Quote of the day: "Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it's the only thing that ever has." ~ Margaret Mead
It was wonderful to sleep at home last night, even if it meant I was on the floor in Mattie's room. It was thrilling to hear no noise and to not have people coming in and out of our room throughout the night. I am always on the edge while sleeping in the hospital, because you never know who is going to walk in. I certainly trust the HEM/ONC nurses, but I have learned that others can and do walk in, and you have to have your wits about you at all times. This state of being in constant hyper alert mood, does not only make you edgy, stressed, but at times it also makes you unable to sleep.
Mattie is on IV hydration at home, so he was up a couple of times last night. But this morning, he slept so soundly he did not even realize he had to go to the bathroom, and therefore had an accident. I had done three loads of laundry at hospital to avoid having to do laundry during our two days at home. That was wishful thinking.
Mattie woke up in a good mood and has an appetite back. He ate oatmeal and pumpkin bread for breakfast, and then agreed to entertain himself so I could get dressed. When I got out of the shower, I could here things being moved around and paper flying downstairs. So I walked down the stairs, and there was Mattie opening many of the packages he received in the mail. He looked at me like the cat who swallowed the canary. His response was he was only opening the packages that were addressed to him and also made sure to keep each card with its appropriate package. You got of love him!
This afternoon, Alison came over to visit us. Alison is a SSSAS mom, a friend, and Mattie's Fund and communications coordinator. Alison went grocery shopping for me. Thank you Alison for generously providing us with the items we needed! Alison rearranged her day so she could spend a good portion of her afternoon with us. Alison brought Mattie several gifts such as jellybeans (which he loved!), marshmellow peeps, scratch art books, and his all time favorite, a wind up chicken that lays colorful eggs. Of course with Mattie's one track mind, I am sure you can already guess what Mattie thought this chicken was doing... not laying eggs, but pooping of course! He called this cute chicken, the "pooping chicken." Well Mattie and Alison built a whole play scheme around the "pooping chicken." Naturally the pooping chicken needed a buddy, so Mattie pulled out Linda's "pooping cat." Yes he still has this toy which he received from Linda in the fall. So the pooping cat and the popping chicken teamed up and went to school together. The chicken became a nurse and the cat became a doctor. Their one main problem though is that every time they went to visit patients in their hospital room, they landed up pooping in front of them, all over the hospital floor. I had the fun of playing the patient, and reacting to nurse chicken and doctor cat pooping in my room. It was a six year old boy's play at its finest. Alison really engaged Mattie today, and at several points in their play he was happy for me to walk away and have Alison to himself. This gave me the great opportunity to do laundry and to also have lunch without having to play and jump around. Thank you Alison for the gift of your time, creativity of play, and generosity today.
I introduce you to our newest friends: Pooping Chicken and Pooping Cat!!! Thank goodness our real nurses and doctors don't act like this in Mattie's room!After Alison left, Mattie decided to work on the puzzle ball he received in the mail from my college friends who live in Seattle. Thanks Dave and Marianne! This puzzle ball kept Mattie focused for several hours, and he was determined to finish it with me. A puzzle ball is literally a 3-D puzzle. It features a wonderful scene of ocean creatures on it. I took a picture of Mattie and the finished product. He was very proud of his accomplishment and couldn't wait to show it to Peter tonight!
Mattie was also excited to receive a fleece Red Sox blanket in the mail from his cousins (Nat, Sydney, and Will), and the Scooby Doo cookbook is a hit. We love the Scooby themed shaped cookie cutters and can't wait to use them. Thanks for thinking of Mattie. I too received gifts today. Thank you Charlie for the incredible box of assorted teas. They will go to good use and they will force me to take a minute for myself! I also want to thank Susan C. Susan is a former student of mine who reads Mattie's blog diligently. Susan read that I had trouble finding the time to exercise, so she thoughtfully brought the exercise to me. Thank you for the aerobic twisting stepper. This gift really intrigued Mattie too and I think if he could use it, he would. Thank you for supporting us, and for your very generous and thoughftul gift!This evening, Mattie had a JJ (our resident Jack Russell Terrier) delivery. JJ and JP (JJ's owner) brought Mattie some pasta and pizza. Mattie ate well, it was great to see. Thanks JP! We also want to thank the Dunn family for your tasty dinner. We loved the roasted chicken, and thank you for your nice note as well! Needless to say, the support of our family is greatly respected and appreciated.
Wednesday is our second day at home before we ramp up to go back to the hospital. Catherine Silver, our case manager called me today to let me know that Mattie's next CT scans and bone scans are scheduled for March 19. So I have a few weeks to stress over that. I realize I can't do anything about the results, but none the less, I need time to prepare for the results to go either way. I think I HATE (Yes I used the hate word, the word we try to teach our children not to use, but guess what? With cancer this seems like the cleanest word one can use to describe just how horrible a disease it is.) scans as much as the cancer itself. It is amazing how test results can change your life instantaneously!
I end tonight with a message I received from my friend, Charlie. Charlie wrote, "I read the blog in amazement. I knew that you were determined to continue to press to have the laboratory situation sorted out but it is hard to understand where you find the energy at this point to continue pushing the envelope of medical care. I feel very strongly that you are correct; the mission, needs and processes of PICU and HEM/ONC are very different and in some ways are polar opposites and often in conflict as a result. While the patients they care for are in the same age range, they don't have much else in common. This leads not only to the turf wars you mentioned but also to lapses in "best care practices" for one or the other of the populations. Unfortunately given the critical situations that can quickly arise for either population this can lead to some very unpleasant results. A big thank you to you and Peter for making sure that administration knows that parents/consumers, are aware of what is going on and will be watching. That is the only thing that moves them to correct a situation. I am sure that while all of this is over Mattie's head, he does find it all confusing and somewhat concerning. I think he handles this stuff better than most adults would. It is clear that his ability to adapt and adjust is due to you and the loving, supportive care that you and Pete provide for him. Thank goodness for the help provided by the special folks of the hospital staff (childlife room, ONC nurses) and all the members of the Mattie bear brigade."
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