Quote of the day:
Charlie wrote, " So often it seems that the way a day goes depends on small things. How Mattie feels when he wakes up, which nurse is on duty, does the IV run well? We so easily forget that our lives are made up of all small things, and important moments. On such does one's life turn and one's feelings about the day evolve. I was thrilled to hear that Wednesday was a better day; again, the return of someone who understands Mattie's point of view makes a world of difference as to how the day ultimately goes. I could feel your relief that you were able to leave the room for a few minutes to get something done--such a small thing/short time but what a difference it makes in how you feel."
Mattie had a rough wednesday night. He was quite sick to his stomach. He never vomitted, but he was writhing in pain. He just couldn't get comfortable and he did not want us bringing food of any kind into the room. Hindsight is 20 20, because I later realized that Mattie needed to have Vistaril (an antihistamine) on board prior to the administration of the chemo. In December 2008, Mattie was first administered ifosfamide and etoposide, and during that time he was given kytril and dexamethazone as anti-emetics. However, he can not use dexamethazone now because he is taking the experimental drug, MTP-PE. Apparently dexamethazone, which is a steroid, will inhibit MTP-PE's effectiveness. So in many ways, we are in uncharted territory this time with how to manage Mattie's nausea. So last night, we had to use break through anti-emetics such as ativan. Well this some how hyped up Mattie for several hours (doing the opposite of what it was intended to do), and finally he fell asleep after 1am. He slept so soundly, that he went to the bathroom on himself twice during the night. So Peter and I got very little sleep, mainly because we had to change Mattie and his linens. I have learned my lesson enough to know that chemo is excreted in urine and that you don't want to be sitting in this stuff. How I functioned today is beyond me, and hats off to Peter, because I could not have put in a full day of work which requires a lot of mental energy.
Tricia was Mattie's nurse today. As always Tricia starts my day off with hot tea. It is just such a lovely gesture, because when I am with Tricia, I feel like she is caring for Mattie and myself. She is a mom, and she gets how hard this must be on a fellow mom. I have seen Tricia advocate for my family many a time, and you do not forget moments like this when you are too tired to fight yourself, and someone else steps in for you! She did this for us today again. Tricia told Peter tonight that the HEM/ONC resident came up to her and told her that I looked terrible today. Nice, no?! I guess she was asking why I looked this bad? She then asked Tricia if I was a single mom. You got to love this line of reasoning. So much for sensitivity, so much for trying to understand what a family is going through. Tricia did not let her get away with any of these comments. Tricia explained to the resident that I am a dedicated mom, and that Peter is an incredible dad who works by day and spends every night at the hospital. I don't think the resident had much to say afterwards. Part of me gets annoyed by such comments because I would like to have higher expectations for those working in the medical field, however, the other part of me feels like such comments inspire me on my mission and quest to educate the medical community to the psychological and emotional worlds of families dealing with cancer.
My morning started off on a different note than usual. There was a knock at my door, and the floor administrator told me that the Hospital chef wanted to talk with me. At first I thought she was kidding, but I walked outside Mattie's room, and there was Mark Hinkle dressed all in white with his chef's hat on. Mark was accompanied by Carmen. Carmen is a sweet woman who serves Mattie all his meals. She is very aware of the fact that Mattie eats nothing, but that it is important for him to eat. Well Carmen told Mark about Mattie, and he made it his business to introduce himself to me. He says he will make Mattie whatever he would like to eat, and in fact today, he delivered shakes at lunch and at dinner. He says he is using Mattie as is pilot test case. If Mattie likes the shakes, then he may introduce this to the other children on the unit. I tried to break it to Mark, that no matter what he cooks Mattie won't eat it. It is a control issue, and he has decided that NO hospital food will be consumed. So Mark has his work cut out for him.
Mattie slept in this morning, and while he was sleeping I bounced in and out of his room a couple of times to do laundry. We had a ton to do considering last night's incidents. Each time I left the room, I whispered in Mattie's ears where I was going. Always checking if he had to go to the bathroom before I left. Because he has a tendency to hold it, and then when he has to go, it is an emergency. When Mattie woke up, he was excited to work on my computer and to show me the work he did with Mary yesterday. He enjoyed his time with Mary and in his head he thought she was coming back again today. High compliments. In any case, he showed me his clipart creations, and even designed a few more things. While he was creating, I fed him an entire banana. But that is all he ate for most of the day. Then he complained that his stomach hurt him, and he is refusing all his oral supplements that he needs to take daily (such as calicium, phosophorus, and meds to prevent mouth sores which are a common side effect from chemo). Mattie quickly decided he wanted to head to the playroom.
In the playroom, Mattie met up with Linda and Meg. Mattie was also visited by Sally, the story lady. Sally was dressed in African garb today and looked lovely. She read Mattie an African American children's story and Mattie even got to play the drums during parts of the story. He loved the story so much, Sally read it three times to him. Sally gave Mattie his own hand drum, that he gets to decorate. I snapped a picture of Mattie and Sally having fun. I loved the message in the story, because basically it was telling children about the importance of following your passion, and when you do, you will be happy and this happiness spreads to others around you.
Mattie spent a good chuck of the morning with Linda digging through clay to reveal wonderful rocks such as rose quartz, agate, and amethyst.Mattie was very proud of what he was able to excavate and he matched up what he dug out to the pictures of the rocks in the booklet. You can see the little scientist hard at work.
We want to thank the Cooper family for a lovely lunch today. I have to say, chocolate mixed with raspberries got me to smile today, and that is hard to do, since I am wiped out. I had the opportunity to meet with Christine today when she dropped off lunch. I actually jumped in her car to chat with her, and a part of me wanted to say to her, "step on the gas peddle and let's get out of here."
Mattie and I spent the afternoon building an airplane hangar out of a cardboard box in the childlife room. We had a good time doing this, and he was proud to show me that he could use a hot glue gun independently. His hangar turned out to be beautiful. What do you think?
Mattie headed back to his room unwillingly at 2pm. He had his second administration of MTP-PE for the week. He handled that well. While doing this, we watched the movie, "Space Buddies" again. However, he was getting restless and wanted to leave the room. But he is not allowed off the unit when having chemo. In addition, with MTP-PE, followed by etoposide, Mattie's blood pressure has to be monitored every 15 minutes for two hours. So literally he is tied to a blood pressure cuff. No easy task! Fortunately, Anna, Mattie's PT, showed up when Mattie was at his wits end. Anna did bowling with Mattie in our tiny room, and we even did a conga line from his room to outside his doorway. Meg, myself, and Anna played along with Mattie, and Anna got the idea of getting out a whoopie cushion and putting it on the floor for Mattie to walk toward. Believe me, nothing motivates a six year old boy more than the thought that he can make bathroom sounds and humor. He literally did speed walking to the whoopie cushion. Anna is very clever in the activities she proposes to Mattie, and I would say that he now has a good rapport with Anna, and she has been invited inside the inner circle.
Tonight, when Peter arrived, he found Mattie building on the floor in his room, and Ifosfamide was being administered to Mattie. Peter arrived at the hospital a little bit earlier, so that I could hop on a two hour long board conference call. I am not sure how I can compartmentalize my life and function (yet Peter does this every day!), but some how I managed. I continue to find it fascinating how people I work with skirt around Mattie's condition and our battle with cancer. As if the topic is too taboo or one doesn't know what to say, and therefore saying nothing is safer. But I can assure you, that saying nothing in many cases is far more painful than perhaps saying something that you think will sound stupid. When people do not address this issue with me, an issue that has become my life, I do get upset. But then, like any good counselor, I step back, assess how the issue makes others feel and then understand where the silence is coming from.
While I was on the board call, Peter text messaged me to let me know that Mattie was vomiting. Through texting we both decided to administer him Ativan. Another drug I am not wild about. It literally makes Mattie hyper. So do I want a hyper kid tonight or a kid that is vomiting? Hard to tell, I hope we made the right decision. At the moment, I am sitting in a quiet place that Linda found for me, so I could make a conference call and write tonight's blog. Escaping from the PICU for several hours has been wonderful.
As we head into friday, Mattie has one more day of receiving Etoposide and Ifosfamide. He most likely will receive hydration and the bladder rescue drug, Mesna, on saturday, and then hopefully be released later in the day on saturday. I wish for a better night tonight, but since Mattie is already vomiting this doesn't look promising.
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