Quote of the day: "What greater thing is there for human souls than to feel that they are joined for life - to be with each other in silent unspeakable memories." ~ George Eliot
Peter stayed with Mattie last night, but before I said good night to Mattie, I hooked him up to his IV hydration. Then I went to lie down. About an hour later, I heard Mattie calling for Peter and I. Peter fell asleep downstairs, so I got to Mattie before Peter did. When I went into his room, Mattie needed help going to the bathroom, and while I was helping him, I looked up at his IV bag. It was COMPLETELY empty. Mind you 1000ml of fluid is supposed to gradually go into Mattie's body over 8 hours. However, after I set up the IV earlier in the night, I forgot to change the drip rate to the appropriate setting. So instead of getting the fluids over 8 hours, he got 1000ml in one hour. I was besides myself! So of course Mattie had to go to the bathroom! Peter came up to help me, and he calmed me down and rationalized my mistake by saying Mattie was dehydrated and he has received boluses of fluid before in the hospital. Thank goodness for Peter's logic, it made me feel better. But it speaks to the level of exhaustion I was feeling. Needless to say, I won't be making that mistake again!
Mattie had a hungry day! Thank goodness. He has been eating throughout the day! So we know he is feeling better. Peter took a picture of Mattie eating Cornflakes this morning. Mattie was impressed with the size of one of his flakes.
Today, Liza (one of Mattie's favorite volunteers from the hospital) came over to play with Mattie for four hours. When Liza arrived, Mattie was thrilled to get rid of Peter and I. In fact, he said, "you guys have to leave, good-bye." We are happy he feels so comfortable with us leaving and we are happy he gets along so well with Liza. In the Fall, Mattie did not feel secure or comfortable enough with us leaving his side for a minute, so this shows great growth. Mattie and Liza had fun playing today, and Liza tells me that Mattie just kept eating throughout the afternoon. While Mattie was with Liza, Peter and I went to Roosevelt Island for a walk and then out to lunch. We had a nice lunch together where we discussed things that need to get done for Mattie's walk. Peter and I discussed the messages we want to deliver on the day of the walk and beyond and we also decided that tonight we would finish creating and ordering Mattie's Mr. Sun cards and our Osteosarcoma Awareness stamp. Peter and I created blank photo cards that display Mattie's beautiful painted sun and we also designed our own Osteosarcoma Awarness US Postage stamp, both of which we will sell during the day of the walk. Creating these tangible products make us feel like we are contributing in some way to the walk, but more importantly to promoting the awareness of this disease on a larger scale. After a leisurely lunch (where I wasn't jumping around and therefore food going down the wrong way), we went grocery shopping to buy Mattie hot dogs. He wanted a BBQ tonight, and if this is what he wanted to eat, we were happy to meet this demand. Then we had about 30 minutes before we had to return home, so I had Peter take me to Macy's. I can't tell you what an efficient shopper I can be in 30 minutes. If there was a video tape of me shopping I am quite sure I could have qualified for an episode on a comedy show! Needless to say, four hours away from home was very helpful.
When we returned home, Mattie was having a good time with Liza. Once Liza left, Mattie wanted to go on another walk. So we walked around the block, but we did not want to go far since it was getting chilly and looked like it could rain. Peter snapped a picture of us by a beautiful azalea that is blooming near our complex.
During our walk, we discussed with Mattie the importance of him getting up and walking. He proceeded to tell us he couldn't walk. If he could, he would. So we explained to him that the cast will help make walking easier because his leg will be straighter. However, I said that he needs to strengthen his muscles, and only by exercising and walking each day will this happen. So I told him that we are going to expect him to walk at least two times a day while he is home. He did not like it, but I can see unless we push the issue and carry over what Anna is doing in the hospital, Mattie will not be walking any time soon. Peter and I bought a load of hotwheels cars today as incentives for the steps he takes. We shall see what happens. But so far, he has walked three times today! Hurray for Mattie!After our walk, Mattie and I played together for quite some time. We played with this toy alligator that Whitney brought back for him from Florida. At one point Mattie was comparing his mouth to the mouth of the alligator. It was too cute not to take a picture of!
Mattie and I played with walkie talkies too and we made up an hysterical game with them, and eventually we landed up reading books. While we were doing this, Peter completed our Mattie cards and postage stamp project. It feels good to have accomplished those things!Mattie and Peter headed outside tonight to BBQ. Peter and I have noticed that Mattie is desperately seeking ways to integrate himself back into his former life and activities. In fact, when Peter cleaned our deck yesterday, Mattie wanted to be right by his side. Certainly Peter could have finished this task in less than an hour, but he knew Mattie wanted to help, so though the project took several hours with Mattie in tow, that did not matter. Mattie felt good about himself because he was a part getting the chore done. Mattie was out there holding the hose and getting wet. We wrapped a garbage bag around his cast, he was a sight! Tonight, Mattie wanted to be outside grilling. I am happy to report that Mattie did eat his hot dog and fresh watermelon!
As Sunday is winding down, we still have a central line dressing change to perform on Mattie. One of the least favorite things I like about Sunday. I can't blame Mattie. Imagine pulling off a very sticky adhesive bandage that is covering over tubes that lead directly into your chest, it isn't pleasant. On Monday, Mattie and I head back to clinic for blood draws, vital checks, and a MTP-PE infusion. We are planning on not being admitted to the hospital, since I have been told his platelet level won't recover by Monday. I hope they are right, because I haven't packed tonight for a week's stay in the hospital.
I end tonight's posting with two messages I received today. The first one is from my friend Charlie. Charlie wrote, "Saturday, another tough day. Thank goodness for family (especially parents like you and Peter) Even when there are positive pieces sometimes the effects are not so positive. Mattie's platelet level came up but not enough to continue on schedule with chemo. This gives him a few more days away from the hospital but right now he is having difficulty finding things he wants to do because he is not feeling well and in turn, creating a lot of stress for himself and for you. Part of the problem is that while we all love each other in a family, we were not meant to be with each other 24 hours a day/7 days a week for an extended period of time. We were meant to have some separate space and events and come back together to share them. Now things are all turned around (and have been for months) and so the things which should be enjoyable are instead often stressful. I look forward to the day when Mattie returns from school to tell you about his day at dinner, all the new things he has learned, friends he's made and projects he's done. I hope that time comes soon!"
The second message is from my colleague and friend, Nancy. Nancy wrote, "Your blog always reminds me to keep humble and stay in the present, sometimes a difficult thing to accomplish. Your courage and love are so supported on such a variety of levels. Reading your words reminds us of the gift of life and not to take it for granted. I'm reminded of this paper disk that my daughter, Cindy, gave me her first semester at Binghampton: ENJOY LIFE. THIS IS NOT A DRESS REHEARSAL!! Three experiences touched me in yesterday's writing. First, the quote from Kahlil Gilbran. As a teenager, I was so taken with his work. I have found it again and find that it resonates in one's soul. I find the struggle to give greater than one gets much harder these days. Peter, Mattie, and you give so much to others and I am glad that there are so many who give of themselves as it keeps everyone going. I so worry about Peter and your health. Please continue to take care of yourselves. Second, the picture of Mattie and you on your walk is beautiful. Mattie seems to muster such strength to smile at the camera and the two of you share the same smile. Truly a sign of love! The third experience was very strong for me. When my father died, a bird sat in the tree above his grave. It was red and sat silently as the Rabbi delivered the service. I could not take my eyes off that bird. It warmed me and made me think of my Dad , all the more. I felt his presence so strongly. At the end of the service, I once again looked at the tree. The bird had gone. I believed it was my father crossing over into the light. The reason for my rambling was your comments about the Mother Dove and the egg. Dove's are such a sign of peace and hope. The fact that another one has come to be outside your window seems to reflect that too. I believe that Mattie and each of you are being given these signs as you work through the next round of decisions. Your friend, Charlie, sounds very wise and loves you so much. I concur with Charlie that you will make the decisions needed for your family. Each of life's curves are met with such information and determination. We can't know the outcome of some of our decisions and only hope that they will produce the results we hope for at times."
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