Tuesday, August 25, 2009

Tuesday, August 25, 2009

The Mattie creation that I am posting tonight was created at the Lombardi Clinic for me. Clearly you can imagine when I received this, I was very touched by Mattie's illustration of love. This little canvas means a lot to me, and sits in our dining room.

Quote of the day: "The feeling of sleepiness when you are not in bed, and can't get there, is the meanest feeling in the world." ~ Edgar Watson Howe

Mattie had a VERY hard time going to sleep last night. In fact, he and I were watching a Scooby Doo movie, but then he fell asleep. Within minutes he woke up after I shut the video off. He was so upset that I shut it off, that he demanded we turn it back on, and watch it from the beginning. So needless to say, we did not go to sleep until 2am!

Mattie continues to be in a Daddy phase, and needs Peter's attention 100% of the time. There are times I feel as if Mattie is shutting me out during the day, but I go with whatever he needs. None the less, I imagine Peter is tired and played out. Because Mattie is hard on Peter by day, I take over the nights. However, the lack of sleep at night, and being up all day, has continued to take its toll on me. Mattie continues to sleep talk and have nightmares. However, last night, I slept on the edge of his twin mattress, and I am happy to report at least one of us had a more peaceful night of sleep.

This is the third day in a row that Mattie did not need oxygen. That is wonderful, but he is very edgy, anxious, and continues to vomit whatever he attempts to consume. Our major problem is that he does not like having his medications pushed through his central line either. He claims that he can taste them as they are being pushed and they make him nauseous. Especially the saline flushes which we must use before and after the administration of all central line medications. I wrote to Dr. Synder, Mattie's oncologist, today and told her of my concern for the oral administration of VP-16. I honestly can't imagine Mattie taking this, but I am trying to keep an open mind. None the less, I have to face facts. Mattie continues to vomit, and can't even hold down water. If it weren't for his 16 hour infusions of TPN, an IV supplement, I am not sure how his body would survive! I continued to grow more concerned about Mattie's upcoming CT scan on Thursday. He was scheduled to go through the procedure without sedation, but yesterday I e-mailed Linda and told her I don't think Mattie can make it without sedation. Mattie is way too anxious, so anxious, that he doesn't like to be touched even by Peter and I. I am unable to remove the old Fentanyl pain patches from his back, or even change his central line dressing. So Debbi (our sedation angel) is going to sedate Mattie on Thursday for the CT scan, and we will also remove all patches and change his dressing then. Dr. Synder feels that the CT scan will give us a better idea regarding Mattie's stomach pains, and a chance to see if the Cyberknife had any impact on the large 2cm tumor in the pleural cavity, behind the rib cage.

We want to thank the Putnam family for a very generous and tasty lunch! Thank you Grace for the wonderful fruits! I also loved the hydrangea plant. Thank you for bringing a green friend back into my life.

This afternoon, Peter and my parents stayed with Mattie and played with him. But Mattie really wasn't in a playing mood. He spent the majority of the day on the couch watching videos. That may not sound unusual to some of you, but for Mattie this is VERY unusual. Mattie was the kind of child who never sat still. He was always busy doing things, and never had the time or patience to sit still for hours on end to watch TV or videos. So when he lies in one place for hours, this is a major indicator to me of the extent of his disease. Because Mattie was at peace, and had three very attentive adults surrounding him, and another one of the way (my lifetime friend, Karen arrived this afternoon), I felt that I could leave the house and visit Ann's parents.

I have debated back and forth today, whether to tell my readers that I visited Ann's parents this afternoon. I can imagine that when you hear I am visiting Ann's parents several things may come to mind. First, perhaps you are thinking that I have ample time on my hands, that I can leave each afternoon this week while Ann is away, or maybe that I am not completely invested into Mattie's care right now. I assure you neither are the case at all. Second, you may be asking why do I have time for Ann's parents, yet have shut out many of my loving friends in my life? Third, perhaps I am giving you the idea that I wish to be viewed as some sort of special person, who can care for my terminal son, and also visit Ann's parents at the same time. Again, this would be VERY far from the reality of the situation. This is not who I am as a person. I do NOT do things because I want to be viewed as "special" in other people's eyes. I do things because in my mind and heart this is the right thing to do. Because these questions have been rolling around in my mind today, I was tempted not to share my visit to Ann's parents with my readers, in fear of how these visits may be interpreted. However, as I kept reflecting on these questions today, I felt that I would be disingenuous to myself and to the nature of the blog, if I did not report out how I spent my day. Yes this is Mattie's blog, but it is also a blog that paints a picture on how cancer impacts an entire family. So part of my day included a visit to Ann's parents. I feel very, very upset about Mattie's pending death, and I refuse to do anything social or anything that is perceived as fun for myself right now. I can rationalize leaving the house to visit Ann's parents, because this is helping other people who need the support, and this gives me a chance to have a much needed respite outside my daily hell. But the simple fact of the matter is that cancer has transformed my life, and while transforming my life, it has transformed my friendship with Ann. Ann has done more for my family this year, than I could even list or imagine. She did not get titled my angel of Hope for no reason. So when she is out of town, I am compelled to do something, anything, that will show her how I feel about all the loving things she has done for us all year long. I am sure some of you are reading this, and are saying, YES Vicki, we know this already and it is okay, but I felt the need to spell it out in case there was any doubt. Visiting Ann's parents is about friendship pure and simple, and it is not about having free time, getting distracted from Mattie's care, shutting out my other friends, or wanting to look important.

While I was visiting Mary and Sully (Ann's parents), the assisted living facility's fire alarm went off. I am clearly not ill or frail, but I can tell you the sound of the alarms and the PA system were down right frightening. I could tell Ann's dad, who is bed ridden at the moment, was getting most upset by this sound, and as this continued on, I wanted to go downstairs and strangle who ever created this policy to let the alarm continue ringing until the fire department responded. Between caring for Mattie and observing the care Mary and Sully receive, it just makes me feel very vulnerable. Whenever you have to rely on a stranger to help you go to the bathroom, get showered, and take off and put your clothes on, it is humbling. In a way, all of these things are a violation of one's personal freedoms, yet when sick or impaired, you are left with no other options. No matter how often I have seen these freedoms taken away from older adults, I still continue to feel upset. I guess that is a good thing, and when I become complacent and indifferent to these violations of freedoms for older adults, then I should be concerned.

When I arrived home, Mattie was still sitting on the couch. He did play the Captain Mattie game for a bit with my parents, Peter, and Karen. Karen was given a name in this play scene, but for the life of me, I can't remember it. However, I was determined to get Mattie outside today. He hasn't left the house in four days. So we all encouraged him to ride Speedy Red. Which he did. He went outside, but you could see his heart wasn't into it this evening. I did capture some photos of his ride.

Left: JJ (our resident Jack Russell Terrier) checking out Mattie in Speedy Red!

Right: Mattie behind the wheel of Speedy Red!

We want to thank the Ferguson's for a wonderful dinner. Ann, your brownies are incredible, and enabling me to write tonight's blog. Mattie hasn't opened up the gift you sent him yet, but I so appreciate your thoughtfulness and continued support. The flowers are beautiful! Thank you! Karen and I ate dinner together tonight and chatted, and then I relieved Peter, and he sat with Karen and had dinner. Karen did double duty tonight, and though she is my friend, Peter and Karen get along very well, and I am happy she can serve as his friend now, through this very heart breaking time.

I would like to end tonight's posting with two message. The first message is from my friend, Charlie. Charlie wrote, "Thank you for this lovely idea of sharing Mattie's creations with us. They are beautiful and life affirming and they tell me that in a hundred different ways, Mattie's presence will continue in people's hearts and minds. I am so sorry that Mattie continues to have problems sleeping and eating/drinking. How awful and exhausting for all of you. Since these are the things that normally help our bodies build strength, it is so difficult to see these denied to Mattie. I am glad Mattie found the strength to play with Peter and your parents; it is good that he is still able to be a child (in some ways) in spite of the disease. I will pray for Mattie to find relief from pain and to be able to take the medication that is planned for later this week. I will also pass this information along to the many who have joined me in praying daily for Mattie."

The second message is from a fellow RCC parent and friend. Grace wrote, "I also wanted to let you know how much we all are thinking of you daily in prayer and thought. When news broke that Mattie's cancer was no longer treatable, I can't begin to tell you how many people said that they spent the entire day crying. Please know that we are going through this with you now and always will be. I've been meaning to tell you that when we were at the prayer service there was a time when we stopped in silence to pray and reflect. People were quietly sobbing and then a huge, thunderous roar of rain, one of the loudest downpours I've ever heard, came pelting down on the roof. It was as if God was crying along with us. It was such a powerful, symbolic moment."