Quote of the day: "There is never enough time to do everything, but there is always enough time to do the most important thing." ~ Brian Tracy
Charlie wrote, "Time is one of the most precious possessions any of us has. I was so impressed with how a number of people stepped up to share their time with Mattie and with you. Giving time is like giving the gift of truly listening or really being in the moment with someone else; so many people do all of those halfheartedly. I think that while Mattie can't verbalize the difference between one and the other, he is certainly aware of it and he responds to people accordingly. It was wonderful to hear that he enjoyed his time at home, hopefully that will be part of an incentive to help him get through the remaining treatments."
Peter stayed with Mattie on Sunday night and said Mattie slept fairly well. But somehow Peter and I couldn't get to bed before 2am. We were trying to accomplish a lot of things before going to the hospital today but it did make it challenging to get up today. Before Peter and I went to bed, we had this profound conversation, well at least it seemed profound to us. Before Mattie developed cancer, time was very important to us but more so for Peter. So much so, that literally we collect clocks in our home. We have a cuckoo clock, a mantle clock, and a banjo clock within feet of each other! But now we both find no need to keep track of time. Many times Peter doesn't even wear a watch. Which if you knew Peter this is a major statement. It is like a baby crawling around without a diaper. I mean it can be done, but the consequences aren't pleasant. However, we both find that time is NOT measured in seconds, minutes, or hours for us anymore. Instead our time is measured in terms of activities or in terms of one chemo treatment to another. Or maybe by one Mattie mood swing to the next. I have no concept many days what month or day of the week it is. In a way it is like that feeling you get when you are on vacation (the ability to split off from the day to day reality and not worry about time and deadlines), except of course this is not a vacation, it is more like a nightmare. In a way not being able to measure our lives by time leaves us feeling like we live in a different time/place continuum. I am not sure I am explaining this well but at 1am, this seemed like a revelation to us.
I was up by 7:30am and once I got up I never stopped moving. I was packing clothes and Mattie snack foods, and cleaning and organizing things. Peter could not get to work as early as he normally does as he had to help me with things this morning and to pack Mattie and things into my car. We arrived at the clinic by 10:45am, and Mattie was greeted by Jenny and Jessie. Mattie came into the clinic in good spirits. He had his blood drawn, was examined by Dr. Synder, and then had the opportunity to do some art projects. Mattie designed eggs out of model magic, he created a house for a model magic spider, and placed Velcro pieces on the spider and the walls of the box so that the spider could climb around the house. However, the very memorable project in the clinic today was when Jenny and Jessie invited Mattie to put his hand print on a plaque that will be placed right by the elevator banks outside the PICU. The plaque will greet all visitors coming into the pediatric area. It was designed by Jenny and Jessie, and I feel it is very special that Mattie has made his personal mark on this plaque. However Mattie did not want to use his hand to make a print. So instead I offered up the idea of using "George," his left foot. The next thing I knew, his sock and shoe had come off and Mattie decided that Jessie should paint his foot with his favorite color. I did not even need to tell Jessie what color that was, she knew it was red. I snapped several pictures of this activity! It was a sight to see.
Left: Jessie is painting Mattie's left foot. Look at his smile!
Right: Jenny is holding Mattie's foot so that Jessie can paint it.
Left: Jenny is helping to stamp Mattie's foot onto the plaque.
Right: This is the plaque that Jenny and Jessie created, and the red foot print by the letter N in Georgetown is Mattie's!
Mattie headed upstairs to the PICU at around 12:30pm. Since I did not bring our things with us, I had nothing to unpack. But Mattie was greeted by Miki, his nurse. Miki helped us get started with the process. She hooked him up to an IV and then we headed off to the childlife playroom. Going to the playroom today was vital. I did not bring any toys or activities for Mattie. I had to think strategically when I came to the hospital today. I knew I could only carry a few things in addition to Mattie, such as the wheelchair (which weighs a ton), his walker, and two bags. That was more than enough to manage physically. Thankfully the playroom was open. Mattie wanted to play the game, Sorry, with me. He loves to see me lose. Fortunately I do not disappoint him. Mind you it isn't on purpose. Then Mattie was greeted by Meg and Laura, Linda's interns. Meg kept Mattie busy with hotwheels and a hotwheels ramp, while I was visited today by a former student of mine, Pam. Pam was my Team Mattie support person today. She brought us a wonderful lunch and dinner. It was so gracious and generous of her. Mattie devoured his happy meal and he loves to collect the happy meal toy, which is a stuffed animal dog from the movie, Hotel for Dogs. Pam kept me company for a while and we chatted about a whole bunch of things. It is funny how I have gone from teaching others to now these same wonderful people are supporting me. It seems like some sort of role reversal. But I am proud of my students and I am grateful for their concern and care for my family. Thank you Pam for such lovely meals!
By 3pm, Mattie was getting his MTP-PE infusion. I notice that vistaril, an antihistamine, administered through Mattie's IV simply knocks him out. Within 30 minutes of its infusion, Mattie must lie down. So Mattie took a nap this afternoon. While Mattie was napping I got a chance to check e-mails and I made a phone call to my mom. She hasn't been feeling well, so I wanted to see how she was doing. Normally I would send her an e-mail, but I bumped into Jeff Turner today. Jeff is the HEM/ONC nurse manager for the PICU. Jeff is a wonderful and compassionate person and nurse manager. He and I occasionally have an opportunity to talk and today he chatted with Pam and I. He was telling us that we should never pass up the chance to call someone, especially our moms and dads, and let them know we are thinking of them. He was telling us how much he misses his mom now, and so he inspired me to find the time today to pick up the phone. It seems like each day there is a life lesson presented to Peter and I, and we have to decide what to do with this new found information.
Mattie also had the opportunity to see Liza today, one of his favorite volunteers. Liza was busy working with a bunch of kids, but as always she made sure she connected with Mattie. I so appreciate her extra efforts. In addition, Mattie was visited by Jey, Mattie's 'big brother.' Jey and his wife just had a baby in January, so he has been gone on paternity leave. This is his first time back since the baby was born. It was wonderful to see Jey. Jey understands Mattie and unlike others who may view Mattie as mean or difficult, Jey accepts that this is a natural emotional process to fighting cancer. Wow, can we clone Jey?! All radiology techs should be so sensitive. I guess what I am trying to impress upon our readers is that walking into Georgetown for us, is like walking into a neighborhood. In six short months, I feel like I know most of the people around me, they look out for us, and try their hardest to make a difficult situation better. In a way, though I do not wish this on anyone, I do wish that everyone could experience the sensitivity and compassion that surrounds me on most days at Georgetown. I believe if our communities had this type of closeness and connections with one another, there would be fewer problems in the world. But I digress.
When Peter arrived tonight, he carried all our boxes and things up to Mattie's room and we organized the room for the week. We all had dinner together, and Mattie ate up a storm, which was wonderful to see. We all watched part of a movie together but Mattie is simply wiped out. In fact, he is sleeping now as I type the blog. Mattie completed his first one hour infusion of Etoposide (E) this afternoon, and then at 7pm, he started his four hour infusion of Ifosfamide (I). Once this infusion is done, he will receive a bladder rescue drug called Mesna. Then we repeat this whole I and E infusion process again tomorrow. I and E is administered five days in a row. There is something disconcerting about I and E. They are both clear fluids and with kytril (an anti-emetic) on board, Mattie appears to have no reactions to these drugs. So at times you can become complacent and forget almost that he is receiving chemo. Of course until you take a CT scan, ecocardiogram, and hearing test and see the ramifications of these chemo cocktails!
I am happy to report that Mattie's white central line (Mattie has a red and white lumen that comprise his central line) has now been unblocked. TPA (Tissue plasminogen activator - a protein used to break down blood clots) was used and within 30 minutes cleared up the problem.
As I sign off for the evening, I want to end with this quote sent to me by our friend, Tad. "Just as despair can come to one only from other human beings, hope, too, can be given to one only by other human beings." ~ Elie Weisel
Thanks to all of you for being our sources of HOPE when we can't find it within ourselves!
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