Each time Mattie undergoes Chemo, we have a little bit of a different experience. Clearly this round of Methotrexate is wiping him out. He could bearly get up this morning. I coaxed him up at 10am, but he was groggy. He was greeted by Judith, the director of religious education, from Holy Trinity church in Georgetown. Judith came to spend time with Mattie and read a book with him. Mattie however, wasn't in the best of moods, and instead decided to burrow himself in my lap. He kept saying he was nauseous too. He seemed to perk up with the idea of moving into the childlife playroom. So Judith, myself, and Denise (Mattie's social worker) traveled the hallway to the playroom. In the playroom, Mattie tried to figure out what he wanted to do. He picked up a few cars and a train from Linda's toy pile and went back to the table to listen to Judith's story. But Mattie was just not into this today. Around this time, Ann walked into the room. Ann brought with her a bag to tricks (well not real tricks, but you know what I mean). It was the cutiest little pumpkin bag, filled will mini science experiments and other halloween things such as a spooky necklace and mask. The experiments caught everyones' attention in the room! For example, I will tell you about the 'Mystical Tree' experiment that Mattie performed today. Mattie got to assemble a cute tree made out of paper. He inserted the paper tree into a plastic stand and then placed "special" water in the bottom of the stand. The water seeped into the paper through osmosis, and reached the top branches of the tree. As the water began to evaporate from the soaked paper, it left behind a beautiful yellow crystal blossom (illustrating the crystallization process). We had our own home grown science class taking place in the childlife playroom. Ann's experiments changed the whole tone of the room, because before these activities, I felt tension in the room, and I wasn't sure which direction Mattie's mood was going to turn. It was nice that Judith had the opportunity to see Mattie more at ease, because so far each time she has seen him, he has not been himself. I have tried to unpack why this is happening with Judith, who is a lovely lady, who has also had cancer touch her own family's life. Of course as a parent I feel embarrassed by Mattie's behavior, especially since Judith is here to help support Mattie. However, Denise commented to me that she has never seen Mattie react this way before to someone, which made me take a step back to further analyze what was happening. Most of Mattie's visitors are folks Mattie knew prior to being sick, and I feel this has a lot to do with how he reacts to Judith now. Judith is very patient and understanding, and we are working on ways for her to get to know Mattie better, so that he is comfortable working with her. Below you will see a picture of the 'Mystical Tree' and a glow in the dark witch that Mattie worked hard to retrieve.
It is moments like today where I realize that Mattie is affected by all of this emotionally. Of course this is understandable, and in many ways it is the emotional and psychological ramifications that are as or more daunting than the physical implications of cancer. As we have survived the past 10 weeks of treatment, I see they do not come without there own battle wounds. One of the direct consequences I see is a level of moodiness or grumpiness in Mattie's behavior. Mind you I feel that all of this is very natural, because who on earth wouldn't feel this way from being pumped up with toxic chemicals, medicines, being poked and proded at all hours of the day and so forth? Though understandable, it is hard to see your child being transformed before your eyes and realize some of this is inevitable and uncontrollable. That doesn't mean I am going to allow Mattie to fall into a pit of despair, but I am simply saying these are my observations, and as we head into surgery, I feel I am going to need to keep a close eye on his feelings and reactions.Ann played with Mattie for over an hour today, while my mom and I went to get some hot tea. It was around noon, and I still hadn't eaten breakfast. Ann, thank you, I rarely get a moment to have a meaningful conversation with anyone these days. My mom and I enjoyed this special time together sitting outside! While I was gone, Ann and Mattie transformed the childlife playroom to an archeological dig. They unearthed the toy bones of a triceratops and assembled the model. See the picture below. Thanks Susan S. for this great activity! Thanks Ann today for your visit. Sometimes I wonder where I would be without you?!
After about an hour, 
I did get a call from Ann and she said that Mattie wanted me to come back to his room. I got back into the room, and pretty soon there after he began vomiting. He vomited for an hour, and then literally at 2:30pm fell asleep. Mattie did not awake until 6pm. Mattie was going to have a playdate today with Sam G. from RCC, and then later with Kazu from SSSAS. But neither playdate happened. Part of me wanted to wake Mattie up because who knows if he will sleep at all tonight, but on the other hand, sleeping seems to be the only magical way to fight off the nausea. Mind you he fell asleep on his own without any help of medication. Mattie did wake up and was in a good mood, and literally ate for three people. Three bowls of spaghetti, a bowl of Scooby Doo mac and cheese, a hot dog (thank you Junko!), chips, and apple pie (thanks Karen K.). Wow! I wasn't expecting this based on how Mattie was feeling this afternoon. Karen, thank you for baking us another special pie! It was enjoyed by all.
I did get a call from Ann and she said that Mattie wanted me to come back to his room. I got back into the room, and pretty soon there after he began vomiting. He vomited for an hour, and then literally at 2:30pm fell asleep. Mattie did not awake until 6pm. Mattie was going to have a playdate today with Sam G. from RCC, and then later with Kazu from SSSAS. But neither playdate happened. Part of me wanted to wake Mattie up because who knows if he will sleep at all tonight, but on the other hand, sleeping seems to be the only magical way to fight off the nausea. Mind you he fell asleep on his own without any help of medication. Mattie did wake up and was in a good mood, and literally ate for three people. Three bowls of spaghetti, a bowl of Scooby Doo mac and cheese, a hot dog (thank you Junko!), chips, and apple pie (thanks Karen K.). Wow! I wasn't expecting this based on how Mattie was feeling this afternoon. Karen, thank you for baking us another special pie! It was enjoyed by all.Tomorrow, Peter and I have a meeting with Mattie's oncologist and surgeon at 8:30am. We have a lot of questions pending about Mattie's surgery and feel it is important to have an understanding about expectations so that we can help Mattie through the next step of his journey. Later this afternoon, we had a visit from Junko and Kazu Ferris. Thank you Junko for dinner tonight. We loved the soup. I never thought of adding lemon juice to chicken soup, but it was delicious. We enjoyed everything, and Mattie ate very well tonight! Mattie also loved all the wonderful Halloween treats you brought (we love the Mattie Halloween t-shirt!). Mattie is going to have a great time decorating his room and celebrating with others on the floor. We want to thank Mrs. Donna Ryan (SSSAS Kindergarten teacher) for the wonderful signed copy of "Tough Boris" by Mem Fox. This will be a book we will cherish. A special thank you also to Ms. Leslie Williams (Mattie's Kindergarten teacher) and Mrs. Donna Ryan for the Steps to Literacy books. We will both get a lot of pleasure out of reading these together. It reminds me of our days at SSSAS, with our weekly homework. How I miss those days! Thank you Ms. D. (SSSAS school counselor) for the great Halloween musical card. You always find the best cards.
I want to share two e-mails I received today. One is from my friend Susan S. and another one is from my colleague, Susan H. Thank you both for such thoughtful e-mails!
Susan S. wrote, "Although our time together last night was short, I really enjoyed seeing you and Mattie. I love watching your patience with him when I know that you have to feel like a ping pong ball bouncing all over the place with shattered nerves. What really impressed me was despite everything you continue to stick to your parental guns. While it seems it would be easier to let Mattie behave however he wants, you continue to keep his behavior on track. That has got to be one of the reasons why he is so well liked by everyone. He's such a well adjusted little kid. You should be proud of both him and yourself."
Susan H. wrote, "I hope you're starting to feel better. I just wanted you to know that I start my day EVERY morning with reading your blog. What a tremendous service you are doing by writing your experiences and emotions. Some of the experiences you have had with the healthcare system are tragic and unnecessary, and I feel sad each time one of those events is written about. But on a brighter note, what a wonderful example of a MOM you are. Mattie couldn't be blessed with anyone better. Do you remember a conversation we had over a year ago when I discussed with you the story I tell patients about the oxygen on an airplane, and that you need to put the mask on yourself first (just like the flight attendant says) before helping anyone else? Please remember to give yourself the "good stuff" so you can continue to give the good stuff to Mattie also. The other airplane analogy that you may remember was when there's turbulence, it just means the angels are so excited to accompany us on our trip that they keep bumping the bottom of the plane, thus the turbulence. So keep breathing, dear friend, and know that there are many people out there cheerleading for you and your family that don't necessarily stay in daily contact. Stay well, Vicki, and know that you are truly making a difference not only in Mattie's life, but in many other lives as well as you educate us about family life when cancer occurs."
On the electronic front, I want to thank Allen, JJ (our special Jack Russell Terrier), and Barbsie for your lovely e-mails, and Kim, Karen, and Emily W. for your great e-cards. Also a special thank you goes out to Caroline Croze (from 1F at SSSAS). We received the tasty cookies you baked for us in the mail. What a wonderful treat. It was so nice of you to think of Mattie!
As we head into wednesday, Linda and I plan on working with Mattie to start explaining monday's surgery and try to answer whatever questions he has. Linda has given me a lot of information to read on pain, and all of the literature indicates the importance of explaining to a child what he will be feeling post-surgery. Sugar coating the pending pain to a child isn't effective. So we will find the right balance hopefully as we prepare Mattie. As I mentioned in last night's blog, the hospital is a buzz about Mattie's surgery. In fact three managers on the floor talked to me today. They plan on assigning us both a PICU and a HEM/ONC nurse next week, because they know how fond I am of the HEM/ONC nurses, and probably could use all the support we can get. I had a lovely conversation today with Dr. Synder. A doctor who really gets how scared we are, and how intimidating this whole process is. A rather refreshing attitude from a medical doctor! Wish us luck tomorrow as we attempt to explain the unexplainable to a six year old child.
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