Tuesday, March 10, 2009

Tuesday, March 10, 2009

Quote of the day: "The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly." ~ Buddha

Mattie had a hard time settling down on monday night. He and I were doing a craft project at midnight and then reading some books. At which point, he was still ready to do more, but I shut off the lights, and rubbed his head. He eventually fell asleep. He was up consistently every two hours last night to use the bathroom, and at one point he was screaming about something in his sleep, but he did settle back down easily. Neither Mattie nor I could get up this morning. When you sleep in two hour increments, it is easy to sleep to 11am, and still not feel like you had a good night's sleep.

Mattie woke up this morning and really wasn't hungry. He ate a little oatmeal, but I wasn't happy with his lack of appetite. So this morning in addition to administering him GCSF (white blood cell growth factor), I also gave Mattie Kytril. Both GCSF and Kytril are administered through Mattie's central line. I recall when I left the hospital, Mattie's nurse, Kathleen, was impressed that I knew how to administer these medicines at home. She told me I am becoming a nurse. Indeed! If you told me a year ago that I would be pushing medicines into my son's central line, following a sterile technique, I would probably just laugh off the statement! But it is amazing what you will learn in order to get your child better. I think the Kytril did help, because by lunchtime and dinner time, Mattie actually ate!

Mattie and I built a Star Wars lego set that Linda gave him at the hospital. This kept us busy for quite some time. I spent the majority of the day in my pajamas because Mattie kept me quite busy from one activity to the next. But by 2:30pm, I had it. I went upstairs to shower, and left Mattie to watch a children's program on TV. When I got out of the shower, I heard something rustling around outside my door. So I opened up the bathroom door, and guess who I saw crawling up the stairs? Mattie managed his way all the way up the stairs. It is funny, normally we want to praise our children at Mattie's age for their independence. But risky behaviors for Mattie, in my book, should be avoided at all costs. To me trying to climb steps without an adult supervising is dangerous. Mattie and I have discussed this in the past, which is why he was climbing up the steps on his backside. Sliding from one step to the next. Any case, he was proud of his accomplishment, and what he was trying to do was surprise me! Which he did. But he came up on a mission. He was looking for his kindergarten box. Within the box were many of his assignments from last year as well as all his writer's workshop materials. Writer's workshop is a method used to teach children how to write and create a story at SSSAS, Mattie's school. The funny part is Mattie did not like Writer's Workshop in the beginning of his kindergarten year, mainly because Mattie was not reading or writing, but was more of an emerging reader. So such a format could be challenging for such a child. But I saw that this method does indeed work. I saw Mattie grow throughout the year, and in the beginning he could draw a picture and then try to use a word or a few words to describe his picture/story. As the year evolved, he actually wrote full sentences to describe his picture. Not always perfect sentences, but they were understandable, and I could tell Mattie clearly liked telling stories. Today, Mattie was eager to pull out his Writer's Workshop materials. In fact, when he went to his room, and couldn't find his box, he blamed me for throwing it out! Remember who you are talking to, the pack rat of the century! I squirrel things away, but rarely throw special things out. So the box was relocated. When I showed him the box, he was very excited, and he asked me to sit with him and look at all his materials. We read through all his writer's workshop stories. I think some of his favorite stories revolved around trips he took, such as his trip to Boston to visit his paternal grandparents and got to see a chipmunk up close. Mattie really studied this chipmunk and how it interacted with the birds around it. Needless to say, Mattie loves telling the "chippy" story! Mattie also loves writing about his trips to California to visit my parents. He wrote a story about riding the airplane to Los Angeles. These stories are priceless and the drawings illustrating the stories are just as precise too. In a way, I felt that Mattie was making a statement today. Mattie is ready to learn or reconnect with learning. Mattie read through his number book today, as well as a poem book he created in Ms. Williams' class. It was just interesting to experience Mattie's excitement today and for a moment we were both transported back to a time to a typical day after school, where we would be reviewing whatever came home in his folder.

This afternoon, I received a call from Dr. Peters. Many of you may recall that Dr. Peters is the head of the clinical microbiology lab at Georgetown Hospital. I wanted to know if Dr. Peters was able to get more specifics about the reporting oversight of Mattie's VRE scare. You may remember that I told you that Georgetown cultures stool samples using a machine called the Phoenix (of all things!). Or at least this is how the culturing process was explained to me on February 29. Today, Dr. Peters said that Mattie's culture never went through the Phoenix. That it was always tested by hand. That the results were reported in the computer, but that the PICU staff did not know how to look up the correct and updated results. I tell you, as I told Dr. Peters, I was thoroughly confused. Which story is correct, the one in which the sample was evaluated through the phoenix first and then under Dr. Morel's direction the culture was then evaluated by human hand/eye. Or the new story, that the culture was evaluated by hand first and then the positive sample was placed in the phoenix for confirmation. To me these are very different stories. Dr. Peters did tell me that the process for culturing is being reexamined at the hospital, and he told me that the whole lab is aware of Mattie. That his file is flagged, which means to me, that such an oversight won't happen in the future for Mattie. Dr. Peters did assure me that if I ever have concerns about Mattie's future cultures, to call him directly and he would personally evaluate them! Doesn't get better than that! I of course could pursue the inconsistencies in stories, but frankly I think I caused enough chaos so that the process of culturing is being looked at, which was my ultimate goal. No one should have this unnecessary scare.

After I got off the phone with Dr. Peters, Mattie was disgusted with me. Like many six year olds, he doesn't like to see me on the phone. We talked about why it was important for me to be on the phone and why his pouting and attitude wasn't acceptable. Mattie spent the rest of the afternoon washing his hotwheels cars. He started with a soapy bin, and then we moved up to a bin and a bowl, and by the time we were finished, we just moved all the cars to the bathtub. Mattie put his arms and feet into the bathtub as well. Which was wonderful to see, because since his central line was placed into his chest, he is afraid of water. So it was great to see him comfortable around the bathtub!

I think the days non-stop activities wiped him out, and he decided he wanted to watch Scooby Doo videos in my bedroom. So we sat together for a while. I find it very interesting that he continues to want to hear stories about when he was a baby. I think he is trying to understand how he went from a normal baby to the state he is in now. Mattie will occasionally say to me, "I don't think I will make it." Normally Mattie goes about his daily business, and plays, so when these statements are blurted out, it catches me off guard. But I always process this with him and reflect on how much he has already accomplished and how well he is doing fighting off the bone bugs.

Later this afternoon, we were visited by JJ (our resident Jack Russell Terrier) and JP, our neighbor. JP brought Mattie his favorite pizza and pasta in hopes that he would eat. Thanks JP for thinking of Mattie! When Peter arrived home from work tonight, things were somewhat peaceful at home. A first for sure. We all had a lovely dinner together thanks to the Hanley family. Mattie ate two pieces of chicken, which was wonderful. Thank you also for the fabulous cheesecakes and the support. Amy, I look forward to meeting you one of these days.


I want to thank SSSAS for its continued support. I received a beautiful e-mail today from Bob Weiman, Mattie's head of the lower school, and we also received a lovely message from Joan Holden, Head of School. Thank you Joan for your continued support, for always checking in with us, and for reading our blog!

I want to share a message I received from my friend, Charlie. Charlie wrote, "Fear for the future is a natural response especially when faced with a disease such as Mattie has. The death of another child has to cut deeply for anyone who is fighting for their child's health. I know you and Pete want to keep a positive outlook, but don't feel you have to be that way all the time, that's impossible even for people who have little to be unhappy or concerned about. The key, I think, is to try to take things one day at a time and enjoy each as much as you can. Celebrate the victories (Mattie is back in normal clothing, using both hands)and work on the other things in manageable pieces-this is the children's joke: "how do you eat an elephant? One bite at a time". I know it is easier said than done to recommend not worrying but all you can do is plan a few routes and then let your family and friends help you navigate the hills, detours and potholes of whichever road cancer puts you on. We'll all be here with you for the journey."

As I end tonight's blog, I leave you with two things to reflect on!

Intentions Are Seeds ~ Gil Fronsdal (thanks Charlie!)

While our activities have consequences in both the external and internal world, happiness and freedom belong to the inner world of our intentions and dispositions. [...] Mindfulness places us where our choice is possible. The greater our awareness of our intentions, the greater our freedom to choose. People who do not see their choices do not believe they have choices. They tend to respond automatically, blindly influenced by their circumstances and conditioning. Mindfulness, by helping us notice our impulses before we act, gives us the opportunity to decide whether to act and how to act.

Every mind-moment involves an intention. This suggests the phenomenal subtlety with which choices operate in our lives. Few of us keep our bodies still, except perhaps in meditation or in sleep. Each of the constant movements in our arms, hands, and legs is preceded by a volitional impulse, usually unnoticed. Intentions are present even in such seemingly minute and usually unnoticed decisions as where to direct our attention or which thoughts to pursue. Just as drops of water will eventually fill a bathtub, so the accumulation of these small choices shapes who we are.

Our intentions - noticed or unnoticed, gross or subtle - contribute either to our suffering or to our happiness. Intentions are sometimes called seeds. The garden you grow depends on the seeds you plant and water. Long after a deed is done, the trace or momentum of the intention left behind it remains as a seed, conditioning our future happiness or unhappiness. If we water intentions of greed or hate, their inherent suffering will sprout, both while we act on them and in the future in the form of reinforced habits, tensions, and painful memories. If we nourish intentions of love or generosity, the inherent happiness and openness of those states will become a more frequent part of our life.

Thank you Liza for this passage from ECCLESIASTES 11:8. "Don't take a single day for granted. Take delight in each light-filled hour."