Monday, September 22, 2008

Monday, September 22, 2008

Well guess what? I am proud to report that we broke the 4am wake cycle last night. Mattie slept on an aerobed in our room, and we did not hear a peep out of him all night. It is my hope that being in our room provides him some comfort, so that we can all get some much needed rest. Mattie started out strong today, he was playing with me, doing a puzzle with my mom, and then was even walking and running around. However, by mid-afternoon, he was wiped out. You can tell he is wiped out, he turns white as a ghost and basically heads right for me, buries his head into my stomach, and I realize this is the sign that he needs to rest. He literally went to lie down for two hours today. Something highly unusual for Mattie under normal circumstances. But I realize nothing is normal about our current state.

While Mattie was napping this afternoon, I had a visit from our in-home nurse, Barbara. Barbara was lovely and low key. She helped me learn how to administer G-CSF to Mattie. G-CSF (granulocyte-colony stimulating factor) is an haematopoietic growth factor. It stimulates the bone marrow to produce more white blood cells. One of the main side effects of chemotherapy drugs is a reduction in the number of white blood cells. This makes your body less able to fight infection. There is a risk that you could develop a serious infection, which might have to be treated in the hospital. G-CSF can be given to people in this situation to stimulate the bone marrow to produce new white cells more quickly after chemotherapy. This can shorten the period during which you are at risk of developing a serious infection. G-CSF needs be be pushed through Mattie's central line over a 30 minute time period, and therefore needs to be administered through an IV pump. So today, I learned how to flush Mattie's line with D5W, followed by the administration of G-CSF. I will have to do this process each day this week, in addition to the dressing changes, flushing his lines daily, and making sure he takes certain medications orally. No problem, right?! Of course no drug comes without potential side effects, and I looked up each one. G-CSF can produce: 1) Bone pain, 2) Red, itchy skin, 3) Fever, chills and fluid retention, and 4) Nausea, vomiting and diarrhea.

Mattie had a visit today from our neighbor upstairs, Kathleen. Kathleen has had her own battles with illness and lost her husband to cancer. When she heard Mattie's story, she was very concerned. She brought us some lovely Gerber Daisys today and a vial of holy water from Our Lady of Lourdes. All very special gifts. Technically if Mattie is neutropenic (low white blood cell count, which he isn't yet), it is suggested that we not have fresh flowers in our home. So I have them sitting outside on our patio table, but to me there is nothing perkier or happier than seeing the smiling face of a gerber daisy. After Kathleen left, Mattie and I built a lego fighter plane and did some word games. Later in the afternoon, Mattie played with my mom and then we all took a walk outside together. So it was a good day, free from non-stop interruptions, and full of fresh air and frankly freedom!

I would like to share three e-mails I received today. The first e-mail I would like to tell you about came from Rocio Johnson, the Marketing and Communications Coordinator at Caribbean Conservation Corporation. You may recall that Rocio was working with me on generating an article for their Tour de Turtles newsletter. Rocio sent me the electronic newsletter today. You will see a copy of it below, and to the side of it, I placed the actual text so you could read the article. On a side note, Rocio told me today that Mattie's sea turtle, Roxana, was named after their Costa Rica Director. Rocio took a copy of the story to show her, and she was very moved. She had a young daughter who passed away from cancer and she told Rocio to let me know that Mattie will be in her prayers. I told Rocio that I REALLY appreciated this story about how Roxana got her name. I am saddened to hear that the Costa Rica director lost a daughter to cancer, but I feel that there is something very symbolic by having Mattie's turtle named after someone else who had cancer touch her life!

Here is a copy of the newsletter article I received today:

This week, Roxana was able to bring joy to a 6-year-old boy named Mattie. Mattie has been diagnosed with osteosarcoma, a type of bone cancer, and began chemotherapy on August 7th. To help cheer him up during long hospital visits, his preschool director adopted Roxana, a participant in this year's Tour de Turtles. "Mattie is very excited to be the proud "parent" of a large green sea turtle named Roxana," said Victoria, Mattie's mom. "We are thoroughly enjoying the new addition to our family!"
In order to help Mattie, his family began a blog to tell everyone about his battle with cancer. In this blog, his family credits Roxana for reminding them of a valuable lesson. "We are learning that fighting osteosarcoma is a marathon and not a sprint," said Victoria. CCC would like to thank Mattie's family for reminding us that both sea turtles and Mattie are fighting, in their own way, for survival. To learn more about Mattie and read his blog, please visit http://mattiebear.blogspot.com/.


The second e-mail I received today that I would like to tell you about came from my former neighbor, Goli. Goli and her husband, John, recently moved to NYC. However, over this past year, we all became very close, and they lived right next door to us. Goli wrote the following, "You know in my life, I have met a lot of people. But, John and I have not met a family, such as you, Peter, and Mattie that we love, respect, have admiration for all members of that family such as we do for yours. I knew you were different from the first time I talked with you. Now I am more grateful to you for, as Peter used to say, "trusting us with the most precious person in your life.” I am indeed delighted that you trusted us with Mattie. My only regret is that I did not attempt to get to know you as soon as I got to DC, and lost so many precious days." Goli's e-mail was so meaningful, because I too could have struck up a relationship and friendship with her sooner. The issue went two ways. However, I have a feeling all of you can relate to this feeling of a lost opportunity with a friendship. We say to ourselves, I am not going to reach out to someone today, maybe tomorrow. Or better yet, perhaps we are afraid to strick up another friendship because of how it will impact our lives, or fear of things not working out. However, I am glad that Goli and I did eventually connect, because no amount of geographical distance can sever such a friendship.

The third e-mail I received today was from a GW student who I have had the pleasure of getting to know over the past two years. Emily W. and I worked on a research project together, were neighbors, and also Emily eventually became one of Mattie's babysitters. Emily recently moved back to NY, but when she found out about Mattie, she was devastated. She wrote this to me today, "I know that you have only recently learned about how much you mean to so many people in this world, unfortunately you learned this through Mattie's situation, but I want you to know how much you have meant to me. Professionally, academically, and most of all, personally, you have been such a great support, means of encouragement, and motivator to me. I would have never been successful at GW without you- Before I even started the program, my goal was set out to be just half as amazing of a student, leader and contributor to GW, CSI, and to students as you have been and still are. No words will ever be great enough to express my gratitude, admiration and love for you- but all I can do is try :) Vicki, you are amazing- Mattie is lucky to have such wonderful, caring, intelligent, generous, and passionate parents as you and Peter are. It is very obvious to me and everyone who knows your family how Mattie became such a smart, sweet, kind, and handsome boy." You may be wondering why am I putting these wonderfully personal comments on the blog? Well I guess for two reasons. One, hearing such comments are of great comfort during a time when I feel directionless and at times helpless. In a way, such positive feedback can be very empowering as I tackle the next major obstacle in Mattie's day/life. But second, I think I tell you this because sometimes, we have no idea how our lives impact people, until such a crisis arises. The feedback I am receiving lately leaves me in awe. It also shows me the importance of telling someone around you each day how much you appreciate them, or by simply saying, "You Did A Good Job!" Those five words don't require a great expenditure of energy to deliver, but who knows the type of energy they will be received with!

On the electronic front, thank you Kim, Susan, Emily W., Julie R., Margaret, and Lorraine for the wonderful e-cards, and Paul and Barbsie for the great e-mails. Thank you Kristin E. for dinner tonight. Your Martha Stewart Macaroni and Cheese was wonderful, along with the heirloom tomatoes (delicious!). Mattie appreciated the snickerdoodles! I head into another day tomorrow where Mattie is home without the usual structure we have gotten used to in our lives. No school, no camp, and no extracurricular activities. It at times is daunting and overwhelming as a parent to deal with this but then I catch myself, and realize, does it really matter? The answer is NO! Because what we should be doing is enjoying this time together, and not worrying about what is or isn't being accomplished.