Quote of the day: "The world is moved not only by the mighty shoves of the heroes but also by the aggregate of the tiny pushes of each honest worker." ~ Helen Keller
Mattie did very well through his second night of doxorubicin and cisplatin infusions. In fact, he experienced no nausea, and is NOT tired in the least. I gather he is doing so well, that the doctors decided to discharge him today rather than on sunday. I on the other hand, had the good fortunate of sleeping at home friday night and I did not wake up until noon today. I probably could have slept the day away, but I saw I had an e-mail from Peter who told me that Mattie was going to be released today from the hospital. This to me was a mixed blessing because the idea of packing up Mattie's room and then starting our in home routine wasn't peachy, but of course being home is always better. After our VRE scare, I have also learned that being in the hospital is dangerous for a child who is immunocompromised, so if you don't have to be there, then you really do want to get out!
Mattie had a busy social calendar today. At noon, Caroline Eaton, a third grader teacher at SSSAS and Mattie's piano teacher, came for a visit. Mattie started the day off in a funk, and unfortunately Caroline had the pleasure of experiencing this. But this is something Caroline has had to work through before with Mattie, and she understands where Mattie is coming from. Thankfully! They did play some songs together and I appreciate Caroline's sensitivity and energy with Mattie. Thank you Caroline for the pumpkin bread you brought today! He liked the bread you brought last week so much, that he has been eating his way through pumpkin products all week!
Later this afternoon, Mattie's good buddy Zachary (who Mattie met at RCC, his preschool) and Zachary's dad, Russ, came to the hospital and spent three hours playing with Mattie. Mattie had a great time seeing Zachary and together building a Star Wars lego set. Thank you Zachary for the legos and great lego pen. We snapped some pictures of the boys. Mattie and Zachary continue to amaze me, because they are able to pick up where they left off with their friendship, each time they see one another. Zachary accepts Mattie regardless of how he looks or his physical limitations. There seems to be so much we adults can learn from their friendship.
Left: Mattie and Zachary working on the lego project.Right: The finished product!
Mattie was discharged from the hospital today around 6pm. Before he was discharged he had to get disconnected from his IVs. I was very impressed with Mattie. Mattie knows that nurses wear gloves whenever they touch his central lines. There is one traveling nurse at the hospital who does not wear gloves when he works with HEM/ONC children. Mind you it is Georgetown's policy that gloves must be used when ever you access a child's central line. You may recall that I blamed this individual for potentially giving Mattie VRE. I even reported this nurse to the HEM/ONC nurse manager and several other HEM/ONC nurses. But guess what? He still isn't using gloves. Well guess who called him out on it today?! Mattie! Mattie spoke right up before Peter and I had to say anything. Mattie told the nurse he had to put on gloves, and if not he was going to tell the other nurses. I said nothing! But inside I was saying, WAY TO GO MATTIE! This was an excellent sign to me, Mattie is advocating for his health care needs and safety!
Zachary and Russ walked us to our car and we said our good-byes. Mattie did not want the playdate to end, which was very sweet. When we arrived home, we got Mattie settled and we unpacked a bit. However, earlier in the day I received an e-mail from Tanja (a SSSAS mom and now our friend) who offered to watch Mattie this evening so we could go out. At first I said no. I did not want to bother Tanja, and I did not know how Mattie was going to adjust to being home. But I believe Ann and Tanja were working as a team today. They were determined to get Peter and I out of our home. After I said no to Tanja, Ann called me. She told me she had a babysitter for the evening and wanted to know if Peter and I wanted to join her and Dr. Bob for dinner. Well the social aspect of this invitation was very appealing, and this helped to turn my mood around today. So after I spoke to Ann, I contacted Tanja again, and worked out the details of her visit with Mattie. Tanja arrived at our home at 7pm, and she brought Abigail with her. Abigail is Ann's youngest daughter, who was also a classmate of Mattie's last year in kindergarten. Tanja did a heroic feat tonight. She watched Mattie and Abigail for five hours. She kept them both engaged and entertained. Tanja came with her bag of tricks and clearly Mattie had a wonderful time playing and being a six year old. I think the highlight of his evening was making bugs using a creepy crawler oven (which Mattie thought was very neat!), and wearing pretend boxing gloves. In the picture on the left, you can see Mattie and Abigail having a good time playing and clearly you can see they were busy! I think the boxing picture is adorable and also a wonderful way for Mattie to get his body moving!
Peter and I did not get home until midnight, and when we walked in the door, Mattie and Abigail were wide awake and playing away. You have to love their energy! If I could bottle it up and use it for my reserves, I would be a lucky lady. I can't thank Tanja enough for her generosity of time, energy, creativity with projects and games, and her willingness and determination to give Peter and I a night out. This was a wonderful social experience for Mattie and a real gift to us!
As for Peter and I, we had a delightful time with Ann and Bob. We headed to Old Town, Alexandria, and first walked along the Potomac River, and then had a lovely Italian dinner. While we were walking down one of the main streets in Old Town, we bumped into one of our favorite HEM/ONC nurses, Miki. It was nice to see Miki and it meant a lot to me that even when she is not working, she wears the hope necklace we gave her for Christmas.
The irony is if Ann did not invite us out tonight, we probably would not have gone, but she motivated me, and as I was out and surrounded by normalcy for a while, my migraine started to dissipate. I imagine many of our readers would conclude that Ann (our Team Mattie coordinator) and I were good friends before this year. Certainly Ann and I knew each other, we served on the RCC (Mattie's preschool) board together, and we saw each other periodically at both preschool and SSSAS events, but that was the extent of our interaction. Mattie's illness, though completely tragic, has given me the gift of Ann's friendship. Over the course of this year, I have had the unique opportunity to get to know Ann quite well. It is hard to express my deepest thanks to Ann in words, but she is a very dear person to me and what she does for me and my family each and every day, will never be forgotten. Of course, both Peter and I feel that Dr. Bob has given Mattie a second chance on life. So together Bob and Ann are quite a dynamic combination and it is my only hope that they realize how much we appreciate them.
I would have to say today was a great day for all of us, and it just illustrates how healing the power of social connections are no matter what age you are. On sunday, we have been invited over to visit the Cooper's. Campbell and Livi are good buddies of Mattie, and I am happy Mattie will have the opportunity for another positive social experience. I end tonight's blog with a message I received today from my friend Charlie. Charlie wrote, "It is pretty clear that children have far more resiliency than adults do. It is nice to hear that Mattie is up and around and doing positive things. While I am sure it does your heart and spirit good to see that, I know you also wish you could get a transfusion of some of that energy at this point. Mattie's enthusiasm and natural exuberance are a wonder to read about and must be a delight to see, especiallly since he's had some very tough times. I certainly hope that things continue in a positive direction. Once again, the blog shows that small things are as important as the large ones. Mattie's surgeon is a hero for me, but all the day to day hospital support folks (and school parents/friends) who give so much of their time, effort and love to make things go smoother are the unsung heroes and heroines of the story. Many thanks to all who continue to provide comfort, food, and time to Mattie and your family."
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