Wednesday, July 1, 2009

Wednesday, July 1, 2009

Quote of the day (Thank you Kristen - Mattie's oncologist!): "Hope... is a strange invention. A patent of the heart in unremitting action, yet never wearing out." ~ Emily Dickinson

Before I begin tonight's posting, I wanted to comment on two things. First, last night we received a beautiful posting in the commentary section of the blog. The person who left a comment, doesn't know us personally but started reading our blog after our Channel 9 newscast about Mattie. This person's message really touched my heart, and I am in awe of those who do not personally know us, and yet are interested and committed to Mattie's story. For finding the time and for opening your hearts to us, we are very grateful. In challenging times, we reflect on all of you who stand behind us. The second thing I wanted to comment on is my mom. Many of you wrote to me today and asked whether my mom is a mental health professional like myself. The answer is no, she is just an intelligent and intuitive woman. In fact, my mom was a devoted mathematics teacher for 20 years in a New York City public school, was a college advisor, and then eventually became a full time caregiver to her mom, who suffered a massive stroke which left her paralyzed and with a change in personality. My mom cared for my grandmother within our home. I am sure she will be happy to hear how much you enjoyed her writing!

Mattie experienced his first night without IV hydration on Tuesday. That should have been a great night, but it wasn't. Mattie couldn't fall asleep until 1:30am, he needed oral pain medication, and then was tossing and turning all night long. At 6am, he needed more pain medication, and then by 9am he was up and agitated. Mattie complained of pain in his right hip and left wrist, and in addition, he is experiencing nausea. Most likely the nausea is from the narcotics he is on to manage his pain. I find pain killers to be just that, killers. The side effects from them are almost as bad as the pain itself. Mattie is not eating well at all. In fact when Peter and I looked at Mattie's right leg tonight, it looked more like a chicken leg, rather than the leg of a seven year old boy. You can see the amazing atrophy between the right and left leg. In any case, I think Mattie's oncologist is concerned about Mattie's weight, especially since he isn't gaining any weight. Mostly because he isn't eating. In addition, because he isn't eating, this is impacting his electrolyte balance. Mattie had a blood draw today, and Dr. Synder (Mattie's oncologist) told me that after just one night without IV hydration Mattie's electrolytes were imbalanced. Mainly his sodium and chloride levels were quite low. So needless to say, until Mattie starts eating, he will remain on IV hydration each night.

Mattie headed to clinic today at 1pm. Trying to leave the house with Mattie is always a challenge. It is a challenge because he can't dress himself, clean himself, or go to the bathroom without assistance. So in essence his level of dependence is high, and yet I want to give him some freedom to try to meet his own needs. It is a fine line to balance, but one I struggle with each day. Mattie had a good time with Jenny, as he designed first a ceiling tile, and then moved onto a fountain scene. This scene was very tranquil, and Linda, Anna, Jenny, and myself all commented that we wanted to transport ourselves into Mattie's creation. Jenny told me today that she noticed a difference in Mattie's self talk. First of which is he initiated dialog with other children at the art table. A major first. Normally Mattie keeps to himself. But today, he was asking the other children what they wanted to do, and he even asked one little boy what he wanted to be when he grew up. Jenny said that the message of wellness and healing is getting through to Mattie. In fact, Mattie told Jenny that he is going away for the weekend with Ann. He told her that he couldn't do this if he were sick, so I was thrilled that our messages are getting through.

While creating his fountain today, he asked me how to spell the word HOPE. I told him to look at my necklace. This seemed to come out of the blue. He looked at my necklace, and then painted the word right next to his fountain. So this is now referred to as the HOPE fountain. This to me is the perfect example of a message that has been internalized and now acted upon. Funny how empowering the word HOPE is, it is so powerful that it has defined our entire year.

Left: Mattie and Anna, as he designs his fountain. Meanwhile Anna is on the floor stretching Mattie's right leg.

Right: A close up on the HOPE fountain.

While Mattie was in clinic, Anna (Mattie's physical therapist) arrived for a session. Anna's intention was to bring Mattie to the PT clinic, but Mattie did not want to go at first. So Anna switched gears, had Linda come to the Lombardi Clinic for moral support, and the PT session started at the art table. Anna worked on stretching Mattie's right leg, while he was talking and painting. He at first did not want to cooperate, but I won't tolerate this attitude anymore. We even talked about this in the car on the way to the hospital today. Mattie said he doesn't like physical therapy. I said that I could understand that, but that in all reality he should love physical therapy and Anna. Why, because they will get him walking and running again. But I admitted this is going to be hard work, but he is capable of doing the hard work now because he is no longer sick. The session then migrated to the PT clinic, and I let them work a bit without my presence. Instead I spoke to Mattie's doctor about his electrolyte imbalance. When I arrived at the PT clinic, I was amazed at what I saw. Anna and Linda got Mattie to stand, balance, and they were all doing shaving cream races on a long mirror. Mattie was racing with his hands and even his feet. Linda and I snapped some pictures of this productive session. The irony is Mattie was under the impression that he will never be able to lift up either of his arms above his head. This is definitely the case for the right arm, because nerve and muscle had to be cut out due to the nature of the massive tumor that was there. However, that isn't the case with the left arm. Mattie told us today that Dr. Bob said he would never be able it lift his arms, and I clarified what Bob actually said. I said that he has to work at stretching his muscles, but he will be able to have full mobility in his left arm. With that, I began to see the left arm trying to rise up. The power of positive thinking!

Left: Anna, Mattie, and Linda having shaving cream races.

Right: Mattie insisted that I had to participate too. So despite truly disliking this feeling on my hands, I did it. In fact, you may notice that Mattie's hand is pushing my hand up the mirror race track. With Mattie's help, I won the race.

Left: Mattie having a foot race! In fact, Mattie even used his hands to draw cockroaches in the shaving cream. Got to love him!

Right: When Mattie arrived home, our neighbor, Kathleen, left him a big bouquet of flowers. He was very touched by this!

We want to thank Beth Engiles for a lovely dinner tonight. I loved your asparagus and Mattie thought the gummy wormed topped cupcakes were special! As we head into the night, Peter and I are both wiped out, but at 10pm, the night is young for us. It is hard to believe we are in July, the same month last year that Mattie was diagnosed! As we head into Thursday, Mattie heads back to physical therapy for a 3pm appointment and then Dan, the Georgetown University student helping me this summer, is coming by to spend some time with Mattie. My goal is to go out to dinner with Peter tomorrow night, before I have to jump on a professional conference call. Where I find the mental stamina to focus on anything other than Mattie is beyond me, which is why I think Peter is remarkable.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It seems Tuesday was a full day emotionally, socially, mentally and physically. I am glad you trusted Mattie and gave him the opportunity to connect to a friend on his own. It is very hard to step away when you are used to being the main support but it is as Monday's quote said, raising a child is like teaching someone to ride a bicycle- close enough to grab the seat should he be falling but brave enough to watch him wobble as he tries to find his own center. It is a hard balance to find but I know if any parent can do it, you can. I think what Dr Snyder said is going to be critical now; you have to help Mattie find his way to healing and recovery and away from cancer and illness. I was very moved by what the blogger who saw Mattie on TV said, that you and Peter are Mattie's strength and you lift him over all obstacles and get him through the procedures. You will get him though physical therapy and help him to regain his strength but first you have to reposition your own "compass" on the new goal. This is not an easy thing to do but if/when you start looking at the wrong heading remember Mattie is following your lead and he will also lose the motivation to keep going. So now start thinking about strength, healing and wellness and let that be your guide."