Quote of the day:
"Every time you opt in to kindness, Make one connection, used to divide us, It echoes all over the world." ~ Dar Williams
Between being tired and hit with daylight savings time, none of us could get up this morning! Mattie woke up in a good mood though and was excited to visit his good friend, Campbell. Mattie was eager to get dressed and ready. He decided before he left the house that he wanted to bring a huge rubber snake with him, because he wanted Campbell to see it.
Mattie and Campbell had a good time together. They played inside and outside, and we all had the chance to enjoy being outdoors for a change. It was 70 degrees today in Washington, DC, and it definitely felt like spring. The boys had a good time playing with nerf (which is like soft foam) shooters, and they used Peter, Campbell's dad, and Campbell's older brother as targets. They had a great time doing this, and Mattie and Campbell would periodically jump into a wagon and asked to be pushed. As if the wagon was a tank or escape unit. Campbell and Mattie also played with a sand table and their favorite, legos. They had a busy afternoon with each other, and then even got to enjoy a BBQ. Though we periodically played with the boys, Campbell's parents and Peter and I had a chance to catch up with one another. It was nice to be able to visit with friends, have a nice home cooked meal, sit outdoors, and have a few laughs. Thanks Christine and James for this lovely invitation today!
After we left Campbell's house, we quickly stopped at the grocery store to stock up on Mattie's favorite things: cheese and yogurt! When we got home Mattie was still in the BBQ spirit and wanted a hotdog. So we happily accomodated his food request! While I am writing this blog, Mattie and Peter are playing together and making more bugs in the Creepy Crawler oven that Tanja brought over on saturday. Mattie loves to scare me with these bug creations, so he is busy at work!
As we head into monday, Mattie heads back to the clinic for a check up and a MTP-PE infusion. Mattie and I land up staying in the clinic four to six hours for this process. It is an odd thing to say, but being at the hospital now is almost like going home for Mattie and I. Not because I like the hospital per se, but our social network and support community is now there. Specifically I am referring to Mattie's nurses, and of course Linda, Jenny, Jessie, Denise, and Anna. In fact, today I started to wonder how are we going to go from having intensive hospital stays (practically every week), to no hospital stays? How does one deal with cancer, go through such a life altering experience, live to tell about it, and yet integrate these experiences back into one's everyday world/life? I honesty don't know! But I do know, I am not the same person who entered Georgetown Hospital in August. My priorities, worries, stresses, and outlook for the future are much different. I am not sure if I am describing this feeling clearly enough, but I guess I understand that each stage of Mattie's treatment is a huge change and adjustment. In a way being in the hospital means we are aggressively fighting the cancer, when the chemo stops in May, then what happens? Not a question that has an answer, and as Mattie's doctor tells me from time to time.... he doesn't have a crystal ball. Of course he doesn't, if he did, perhaps we could have prevented Mattie experiencing cancer altogether. But the not knowing what the future holds is frightening, and not having our day to day support team with us as we explore the unknown is also a daunting prospect.
Back to the present though. Mattie is currently on kytril to help with his nausea, GCSF (which is a white blood cell growth factor), and of course IV hydration. In fact the doctors have increased Mattie's fluid intake at night. So each night, Mattie receives 1000ml of fluid, which helps to explain why he is up every two to three hours to use the bathroom. The IV fluids were increased because Mattie entered the hospital dehydrated during his last admission.
I end tonight's blog with a message sent to me by my friend Charlie. Charlie wrote, "To me, Saturday's blog was all about connections and kindness. That which makes people go out of their way to do things that matter; to offer up their time and space to be with you. It was wonderful to read about Mattie's reconnection with Zachary and with Abigail and to see pictures of them enjoying playing together. And you are right, I wish adults would be as open and willing to accept other people's limitations and appearances as children do. I am delighted that you and Pete were able to have some time together in a social situation; we often don't realize how important that is until we are unable to do so. Your story of Mattie's self advocacy is great! It speaks volumes for his self esteem and healthy ego. Most children would not dream of challenging any adult, no matter how wrong they knew that adult to be. Clearly, Mattie's confidence in himself is returning at a good pace along with his energy level. I hope he continues down this road to emotional and physical wellness."
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