Thursday, December 18, 2008

Thursday, December 18, 2008

Quote of the day (Thanks Charlie!):

When I saw this quote I thought this was so perfect. This is exactly what you and Pete are doing, praying with faith and continuing to push the envelope for Mattie's care.
Faith moves mountains, but you have to keep pushing while you are praying.

~ Mason Cooley

Our morning began at 6am, with incredible pounding and drilling. They are doing construction either on the floor above or below us in the hospital, and the sound was intense. You just want to scream sometime. The irony is when I went outside where the nurses' desk was, no one seemed visably bothered by the sound. God only knows how. It was the kind of sound that vibrates right through you, and mind you the sound never went away. It stayed with us into the afternoon. Don't think for one minute that a hospital is a place to rest if you are sick!

At around 10:45am, I started getting concerned about how our day was heading because I did not have a discharge time frame or plan laid out for us to leave. So I spoke with Miki, our nurse about this. Mattie was supposed to meet up with his psychiatrist at 2:30pm, and it turns out his oncologists scheduled Mattie for a hearing test at 2pm. So clearly Mattie couldn't be in two places at once. Peter and I know that the chemo drugs Mattie is exposed to could potentially affect his hearing, so I felt this test was imperative, and worked with Matt Biel (the psychiatrist) on coming up with a different meeting time for next week. I find that sometimes the coordination of Mattie's care needs a little subtle push, or perhaps prode, and today, I felt like I was on a mission. A mission to make sure that all of the other non-medical related services which are vital start falling into place for Mattie. I think PT and play therapy right now are crucial to Mattie's recovery.

Mattie played with Linda for a good chunk of the morning. Mattie seemed animated today, most likely because he knew he was leaving the hospital and was excited to go home. At around 1:45pm, we headed over to the audiologist for a hearing test. Lesley and Whitney came with us as well. We will truly miss them, since Mattie relates to these interns very well. They have just a warm and caring nature about them, and Mattie is pretty good at sizing up people. He trusts Lesley and Whitney, and that trust doesn't come easily. So myself, Lesley, and Whitney observed Mattie undergo about an hour's worth of testing. First they tested Mattie with a computer in a regular office, and then they took him into a sound proof chamber (which is incredibly quiet) and they placed ear phones on him and they wanted to hear if they could hear things through the ear phones. I could see the woman reading a script through the window, and to me it looked like she was doing more reading than I could see Mattie acknowledging. That was my first red flag. But honest to goodness, I never thought I was going to find anything unusual out of today's hearing results. However, I really need to prepare myself better for these things in the future. After the testing was over, the audiologists told Mattie he could go out of the room with Lesley and Whitney (thank goodness they were there!). I knew that wasn't a good sign, because if the results were good, they usually tell me in front of Mattie (or at least that is what happened last time). Today they told me that Mattie is losing hearing in both ears. The left ear is more pronounced than the right. He is having trouble hearing higher pitched tones in both ears. This is permanent damage, and they said if they could encourage the doctors to change his chemo (which of course isn't happening) they would, because it seems that more months on this stuff will only impact his hearing further. They even spoke to me about hearing aids eventually. Okay, that was JUST TOO MUCH to take today. My God! What else is in store for us and Mattie. At the moment, Mattie can pick up on conversational speech just fine, but they indicated that even this could be affected with more chemo. I walked out of that meeting and I felt like a train ran me over. I absolutely hate cancer! Cancer seems to attack every part of Mattie, hearing happens to be one of the measurable consequences of chemotherapy, but I know there are so many other aspects affected that are not quantifiable, at least by modern medicine. When I left the office I was with Mattie, and I did not want to appear frightened or so overwrought. But this is getting harder and harder to do these days. After Lesley and Whitney dropped me off to wait for Jane to pick us up to leave the hospital, I got a call from Matt Biel on my cell phone. I told him that I was unhappy with the results, and as I was talking about this I started to cry. A bystander in the waiting lounge apparently was watching me. Though I wasn't aware of it. After I got off the phone, she came over to me and wished Mattie a Merry Christmas. She basically said to Mattie, that it looked like he was going through a hard time, but is a fighter and she wanted to give him a Christmas gift. She asked me if that was okay. I was too dumb founded to really respond. Before I knew it she gave Mattie a $20 bill. She then gave me a hug and I continued to cry. She said nothing, but said Matthew would be in her prayers. I have no idea who this woman was or if I will ever see her again. She was like an angel today, who stopped me in my tracks with such a good and sensitive deed. God works in strange and mysterious ways.

Jane met us at 3:15pm, and helped us get home. She even brought us lunch which we had in the car. Thankfully so, because Mattie was straving. He literally ate four chicken nuggets and half a cheeseburger. Which is unheard of because he doesn't like hamburgers. I can't thank Jane enough for picking us up and helping us transition home!

When Mattie got home, he wanted to decorate the Christmas tree that Linda gave us. So I helped him with that and he wanted to go through some of the toys he got from the childlife room that he some how came home with today. I spent the next three hours unpacking things. I came home with six shopping bags full of toys and presents for Mattie. So I tried my best to organize things and clean up stuff from being away for 8 days. Fortunately Peter took all our things home this morning and even brought them inside for me, so I did not have to worry about schelping bags. Mattie did a good job at entertaining himself for three hours while I was running around.

Mattie even helped me open up Christmas cards and a gift I received. I want to thank the Peterson family for sending me such lovely Sephora lotions. I really appreciate your thinking of me always. That was very kind of you and with the dry air in the hospital, lotions are always appreciated. Thank you Brian Boru (our feline friend) for the beautiful golden snowflake ornament! Mattie loves how it sparkles. I would also like to acknowlege the GW counseling department faculty who have made a very generous donation to Mattie's fund. That was so thoughtful and I appreciate your support, kindness, and willingness to follow our journey.

Today was the day of special cards as well. We want to thank Nelson and Barbsie for making a special donation in Mattie's name to St. Jude Children's Research Hospital. I can't think of a more worthy facility to contribute to. We also want to thank Jo Pinder for enrolling Mattie in the masses and prayers of the Franciscan Friars beginning on Christmas day, and Marie Abbazio for enrolling Mattie in a perpetual mass of the Franciscan Friars in which Mattie has been inscribed in the spiritual treasury of the companions of St. Anthony. Last but not least, thank you Susan D. (Mattie's school counselor) for the fantastic santa/reindeer musical card! That brought a smile to our faces, as your cards always do.

We want to thank the Kelliher family for a lovely dinner and for the beautiful white poinsettia plant. It is a lovely reminder of Christmas. Mattie is also looking forward to watching Kung Fu panda! Thank you for supporting us tonight!

I had to join a board conference call tonight and some how I had to put Mattie's issues aside and try to focus. I am not sure how Peter does this every day, because it certainly isn't easy. Really everything else I hear about doesn't amount to a hill of beans in my book when I reflect on the crisis I face with Mattie. This seems to take front and center in my mind, body, and spirit. When I got off the call, Peter told me that Mattie somehow got from his wheelchair to another chair in our home while Peter was in the kitchen. I came down to observe this myself. Then the next thing I know, Mattie is standing up and hobbling around, holding each piece of furniture (like a toddler would do who is learning to walk). He was motivated to move around our first floor because his goal was to get upstairs where he knows I am keeping some of his Christmas presents. Nothing escapes him since he is home with me 24/7. Well Peter and I couldn't get over what we were seeing, quite a difference from yesterday when he told us he wanted to remain in his wheelchair. So as he moved from furniture piece to furniture piece, he eventually took a break by the piano. He pulled out the piano bench, sat down, and started playing "Mary Had a Little Lamb." Caroline (his piano teacher), you would be proud! Mind you he hasn't practiced at all, it just came to him. After playing, he got up again and made it to the stair case. I tried to take pictures to capture his determination. After all that great walking, I did break down and I gave Mattie a Christmas present. While I am typing this, I can hear Interactive Wall-E going off in the background and Mattie is enjoying his present.

What explains Mattie's willingness to walk tonight? It could be explained by so many things? One, his motivation to see his Christmas gifts, two, his happiness and security of being home, or three, he has determined he is ready now. It could be a combination of all three, but Mattie has a strong willed personality and he isn't going to do anything he assesses he isn't ready for or doesn't want to do. I just can't get over how much he walked tonight!

I end tonight's blog with a passage written by Aeschylus (a Greek Dramatist @550BC). Thanks Goli and John for sending this to me. Goli and John were our neighbors who now live in NYC.

He who learns must suffer

and even in our sleep

pain that can not forget

falls drop by drop

upon the heart

and in our own despair

against our will

comes wisdom to us

by the awful grace of God.