging out and just talking while we were patiently waiting for Jenny and Jessie to start up that clay spinning wheel that he was so anxious to use! There were a few things that just made me so happy when we were talking. At first he looked up at that painting of a sun with a sad face on the wall. And he was like "Ya know I just really don't like that picture, suns aren't usually sad and I thought this place was supposed to make kids happy ..me and other kids don't want to see a sun with a sad face." So we talked about that for a while and then he looked over at me with such a sincere look and asked "why did you guys (Whitney and Lesley) leave this place? ..we really liked you here." I said "Ya know Mattie, it was not that I wanted to leave here but my internship was complete and there were 2 more interns who had to move in so they could get the wonderful experience that Lesley and I had." And in a confused way he said "oh so you got a job somewhere else?" And I said "well not quite yet, but I am working on that." And then he looked at me again with a very sincere face once again and said "ya know, we really miss you here, I really miss you." On my way home, I kept thinking about what Mattie had said. Many people will tell you that they like you or how much they are going to miss you, not knowing whether they truly mean it or not, but when it is coming from a 6 year old boy who is going through so many other things in his life and he takes the time to sincerely look at you and let you know that he misses you is just the best feeling in the world. Mattie has such a huge support group with neverending love and care, and the fact that he told these things to me as just the "intern" that worked with him for a few short months just means so much to me. You and Peter have raised such a wonderful young boy with such a huge heart and I am so glad to have not only the pleasure of meeting you all but to be asked to come back and work with Mattie one-on-one even after my internship was finished is just such a great honor! I am so excited for the weeks to come to see you guys and I hope I can be somewhat of a help! Thank you so much again Vicki!"

The second e-mail is from Charlie, my former student and now friend. Charlie wrote, "Today's quote struck me. How we go along not paying much attention to what goes on inside of us, just assuming all will function as it should and allowus to work, play and move along as always. Mattie's situation has made me so much more aware of what goes on inside a person, of the need to be nourished physically, spiritually and emotionally for balanced well being and how often I do not pay attention to one or more of those needs. You and Pete do such a good job, along with the Georgetown staff of trying to meet those needs and bring Mattie's system into harmony, I hope that his nausea and eating problems resolve and that area can be balanced as well as the others and he can continue to grow and flourish. I have added this thought to my daily prayers for his well being."