Saturday, January 17, 2009

Saturday, January 17, 2009

My friend Charlie has been writing me a series of e-mails to help support us through the whole Sloan Kettering experience. Today Charlie wrote, "This quote (below) is the statement that separates the good doctors from the great ones. Unfortunately, some physicians think that only the technical expertise counts and those who are patients (and that is everyone at some point) know differently. Usually nurses see this a lot more clearly than doctors do; they are trained in patient "care" not just patient "treatment." If Mattie could voice all this he would thank you for finding a place where more often than not, the staff remembers that the body and the soul are one."

Quote of the day:
"The greatest mistake in the treatment of diseases is that there are physicians for the body and physicians for the soul, although the two cannot be separated." ~Plato

We were all exhausted on friday night. In fact, I went to tuck Mattie into bed, read him some bedtime stories, and then literally fell asleep right next to him for an hour. I went to look for Peter when I awoke and he was sleeping on the couch. So I woke him up, and he went to stay with Mattie for the rest of the night. We can't leave Mattie alone at night because he needs assistance going to the bathroom and since he is connected to an IV, I learned my lesson never to leave him unattended when he has an IV attached to his central line. Mattie slept to around 7:30am, and when he woke up he was energetic. Though energetic, he did not want to leave our home the whole day. Sometimes I can break this routine but I did not have the energy to fight this battle today.

Mattie and Peter finished his Empire States building erector set that we purchased for him in NYC. Mattie was very proud of his accomplishment and this structure has now been added to his train village in the middle of our living room. I took a picture of Mattie with his finished product and Mattie even put a green alien creature on the building, reminiscent of King Kong climbing up the Empire State building.

Mattie spent the day playing and he even had a visit from JJ, our resident Jack Russell Terrier. I think the two of them missed each other while Mattie was in NY. We want to thank JP (JJ's owner) for the wonderful pizza and pasta with shrimp that he brought over for Mattie today. Mattie LOVED the shrimp and pasta, and ate four shrimp. Of course, Mattie reminded me that when he eats shrimp, he turns into super shrimp boy. Which means he chases me and uses a funny and scary face while doing this! Mattie ate very well today. I also want to thank Carrie for checking in with me several times. She was our Team Mattie support person today.

Mattie is very concerned about Patches, our calico cat. Mattie wants to know when Patches can come home from the vet. I explained to him that we can't take care of Patches now, and that the vet is taking good care of her. But then he rightfully pointed out that we have been home for the past three weeks and we could have had her home. Of course, with Mattie's treatment, I never know when he will get sick, so I just can't juggle Patches during all of this especially since she needs to be medicated twice a day. I tried to explain this to Mattie in a simple way, but I also had to break it to him that he is going back to the hospital on monday. He listened to me but he did not have much of a reaction to going back. My guess is I will hear a delayed reaction to this news soon, because who on earth wouldn't react to this news after being away from the hospital for three weeks?

This afternoon, Mattie opened up three gifts he received in the mail. The first gift was from Lana (one of his RCC preschool teachers). Lana also loves sharing the music from the 20's and 30's with her children. You may recall that I wrote about Bing Crosby's "Swinging on a star," during one of my blog entries, and Lana responded to that blog by letting me know that this song was special for her and her children too. Lana captured some of this special music on a CD she sent Mattie. The CD is by Maria Muldaur and it is entitled, "On the Sunny Side." Thank you Lana for this wonderful gift, we listened to the entire CD today, and we all loved it! Mattie was singing along to "Swinging on a star!" We also want to thank Melissa de Freitas and her family for the wonderful gifts she sent Mattie. Melissa is a friend of my friend Susan. Melissa's sons created a fantastic flip book entitled, "Mattie saves the day and defeats the evil bone bugs!" A flip book is a book with a series of pictures that vary gradually from one page to the next, so that when the pages are turned rapidly, the pictures appear to animate by simulating motion or some other change. It is a very special gift. The main character in the book is Super Mattie, who saves the day by rescuing the town from the evil bone bugs. Very creative. We also want to thank Melissa for the airplane lego and the homemade scrapbook. We look forward to filling this book in! Though we do not know Melissa personally, we want to thank her for reading our blog and for supporting us and sending Mattie such thoughtful gifts. We also want to thank Grammie and PopPop for the wonderful microscope you sent Mattie. Mattie examined a lot of things under the microscope today such as water, hair, and even his toe. The microscope kept Mattie busy for a while.

We had a lovely phone call today from our former neighbor, Malcolm. Malcolm moved to another part of DC, but he follows Mattie's blog each and every day, and he thanked Peter and I for keeping the blog up to date and for allowing others into our lives during our family's crisis. We miss Malcolm and his support, but I do see that through Mattie's illness it has brought people closer together.

We had a lovely dinner tonight thanks to Honey. Mattie loved the spinach in the lasagna and he also loved the shark's tooth you brought back for him from Hawaii. Thank you for thinking of us on your recent trip. I am enjoying the lavendar tea from Hawaii. There is nothing more soothing than the fragrance of lavendar. Thank you Honey!

I end tonight with an incredible e-mail I received from Ashley. Ashley is a friend and RCC mom. Many of you are familiar with Ashley since she is the pastor who hosted the prayer service for Mattie in the fall. Thank you Ashley for this very meaningful e-mail. You have given me a lot to think about. Ashley wrote, "I've been reflecting on a blog post from a week or two ago. You wrote about a SSSAS friend coming by and praying with you at the end of the visit. You reflected the prayer help to bridge a gap between your own spiritual space right now, especially with prayer. So my mind went into hyper-drive and I started to ponder, yet again, the dimensions of faith that I am witnessing as we visit you and as we read the blog. This is what I've come up with:
1) Mary moment: Mary, who pondered things in her heart and asked the question, “How can this be?” And didn’t really get much of an answer, and yet seemed OK with that. Now Mary, Jesus' mom, had just birthed her only child when she asked this question (and became pregnant) so Mary's life was full of life. You are asking this question with Mattie's life being in a deep level of jeopardy. But....I wonder....if Mary asked this question as she watched her only son face death. "How can this be? How could my only son face such a death?" Was Mary OK with this question as Jesus faced death and died? We don't know. But it has to be a heart wrenching question for her to ask. Mary's question, a mom with an only son, is a question that's come up in your blog.

2) Hospitality: You and Peter have let us in, welcomed all into this story. Your blog, your home, your hospital room, your WTF moments, your emotional roller coaster, your joyful moments like with the recent CT scan....we have been let, welcomed, into your life at the most challenging, heartbreaking of times. Hospitality is one of the most essential acts of living in God's way---the Hebrew scriptures and NT stories are full of followers welcoming those known and unknown into their homes, synagogues, lives to build a belief system and to welcome everyone into the circle of God's grace. This circle has no beginning and no ending. This type of hospitality is for the sake of survival, healing and the building up of community. You have let us into your life when many others have shut the door to deal with an illness in a more private way. But your way has been public and allowed a community to be built and sustained even when we have no answers to "how can this be?" The fact there is no answer to why Mattie is sick hasn't stopped you from sharing your life with us.

3) Agency and Power: As in....moral agency. Throughout this process, you have kept Mattie at the center of it all, advocating for him and his well being non-stop. Mattie has been his own agent, acting on his own behalf, as he expresses he needs, wants and concerns. When needed, you have been Mattie's voice in order witness and advocate to what it means to be a child living with cancer. You, Peter, and Mattie are all powerful and have been the change you wish to see when it comes to how a hospital cares for the health and holistic well being of a child.

4) Community: This is obvious but central. How do parents care for sick kids without help? Support? Love? Shoulders to puke and cry on? The prayer service really made this concept "flesh" for me. Forty-plus people gathered at RCC to reflect and "shore ourselves up" for the healing and supportive work that continues on. As scripture tells us, we've come this far not on our own, but with the companionship of others. We are each others keepers and no one should walk a road like this alone. The community that has been created around Mattie is the Emmanuel (the word made flesh), the incarnation, the manifestation of the Christmas Story that the work of faith is healing the sick (among other things......clothing the naked, feeding the hungry, giving the thirsty drink. This is Matthew 25).

There are more elements to your story, Vicki, but these are ones that I keep coming back to. The nurses ask you, in moments of crisis, if you want to go pray in the chapel.....your holy sanctuary is right in front of you---Mattie's room where all these elements of faith are taking place. Your sanctuary may not be the calm, quiet place that many people think of when they hear the word "sanctuary." But Georgetown is where life and faith intersect. This is where the rubber meets the road--the place where the reality of life meets the reality of faith. You may not be able to pray right now, the words may not come easily, but your actions are right there for us to see. There is no greater testimony to the prayerful, sustainable, faithful life. This may not be how you envisioned life to unfold, but it's your life, and I can't imagine God wanting to be any other place. I hope, Vicki, as this journey continues, you are able to glimpse the Holy when you can. When you can't, I hope we are able to do a bit of the revealing ourselves."

Friday, January 16, 2009

Friday, January 16, 2009

We want to thank Tyler Gehrs for organizing a successful music event fundraiser for Mattie and the community last night in Alexandria, VA. We know that several SSSAS high schoolers helped Tyler, and I want all these wonderful teens to know that our family is very grateful for their energy, their creativity, their ability to work effectively together, and their passion to help Mattie by raising funds for his treatment. Tyler goes to school in Delware, and he needed to get special permission to leave school during a week night to run this event. In addition, Tyler kept us posted throughout the night by sending us text messages. He is a special young man, and our family is very grateful for his willingness to share his talents and abilities to help our family. These teens raised around $1400 for Mattie's fund! Congratulations!

We packed up this morning and left New York City around 12:30pm. The hotel was just lovely and throughout our stay they could not do enough to help us. They made loading the car and transferring Mattie into it relatively simple. The drive itself went smoothly, and we were door to door in four and a half hours. We only hit traffic as we were approaching DC, otherwise, the roads were open and clear. It was delightful! Mattie watched movies in the car and it was pretty much an uneventful trip back. Of course getting acclimated to being home again took some doing. We had a lot to unpack and reorganize and we are slowly coming to terms with the fact that we will be in the hospital for the next three weeks coming up. According to Mattie's new protocol, he will be given methotrexate starting on monday, and then the following week (January 26) he will get his second dose of methotrexate. The week of February 2, Mattie will then get Ifosfamide and Etoposide (and you may recall that during his last dose of I and E, he became neutropenic in about four days and then remained in the hospital for 8 days recovering). We have had the luxury of being out of the hospital for three weeks now, and the thought of returning is far from pleasant. Where are we going to get the strength, courage, and energy to go back on this horrific schedule? I don't know, I don't have the answer to this question, but let me tell you it requires Peter and I to dig real deep on reserves we did not even know existed. But these are the things you do when you love someone. I feel like we are fighting a war, and we can't let up because the enemy doesn't take a vacation. In fact, if the enemy is left unchecked it comes back with a vengence!

This evening I received a call from Kathy at the Lombardi Clinic. Kathy is Mattie's nurse practitioner, and she called to let me know that Mattie is all set to receive his MTP-PE at Georgetown next week while being admitted for methotrexate (remember MTP-PE is administered over the course of 36 weeks, and I calculated this in the car coming back home today and I realize Mattie will be receiving this through July! Will this nightmare ever be over?). Kathy explained to me that Dr. Gonzalez was going to meet with Peter and I on monday to go over the informed consent for MTP-PE. Interesting no? Sloan Kettering could learn a thing or two about this, rather than flinging an informed consent on us with two seconds to read it.

Mattie enjoyed being back home tonight and started playing with his trains. He even was dancing around the living room. Peter snapped a picture of Mattie in motion singing and dancing.

We are all tired here, so I plan on signing off, but wanted to end tonight's blog with a message I received from Grace (a friend and RCC mom). Grace wrote, "I'm just catching up on reading the blogs and had to say "hooray" to you for having the chutzpa to stand up for your rights at Sloan. You are the best medicine Mattie could ever have. With you in his corner, anything is possible. And boy did you make the right decision in choosing GT as your hospital! It's a very personal decision and you were so wise to choose GT over Children's. I think Children's is a great hospital and is perfect for some, but I think Mattie just flourishes under the care at GT. And again, it's a tribute to you for advocating for Mattie so he does receive the best care possible. You are amazing. Regarding the TV in the taxis in NYC, we just went to NYC for a quick weekend over the holidays and was mortified to find TVs in the taxis. Here you have this amazing city to watch out the windows and you have this ordinary, every-day TV to distract you. Before I realized you could shut the TV off, I had to keep telling the kids, don't look at the TV, look at this amazing city around you! And I just had to respond about the Joshua Bell violin story. I don't know if you caught the original story which was a cover story in the Washington Post magazine a few years back, but it was phenomenal. In fact, the writer, Gene Weingarten won a Pulitzer for it. He's an amazing writer and wrote a beautiful story about life and taking the time to stop and appreciate it. It made me happy when I read the story because I know I would have stopped to let the kids watch a beautiful violinist. And your blog has had the same result on us; you help us stop and focus on the beautiful things in life that we don't think we have the time for, but really do."

Thursday, January 15, 2009

Thursday, January 15, 2009


Charlie wrote, "I think this quote talks about the difference between Georgetown and Sloan Kettering. It is as if the staff of Sloan Kettering is not conscious of the impact that their attitudes can have on a patient or a caretaker and thus the outcome of the situation. I am not sure how that happened; maybe they all skipped the course/seminar on relating to patients or none of the employment questions at Kettering focus on patient treatment other than the technical aspects. In that case, you get what you interview and select for."

Quote of the day: "Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around." ~ Leo Buscaglia

Mattie went back to Sloan Kettering today for his second infusion of MTP-PE. We decided to take a taxi to the hospital this morning, but guess what? There was a garbage truck blocking the street that the hotel was on, and taxis were not able to get through the block. We waited for 10 minutes, hoping that the truck would move on, but no such luck. The hotel was kind enough to have their private car take us to the hospital. When we got to the hospital, we checked in and Dr. Meyers' nurse practitioner, Joana, took us back to her office to examine Mattie and talk with us. We told her that Mattie had a reaction to MTP-PE on monday about 45 minutes after treatment. Mattie experienced chills, a slight fever, a massive headache, and was sick to his stomach. Joana asked if we tried tylenol, and I explained to her that Mattie was not compliant with taking oral medications especially when he is nauseous. I always find it particularly fascinating when doctors tell you to give your child tylenol, but forget an important question. Will your child take the medication? Children's tylenol has a terrible taste and smell, and Mattie won't take it most times it is given to him. Joana got it right away today while I was talking with her, and she decided to give Mattie Demerol through his central line right after the infusion of MTP-PE. Demerol is a narcotic pain reliever, but apparently it is also effective at combating the side effects of MTP-PE.

We were assigned a different infusion nurse today. We were expecting Michaela, but she wasn't at the hospital today. Thursdays at Sloan are much slower, than mondays. Monday is complete chaos. Despite it being more civilized today, there still wasn't room for Mattie, and he wasn't given an infusion bay (a cubicle sized room, with a curtain). Instead, he had to get connected to the MTP-PE IV right in the middle of the hallway outside the childlife room, and then we remained in the childlife room for hours while he was getting the infusion as well as during the post-infusion phase. The childlife room is an interesting experience. Certainly the room is spacious, they have interesting things within the room, but that is where it ends. Peter and I observed the childlife staff for several hours, and we both came to the same conclusion, the staff members are just disengaged with the kids. The childlife staff doesn't know how to stimulate the children, or play with them for that matter. Instead, many of them land up talking with each other, or doing crafts together without the kids. I was sitting at one of the craft tables today working with Mattie on decorating a cardboard box and there were three childlife staff members sitting at the table with us. They were creating crafts that they were going to distribute to the kids in the infusion bays. They rationalized it by saying what they made for the kids would be appreciated and the kids would feel that someone thought about them. Perhaps! That certainly is one way to think about it! But if I were a child stuck in the hospital, I would prefer one of these childlife people coming around to visit me and trying to engage me in an activity, and being offered the opportunity to make the craft myself. After all, don't we want to stimulate children to do what children do, which is play and through play learn about their world?! Well I was just astonished at how their chat session was being rationalized. We were at Sloan today from 10:30am until 3pm, so we had a lot of time to observe what was going on in that room.

Mattie handled the infusion very well. While Mattie was receiving MTP-PE, we were all getting hungry, so we sent Peter down to the cafeteria to get us lunch. Mattie is going through a hotdog phase, and therefore wanted a hotdog. In the mean time while Peter will working on gettng lunch, Mattie and I were playing with dinosaurs and then we moved onto doing a shark puzzle. While we were working on the puzzle, Peter called me and said the cafeteria did not have hotdogs, pizza, grilled cheese, or basically anything Mattie would eat now. Peter, without a coat (because the cafeteria is 9 floors below where we were and he did not want to come up just to go back down again) left the hospital to find a vendor who sold hotdogs. That technically should be easy in NYC. But Peter went to three different vendors before he was successful. By the time he came back up to the childlife room, Peter looked like a block of ice (it was FRIGID outside!). Talk about going above and beyond the call of duty for a hotdog. He is better than me! Mattie was thrilled to get the hotdog and devoured it in minutes! In addition to cheese and yogurt that I brought him. Apparently Mattie gained a couple of ounces while in NY!

At around 3pm, we left the hospital and were going to taxi back to the hotel. But when we got outside, it had stopped snowing, and the sidewalks were fine. So I suggested we walk back to the hotel. The idea of transferring Mattie out of the wheelchair, folding and lifting the wheelchair into a taxi and then repeating the reverse process once we got to the hotel was not appealing. Not having physical mobility in NYC has worn us down this week. So I convinced Peter and Mattie to walk/stroll back. Mind you it was freezing today, but I figured we are couped up all the time, and since Mattie did not want to go out today after our hospital visit, I thought we needed a change of pace. Well walking six blocks in freezing weather was a shock to our systems.

We had a slow afternoon. Mattie and Peter continued building the empire state building with the erector set, and I went to lie down for two hours. That sounds luxurious, but I have to tell you I am so exhausted, that two hours to me seems like five minutes. Goli and John called us tonight and invited us to their home again for dinner, but Mattie was not in the mood to leave the hotel. So instead we had dinner in the room, and Karen joined us. We had a wonderful dinner from an old world Italian restaurant. Peter said he got a kick out of the experience when picking up the food from the restaurant. But this is one of the things I miss about New York, good Italian food, and canolis! We had a nice dinner altogether and Peter had music from his computer playing in the background. Peter found this wonderful on line radio site called Pandora that plays music for free. Karen and I started talking about music, and somehow we all landed up listening to music from the early 80s. I guess I am still stuck in the 80s, because I prefer that music. Mattie even got a kick out of listening to the music while he was building a Mars Mission Lego.

It was a fun and relaxing evening, and we will miss Karen, Goli, and John, but we know they we will stay connected virtually. Karen and I have known each other a long time, so much so that it is easy for us to pick up our friendship from where we left off. Mattie was in a bit of a grumpy mood this evening, but is now sleeping and hopefully packing up and driving back to DC tomorrow will go smoothly.

As I sign off tonight, Peter and I are joining Tyler and all the other high schoolers in spirit as they host a fundraising music event for Mattie in Old Town, Alexandria. Peter has been text messaging Tyler this evening and Tyler gave Peter an update on how things were going. For those of you who went to this fundraising event or helped promote it, we extend our appreciation and thanks! Much thanks Tyler and the seniors at SSSAS for spearheading this!

Good night from NY!

Wednesday, January 14, 2009

Wednesday, January 14, 2009

Quote of the day (Thanks Julie R.): "If it doesn't break you it makes you stronger!" The Brown/Sardi family can"lift" mountains!

We had another slow start to the day today. Mattie spent the morning building with legos and he is really enjoying having this special time with Peter. I feel myself trying to step aside so they can have this time together, but of course never venturing too far. While I was preparing breakfast for all of us this morning my cell phone rang. I did not recognize the number, so I did not answer the phone. But then the person called back again. At which point I answered the phone. Who was it? It was Ava, Mr. Meyers' nurse practitioner coordinating the study. You may recall that I tried to talk with Ava on monday about some of the specifics of the study, and I was unable to. In addition, you probably remember that I also had a long talk with a patient advocate on monday. Clearly Ms. Banks, our advocate, was hard at work today. Ava was responding to the complaint I presented to Ms. Banks. First when Ava called, I really did not want to give her the time of day, and I think she sensed that. But she kept on talking and as she was talking I realized she was very sorry and apologetic for all of monday's mishaps. She did feel that I made the right decision to remove Mattie from the blooding testing portion of the study. After all, if I did not do this, Mattie would have been in the hospital until 11pm on monday, having his blood monitored every hour from 5pm onward. I explained to Ava my concern about the whole informed consent process and she did reveal that normally parents are given this form ahead of time to read. I told her that we weren't and in addition, since we were going from out of town there should have been better coordination and information shared with us. She agreed and promised me that this would be looked into and dealt with so such a thing does not happen again. I guess if I have spared another family from going through this, then to some extent this wasn't pointless. But I am a realist, and I also understand how systems work, and how hard they are to change. Especially a big system like Sloan. I appreciated Ava's call today, and her professionalism, and I told her so. She said she could relate to my concerns as a nurse and a mom!

Once we got packed up today, we caught a taxi and headed to the Empire State Building. On an aside, did you know that NYC taxis have TV in them? With their own Taxi network TV station! I was stunned! Seems to me there is no where in our environment where we can be silent and at peace. Any case, Mattie wanted to go to the top of the Empire State building and see the city sights. I was a little worried about crowds and lines, but clearly Janaury is the time to see NYC. There are few tourists and NO lines. We did not have to wait at all to tour the beautiful building. We purchased tickets to take us to the 86th floor and the 102nd floor. Mattie enjoyed the 1.5 minute elevator ride to the 80th floor. He noticed when you go up quickly in an elevator your ears get clogged. He was a riot to listen to in the elevator and everyone got a kick out of his sense of humor. Once we arrived on the 80th floor, we took a second elevator to the 86th floor. The 86th floor has an indoor and outdoor observation area. It was thoroughly freezing outside when we went out to observe the city, and Mattie did not want to stay out there long, but he did enjoy the views from the 102nd floor. This floor's observation area was enclosed and we took some wonderful pictures from up there. I have posted some so you could see what we saw today.

The blue ball that is glowing in this picture is the New Year's Eve ball in Times Square. The ball changes colors. We saw green, blue, and red today.

Peter and Mattie on the 102nd floor of the Empire State Building!

No trip is complete for Mattie without stopping at the gift store. So I snapped a picture of Mattie and Peter before they entered the store. Mattie found an erector set of the Empire State Building. This is his first erector set, which if you have never tried to build with this type of set, it is a challenge. It involves metal pieces, nuts, and bolts. But Mattie was determined today and you should have seen his hands in motion trying to figure this out!

The visit to the Empire State Building was just delightful. I have visited this building several years ago with Peter and Karen. It was a summer day back then and hundreds of people were on line, and it took us hours to get to a elevator to reach the top of the building. Today was so simple and the staff were so helpful to us as they navigated us around and guided us to the best places for Mattie to see certain sites. After our visit though, Mattie was tired, and he wanted to go back to the hotel. He made it about two hours today touring around and then had had it. On the one hand I totally understand where he is coming from and I know he must be exhausted, but on the other hand I was disappointed. I spend most of my days and months couped up, and I really wanted to do more today. There are hundreds of wonderful restaurants in New York, yet with Mattie you can't stop at any one of them. He is not interested in food, and expects the rest of us to share in his disinterest. So when he wanted to go back to the hotel today, I basically said to him, that if he was going back, then he had to entertain himself for a while. Because I know how he operates, he says he is tired and then you get him home and he comes to life and his energy and need to play constantly with you can wipe you out. I told him that if he had all this energy back at the hotel then that really meant he could continue sight seeing.

When we got back to the hotel he did entertain himself for a little while, and then Peter had to step in and help him with the erector set. I think many months of intense one on one play time, dealing with cancer, and a list of so many other things in the last six months have just wiped me out. Mind and spirit. So today, I decided to lie down. I called Karen, because her school is in final's week, and she was able to get out of work alittle earlier today. We were supposed to meet up this afternoon, but Karen understood that I was tired, and suggested I rest until dinner time. Which was a great idea.

At around 6:15pm, we hopped into a taxi and went to Goli and John's apartment. They are our former neighbors from DC. Karen met us at their apartment as well. Mattie enjoyed seeing their cats and he played with them and his lego sets for quite some time. Goli served Mattie spaghetti with a meat sauce and he devoured that. Pretty soon there after, Mattie fell asleep for several hours next to Peter. This was actually wonderful, because it gave us all a chance to eat dinner and talk. Goli had invited a long time friend to dinner as well. Her friend is a cancer survivor, and we really enjoyed meeting him. Goli was born and raised in Iran. We all had a fascinating cultural discussion about the differences between American and Iranian families in terms of how a family would handle and react to a child having cancer. I learned a lot from this, and I also enjoyed talking with Goli's friend about how people reacted to him having cancer and the type of support or lack there of that he received. He was explaining for the most part that many people turned away from him and did not help him, mainly because they did not know what to say or do. I told him that this is indeed the expectation I had too, but that this is far from what I am experiencing. I am still trying to come to terms with this, and can't quite explain why my reality doesn't match my expectation. But I told him that Mattie is a child with cancer, and any parent on some level can relate to this shocking news. It is a parent's worst nightmare and children being sick goes against the law of nature in some way. So to some extent that may explain the differences in how people react to cancer in adults versus children. But on the other hand, I think the difference in involvement can also be explained by the types of families RCC and SSSAS attracts. These are families who are willing to tackle the unpleasantries of life, to stand by a member of their community, and to have the courage not to walk away or forget about what we are dealing with each day. That is not easy to do, because it would be far easier to walk away and try to block out this pain.

We thoroughly enjoyed dinner tonight. Goli made us wonderful appetizers of eggplant (one of my favorite vegetables) served with olive bread and she even made homemade cheese and ham pastries for Mattie. She served us a wonderful dinner as well and made a fabulous creme brulee for dessert! Thank you Goli for spoiling us and thank you Karen for the lovely wine! By 10:30pm, Mattie woke up and he was crying that he wanted to go home. So we all popped into a taxi and headed back. Mattie came back to the hotel somewhat energized but by midnight I said enough was enough. So we got him ready for bed, gave him his medicine, and hooked him up to an IV.

As we head into thursday, Mattie has his next MTP-PE infusion tomorrow at Sloan Kettering. Wish us luck! On some level it is hard to believe this will be our last full day in New York. The time went so fast!

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."