Tuesday, January 13, 2009

Tuesday, January 13, 2009

Before my friend Charlie became a professional counselor, she was a Lt. Colonel in the Air Force and also was a radiology technician who received training at Sloan. Charlie wrote to me today and said, "I knew Sloan was a problem back in the 70s and I am sorry to hear that things have not improved much if at all. I think what you did with the patient advocate will do far more for the process of treatment at Sloan than having Mattie's blood drawn every hour. It sounds like you made the right decision on both counts. I know the situation is very unpleasant to say the least but hopefully it will be worth it in the end - to that I offer this quote and hope it is true for Mattie."

Quote of the day: "Every adversity, every failure, every heartache carries with it the seed of an equal or greater benefit." ~ Napoleon Hill

We are all exhausted and we woke up late this morning. Once we were up, I made everyone a nice breakfast and Michael (one of the staff members at the hotel) came up to deliver two packages to us. One package was from Optioncare, our home medical supplier. We needed more IV hydration bags for Mattie, and Optioncare sent them to us today. Optioncare has been fantastic and I love working with their pharmacists. They can't do enough to help Mattie. The second package was a complete surprise to Mattie. Mattie received a package from Linda. Of course Linda put in all of Mattie's favorites such as Legos, model magic, puzzles, a model sports car, and a magic wand (one of Linda and Mattie's signature toys). Thank you Linda, today we felt you were with us in spirit. Linda is an amazing individual that truly understands Mattie. Mattie's face lit up while holding Linda's package and after seeing the gifts. I caught the excitement on camera!

We had trouble getting it together today, and we did not leave the hotel until after noon. We bought tickets to ride on the NY Water Taxi today. The taxi gives you an hour water tour of the city, where you can see the Statue of Liberty, and all the wonderful bridges. We learned today that BMW is not just a name brand of a car. It is also an acronym for the three bridges connecting Manhattan to Brooklyn: Brooklyn bridge, Manhattan bridge, and the Williamsburg bridge. Mattie really wanted to go on a boat ride on his trip to NY, so despite every other boat company being closed on a Tuesday, I was able to locate one that was open and operational during the winter on a Tuesday. The company assured me they could accommodate a wheelchair, what they did not mention was the ramp to get onto the boat was under construction. So one of us had to carry Mattie down a flight of stairs and the other had to take the wheelchair. Fortunately one of the men working with the boat line helped me out. There are many lovely people in NYC, they just don't happen to work at Sloan Kettering.

On our trip, we passed some glorious and historical sites, such as Ellis Island, the site where the Twin Towers once stood, the Statue of Liberty, and one of Peter's favorite all time sites, The Brooklyn Bridge. Below you will see some of the photos we captured on our tour today.

This is a picture of the water taxi. It literally looks like a yellow NYC taxi, doesn't it?!

All three of us aboard the NY Water Taxi!

Ellis Island (which I hope to visit someday, since three of my grandparents entered America through this Island)

You can see a greenish spire on the tallest building in this photo. To the right of this building is where the Twin Towers stood. It was amazing to hear about all the rebuilding of the site and other things in the works to be unveiled on the 10th anniversary of 9/11 in 2011.

Peter took this photo, and I love how he caught the American flag flowing in the wind and the Empire State Building in the background.

Lady Liberty! I love how her flame is moving in the wind and how she has her right foot moving forward. Very symbolic of progress and change, and hope for the future. I felt like I could relate to her cause more than ever now that Mattie is sick.

Peter snapped several wonderful pictures of the Brooklyn bridge today. This bridge has quite a history and several people lost their lives in building it. There is something magical about this bridge and I personally love the American flag on top of it. What a patriotic sight!

After the boat tour, we stopped at Seaport Village and Mattie wanted to buy some things and he stopped to even eat a Nathan's hot dog. Can't get more NY than that! Then we headed back for him to unwind before heading to the Lion King this evening. Karen came over after work and joined us for dinner and she brought Peter another great bottle of wine and Mattie and I shakes. The shakes were sinful. Karen has been a real sport and has listened to us vent for two days now. We debated back and forth whether to take the wheelchair to the theatre tonight, but Mattie is heavy and also he feels very insecure when we carry him. He rather be in the wheelchair. So we attempted to leave without the wheelchair and Mattie pitched a fit. So we caught a taxi wheelchair and all and headed to the theatre. The theatre is located right near Times Square. I guess I haven't seen Times Square in a long time, because I was thoroughly overwhelmed with lights and advertisements. It was sensory overload, but fascinating at the same time. Here is a picture of Mattie, Karen, and I in front of some of the signs!

Before we headed into the theatre, Peter took a picture of Karen, myself, and Mattie in front of the Lion King sign.

The theatre staff couldn't have been nicer to us. The will call window was a breeze to deal with, and someone even escorted us to our chairs and helped us with Mattie's wheelchair. I can't thank Jenny and Jessica Moore enough for making this possible tonight. We also thank Mr. Padden at Disney. I guess Disney does make one's wishes come true. The show was magical and vibrant. I am not sure if I have ever seen a Broadway show like this. The scenery, costumes, lighting, and staging are down right incredible. I felt like I was transported to another culture and time. Mattie was completely glued and at times dancing in his seat. Mattie sat between Peter and Emily (his babysitter who moved back to New York). Emily was a graduate student at GW, and Mattie and her have a special rapport. I know Mattie enjoyed the experience sitting next to Emily and thank you Emily for the wonderful Lion King items you bought Mattie. They are adorable and will remind us of this special evening. Mattie was very curious about how people in the play could be flying and how things seemed to appear and disappear through the floor of the stage. All great questions, because the way this was staged was so creative. I can't believe that a live show could be better than an animated movie, but I think it is safe to say in my book, that I liked the show better than the movie. I will not forget the colors, songs, and the motion of these animals any time soon. The evening only got better. Jessica Moore arranged for us to get a backstage tour. We were personally escorted by the stage manager, Narda tonight. Narda explained her role to us, and in all reality her role is crucial. Seems to me she cues just about everything happening upon the stage. In addition, to Narda, we also had the pleasure of meeting and taking pictures with one of the stars of the Lion King. The actress (Kissy Simmons) who played the character Nala (who is Simba's girlfriend). Kissy was delightful, down to earth, and very gracious with her time. She answered our questions, and took pictures with us on stage of the Minskoff Theatre.

After the tour was over, Narda graciously took a picture of our whole group together on stage.

From left to right, Adam (Emily's boyfriend), Peter, Karen, Vicki, Emily, and Mattie


My mom shared an e-mail with me yesterday entitled, "How much do we miss?" I liked it so much I have posted it tonight. In essence, we can learn a lot from the children in our lives. Sometimes they see much more than we do, and we are too wrapped up in appointments, time schedules, and the rigors of life to notice the beauty around us.

How much do we miss?

A man sat at a metro station in Washington DC and started to play the violin; it was a cold January morning. He played six Bach pieces for about 45 minutes. During that time, since it was rush hour, it was calculated that thousands of people went through the station, most of them on their way to work.

Three minutes went by and a middle aged man noticed there was a musician playing. He slowed his pace and stopped for a few seconds and then hurried up to meet his schedule.
A minute later, the violinist received his first dollar tip: a woman threw the money in the till and without stopping continued to walk.

A few minutes later, someone leaned against the wall to listen to him, but the man looked at his watch and started to walk again. Clearly he was late for work.

The one who paid the most attention was a 3 year old boy. His mother tagged him along, hurried but the kid stopped to look at the violinist. Finally the mother pushed hard and the child continued to walk turning his head all the time. This action was repeated by several other children. All the parents, without exception, forced them to move on.

In the 45 minutes the musician played, only 6 people stopped and stayed for a while. About 20 gave him money but continued to walk their normal pace. He collected $32. When he finished playing and silence took over, no one noticed it. No one applauded, nor was there any recognition.

No one knew this but the violinist was Joshua Bell, one of the best musicians in the world. He played one of the most intricate pieces ever written with a violin worth 3.5 million dollars.
Two days before his playing in the subway, Joshua Bell sold out at a theater in Boston and the seats averaged $100.00 each.

This is a real story. Joshua Bell playing incognito in the metro station was organized by the Washington Post as part of a social experiment about perception, taste and priorities of people. The outlines were: in a commonplace environment at an inappropriate hour: Do we perceive beauty? Do we stop to appreciate it? Do we recognize the talent in an unexpected context?

One of the possible conclusions from this experience could be:
If we do not have a moment to stop and listen to one of the best musicians in the world playing some of the best music ever written, how many other things are we missing?

I end tonight with some musical highlights from the Lion King. Thank you again Jenny, Jessica, and Mr. Padden for making this show possible for all of us tonight. Mattie loved it, it made him happy, and I left the theatre understanding why people love New York. Having access to such fine theatre up and down several city blocks is truly remarkable!

http://www.youtube.com/watch?v=GV7i0IPomMA

Monday, January 12, 2009

Monday, January 12, 2009

Quote of the day (Thanks Charlie!): Lance Armstrong, the famous cyclist, is quoted as having said, "If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell."

This morning we all over slept and getting to Sloan Kettering by 8:30am, wasn't going to happen. But we weren't too late, we arrived at 9am, after circling and circling to look for the entrance into their parking garage. Parking at Sloan is NOT intuitive at all. Now that Mattie is in a wheelchair and it is freezing out, we felt compelled to drive rather than take a taxi or walk. After spending $32 in parking we are re-evaluating that notion. But by the end of the day, it was well worth having our car to turn to.

Well some of you may remember the nightmare we had during our first Sloan Kettering visit in the Fall. I tried to go into today's visit with an open mind, but who on earth am I kidding. Sloan Kettering and I are just not well suited for each other. It is a factory filled with non-empathetic staff, who are going through the motions and view you as a burden in their day. That may sound harsh, but based on how we were treated it is quite accurate. We spent literally 8 hours today arguing and advocating. I am wiped out tonight. I will try to paint a picture of the day.

When you walk into the 9th floor outpatient pediatric oncology unit, it is like walking into chaos. Literally today hundreds of people must have come through those doors. The waiting areas are super crowded, the child life room (which reminds me of a large warehouse) was overwhelmed with kids, and don't get me started about the whole treatment area. After we checked into the hospital, we waited to be seen by Dr. Meyers (who is heading up the MTP study) so he could examine Mattie. While we waited for him, I took Mattie into the childlife room to work on some crafts. He made a lovely snowflake today. But the childlife people seem distracted and not engaged with the kids. I realize I am super spoiled with Linda at Georgetown!

Once Dr. Meyers saw us, he asked Peter and I if we had any questions about MTP. It was a strange question really because I sensed he did not want to really have a discussion with us, he just wanted us to sign the informed consent, quickly examine Mattie, and move us along. I felt as if we were taking up his precious time. At one point in the meeting he told us that MTP was approved for use in England but not in the US yet. So I asked him why. He asked me if I had enough time so he could discuss this. I told him I did, but did he? He did not really care for my response, nor did I care for his demeanor, so we were just about even with each other! I learned a valuable lesson, which of course I know on some level already, but I did not follow my gut today. First mistake. Never sign an informed consent without getting it ahead of time to read it! To give ourselves credit I blame Sloan for not sending us this form ahead of time to read over, because how on earth can we be expected to read it while Mattie is with us and bouncing around and kicking us? Okay, so after this cold interaction with the doctor, we move onto the next fun zone.... The Outpatient Treatment Bays.

We check into the treatment bay area and are assigned a nurse (who happened to be the only lovely part of the whole experience). Michaela explained to us that all the treatment bays were full and we would have to start the process in the waiting area. Lovely, surrounded by people. Good way to do blood draws. Originally we were told that Monday was just going to be a blood testing day and the actual MTP administration would happen on Tuesday. So we were surprised when we learned that blood and MTP administration were happening today. In fact, Dr. Meyers told us the process would take us 8 hours today. I couldn't grasp why until we started talking with Michaela. Michaela came over and told me she was going to insert an IV line into Mattie's arm. That was the first issue of the day. I said NO way. We purposefully got a double headed central line so Mattie would have no more needles in his life. She explained that an IV line needs to be set up so they can capture blood (from a line which is clean, since no medicine would be administered through this IV line) every hour for the next six hours once the infusion took place. I was determined if they had to take blood that they had to use the central line. Michaela wasn't sure if it was possible to use the central line so she had to call Ava, who is Dr. Meyers' nurse overseeing the experimental drug research at Sloan. Ava then let Michaela know that this wouldn't be possible, but if I really did not want to have an IV placed in Mattie's arm, we could wave out of this part of the study. Sounded fine to me, but before I could make the final decision I needed to know what was being assessed and captured in this blood test each hour, because if it would be beneficial for Mattie, we would then have to get the IV placed in his arm. I asked to see Ava but she was in another building somewhere around town, and she couldn't talk with us. I just felt like I needed concrete answers about this. Michaela did explain to me eventually that the hourly blood checks provide pharmacokinetic information (how the drug is absorbed, distributed, and changed and eliminated by the body). She said this was information that would benefit the study but wouldn't impact or help Mattie. That is all that I needed to hear.

I consider myself someone who deeply values research and the need to obtain sound data in order to investigate a research question, but today, I could care less about the research. I basically told her that I was not interested in the least in helping Sloan collect data. To me having Mattie be pricked with a needle and wait around unnecessarily for 6 hours to have blood drawn in my assessment was NOT in his best interest. Mind you he was very upset that he was stuck in the hospital today, because we originally thought we were headed for a simple blood test and then were planning on going sight seeing.

Michaela was fine with my decision, but then I started to second guess the decision. I kept thinking why on earth would they be taking blood every hour, would Mattie be missing out on something? Then I wondered were they going to be doing these types of blood draws at Georgetown during MTP administrations? I worked myself up so much, that I jumped up and called Dr. Jeff Toretsky. Poor Jeff, I caught him in a meeting and I basically asked him to leave the meeting because I needed to talk with him. Imagine that happening at Sloan? Highly unlikely! Jeff spoke with me and assured me that the blood levels they were measuring were not important for Mattie's treatment. So I felt better hearing this from a medical doctor and also knowing that Georgetown doesn't plan on doing these type of blood measures every hour with MTP administration. But do you see a big problem with all of this? Why couldn't I speak to a doctor at Sloan to ease my concerns, why do I have to call Jeff in DC to get access to medical advice? It only speaks to and illustrates the factory like atmosphere of Sloan.

Okay, so to me the morning already started off badly between our interaction with Dr. Meyers and then this blood draw controversy. I wish I could say it ended here, but it did not. Michaela then tells us that a chest x-ray has been ordered for Mattie. Peter and I asked for what reason. Apparently Sloan needs proof that the central line is placed correctly and that the infusion will occur correctly. At which point I lost it! How on earth do they think he receives chemo at Georgetown? We were smart and brought electronic copies of the thousands of scans and x-rays that have been taken of Mattie, and said they should use those. Several minutes later they came back saying the scans were fine but that it would take 2-3 days to "upload" into their system, and this had to be done before any drug administration. Well I was going to fight this and even considered calling Georgetown to have them send up documentation (because they would have accepted a letter from Georgetown certifying that the central line was indeed working and correctly placed), but I figured by the time I accomplished this, the x-ray would be over. But why on earth didn't they tell us we needed this documentation. So this the third incident. When we got to the radiology department, I went into the x-ray room with Peter and Mattie to help them set up (mind you at Georgetown I get to remain in the room with Mattie the whole time, with my lead suit on!). The technician basically threw me out of the room, and said only one parent could be in there (and apparently in her mind I was dispensable). At which point I told her that I have never interacted with a more insensitive hospital. She later came out and invited me in, but just on principle I wouldn't go in. This was the straw that broke the camel's back. After the x-ray, I went back to the oncology floor and requested to speak with a patient advocate.

All during these times, Peter was working very hard today entertaining Mattie. We both had our hands full. Peter worked non stop on all sorts of activities, while I let lose on almost every staff member possible. I felt like a pit bull today. Later in the afternoon, the patient advocate came to find me and I gave her a mouthful about our entire experience. I then let her know about our first visit in the fall as well. She was mortified. But what I find particularly troubling is that Sloan is considered one of the best cancer institutions in the country. She asked me to give Sloan another try, but I told her forget it. I want the medication today and Thursday, and then if I never see Sloan again in my lifetime, that will be too soon. The patient advocate was lovely though and she promised to address all the issues I mentioned to her. I told her that the way things were handled today were unprofessional, and it seemed like this was the first time Sloan administered MTP, because no one could tell us how the day was going to progress.

Thanks to Linda, we connected with Evan today. Evan is one of the zillion childlife people at Sloan. Linda told Evan that Mattie likes cardboard boxes. So she saved several for him. Mattie, with the help of Peter, made an enormous boxed structure, which he entitled "Air Force One." You can see the stages of its developments below. But literally they hot glue gunned many boxes together and then painted them.

I could tell all the childlife folks today were fascinated by Mattie's box creation and I got the feeling that such individual projects are NOT a usual occurrence in their room. By the way, "Air Force One" came back to the hotel with us tonight! It bearly fit in the trunk.

Well you may be asking yourself, what time did Mattie finally get his MTP infusion? Remember we got to the hospital at 9am. Mattie was not given an infusion bay (or small curtained room) until about 5pm. It was a full day and we were all exhausted by that point. Why the hold up? Well the Sloan group that approves the administration of experimental procedures on patients hadn't completed Mattie's paperwork. So we waited, and waited. I took a picture of Mattie in the infusion bay. The area is VERY small, and only the bed and two chairs fit in the space. There is no door, just a curtain between you and the hallway.

The infusion of MTP was uneventful at the hospital. They premedicated Mattie with Tylenol and Vistrol (some type of antihistamine). We left the hospital at 6:30pm so the process, once it started, was quick. We will return on Thursday for the second round. But unfortunately when we got back to the hotel tonight things went down hill.

We met up with my lifetime friend, Karen. She met us in the lobby of our hotel. When we got in the room, she gave Mattie some gifts and he opened them, but quickly got on the floor and started crawling to the bedroom. I waited a bit, but did not hear him, so I followed him in. At which point he had a meltdown. He was crying hysterically, had the chills, and was shaking. We got him into bed and tried to calm him down, but he was complaining of a massive headache. So I called Dr. Meyers. He told me to give Mattie Tylenol and if things did not get better to come back to the hospital. Mattie is not Tylenol compliant and refused to put anything in his mouth tonight. In fact, he said he was going to vomit. So instead, we resorted to massaging him, and he finally fell asleep. We hope that he wakes up feeling better, but he fell asleep by 8pm.

In addition, we noticed something odd with Mattie's left arm today. Peter was the first one to notice. Mattie is now unable to bend his arm toward his stomach. Instead, his arm looks like a chicken wing, with the arm flailing out so that his left arm looks like the letter L. I did not pay much attention to it today, since I had a host of other fires to put out, but tonight I was so concerned with what I was seeing, guess who I called? I called Dr. Bob. Bob answered and we spoke and then I put Peter on the phone, because I was too talked out from the day and wasn't even coherent at that point. Bob thinks that the prosthetic rotated within his arm, and it needs to be rotated back into place. He suggested we try to do this with pillows tonight and if we aren't successful, he will rotate it back into place when we get back to DC. Bob says this is not uncommon especially while the prosthetic is setting into place. I was relieved that it isn't a major problem, but it is disconcerting to see your child's arm looking like the letter L. Of course I blamed myself for this condition, since Mattie was playing with the blinds in our room last night, pulling the cords up and down. I figured he pulled too hard and this is the result. Fortunately Bob once again eased my concerns.

We had a visit from Goli and John tonight as well. They made us a home cooked meal which was wonderful. Goli you out did yourself, and we loved the chicken, potatoes, beans, and salad! I am also eating your cherries tonight while trying to find the energy to write this blog. Karen, Peter thanks you for the wine and I thank you for my wonderful chocolate and lotion gifts! We are blessed to have wonderful friends in NY who are looking out for us. Team Mattie extends far and wide.

I realize I wrote a lot tonight, and I appreciate you checking in and reading about our long day. I would like to end with two e-mails I received today. The first one is from my friend, Charlie. Charlie wrote, "I know you are there at Sloan Kettering asking for treatment at the place where they said they could not do anything. I hope you and Mattie shock them like a snow storm in July! They need an awakening. One should never give up on a patient who has not given up on themselves!"

The second e-mail is from a fellow SSSAS mom, who I am honored to have the opportunity to get to know. Olivia wrote, "So many times, like so many others, I think of you and am humbled by how small my concerns are in the everyday life. My prayers for strength for you and Peter and my prayers for healing for Mattie continue to find inspiration from Salesian spirituality. The spirit of 'everyday grace' that the words of St. Francis de Sales offer reminds me again and again of you and Peter. Your patience with Mattie, yourselves, the medical community, strangers you've welcomed into your life; having to perform the hundreds of ordinary, repetitive acts of caretaking, each with extraordinary love; the strength you show in the face of such ambiguity of recommendations, confusion of approaches, overload of information; how you keep your eyes on the big picture - love for Mattie and care for his body and spirit - while you must devote your hands to myriad mundane details. These themes speak to me of the power of the Browns and the faith that I pray is being nurtured in you all through all of our prayers - so often I feel that is all I can tangibly, but sincerely, offer you."

Sunday, January 11, 2009

Sunday, January 11, 2009

Quote of the day (Thanks Charlie!): "Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it." ~ Bill Cosby

Humor is a very powerful defense mechanism and really helps us deal with challenging and difficult times. I have found in the past three days I have laughed more than I have during the entire six month ordeal. I am not sure what that indicates, other than being away from the hospital environment has medicinal value!

We had every intention to leave the house and get on the road at 10am today. Well that just did not happen. Peter and I did not get to bed until around 3am. Between packing and getting organized, not to mention work commitments (I was working to 3am and Pete past that), it was just impossible to get to sleep any earlier. But as 7am rolled around Mattie was up. I tried to finish packing this morning, so by the time we loaded the car, we did not start our trip until 11:40am. Prior to leaving, JJ (our resident Jack Russell Terrier) came by to say one last good-bye to Mattie. I think after his own house, ours is JJ's second favorite. Mattie and JJ will miss each other this week.

Before I proceed to tell you about our journey, I must first deeply thank Lana and Mirela for their incredibly generous and thoughtful care package that was delivered today. Lana is one of Mattie's preschool teachers from RCC, and Mirela is a friend and RCC parent. These ladies got together and basically stocked us up on all sorts of food products for our trip. There were homemade muffins, bread, oatmeal, chicken salad (that was incredible!!!), pulled pork with a fabulous BBQ sauce, chicken soup, macaroni and cheese, cold cuts, cheeses, drinks of all sorts, my friend Karen's favorite chocolate, treats from Hawaii, and a whole bunch of teas, ciders and coffee. How on earth do we ever thank you?! We feel very blessed to have been given such plentiful and tasty foods. Thank you Lana and Mirela, you started our trip off right, and in fact we were just too tired to leave the hotel for dinner, and we had a whole buffet of wonderful foods thanks to you!

We also want to thank Tamra and her daughter, Louise, for going to Treetop toys and putting together a travel bag of items for Mattie today. Thank you for the rubber lizards and the putty. I think those were his favorites, but we look forward to playing the game and looking at the travel book as well. That was so thoughtful of you to think about keeping him busy on the car trip up.

Mattie really did not care what he brought with him to NY, other than the blue stuffed animal dolphin he got from Abigail's birthday party. This dolphin means a lot to him and he took it to bed with him tonight as well. Mattie was very excited about his trip to NY. I think he is looking for a change of pace. Of course going to Sloan tomorrow, doesn't start the change of pace off on the right note, but you get what I mean.

The car trip was uneventful for the most part. Mattie basically entertained himself and watched some movies, and I attempted to write an article for the mental health counseling association I work for. For most people this would probably be a very productive trip, four straight hours in a car! But not for me. Because I get motion sickness. So after an hour of working, I had to put the computer away and then get out of the car and get fresh air. A chilly 30 degrees in New Jersey will really wake you up and scare away what is ever ailing you. When I got back in the car, I decided to just stop working. The car trip itself was uneventful and seemed to go by fast, except the fact that our EZ pass to get through the tolls did not work. Of course trying to call the 1-800 number on a Sunday is a total joke. I got one recording after another. Very frustrating and they are going to have one very upset customer on the phone tomorrow.

Overall, we made it door to door in (as Pete says, who was driving) Three hours and 50 minutes, and we hit NO traffic. Totally unheard of, but we weren't complaining. As we drove into the city, and were approaching the Lincoln Tunnel this is the landscape we saw. We just couldn't get over it, the roads were empty and there wasn't even a line to get into the Lincoln Tunnel. The last time we drove to NY we waited one hour to get into the tunnel!

When we arrived at the hotel, a lovely bellman, Michael, came out to assist us. He even helped us take the wheelchair out of the car (the hotel is so close to Sloan Kettering, that the staff is accustomed to hosting cancer patients). As we were registering into the hotel, the front desk saw Mattie and asked Peter how Mattie was. When the manager heard about what we were going through she immediately upgraded our hotel room. So we are now staying in a two bedroom, two bathroom suite with a kitchen for the same price as our original room. We are very grateful to Noemi, the manager at Affinia Gardens and she even called us tonight to check in on us! A hotel with a heart! Mattie saw the room and he was very excited. The room has two balconies and he couldn't wait to go outside and see the views. Here is one of the pictures Peter took while outside with Mattie.

Mattie was pretty tired today after we checked into the hotel. He did not want to leave the room, so instead we called our friends and invited them over to the hotel. Goli and John (our former DC neighbors) came over and shared some wine, conversation, and a few games with Mattie. Mattie at one point got himself off the floor, and played his favorite game, where he puts on this scary face and chases you around the room. He calls it his "shrimp face." Why that name, well because it all began at the Japanese restaurant at the hospital after eating shrimp. The shrimp inspired him to chase Ann, and the rest is history. I snapped a picture of Shrimp Face in his NY room!

Mattie was ready to head to bed tonight at 9pm. Totally unheard of. So we helped him to bed, and performed a central line dressing change and then hooked him up to an IV. Just packing up medical supplies today for our trip was a riot. I even rigged up a way to hang an IV bag in a hotel room. I brought a wire hanger from home and Peter found a way to attach it to the sprinkler system in the room. All I know is.... it is working.

Mattie has an 8:30am appointment at Sloan Kettering tomorrow. It is unclear to me whether they are just doing blood work and an examination tomorrow, or all of this and an infusion of MTP. However, according to the protocol Mattie gets MTP twice a week, Tuesday and Thursday, so I am confused about tomorrow. Trust me, that confusion won't last long, but now I have a whole new and bigger system (Sloan!) to learn in just a few short days. Peter and I have our work cut out for us.

We had a nice time with John and Goli tonight, and we will see them tomorrow along with Karen in the evening after she gets off of work. Thanks for your good wishes for our trip and to all our DC friends, thank you for starting this trip off smoothly for us.

I end tonight's blog with an e-mail I received from our friend Julia (a fellow RCC mom). I told Julia I liked her e-mail a lot because it also acknowledges Peter's role in all of this. He does work full time (well, more like "all-the-time" as he regularly works 70+ hours a week), but his heart is always with us and he is a dedicated dad. I agree Julia, it would be easier for Peter to just check out. But like you point out this is not Peter. Julia wrote, "I love to read about your good days! Reading about your dinner together reminded me about when Dave and I sat with you (Pete) at an RCC auction a couple years ago. This was the auction where Dave got into a macho bidding war, and we "won" the Painting Room's art chest for a fairly 'outrageous' amount. Of course, it was for RCC, and Kate was thrilled to get it, and Pete said you had a similar winning the year before - planting pots and a birdbath?! Anyway, Pete was hilarious that night! Vicki, I think you were in Hawaii for a conference. Pete, I'm so impressed with how you continue to keep pace too. Not just going through the motions, but staying connected with Mattie and Vicki when it would make sense to just not. You and Vicki really are such a great couple of people. We're really glad to know you. Have a great trip to NY."

Saturday, January 10, 2009

Saturday, January 10. 2009

I received this message from my friend, Charlie today, "It is very clear from reading the blog that you and Pete have been successful beyond belief in helping Mattie achieve strength in his heart and mind to support the work that is being done on his body. His turn around in attitude tells you that it is all worth it, that even if you have some additional trips to the hospital ahead of you, that the wonderful, vibrant boy who is Mattie will make his reappearance once you are away from that environment. Have faith, we all continue to pray and to celebrate Mattie's victories!" This leads me to the Quote of the Day!

"Know, then, whatever cheerful and serene supports the mind supports the body too." ~John Armstrong

It is 10:30pm, and I have yet to pack us up for New York tomorrow. Great, no? I will get to it soon, and hopefully once I finish writing the blog, I will be inspired to pull it together. I have received several e-mails this week wishing us well on your trip to New York, but I have not made it clear to our readers why we are going. So I wanted to take this opportunity and explain. As many of you recall our last trip to Sloan Kettering was HORRIBLE! In fact, I never thought I would be heading back there again. As a recap, Sloan basically said that we should be doing pallative care for Mattie and not treat him aggressively, because no child with multifocal osteosarcoma has ever made it. Upbeat, no? The chief of surgery at Sloan said he wouldn't do limb salvaging surgery on Mattie, because he questionned the quality of life Mattie would have. I don't know, but some sort of life is better than none at all, no?! Again, thankfully we knew Bob Henshaw, who not only has talented hands, but a compassionate heart.

So what on earth could Sloan be offering us? Well there are ONLY two hospitals in the country that are approved to administer the experimental drug, MTP-PE, to osteosarcoma patients (particularly patients who are at high risk or who have lung metastases). The drug IS NOT chemotherapy, instead it is an immune system enhancer. The drug is administered twice a week, and only takes an hour to infuse. This is done for 12 weeks. There after it is administered once a week for an hour for 24 more weeks. The FDA only approves this drug to be initially administered at Sloan Kettering or MD Anderson in Texas. So geographically Sloan makes sense for us. Fortunately for us Georgetown applied for compassionate access, which means that all remaining dosages for Mattie after the initial one can be giving at Georgetown rather than Sloan. The clinical trial Mattie will be entering at Sloan is entitled, LIPOSOMAL MURAMYL TRIPEPTIDE PHOSPHATIDYL ETHANOLAMINE (L-MTP-PE): COMPASSIONATE ACCESS FOR HIGH-RISK OSTEOSARCOMA. L-MTP-PE stimulates the innate immune system, or the body's first line of defense, to kill tumor cells, and based on data from clinical studies, when used in combination with surgery and chemotherapy, L-MTP-PE reduces the risk of recurrence of osteosarcoma and improves long term survival. To learn more about MTP-PE, please visit this website: http://www.drugs.com/nda/l_mtp_pe_070723.html

It is our hope that the infusions go well, and Mattie doesn't have an adverse reaction to MTP-PE. There is a possibility he may develop fevers and rigors (chills), and if so, he may need to be hospitalized. We certainly hope the whole thing is uneventful. Will MTP-PE help Mattie? I have no idea. Frankly when I read the research literature on the drug, I was underwhelmed. But with that said, do I care what the statistics actually indicate? Or do I care if the drug could potentially benefit Mattie? After all, each patient responds differently, and we never want to look back and say, what if? What if we could have done something and did not. Considering there are NO known side effects to MTP-PE, we felt it was worth the trip. I hope this helps explain our thinking for returning to New York. We are fortunate to have support in New York. My lifetime friend, Karen is there, along with our former DC neighbors, John and Goli, and Mattie's babysitter, Emily. It will be wonderful to see them, despite my hesitation about Sloan Kettering.

As for today, Mattie had another GREAT day. Mattie was invited to Abigail Henshaw's birthday party (Abigail is Ann's youngest child)! He was very excited about this, because as you can imagine Mattie doesn't attend many parties. I was somewhat nervous about today. I was always a mother hen to begin with, but now that Mattie has cancer, I try to assess things ahead of time that may cause him distress. The only thing that eased my mind about today was I knew that Ann was running the party. But none the less, you just never know how Mattie is going to react with other kids, and my concern was would he get frustrated or upset because he couldn't do what the other kids could do. The resounding answer to this was NO! Mattie did great. He started out slow, but by the end, was full of life, shuffling around, and fit right in. He got into the spirit of the party and what was a sight to see was how the kids included Mattie. Talking about embracing differences. You all would have been impressed with these children. It seemed to me they all treated Mattie just like any other kid and of course Ann and all our RCC and SSSAS friends were right there encouraging Mattie and helping him integrate into the party.

Ann did a fabulous job today, and all her activities Mattie was able to participate in, and he really got into being a part of the Dolphin team. The party's theme, was "under the sea," and Mattie loved it. The kids sat on beach towels and worked very cooperatively. Frankly I am seeing we adults could learn a lot from the children around us. I tried to snap some pictures of all the fun, spirit, and energy at the party. Personally I think Ann worked so hard at putting activites together, that the kids were guarenteed fun.

This picture features the birthday girl, Abigail with Ann. You can see Mattie in the lower right hand corner, looking on and smiling!

I snapped a picture of Abigail with Ann and Bob as she was blowing out her candles. The cake was beautiful and creative. It was made of cupcakes frosted together. So it was very easy to plate this cake, it just meant grabbing a cupcake.

After the kids had cake, they were happy and quiet, and Ann read them a dolphin story. They were glued to the story, and I was able to capture this moment of calmness. Mattie loved the cupcake so much, he had blue frosting all over his mouth! What was particularly special about this event was the interaction between the RCC and SSSAS communities. Both of our worlds under one roof.

When the party came to an end, Mattie stayed a little later to see Abigail open up her presents. In addition, he continued to play his chasing game with Ann (the one that started at the hospital on thursday). But this time, the kids got into it as well. Tanja (a RCC and SSSAS mom and friend) was a great sport. She chased Mattie for quite some time, and she really hammed it up. Mattie loved it and he got a great work out. I snapped a picture of Mattie with his scary face trying to corner Tanja and Ann! Abigail and Mattie's friend, Sara Catherine were also joining in on the fun. Tanja's daughter, Katharina (a SSSAS student) also helped Mattie out tremendously at the party. Doing crafts with him, helping him collect candy from the pinata, and just being a big buddy. These are just highlights from today, but Katharina's kindness and that of all the children have left a lasting impression on me.

I could go on and on about today, but I better get my act together and pack. But I guess what I want to say is I know we are a part of the RCC and SSSAS communities, and today more than ever confirmed this. We may not be in school this year, but our presence and Mattie's spirit is there and I can see he is NOT forgotten. What a great gift for a parent to receive. I also thank Ann for inviting Mattie. Mattie is very fond of Abigail, and it is great they can continue their friendship. But what can I say about Ann? Here is a woman that loves my son almost as much as I do. I am learning a lot from my relationship with Ann, because I have deep respect for her and I feel that our cancer experiences have bonded us together forever in the heart and mind.

We want to thank the Peterson family for an absolutely fabulous homecooked dinner. The roasted chicken was outstanding, and Mattie ate a good portion of chicken, carrots, and potatoes tonight. Dinner was fabulous, and then Karen even baked us an apple/cranberry pie. Karen thank you for the magazines for the road and a special thank you for the chocolate supply for my trip to NY. My addiction thanks you. Mattie loved his gifts too. We have already had a sword fight, flew some planes, and will end the evening with the pop pop shark book. We also want to thank Elizabeth for the bionicles. These will keep Mattie very busy. Mattie received a wonderful shark's tooth today from Sylvie. She got this tooth on her trip to Florida, and she wanted to share it with Mattie. How special. We also want to thank Rev. Beales (chaplain at SSSAS' lower school) and Susan DeLaurentis (Director of Counseling at SSSAS) for their wonderful cards to Mattie!

I end tonight with another song for you. I learned that in good times and in bad times, you all are on my side. That is indeed what friends are for. You all enable us to keep smiling and keep shining! Enjoy Dionne Warwick's, "That's what friends are for."

http://www.youtube.com/watch?v=cv1oPvSg5G0&feature=related

Friday, January 9, 2009

Friday, January 9, 2009

Quote of the day (Thanks Beth S.!):

The art of being sick is not the same as the art of getting well. Some cancer patients recover; some don't. But the ordeal of facing your mortality and feeling your frailty sharpens your perspective about life. You appreciate little things more ferociously. You grasp the mystical power of love. You feel the gravitational pull of faith. And you realize you have received a unique gift—a field of vision others don't have about the power of hope and the limits of fear; a firm set of convictions about what really matters and what does not. You also feel obliged to share these insights—the most important of which is this: There are things far worse than illness—for instance, soullessness. ~ Journalist Tony Snow, who died of cancer in July 2008 after a three-year battle with the disease, in The Jewish World Review (2005)

I have so much to tell all of you tonight, that I had to make a list while I was writing. Mattie began his day with a nightmare that scared him so, that he woke up. His nightmares are always of the same thing, scary people are around him and hovering over him. Funny how dreams help us process our reality. In any case, Mattie got up and today I am happy to report Mattie was able to wear his old clothes again. He no longer needs adaptive pants, and he can even work his way into a pull over shirt or polo. That is a major accomplishment. I think this transition back to regular clothes and time away from the hospital has all been very beneficial for Mattie. It is giving him a better outlook on life and his situation.

At 10:30am, Mattie had a physical therapy session with Dan. Dan brought over his Wii (which is a home video game console released by Nintendo). Basically, to me, this is beyond a video game, because it provides a virtual reality type of experience where you can move your body and pretend to be a part of the video taking place. So for example, Mattie selected bowling today. He literally was standing up, holding a device and swinging his arm as if he was throwing a ball down a bowling alley. Mattie loved the whole experience, and he played a Wii guitar as well. I was hearing all sorts of classic rock music coming from downstairs! Toward the end of the session, Dan helped Mattie outside to try to ride his bicycle with the training wheels. Mattie was able to get on the bicycle, but he did not want to move. He was too scared, and then started crying. So we brought him inside and I told him each time he tries to ride it will get easier. I can only imagine how frightening being on a bicycle is when he feel that you are not in control of your body and it movements. But we will keep at it, and Peter is encouraging him to try it again on Saturday with him.

After Dan left, we had a visit from Evelyn Holm (to help you make connections to people, Evelyn is married to Coach Dave from SSSAS). In fact, Evelyn is one of the first parents I met at SSSAS. Evelyn and Dave were our Team Mattie point people for the afternoon. Evelyn brought me a lovely lunch (I loved the butternut squash soup), which I really appreciated. Evelyn also sat with me and said a lovely prayer for Mattie and for me. It is very nice to have this spiritual support and I appreciate all of you praying for me. Because prayer for me right now is not something that comes easily. I am physically and mentally worn down. I do think that prayer is important, but I am also trying to come to terms with this fundamental question, why me/us God? Not a question that can ever be answered, but one that I continue try to come to peace with. So I appreciate Evelyn helping today bridge this spiritual gap for me.

Mattie had an appointment today at Georgetown with Dr. Matt. Matt Biel is a child psychiatrist working with us on Mattie's case. I think Matt has really helped us manage Mattie's medications and his levels of anxiety and depression now are stabilized. Mattie met with Dr. Matt today for a play therapy session. Before we got to the session, Mattie was lucky enough to have two friends join him and keep us company, Coach Dave and Liza (one of our favorite hospital volunteers). We actually met Coach Dave as we were coming through the parking lot to the building where the appointment was. All three of us got a kick out of the decor of the building, a building which really needs a complete overhaul. The psych floor had brick walls and brown shaggy carpets. I am telling you if you aren't unstable when you first visited the floor, you will definitely be after such prolonged exposure. Coach Dave was telling Mattie about his trip to Georgia where he visited a turtle rescue organization. Dave even mentioned how some of the turtles needed physical therapy from their injuries. Mattie was completely fascinated. Soon there after, Liza joined us, and then it was a real treat to watch all three of them interact with each other. Liza brought Mattie several Christmas presents. Thank you Liza for the wonderful tadpole neck pillow and matching blanket, all the playdoh, and the cute duck hat and mask. Mattie, Liza, and Dave had a blast playing with this tadpole pillow. So, picture a cute tadpole, all in green, in the hands of a six year old boy who finds potty humor thoroughly hysterical. Fortunately Liza and Dave were great sports and played along. Mattie had a blast with them, and I am happy they were there, because it gave me time to fill out consent forms, insurance forms, pick up slides and scan reports from the clinic, and then to also talk with Dr. Matt after the session was over. Thanks Dave and Liza for spending your afternoon with us. It made a big difference. The ironic part about all of this, is Dr. Matt, Coach Dave, and Liza all mentioned to me that they notice a big difference in Mattie's behavior now. That he is energized, animated, and seems happy. I see Mattie each day, and grow with his daily changes, so it was wonderful to hear the perspective of people who may not have seen him for two weeks. The power of being away from the hospital is a strong and healing force.

After the therapy session, Mattie went over to Charlotte's house. Mattie was invited to see the movie, Star Wars (which he has NEVER seen before), and to have popcorn. He was so excited about this that he even told Dr. Matt about this. Integrating Mattie back into his social world is crucial, and I so appreciate others being conscious of how difficult this may be for Mattie. Ellen (Charlotte's mom) planned the perfect activity for the kids today. It was a sedentary activity, but one which got the kids to chat with each other and enjoy their time together. It was a wonderful gift. While Mattie was watching the movie, I ran out to Target because I needed to buy a few things for Mattie before we head to NY. Thank you Ellen for giving me this opportunity, and also for bringing me back teas from Harrod's in London. I can't wait to try them, and it was so nice to be thought of while you were away.

I would say this was another great day for Mattie. When he arrived home tonight, Kathie (his occupational therapist) came over. However, Kathie wasn't coming to do OT, she came to watch Mattie for us so that Peter and I could go out to dinner. Kathie e-mailed me yesterday while I was waiting for the scan results and said that she wanted to give us this gift of time together. Normally I would have said no, because I don't like troubling people, but instead, I jumped at the opportunity. I know Mattie is comfortable with Kathie and I also know that Peter and I deserve a meal where we are not thoroughly stressed out. When Kathie arrived, Mattie was thrilled and very excited. He had no problem saying good bye to us. Peter and I had a lovely dinner together and chatted about everything and caught up on a month's worth of information. While at dinner Peter had me laughing hysterically, so much so the table next to me was watching us. Peter and I are like night and day in the morning, in terms of our routines. I can't move an inch without first taking a hot shower, and Peter can't stand the thought of showering first without having coffee. Peter was up again until 4am working on a proposal for work, and only got about two hours of sleep. Because he was running late this morning, he proceeded to shower first before getting coffee. BAD, BAD idea! The way he described his shower this morning almost had me choking, that is how much I was laughing. He sounded dazed, confused, and with total blurry vision in the shower. In fact, I think he may have fallen asleep in the shower at one point. The moral of the story here is don't change something that works for you. If may not sound funny to you, but trust me, it could have been a scene from a sitcom episode.

When we got home, Mattie was still having a great time with Kathie. Kathie told me that Mattie was non-stop talking. He wanted to show her all his toys, puzzles, trains, and even his air craft carrier. I think he was just happy to have this time with Kathie. It was very special to see Mattie connecting with someone other than us. Thank you Kathie for this wonderful gift and for having such a special connection with Mattie. If you could have seen their initial sessions together years ago, I wonder if Kathie would have ever thought that their relationship today would be possible?

There is something I can't get out of my mind tonight. I went to the clinic today to pick up Mattie's paperwork, slides, and scan results to take to Sloan Kettering. While I was there, I bumped into a mom I had met in September. Her son has a rare form of cancer called neuroblastoma. I was surprised to see her in clinic because her son completed treatment. Well it turns out after several months away with no evidence of disease, the cancer has returned in full force. I can't tell you the look of despair, pain, and heartache on this mom's face. In fact, even the son understood what was going on, and he is only 6. This little boy was diagnosed when he was two. This boy knows the inner workings of the hospital and he knows that he has another fight ahead of him. When this mom told me what was going on, I couldn't help but experience great sadness for her and to empathize with her situation. There for the grace of God could go Mattie. I have tried to shake this image today, but it keeps popping up. The one thing I have come to understand it that as a cancer community when one of you is down, we are all down. It just magnifies the level of pain over this whole process. When I first met this little boy in clinic he was clearly not himself. He was angry, hostile, and closed off. When I met him today, he was delightful, charming, warm, and energetic (he even gave me a gift before he left made out of clay). It is heart breaking to know that this energy and life will once again be striped from this little fellow. The one positive of the clinic visit, and believe me I needed a major positive, was I bumped into Jenny.

Jenny has been working on getting us Lion King tickets for the broadway show while we are in NY. Tonight I received an e-mail from Jenny confirming the tickets. Jenny wrote, "Jessica Moore from the DC office of the Walt Disney Company was able to use her unparalleled super-sweet-talking skills to get you all 6 comped tickets to The Lion King on Tuesday evening!!" Thank you Jenny (also thank you Jessica and Mr. Padden!) for making this happen. I told Jenny that my parents used to take me to broadway musicals all the time as a child. Which is probably why I LOVE and relate many things to music. However, I have never introduced Mattie to musicals before, and I feel Jenny is helping me to carry on the family tradition. Thank you Jenny for all your support and helping us to make this a memorable trip.

I received two e-mails today that I would like to share with you. The first one is from my good friend, Lisa. Lisa and I met in graduate school, and though she no longer lives nearby, she e-mails me all the time with supportive and hopeful messages which are greatly appreciated. Lisa wrote, "Yesterday and today, I celebrate for you, Mattie, and Peter. This IS wonderful news. But when I read your blog last night after class I read two things that I am celebrating. One, is the outcome of yesterday's scan; and two, the comment by the docs that the medicine--figuratively speaking--over the past two weeks that YOU and PETER are giving Mattie is working. Out of everything you have ever written on the blog, that is the most magnificent news, i.e., that an outsider can see progress in Mattie not only in his physical condition but in his psychological stance. As you know BOTH are equally important. In a nutshell, what it said to me is you and Peter are helping Mattie have a quality of life and hardiness (and some joy) as he and you all move through this "getting better" period. Vicki THAT comment from the doctor is a huge point that I hope you too will celebrate along with the other outcomes from yesterday."

The second e-mail is from a friend and RCC mom. Beth wrote, "You 3 remain in my thoughts and prayers each day. I fell off the blog wagon for a few weeks in November when one of my best friends suddenly and unexpectedly lost her teenage son. Although I was very busy and consumed with her and her family, yours was never far from my thoughts and at that time it seemed I was praying day and night for so many things -- Mattie included. What I learned last month was that each day is a gift - as I know you already know. And, that the little things are not important. What's important is that each and every day you tell those around you that you love them. You tell those around you that they are important and you go to bed each night thinking about those moments where there were smiles, not the moments that tried our patience. Your blog has taught so many of us these wonderful life lessons and I know that you are always thanking everyone for what they are doing, but I want to THANK YOU for sharing your journey with us and allowing us to learn something from you. Charles continues to be awestruck by Mattie's Lego creations and thinks Mattie is so cool, because Charles has just not yet mastered Legos. It is interesting to me that although Charles has not seen Mattie in almost 2 years, Mattie apparently made such an impression on him that he does still remember and talks about some of the things they did together at RCC. He talks about him as if he just saw him last week and I must tell you that Mattie and Zachary are the only ones he talks about unprompted by photos or some such memory jogger. To you that should again remind you of Mattie's power with others and how wonderful he is."

I want to end tonight by highlighting two fundraising opportunities that are in the works to support Mattie. The first one is a recipe treasury which will be unveiled in the spring during Mattie's Osteosarcoma walk. I invite you to read the message sent to you by Liza May (a friend and upper school mom at SSSAS). Liza is a fabulous cook herself and when she brainstormed this idea, I was very excited by its possibilities. Thanks Liza and the other 12th grade moms for working on this fundraiser.

Hi to all Team Mattie members and supporters of the Brown Family -

When talking with Vicki during the holidays and then reading and re-reading some of her entries on the blog, it is clear that Vicki, Pete and Mattie have been provided with some wonderful lunches and dinners by so many of you. Vicki speaks so lovingly of the delicious meals - the treasured recipes, scrumptious sweet treats, elegant entrees, yummy breads and lots of delectable chocolate items. It dawned on me that it would be wonderful to gather all of these recipes plus some of the stories and quotes in a book to share with each other. It would be a real treasure for all of us and something that we will all cherish. More importantly, I'd like it to be a fundraising item as part of the Walk in the spring that Liz Chiaramonte is organizing.

Right now, I can envision it as:

Mattie's Menus

or

Sharing Mattie's Menus

A treasury of recipes, sweet thoughts & memorable quotes


I think that it could be produced for a nominal amount of money by designing it as a half size copy with the pages copied with a hard cover with a spiral binding. I'm going to look into possible printers, copiers and options available.

If you would like to participate or help in any way, please contact me at may21@cox.net. If you would like to share one of your recipes of a dish or item that you provided to the Browns or a thought or quote that you shared with them, please forward it to my e-mail address above. I plan to have an organizational meeting at the end of January and will be working closely with Liz. Thanks for your support! Liza May

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The second fundraising opportunity I just learned about today from Ellen (Charlotte's mom). Her son Tyler, you may recall raised over $7,000 for Mattie hosting a bingo night at his school in the fall, has developed another fundraising event for Mattie. Well Tyler, along with several other SSSAS high schoolers, brainstormed a live music event. This event leaves me speechless on so many levels. Because it highlights the beauty that can come out of tragedy. Teens are working together, in a very committed, energetic, positive, and creative manner to support the treatment of a six year old in their community with cancer. I don't know about you, but I am thoroughly impressed. Tyler's initiative impresses me beyond belief. He and others contacted several local establishments to get them to sponsor and donate items to raffle off at the event. I am in the process of having Peter upload the flyer on the blog, but here are the details. Thank you Tyler, you are a remarkable young man, and we are grateful for all that you are doing to help Mattie. It if unfortunate that we will be in NY for this fundraiser, but it is my hope that it is well attended, and my hope is the spirit that I saw at the carwash in the Fall, is rekindled at this event. For those of you who do attend, please take pictures!

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