Quote of the day: "There is no waste in God's world. There is no soul without a mission." ~ Rabbi David Wolpe
Sunday night was harrowing. In fact, if I don't have another night like this any time soon, that will be okay by me! However, the sad part is this will be one of many for Peter and I. Mattie fell asleep at midnight. He seemed absolutely exhausted. But by 2am, the fun started. Out of a deep sleep, I could hear Mattie's breathing, which sounded very strained. So I popped up and was in a panic. I sat there and watched Mattie for several minutes, I even used the pulse oximeter to measure his oxygen concentration in his blood (which was fine). Needless to say, I was getting totally frazzled over the sounds coming from Mattie, so I woke Peter up and had him come into the room to listen. Peter felt that Mattie was dreaming, which could explain the sounds I was hearing. None the less, by that point, I was in knots. The breathing issue was bad enough, but at 4am, Mattie was running a raging fever, vomiting, and was in pain. So I made the mistake of giving him Tylenol first to try to deal with the fever, but within seconds after administering it orally, he threw it all up. So then I moved to pushing Zofran through his central line for nausea, and finally when all else failed, I gave him a bolus of IV morphine through his pain pump. It was after the IV morphine that he began to calm down. But he did not want to sleep by himself, so I jumped into his small twin sized bed, and he cuddled against me and eventually fell asleep. But I remained there the entire night since his level of anxiety is so heightened.
Mattie had a 10am clinic appointment. His vancomycin level in his blood needed to be checked. This blood level needs to be checked every other day, and each day so far the concentration of the antibiotic has been raised slightly. I imagine that a certain level of this antibiotic needs to be present in the blood in order to fight off the bacterial infection. Before heading to clinic, we administered IV Kytril to Mattie for nausea, disconnected his IV TPN (nutrient), and then put together a supply bag of IV Vancomycin and Zofran (an anti-emetic) to take in the car with us. It was necessary to take these medications with us, since they need to be administered during certain times of the day. Just trying to juggle Mattie and these IV bags is a feat unto itself.
When Mattie got to clinic, he was all business. He wanted to get in and get out quickly. He wasn't interested in playing with Jenny or Jessie today either. But then again, Peter told Mattie that after his blood draw he could go to the toy store. So I do think that was a major motivator. Mattie had a good time at the toy store, and he was VERY focused on what he wanted. Apparently he has wanted a remote controlled fire rescue boat for a while. This was news to me. In any case, Peter's mom bought this gift for Mattie today, along with several new DVDs. When we got in the car, I started to brainstorm where Mattie was going to float this boat. I immediately thought of a kiddie pool, since this is something Mattie loved doing in the past. Since our most recent pool sprung a leak, Peter was on a mission to find a replacement. It all worked out well, and from the pictures, you can see that Mattie had a good time on the deck with his new boat. In fact, you will see another remote controlled boat in the water as well. Linda gave Mattie this boat at Christmas time, and Mattie took it out today so that we could have boat races in the pool. Despite Mattie being up and playing, he clearly was NOT himself in any stretch of the imagination. He could bearly keep his eyes open, and he was highly agitated. I attribute this primarily due to pain medication. He looked like he was in a fog all day, and his way of trying to break through the fog, was to be edgy, ornery, and difficult. Though Peter and I empathize greatly with Mattie, it is very hard on us to be around this level of edginess with constant demands being made on us 24/7.
Left: Peter helping Mattie learn how to steer his new boat.
Right: Mattie and his Grandma having a boat race!
As the afternoon wore on, I made sure that Mattie was settled with Peter and Barbara (Peter's mom). I then went out for a couple of hours with Ann. Leaving Mattie for any period of time brings a certain level of guilt upon me, yet, there are times I realize I need to step out of the picture if I am going to make it through the day. Today was one of those days, because trying to function on very little sleep, is becoming harder and harder for me. While talking with Ann, I realize I am just so emotionless. I am not disconnected from my feelings, but I am not allowing myself the time or opportunity to examine those feelings now. Why? Mainly because I need to function for Mattie. Sure there are times I cry, but for the most part I choose not to go there, because this is not what Mattie needs, and I can't emotionally function and care for him, especially when his care requires energy and persistence. We of course are not fighting for his life, but we are fighting to manage pain, and to let him live his life in as much comfort and dignity as possible. To some extent this fight is MORE daunting and heart wrenching than all the surgeries and chemotherapies he has endured already. These last memories of Mattie's life will haunt me forever, and if you think the word haunt is a strong word, then I ask you to pause and think about seeing your child unable to breathe, writhing in pain, and dying a little bit before your eyes each day. If that sight doesn't haunt you, I don't know what would! I believe that Ann and Team Mattie want to help Peter and I capture the essence of Mattie before he becomes sicker. We talked about videotaping Mattie, family portraits, and other great ideas. However, I must admit that I am frozen in my reaction to all of these thoughts. Mainly because accepting any of them right now, means that Mattie is dying. I am very cognizant of what is happening, but my emotions haven't caught up yet. None the less, I had two ideas tonight about what I would like to focus upon, and will share them with Ann shortly, as I am sure she will then share them with you. One thing is very clearly to me though, I am very fortunate to have Ann in my life and the support of all of Team Mattie.
When I arrived home, Peter told me that Mattie slept for a good chunk of the time I was out. I did call Dr. Shad and discussed with her my feelings about his pain meds, and I asked her whether we could lower the dosage on his Fentanyl Patch. She thought that was a good idea to try. After I got off the phone, Peter came into the kitchen where I was, and stopped and gave me a hug. I guess I looked like I was in need of support. He told me that when he hugged me, I felt like a bundle of tension, but as the minutes wore on and he rubbed my back, I started to appear more at ease. I mention this because in the midst of all this chaos and heart break, lies a couple, whose friendship and needs have been placed on hold for over a year. Peter's hug forced me to stop and realize just what a profound loss Mattie's illness has had on our life as a whole.
We want to thank the Ferris family for a wonderfully generous lunch and desserts today. Junko, thank you for introducing me to Founding Farmers! Also Mattie loved the Sponge Bob puzzle. We assembled and disassembled it multiple times today. We also would like to thank the Wright family for a lovely home cooked dinner and all the wonderful handmade cards with lovely sentiments.
Mattie sat outside with us on the deck while we were having dinner. While we were eating, he was playing with his fire boat and the pool. Mind you, Mattie is eating NOTHING by mouth. The only thing he consumes is milk. It is a very awkward feeling to eat in front of Mattie, but we have no choice, one has to eat to maintain this pace. While we were having dinner, Mattie was visited by JJ, our resident Jack Russell Terrier. JJ brought Mattie a ball to play with, yet Mattie was edgy and wasn't sure he wanted any visitors.
After dinner, Mattie wanted to ride on Speedy Red. So Mattie and I spent about 45 minutes riding around, with two IV pumps attached to the back of the car! Have IV pumps will travel! While we were driving around together, Mattie and I had many tender conversations and, many times he paused from driving, to look into my eyes and give me a hug. I haven't told my readers this before, but Mattie and I have cute names for each other. I call him my Mooshi Moo Moo, and I am his Una Moon. Don't ask how we came up with these pet names, but tonight, Mattie asked me whether I would always love Mooshi Moo Moo. Maybe it is me, but his questions just seem simple and yet profound.
As we head into Tuesday, I asked Mattie what he would like to do. I gave him some suggestions, all involving leaving our home. Mattie has made it clear that he doesn't want to leave the house. This saddens me, and I would like to hear more about the feeling behind this demand, but for tonight, I just let that go. I let it go, because he is already anxious and clingy. Peter's mom will be with us tomorrow, and my parents are flying in from Los Angeles tomorrow evening. I am happy Mattie can be surrounded by family, but it is very clear, that Peter and I can't stray far from him as he experiences the toughest and most courageous battle toward the end.
I would like to end tonight's posting with three messages and then a music video. The first message is from my friend, Charlie. Charlie wrote, "I am not sure what Mattie's mission is but he certainly has touched me and so many others and made us far more appreciative of what we have and sensitive to those who suffer. He's also strengthened my belief that relationships are what count, they are what make us "wealthy" and that all the money in the world leaves one in poverty if you have no one to love and share with.I am grateful that Kathleen was "on point" on Sunday and was able to foresee the issue with the pump and the central line before it happened. That was great and indicative of the level of caring and concern you've seen all along from the HEM/ONC nurses. I know you are relieved to be home with Mattie and I just hope the pain subsides and he is able to relax and perhaps even eat something soon. I do agree with you about continuing the PT for as long as Mattie can do it; young bodies were made to move and if he doesn't get any exercise he will have even more difficulty relaxing to sleep or rest. There is a growing movement to do a daily prayer at 7PM; I hope you feel the warmth of our loving thoughts surround you and your family each night. I will continue to pray for pain free days for Mattie and strength for you and Peter."
The second message is from a close family friend. Kathleen wrote, "Your fellow RCC Mom said it well, but I saw what you wrote about needing our prayers more than ever, I am here, and I am praying, and asking others as well. you both could probably benefit to be taken care of yourselves for a month or more. I wish I could help, I pray for a miracle. You have more strength, courage and determination in you than anyone I have ever known. Maybe you were supposed to be a Nurse, well I guess all Mothers are aren't they, but you are showing so many people how to be strong, I wonder if you realize how you are affecting others. How Mattie, all of you are affecting so many. I want to say so many things, but they cant come out as they are attached to my heart, where I am keeping all of you in prayer and in God's light."
The final message is from my mom. My mom wrote, "I've thought about the question posed at the special prayer service for Mattie's helpers this week. What is Mattie's legacy? It is a complicated question because it can be addressed in many ways. My first impulsive response is to think of an ellipse which requires two focal points to generate its' beautiful curvaceous shape and to keep one's position on its elegant surface. All who knew and read Mattie's personal struggle against cancer were forever caught up in the path created by its two focal points: 1. Mattie, and 2. Vicki and Peter. All who have been touched by their combined focal power have been transfixed by the unfolding of Mattie's story of courage, sensitivity and maturity and have been compelled to do their part in keeping the dream alive in spite of the odds. The medical drama that placed them at the center of the action attached itself to our hearts by their aura of love, commitment, trust and compassion that they demonstrated for each other even in the most challenging of circumstances. As in all human understanding, we have transferred their example to our own lives in the process, allowing us to remain firmly on that beautiful ellipse created for us by the powerful focal points of Mattie and Vicki and Peter who together produced a series of higher ideals for us to live by through their actions over the last year. God Bless Mattie, See you tomorrow."
As many of you know, there have been times throughout the year where I have posted music videos on the blog to capture the feelings and emotions running through my mind. The pending loss of Mattie is enormously overwhelming for both Peter and myself, and when I reflect on this, Kenny Chesney's song entitled, "There Goes My Life" came to mind. Yes the context of the song is quite different from the life altering world I live in, though the words in the song ring true...."There goes my life, my future, my everything!"
http://www.youtube.com/watch?v=9MIJShOqh8Q
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