Wednesday, November 26, 2008

Wednesday, November 26, 2008



Quote of the day (Thanks Grace!): "Never give in, never give in, never; never; never; never - in nothing, great or small, large or petty - never give in except to convictions of honor and good sense." ~ Winston Churchill



We had an interesting night of sleep on tuesday. Mattie woke up screaming at 1am from a bad dream. He was screaming so loudly, I could hear it from upstairs with the bedroom door closed. Peter has been taking night duty since we got home from the hospital, but I wonder how long he can maintain this schedule while working full time? But I digress. So I jumped up at 1am, and went down to see what was the matter. Mattie awoke disoriented a bit and swore there were people around him trying to do things to him. I can only imagine who these folks are in his dreams! If this were a jeopardy category item, we would all know the question was is Mattie dreaming about doctors and nurses?!! It is always fascinating to see how the brain processes what we are dealing with in our lives while we sleep. In any case, once Mattie became more alert and realized no one else was around him except us and Patches, he went back to sleep. But at 3am, there was a major accident on Route 66 right outside our window. It is alarming to be awoken to tires skidding and then a smashing sound. In addition, the crash sent the car's horn off and it wouldn't stop. Things started to get under control on the car front once Peter called 911!


Mattie slept in this morning and did not wake up until 10am. At 10am, he wanted to get out of bed and be transferred to his chair. I got him some fresh clothes and also wanted to wash him up a bit and brush his teeth. Mattie has become very jumpy as it comes to being touched. He refuses to have a washcloth touch him, and he doesn't like the idea of a toothbrush in his mouth. I explained to him the importance of doing this, and attempted to have him direct the cleaning process. But that did not work. I know that there could be some manipulation on Mattie's part about this issue, but prior to developing cancer, Mattie always liked to be clean. The apple doesn't fall far from the tree. Now a simple touch causes panic, pain, and a lot of tears. Mattie eventually got dressed and I assisted him as he moved from the bed to the chair. But basically he is doing all the hard work now himself. He can stand and shuffles his feet.



My mom came over this morning, and we all looked at Karen's turkeys together. They are amazing works of art, and we still haven't seen all of them yet. Examining the turkeys was a great ice breaker for Mattie and he was engaged in what he was seeing until there was a knock at the door. My mom answered the door, and it was Sandra, our in home nurse. She had come back today because she needed to examine Mattie's tail bone ulcer and also wanted to put a bandage on it, since it is getting larger. Mattie took one look at Sandra and went into instantaneous panic. Mattie kept telling Sandra to get out. He was screaming, but not just your usual yelling and tantrum, this was a yelling with total fear in his eyes. It was very hard to remain calm through this 40 minute ordeal, but I did. I tried to convince Mattie for 30 minutes that Sandra just had to look at his back sore, that she wasn't going to touch it. Mattie wouldn't hear of it. He attempted to kick Sandra away. Sandra told me she couldn't leave without physically seeing the sore, despite the fact that I have pictures of the sore. I take pictures everyday for Dr. Synder. In any case, she said if he did not comply, we would have to physically pick him up from the wheelchair and put him in bed on his side so she could examine the sore. I did not want this to happen and begged Mattie to simply cooperate. But he did not. So the next minute, before he knew it Sandra and I picked him up from the chair and put him on the bed and I held him down so he could be examined. He was downright hysterical, and in a way, I felt like I was the villian, stripping him of his rights. He told us no, and yet we did it. It may sound like my interpretation is too harsh. But once this was all over, Mattie told me he hated me and couldn't trust me. He told me to stay far away from him, and I had to walk out of the apartment for a bit. When I walked out, I took Sandra with me. I told her that I would never do this again. I can't afford to be the "bad" person. Today I betrayed Mattie's trust, and I won't be put into that position again. Sandra understood, but then Sandra told me she is worried about me because Mattie's emotional outbursts are huge and hard to handle. She admitted to me, that when I told her on the phone that you have to approach Mattie a certain way, and that there would be no way she could take his bandages off, she told me she thought I was being overprotective, or in her words a "wuss." But after what she observed she commended me on my patience, and even keel. She told me I remained firm, but loving. It isn't easy to do when your child is down right hysterical and at times irrational. She told me she was going to call Mattie's doctor and recommend he be placed on anti-anxiety medication. I told her I could appreciate why she felt this way, but that I would need to think about this and I have throughout the day. Needless to say, I was worn out by 1pm. The day could have been over for us at that point, and I would have be okay with that.



After Sandra left, I came in and apologized to Mattie. I told him I could imagine that he was very upset with me, and that I assured him if he tells me he is afraid to do something in the future, I would listen to him, and that I wouldn't be helping a nurse pin him down to a bed. He absorbed everything I said, and calmed down. We both took a deep breath and then Mattie said he felt like having waffles. I couldn't deny that request, so out came the waffle maker. We had a peaceful hour or two, and then Peter came home so that I could go to the dentist. Peter walked in with two packages. One package was huge, Mattie is always intrigued with large boxes. When we opened the box out popped four helium balloons, one with Scooby Doo on it. Mattie's eyes grew larger and he just loved the balloons. The balloons were from Team Mattie. Thanks Team Mattie, you have no idea how needed these balloons were today! Thank you for welcoming us home. The second box was a beautiful fruit basket from Carla, my former clinical supervisor and now friend. Thank you Carla for the Thanksgiving day wishes.



I cancelled my dentist appointment three times already and I decided to attempt to go today. When I got to the office, I told the hygienist and the dentist what I was contending with. Through my conversation I learned about my hygienist's husband's near death experience and I also learned my dentist is dealing with bone marrow cancer. One thing I observe is once others hear our family is dealing with cancer, most people are willing to confide and share things with us that maybe they wouldn't have before. It is almost like others do not have to put up pretenses or walls anymore because we are already seeing the worst life has to offer and we don't want to be judged and therefore wouldn't judge someone else. In many cases I am seeing the depths and fullness of people like I never have before. While at the dentist office, I received a phone call from Catherine, our nurse case manager. Catherine is working on getting Mattie a better mattress at home to prevent more sores from developing. In addition, we talked about anti-anxiety medication. Catherine received a phone call from Sandra today, and Catherine and Dr. Synder wanted to know how I wanted to proceed. They know my hesitation to add any more drugs into Mattie's system. I told them I would consider anti-anxiety medication on an as needed basis, but I don't feel he has anxiety per se. His anxiety is so situational, almost like a phobia. Caused by the fear of others about to touch him or enter his space. His lack of total control over his space and environment. Frankly I think any of us would be anxious under such conditions. I remember always telling my students that under the right circumstances anyone can develop a diagnosable mental illness. I am seeing this being played out right before my eyes.



While I was at the dentist, Dan (Mattie's in home PT) came to have a session with Mattie. Mattie's initial visit with Dan did not go well, because Mattie wasn't cooperating or even listening. But Dan and Peter worked hard with Mattie today. Mattie bought into the process. Dan used a very effective reward system where Mattie got to pick out baseball cards if he successfully did something. Dan got Mattie up and walking a few steps today. He got Mattie's right arm working and his leg kicking. I am just sorry I missed it, but I fully admit there are times having Peter around versus me inspires Mattie to do certain things. PT is one of them! Dan is planning on coming back on sunday, but I am very pleased to hear of the progress they made together. Dan has me laughing, he can't get over how we know Katie P., Kristin E. (two excellent physical therapists who Dan happens to know and they are both invested in Mattie's PT recovery) and Bob Henshaw all from RCC. He keeps saying, "this must be some preschool."
I agree, it is some preschool. I am so thankful that such a place like RCC exists in the world and that we were fortunate to be a part of it for two years.


This evening Mattie had a yogurt craving. He wanted a particular kind. So I put on my coat and walked to the store to get it. When Mattie was diagnosed with cancer in August, it seems my life stopped. I am frozen in time. Even though I literally know it is November, to me we are still living in August. I mention this because when I went outside today and entered the grocery store (another thing I haven't done in ages) I heard the song, "O Christmas Tree." I was taken aback. My body is telling me it is cold outside, but my head is saying it is summer time. I then noticed Christmas lights popping up in places around our complex. I just stopped and thought where did the last three months of our lives go? This is more of a rhetorical question, because we all know the answer.



I received a lovely e-mail today from Grace (a friend and a RCC mom) that I wanted to share it with you. Grace wrote, "It must be so difficult to see Mattie struggling and frustrated. But never doubt your decisions. Between your intelligence and incredible research, you should have no doubt that you did the right thing in having Mattie undergo the four surgeries. As I said before, you haven't made a wrong move yet, and you've had many, many decisions to make along this road. That's some track record. As Lyndon Johnson said, "Yesterday is not ours to recover, but tomorrow is ours to win or lose." In other words, don't dwell on whether you made the right decisions up to this point, know that you did, and now concentrate on figuring out the best chemo concoction possible to stomp the living he_ _ out of those bugs. (I'm not one to swear either, but sometimes the situation warrants it!) And someone else once said " The best way to predict the future is to invent it." And you are doing just that. Bravo once again to the best parents on the planet. If your mind wanders back to the question of quality of life and uncertain future, think of it this way, how could you not have done the surgeries? Imagine how you would feel not giving Mattie a fighting chance? As Emma's mom so wisely noted, the fact that Mattie has the energy to be defiant is a great sign. Mattie is so strong. He is a fighter. (Try to remember that next time he's yelling at you in the wee hours of the morning; it's a good thing :-) If anyone has the chance to beat this thing, Mattie the conquerer does. How could you not give him that chance? So what if you can't find studies that indicate a better prognosis. Studies schmuties. There is always a first...the first successful heart transplant, test tube baby, etc. People scoffed that those things would ever be possible. But modern medicine is an incredible thing, and it's something that you always have on your side. Remember Lorenzo's oil? The parents wouldn't give up even after being told there was no cure for their child. They went out and found one. Now, I'm not suggesting you get out the test tubes and start mixing (although Mark does have a degree in molecular biology and may be able to help you out:-) But you get the picture. Most parents don't have the patience, fortitude, and indefatigable energy that you do, which gives Mattie a huge advantage. Hmmmm. I wonder where Mattie gets his strength and determination? Your family is a winning team if I ever heard one. I was just talking with Dr. Lischwe (Grace and I share a pediatrician too!) the other day and she was sharing a story she recently read about the first person to receive a pace maker. Despite the fact that no one ever had success before, the man in his forties willingly submitted to trial after trial of pace makers. The first pace maker lasted eight short hours. But he was not deterred. He bellied up to the surgical bar and submitted himself to one pacemaker after another. Finally one stuck, and he ended up living well into his eighties. Sure it's difficult now, incredibly difficult, seeing Mattie so immobilized, but just remember that you've passed those enormous hurdles of four surgeries. Phew! And look how well those surgeries went. (Thanks, Super Bob; I think we need to get Dr. Henshaw a super hero cape, don't you?) It's only a little more than a week out, and as more time passes, Mattie will gain more and more strength needed to engage in the things he loves like arts and crafts, then his mood will surely improve. And as you, yourself said, "Mattie breaks the mold." So why shouldn't he break the mold in being the first to kick this nasty disease?"



On the electronic front, we want to thank Susan, Eva K., Eric & Nataliya (author/illustrator of the Flightless Goose), Coach Dave, and Karen for the e-mails and e-cards. As we sign off for the evening, we want to wish you and your families a very Happy Thanksgiving. We are very thankful to have all of you in our lives, and thank God for Team Mattie. I also want to thank Team Mattie for coordinating the development of reminder bands (wrist bands). Ann brought me a shopping bag full of them yesterday. Thank you Carrie and CSI, the bands look wonderful. Peter and I worked hard on crafting the band's message, and I feel it says it all as we approach this miraculous holiday season... "STOMP IT OUT FOR A MATTIE MIRACLE!"