Monday, September 1, 2008

Monday, September 1, 2008

I am happy to report that after a weekend full of activity and visitors, Mattie slept in this morning. In fact, he did not wake up until around 9:30am. That is an all time record for Mattie. Dr. Sydner came in after Mattie awoke and told him the good news, that his methotrexate level dropped to .09 and that he could go home! Peter and I packed up Mattie's room in record time, which is a feat considering if feels like we have to bring our home with us and then pack it up each time we leave. While we were packing though, Mattie was playing and built a tower made out of markers as you can see on the left!

After packing up the room, I then helped Mattie change out of his PJs into regular clothes. Before doing this, he went to the sink to wash his hands and face, and for the first time in days he actually had the opportunity to look at himself in the mirror. Prior to today, he really did not glance up at the mirror. As Mattie was washing his hands, he began to comment on what he saw reflecting back at him in the mirror. He told me that he looks terrible with no hair, and then said this is "embarrassing." At first I was surprised to hear this because he had been handling the hair loss so well, but I knew at some point this would hit him, and I wanted to hear his concerns and fears. So Peter and I explained to him that his hair loss was temporary and once he is off all the medicine, his hair would eventually grow back. We told him that this also means that the medicines he is taking are working and doing their job. We reminded him of all our friends who had cancer and he acknowledged that they all had their hair now. But what really sold him was when we pointed out that his Uncle Chris has no hair either, and he isn't embarrassed. That Chris' hair wasn't going to grow back, but Mattie's was. Mattie was just fascinated by this difference between him and his uncle, and was then able to move past that moment to the next activity. Again the beauty of a child! Mattie can move in and out of these emotional moments, but of course after each episode like this, it weighs much heavier on my mind and I can't move past it as fast. But I am learning.

When we got home today, Mattie wanted to go for a walk around our complex. It just so happens that on our walk, we came across a cicada and a cricket. Mattie thought these bugs were so neat, that he ran back home to grab our camera and take pictures. You can see our small friends below. For those of you not fond of bugs, I send my apologizes. Mattie seems to be very interested in photography, and so whenever he wants to take my camera and capture something, I embrace it.

Cicada on the left and cricket on the right!

Before we learned about Mattie's diagnosis, we had a neighbor, Susan, who was moving away and did not want to take her baldwin upright piano with her. Susan was fond of Mattie, and she told me that she wanted to give her piano to Mattie so that he could learn to play. I jumped at the chance to have her piano, since I feel music is an important component of life, and what a wonderful skill and outlet to have to turn to. Before Mattie got sick, I was looking into piano lessons for Mattie, but after his diagnosis, this idea fell by the wayside. Until today that is! I was sitting at our dining room table this afternoon, and trying to catch up on life. While I was doing this, I was hearing music. I was wondering where was the music coming from because I found it intriguing. I looked up at the piano, and there was Mattie totally engaged and composing his own music. I thought this was such a special moment, so much so that I ran for my camera and tried to catch small videos of this moment. It was my intention to share these videos with you, but for the life of me I can't get them to upload to this blog. I will get Peter on the case to figure this out.

Later on today, my friend, Amany, and her family came to visit. Amany and I went to graduate school together, and have helped support each other through all sorts of highs and lows. It is hard to believe that Amany has two teenage children (Mimi and Tarek) now, since I remember them when they were two and four years of age. Mimi and Tarek did a great job playing with Mattie and they brought him a neat gift. A microscope that displays on the TV. So far Mattie has examined my toes, hair, his ears, and even grains of salt. The possiblities are endless. They played a rousing game of Uno, and then Mattie pulled out all the stops. He got out his magic bag given to him by Bob Weiman and started performing magic. Mimi and Tarek played along with Mattie and by the time he was finished everyone wanted to know how he did these tricks. I found it fascinating that Mattie remembered how to do all these tricks and was energized and animated as he performed what he learned. Bob you would have been proud!

Amany, thank you for the wonderful dinner. You out did yourself. You will love to know that Mattie ate a whole bowl full of your whipped yams. As for the rice crispy treats, I can't remember the last time someone has made those for me/us. It reminded me of something my grandmother would have done for me when I was sick. Thanks for bringing back that lovely memory for me.

Left: Mimi, Mattie, and Tarek

Right: Amany and Vicki

Peter (holding JJ - our resident Jack Russell Terrier), Ziad, Tarek, Mattie, Amany, Mimi, and Vicki

Mattie received gifts today in the mail. Thanks Margie and Bill for the beautiful black stuffed teddy bear and thank you Merritt, Ham, and Hunter for the great lite bright. JP, thank you for the wonderful Nationals t-shirt, and thinking of Mattie while you were at the game today. Mattie enjoyed coming home to your packages. On the electronic front, Mattie's buddy Campbell sent him a wonderful slideshow of the lego brick fair that he went to this past weekend. Mattie thoroughly enjoyed seeing all the displays made of legos. He almost felt like he was there. Thank you Charlotte, Karen, and Virginia for sending Mattie e-mails. He loved them. Kim and Lorraine, thank you for your great e-cards. It perks up our day! Grammie, Mattie loved the duck story and even shared it with Dr. Synder this morning.

It is nice to be home and we are looking forward to the simple things now, a comfortable bed and a decent shower. Amazing how all of this can change your perspective and priorities. I thank each and every one of you for your thoughts, e-mails, gifts, and letters. I received a very touching letter today from a SSSAS mom and I just wanted to say thank you Laurie!