Quote of the day: "To give without any reward, or any notices, has a special quality of its own." ~ Ann Morrow Lindbergh
We resolved Mattie's IV hydration issue last night. Even though Georgetown did order Mattie's fluids, the pharmacy apparently never processed the request. When we got home yesterday evening and the supplies did not arrive yet, I was concerned. Dr. Abu-Ghosh helped us last night by talking directly with our in home pharmacist, and then our in home pharmacist actually hand delivered the fluids to us at 10pm. It took a well coordinated team last night to get the hydration to our home!
Mattie had a busy Tuesday. He even had the excitement of moving out of his PICU room and coming home, but despite all of this, he couldn't fall asleep last night. In fact, he was wide awake at 1:30am. I felt like a zombie. I was actually lying down while Mattie was up. The lights were off and he was in bed, but he was VERY much up. At 1:15am, he was complaining that his knee and ankle under the cast hurt him. He was crying, and said he couldn't go to sleep unless he had IV pain medication. That clearly wasn't going to happen. The only thing I offered him was Tylenol. Fortunately he took it. When the effects of the Tylenol started to kick in, he finally fell asleep. Oh wow! Mattie was up every two hours last night using the bathroom, so this morning I felt just as tired as when I wake up in the PICU.
Mattie was excited that Whitney (one of Linda's former interns) was coming over for several hours. After all, I admit I can get boring as a play partner after a while. Mattie has been very busy working on a police headquarters Lego set that his cousins sent him for his birthday. He did a great job putting it together, and literally he could have done it all by himself, but occasionally I find he needs help pushing the pieces together because they are a tight fit. Mattie was happy he could show Whitney this Lego set, along with his big T-Rex model he received from the Lombardi Clinic for his birthday. Some of you may recall that Mattie had his electric trains set up in the living room for three months. Several weeks ago, I put them away to reclaim the space back. However, my parents sent Mattie a wonderful Lionel Train set for his birthday. Mattie actually opened it the day his cast was put on his leg. It definitely brought a smile on Mattie's very sad face. So we said good-bye to the NY Central a month ago, and this week we are saying hello to the Atchison, Topeka, and Santa Fe Railway in our home. The neat part about this train engine is that it blows out liquid smoke that smells like vanilla. Right up Mattie's alley. So our living room is filled up again, and Mattie is loving it.
Left: The lego police headquarters.
Right: The train set, complete with T-Rex.
Whitney went to Florida last week to visit her sister. She brought back several birthday gifts for Mattie. One of the gifts was quite unique. It was an actual preserved alligator foot with its claws intact (see photo). It is tiny, but fascinating, and Mattie and I are both intrigued by it! Whitney brought Mattie several wooden plane models for him to assemble, one of which she purchased on a Naval base in Florida. The gifts were very thoughtful, and it was special to be thought of even while on vacation
While Mattie was having a good day with Whitney, I spent several hours out of the house. It was a a damp and rainy day in DC. Not my kind of weather, however, despite that, it was still wonderful to have several hours where I was not on the clock. I had several chores to accomplish today, and I could never have done any of them without Whitney's help. I went to the grocery store and pharmacy. Later in the afternoon, I met up with Ann at her house. I had lunch with her and we chatted. We talked about all sorts of subjects, and we also spoke about Mattie's pending surgery. We talked about what would happen if Mattie did not have surgery, but we took the wait and see approach. In which we just kept scanning Mattie, and not removing these suspect lesions in June. Sure that is an option, but as Ann said to me, our philosophy has always been to treat Mattie's cancer aggressively, in order to achieve a cure. That is true, which is why I know in my heart of hearts that Mattie does need a thorocotomy in June. How the surgery is done is something we are still trying to get smart on, but I can not rest knowing anything could potentially be growing in Mattie. In the midst of our discussion, Ann was also baking muffins, so I had the opportunity to have freshly baked muffins too. A delightful fragrance.
As many of you know, Ann, is our Team Mattie coordinator, and does a ton for us each and every day. So when I heard that her car was being fixed today, I was happy that I was around to help her pick up her children from school and to drive her to the car dealership. Clearly I know Ann and I don't have a quid pro quo relationship, because if we did she would be on the short side of the receiving end. However, it made me feel happy to help her in some small way. I have to say it was a strange feeling driving onto Mattie's lower school campus. I haven't been there since the summer, when Mattie was healthy and in camp. I am very aware of my issues since Mattie developed cancer. One of my main issues is I have trouble being around healthy children. It almost pains me, because I so want Mattie to be a part of this world. As I was looking at all these children racing around and headed toward their parent's cars, I could only think how profoundly different our world is right now, and then I began to wonder how is it possible for us to reintegrate back into our former world? Is there really a place for us out there? Though I still live in Washington, DC, and in the United States of America, for all intensive purposes, I feel as if I have been transported to another Country with its own culture. A cancer culture, with its own language, lifestyle, and activities.
Fortunately my train of thinking was disturbed when Ann's children and one of their friends entered my car. To my amazement, the children asked me how Mattie was, and that they missed him. I am not sure why that caught me by surprise, but it did. One of the children even asked if Mattie was going back to tennis camp this summer, because she said she enjoyed seeing Mattie. I may never look at tennis camp the same way EVER! Though part of me is thankful for tennis camp because this brought Mattie's right arm tumor to our immediate attention.
When I got back home, Mattie was having a good time with Whitney and he did not want her to leave. On my shopping journey today I bought Mattie a pair of Scooby Doo crocs (shoes). When I gave them to him, he was THRILLED! Mattie and Whitney then decided to watch part of a video together, as Mattie appeared to be getting tired. While they were doing this I was able to unpack all the shopping. We also had a visit from JJ (our resident Jack Russell Terrier). JJ was dressed in his yellow rain jacket and looked adorable!
We want to thank the McSlarrow family for a very generous dinner tonight from Papa Razzi. It was delicious and Papa Razzi always reminds Peter and I of our days living in Boston. It was one of our favorite restaurants. Mattie was hungry tonight but felt nauseous. Fortunately, we had some Kytril that we gave him through his IV. About 3o minutes later, Mattie ate up a storm!
I am happy to report that Mattie's walk website is almost complete and we will post the link maybe as early as tomorrow. Mattie's osteosarcoma walk will be held on May 9th, at his school, St. Stephen's/St. Agnes School in Alexandria, VA. Peter and I are very grateful to Liz Chiaramonte for chairing this huge endeavor, and for Ann Henshaw and Alison McSlarrow for their tireless efforts to make this walk a success. We know there are a ton of other dedicated people helping to make this a special day, and we hope you know we are indebted to all of you.
I would like to share a message from my friend Charlie. Charlie wrote, "Tuesday seemed to be a day of gifts, of time, of thoughtful items, of caring and of love. While a giant bug might not be most people's idea of an ideal gift, it certainly fit the bill for Mattie. How lovely of Meg to bring this all the way from Georgia for Mattie to brighten his day. Junko brought the gifts of attention, caring and love as well as food (always important) and physical contact. A caring touch can do so much to relax and connect two people; Vicki, this also reflects your ability to connect with and relax Mattie with head and/or back rubbing when he cannot sleep While physical communication is usually pretty clear, verbal communication is often off target. Communication is such a strange thing; often we think we've made ourselves clear only to find that the other person has gotten an entirely wrong idea. This is what we have with Mattie; everyone assumed he understood the goal was to get back what he had--the freedom to walk and run without any equipment (wheelchair, walker, brace) but he somehow did not get that message. Reminds us all how critical it is to keep checking to make sure that the person we are trying to reassure understands what we are saying. Sometimes we want so badly to pass information along that we forget to check and see if the person we are talking to understands and really hears us. A good lesson to keep in mind whether you are talking with friends, family, patients or others."
I end tonight's posting with a story entitled, Clay Balls!
A man was exploring caves by the Seashore. In one of the caves he found a canvas bag with a bunch of hardened clay balls. It was like someone had rolled clay balls and left them out in the sun to bake. They didn't look like much, but they intrigued the man, so he took the bag out of the cave with him. As he strolled along the beach, he would throw the clay balls one at a time out into the ocean as far as he could. He thought little about it, until he dropped one of the clay balls and it cracked open on a rock. Inside was a beautiful, precious stone! Excited, the man started breaking open the remaining clay balls. Each contained a similar treasure. He found thousands of dollars worth of jewels in the 20 or so clay balls he had left. Then it struck him. He had been on the beach a long time. He had thrown maybe 50 or 60 of the clay balls with their hidden treasure into the ocean waves. Instead of thousands of dollars in treasure, he could have taken home tens of thousands, but he had just thrown it away! It's like that with people. We look at someone, maybe even ourselves, and we see the external clay vessel. It doesn't look like much from the outside. It isn't always beautiful or sparkling, so we discount it. We see that person as less important than someone more beautiful or stylish or well known or wealthy. But we have not taken the time to find the treasure hidden inside that person. There is a treasure in each and every one of us. If we take the time to get to know that person, and if we ask God to show us that person the way He sees them, then the clay begins to peel away and the brilliant gem begins to shine forth. May we not come to the end of our lives and find out that we have thrown away a fortune in friendships because the gems were hidden in bits of clay. May we see the people in our world as God sees them. I am so blessed by the gems of friendship I have with you.