Wednesday, July 15, 2009

Wednesday, July 15, 2009

Thank you for signing Mattie's LIVESTRONG dedication page! Please keep the signatures coming, we value your support. Let's make our Country's leaders know that cancer treatment and research needs to be a top priority! http://www.livestrongaction.org/node/20612

Quote of the day (Thank you Charlie!): “This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life." ~ Unknown

Before I tell you about our day, I want to acknowledge our anniversary. As of today, Peter and I have been married 14 years. That alone is an achievement, but factor in the year that we have had, and the continuous battle we fight to get Mattie well, and you really have to say it is a miracle that we made it to year 14. Marriage is a complicated endeavor even under the best of circumstances, but when a family contends with such profound illness, it not only impacts every person in the family, but it also translates down into the strength and health of one's marital relationship. Fortunately for Peter and I, we were friends for many years prior to getting married. I think this friendship and mutual appreciation for each other has always been the foundation of our relationship, and therefore something we turn to in times of crisis. However, I am the first to admit, that even the best of relationships are tried when dealing with cancer. I so appreciate the lovely e-mails and cards we received today and we thank you for pointing out the great love and respect Peter and I have for each other. That was indeed a lovely anniversary gift and message to receive!

Mattie had a VERY rough night of sleep on Tuesday, and an even more challenging day today. Mattie has been taking anxiety medication for over a month now. However, yesterday was the first night he stopped taking his medication. Mattie's psychiatrist, Dr. Biel, felt that this was an appropriate time to discontinue this medication, especially since Mattie is already on such a low dosage of Klonopin. Dr. Biel prepared me for some of the side effects I could see within the next day or so as Klonopin works its way out of Mattie's system. I can honestly say today was a day of outbursts and emotional reactions. Which really proved to me just how effective Klonopin was for Mattie over the last month. Dr. Biel feels such reactions are very typical, and hopefully I will see an improvement in Mattie's mood within a day or so. None the less, Mattie wore me out today. So much so that I went throughout the day without food. There wasn't a moment to manage eating or doing anything else for that matter.

When Mattie woke up this morning, he had an accident in his bed. So I had to clean him and the bed. He was so wiped out from having such a terrible night of sleep, that he couldn't wake up when he needed to use the bathroom. Mattie said he had one nightmare after the other last night. Funny, because so did I. It was as if we were stuck in the same dream. His dream was about an elevator exploding, and mine was about a hotel that I was staying at, which exploded. Interesting! Mattie woke up edgy, refused to feed himself, and yet wasn't acting like himself. He seemed tired, did not want to play, and yet did not want to be left alone. He was scheduled to participate in a Hyundai event on the Hospital campus today, but Mattie did not want to leave the house. At all! Mattie got it in his mind that he wanted to buy a Lego set instead. In fact, he was fixated on it all day. I couldn't redirect him to anything else, he refused to leave the house, go to physical therapy, and the worst part is I couldn't stop him from crying over something as silly as Legos. He was absolutely hysterical and not rational. This to me was beyond a tantrum, and I felt like it was medication related. How I managed a full day of this is beyond my comprehension, but refusing to go to physical therapy wasn't an option I was going to entertain or tolerate.

By the time Mattie got to the hospital he regrouped. He had a good session with Anna, but he seemed tired. I am now concerned about Mattie's right elbow. To me it looks like a bone is protruding out of his elbow region, and I am pretty sure it did not look like this a day ago. It is my hope that Mattie's oncologist will want to x-ray this tomorrow. Mattie had the good fortunate of seeing Brandon, his big buddy, and Brandon's mom, Toni. Brandon and Toni spent about 20 minutes with Mattie during his PT session. Brandon worked with Anna, and kicked a beach ball back and forth to Mattie. Brandon cheered Mattie on, and after their game together, Mattie walked over to Brandon on the parallel bars and gave him a high five. You can see Mattie's progress in the pictures I took today.

Left: Mattie appeared to walk better today, without putting so much pressure on his good foot. Normally when Mattie walks, he stomps on his left foot to compensate for his weaker right foot. I did not hear as many loud thuds today with the left foot, which was a good sign.

Right: Mattie kicking a beach ball. In fact, today was the first day Mattie actually kicked a ball with his left foot, while putting full pressure on his right foot.

Left: Mattie giving Brandon a high or low five for their beach ball game they played together!

After therapy, we headed home and soon there after, Mattie was visited by Louise. Louise watched Mattie for several hours today while Peter and I went out to dinner. During dinner Mattie called me, and wanted to know when I was going home. I told him we would be home in an hour, and that he should continue playing. I think his main question really was when would he be able to go to the Lego store with us tonight?

It was nice to go out to dinner and spend this time with Peter, but I must admit, I am tired, not very good company, and I was starving from not eating all day. So I wasn't in the best of moods to be celebrating. When I met up with Peter, he handed me a lovely gift bag that his company gave to us today. What an amazing bag of goodies, that contained such things as a certificate to a spa, restaurant gift cards, and wonderful chocolate truffles. I appreciate all the meaningful sentiments that Voxiva, Inc. wrote to us as well. It was a gift that made us feel special.

When Peter and I were walking back from dinner, we looked up at our complex, and waving to us was Mattie with Louise. Clearly, someone was waiting for our return! We want to thank Louise for the wonderful books, sweatshirt, puzzles, cupcakes, and picnic dinner she brought for Mattie tonight! After we said good-bye to Louise, Peter and Mattie headed out to the Lego store. Mattie has taken on a Lego project that contains 5922 pieces. Needless to say, I feel like I am surrounded by Legos and my joke in the house is I am going to get rid of all my furniture and Mattie and Peter can design me furniture out of Legos. That should give you an indication for how many Legos we have! As I type this, Mattie and Peter are busy constructing and are very focused.

As we head into Thursday, Mattie goes back to the clinic for his MTP-PE infusion and physical therapy. Another long day at the the hospital is in store for us!

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Tuesday was a very busy day. As much as you seemed "stuck" in a routine while Mattie was on chemotherapy, it seems a new routine has replaced it. This back and forth to the hospital daily must be exhausting and I am sure you are wondering when (and if) your lives will return to normal. Mattie is doing well in physical therapy and yet it is clear that he has a long road ahead of him. The key is not to lose patience or faith as Mattie is very sensitive and will pick up on your emotions and reflect them in his own behavior. You do such a good job of being both a parent and a cheerleader for Mattie; we could all take lessons from you on balancing love and discipline. I hope today's "load" is lighter than yesterday's with the new chair and that the bumps are a little easier to navigate."