Thursday, January 8, 2009

Thursday, January 8, 2009 -- A Perfect Day!

Quote of the day (Thanks Liza!): "God doesn't give you the people you want, He gives you the people you NEED. To help you, to hurt you, to leave you, to love you and to make you into the person you were meant to be."

Mattie and I read some wonderful sea creature books together that he received from a science teacher in Washington state last night. Mattie enjoyed them very much and we eventually got to bed at midnight. Mattie woke me up a couple of times last night, and at 5am, he seemed up, but eventually went back to sleep. At around 4am, I noticed that Peter was still up. He was working late, and trying to catch up on work since he missed a lot last week while I was sick, and of course he will be missing more work next week when we head to Sloan Kettering. You have to wonder how we function around here on such little sleep and so much stress. It is a wonder.

This morning, Mattie arose at 8am. At which point, I got him dressed for the hospital. He wanted to eat, but because there was the possibility of him being sedated for the CT scan, I had to make sure he was NPO (nothing by mouth) as of midnight. I learned my lesson once, in which I gave him a teaspoon of yogurt prior to sedation, and the PICU doctor overseeing the sedation refused to allow the scan to take place. I understand the need for precautions, but she made me feel so terrible that day, so when they tell me they want Mattie NPO, NPO he will be. In the car, Mattie and I talked about the CT scan and how I knew he could do it without sedation. I also told him that the procedure would be so short, and there was so much fun in store for him, that there was no time to be sleeping with sedation. Linda suggested taking Mattie out to lunch at a Japanese style restaurant at the hospital. Since Mattie enjoyed Charlotte's birthday luncheon so much, Linda thought he would get a kick out of this today. Mattie understood this would be his reward if he went through the scan without sedation.

The registration process went fairly smoothly at the hospital. I always find it fascinating the looks I get from some people who pass us by. They can clearly see Mattie is a cancer patient. Some are not sure how to react to us, and others smile, and try to engage us. It is an interesting experience and feeling that it leaves me with. We met up with Linda pretty soon after we registered. Linda basically spent her entire day with us. We would be lost without Linda, and the role she serves is so vital, and psycholgically as powerful as the some of the medications Mattie is taking to make him better. Linda came armed today with a CART load of activities to keep Mattie busy and entertained. While we waited in the day surgery center to be called to the scan, and literally we waited at least an hour, Linda and Mattie built a race car and played with model magic. Mattie wanted to surprise me with his creations, so I had to close my eyes while they were working. So I did. I put my head back and closed my eyes. I was feeling crummy and congested, not to mentioned very nervous. But while Mattie was occupied with Linda, suddenly my left ear popped and I could hear out of it. That was like a miracle, since I couldn't hear out of that ear since I got sick over 10 days ago. So I started this taxing day with the first miracle.

Then we headed to the CT scan room. Mind you we were missing two crucial people, Jey and Debbi. Jey is Mattie's "big brother." Jey always does Mattie's CT scans. However, he was out on paternity leave. Debbi was also out for the week, and she usually does Mattie's sedations. So I felt a little lost without them. In fact, while Mattie was getting a CT scan, Jey called from home to talk with me. He wanted us to know that he was hoping for good results today. What does that say about the Georgetown staff? I think a lot! Linda engaged Mattie with the movie Wall-E while he was in the CT scan machine. Mattie was teasing Linda about the cockroach in the movie, and that got his mind occupied. Linda is a marvelous distraction. Mattie did the scan in minutes. It was quick. Mattie did it without sedation, he just received some Versed, which is an anxiety medication and the recovery time from that is quick. So that was the second miracle today, a scan without sedation! After the scan, Mattie went back to the day surgery center so they could check his vitals. While there, Linda surprised Mattie with a bag of gifts to congratulate him on his brave achievement. Mattie received some wonderful Wall-E books today and even walkie talkies (which he loves!).

Before we headed out to lunch, we stopped off in the clinic so Mattie could have his vitals recorded there and to have his blood drawn. I wanted that behind Mattie so that he could enjoy lunch and not have to worry about being poked and proded after lunch. Mattie cooperated and he was excited to hear that Jenny was joining us for lunch. Jenny (one of Mattie's art therapists) is another person I am thoroughly fond of. Jenny has a smile and such a caring demeanor, you just feel better talking with her. We are so lucky to have people like Linda and Jenny in our lives, and we missed Jessie today, who was home sick. All I kept thinking of today is I received two miracles already, and things in my book come in threes. So I had a feeling that perhaps something positive would be found in today's results.

I need to mention that throughout the morning Ann and I had been in contact with each other several times. Ann was on a mission to get Mattie training wheels and wanted to support us in any way possible. So I told Ann to come to the hospital and she could join us for lunch. Little did Ann know what was in store for her. So Ann, myself, Linda, Jenny, and Mattie headed off for a lunch experience that I won't forget anytime soon. First I have to admit, I never had a Japanese food dining experience like this one. What entertainment! There were eggs, bowls, and food flipping in the air, not to mention a volcano made out of an onion. I took a picture of this flaming onion, and Mattie's reaction to it. I thought his smile was priceless. It was truly memorable. Everything about today's hospital experience created what would constitute, The Perfect Day.

In addition, Ann took a picture of all of us together. I am quite sure Linda and Jenny rarely get to go out to lunch while working, so I am happy this happened today. It was wonderful therapy for Mattie, and he loved the social experience. He certainly needs these!

left to right: Jenny, Vicki, Linda, and of course Mattie

Are you curious to know what Mattie ordered for lunch? Well he ordered shrimp. I was stunned. He proceeded to tell Linda and Jenny that he loves shrimp. Okay! Well he wasn't kidding. Mattie attempted to eat with chopsticks and was animated throughout lunch. Jenny and Linda found ways to get Mattie to eat, and before I knew it all the shrimp was gone! But the funny part, as we joked with him, the shrimp energized him and he began to play a game with us. He developed into this character who had an evil eye. He would jump out of his chair, and come over to you and look you in the eye and give you this scary look! I captured this facial expression so you could understand what I meant. As he came over to me, Ann snapped a picture of him trying to scare me.

Mattie then tried to scare Ann. But Ann began to play a game with Mattie. As he would get close to her, she would jump to the next chair over. We were sitting in a U shaped table, and there were other empty seats around us. As Ann kept moving, so did Mattie. Mattie literally was making circles around the table. I caught two great pictures of Ann and Mattie in motion. Ann is an occupational therapist by training, and her skills just came out today. Mattie was moving around, and using his parts and not even realizing what he was doing. What physical therapy Mattie got today, and Ann I am sure won't forget the evil eye any time soon. Linda and Jenny were watching this and were impressed with how well Mattie was moving. Mattie has a special spark about him. When he is on, he has a way of engaging others, and today we were all having a good time watching him having fun and smiling. That was a great gift.

After lunch we headed back to the clinic. Dr. Toretsky was already waiting for us there, and it was only 2pm. He greeted us with a smile, and started chatting with Mattie. So I could tell he had some what good news to report. Mattie and I showed the pictures we took at lunch to Dr. Toretsky and then Mattie started working with one of Linda's new interns, Meg, while I went to meet with the doctors. Right before the meeting Ann said something that eased my fears. She said no matter what Dr. Toretsky told me, we will deal with it. We will just need to ask for a bigger miracle. Some how that was the right thing to say at a very stressful time. Ann did attend the meeting with me, because either this was going to be a good meeting or a very difficult meeting, and I appreciate her support in going through this with me. This is not an easy position to be in as a friend, but I think Ann has had her own harrowing experiences with caring for her brother who had cancer, which gives her insights in how to help me. None the less, having her there made a big difference to me. Dr. Toretsky told us that the lesions have not changed size and there are no new ones. He said that you can conclude one of three things: 1) this is bone cancer, or 2) these lesions are reminents of an infection, or 3) that the lesions could be atelectasis, or portions of collapsed lung that are the by-product of surgery and sedation. At the moment these lesions are TOO small for any further testing to reveal what they are. So Dr. Toretsky was happy that there was no further progression of the disease, and felt we should stay on course with the new chemo regimen.

However, he did let me know that eventually if the lesions do not disappear they will need to be removed through surgery. This will be the only definitive way for us to determine what we are dealing with. So that is another hurdle that we may have to deal with in the near future. But I have learned with cancer, you have to appreciate today. So for today, these findings were good. Would I have liked to see the lesions totally gone today, YES, I would have, but I have come to accept that in the grand scheme of things they are not growing or spreading, and this is very good news. I am thankfully for whatever good news comes our way. So all your prayers, hopes, and good wishes were answered today. I am sure God was on overload with Mattie prayers today. I want to thank each and every one of you who e-mailed me. My account was VERY busy today. I thank everyone who thought about us today, and for checking in through the blog.

Dr. Toretsky also examined Mattie today after our meeting. During their conversation together, Mattie revealed Sparky's (Mattie's central line) middle name to Dr. Toretsky. So now, myself, Peter, Dr. Bob, Kathleen, Dr. Synder, Dr. Toretsky and Linda know. The list is growing. In return for Mattie revealing this, Dr. Toretsky shared with Mattie his magic trick. Dr. Toretsky has a trick thumb that lights up and he showed Mattie how he is able to do this. So the two of them had a thing going today about sharing their secrets with one another. Mattie was in rare form and Dr. Toretsky basically said he did not know what I have been doing with Mattie for two weeks since he has been gone from the hospital, but it is working.

I also want to thank Ann for bringing Mattie a series of Muppet Show DVDs. I can't wait to see these with Mattie. What a treat. Thanks also for the banana muffins (yours are one of my favorites!), and of course for tracking down training wheels. I thank all of you out there trying to meet our training wheel demands today. Thank you Anne S. for dropping off a spiderman training wheel set for us too. With my track record, it is good to have two sets.

When we got home from the hospital, Mattie was focused on me putting his training wheels on his bicycle. Well a simple process, took me hours. But I wasn't going to let it go. I was determined to figure out how to put these wheels together. After several hours (I hate to admit), I assembled the wheels. Mattie even took a nap while I was working, I was that slow. After the bike was ready, Mattie insisted on trying it. So I wheelchaired him outside, and then helped him on the bike. He was very scared and afraid he was going to fall. I held him like a human seatbelt, and he peddled a bit. He wanted to get off though and looked a little dejected. When I took him inside, I asked him if there was something he wanted to say, and he just looked at me. He asked how I knew, and I told him, he just looked like he was carrying the world on his shoulders. He was upset that he couldn't ride his bike, but I put a positive spin on the whole thing. I told him it I were him, I wouldn't have been able to get on the bike at all. I told him each time he does it now, it will be easier. So we shall see if he wants to pursue riding again.

We want to thank Theresa D. for a wonderful dinner tonight. Thank you for supporting us through this difficult day and for providing goodies for each of us! We also want to thank Joan Holden, SSSAS' head of school, for calling us today. Joan we appreciate you standing behind us "every step of the way." We are fortunate to be a part of such a strong school community!

I received three e-mails today that I would like to share. The first one is from Debbie, Mattie's art teacher at SSSAS. Debbie is a huge Mattie supporter! Debbie wrote, "FYI I had two classes during this time period when I figured Mattie was inside of the scanner. My heart was so warmed to watch every child clasp their hands over their bowed heads to say a prayer for Mattie. I am begging God to help Mattie. I will check the blog later to see the results." Thank you Debbie and all the children for your special prayers today!

The second e-mail I received today was from Sean Swarner. I first learned about Sean from Karen, my good friend in NY. Then Anne Sterba (a fellow SSSAS mom) contacted me and told me she went to college with Sean. She helped us establish a connection. Sean is the first Cancer Survivor to Summit Everest and he recently won Hawaii's Ironman championship. He is an international speaker and also a great role model for the cancer community. Sean is open to exploring ways to support Mattie, and I appreciate his willingness to get to know us.

The third e-mail is simply fascinating. Some of you may remember in last night's blog that I said I wanted to develop a Lego rent a center in my next life. Well believe it or not, we got an e-mail from the Vice President and Assistant General Counsel at Rent-A-Center. Andrew wrote, "I am set up for a Google alert for internet sites which mention Rent-A-Center, the company I work for. I received a Google alert yesterday because Mattie's blog indicated, in a joking manner, the desire to build a Lego Rent-A-Center. I read the blog, and on behalf of Rent-A-Center, please let Mattie know that I would love to have a Lego Rent-A-Center and will buy it for $1,000 and proudly display it in my office. Please send me the address and I will mail out a check today, and let Mattie know that he can build it only when he has some spare time, and if it only consists of 4 Lego's that will be fine with me. Who knows, maybe he is destined to become an architect. On behalf of Rent-A-Center and myself, please wish him and his family the best of luck. Andrew Trusevich
Vice President and Assistant General Counsel
Rent-A-Center, Inc.
Board Certified: (1) Civil Trial Law; and
(2) Labor and Employment Law, by the
Texas Board of Legal Specialization

Andrew contacted Alison and on behalf of Rent-a-Center, they are making an $1,000 donation to Mattie's fund. Just incredible! I really only stated this in a joking fashion last night, and yet Andrew and his company want to do something that will ultimately help Mattie. Thank you Andrew and Rent-A-Center, this says something to me about your company, since I mention lots of commerical items on the blog in passing, but none of these companies graciously contacted us and want to help a six year old boy with cancer.

Since I know some of you enjoy the songs I post on the blog, I have another one for you tonight. This one captures two feelings. Mattie is one of the people in my life who can turn the world on with his smile, and for me he can take a nothing day and suddenly make it all worthwhile! Some of you may already recognize that line if you were big Mary Tyler Moore show viewers. This was part of her theme song. The second reason I am attaching this link is at the end of the song, Mary Tyler Moore throws her hat up in the sky (like one would do at graduation) signifying the fact that she made it and is happy. Well today, I figuratively throw my hat up in the air. We made it through a difficult day, and will continue on through the next several months of chemo. Thank you all for being there on such a challenging day for us.

http://www.youtube.com/watch?v=u8MWdNG3wsw