Saturday, October 11, 2008

Saturday, October 11, 2008

We had a peaceful night of sleep on friday night. Though Mattie's sleep-wake cycle is very off. By 1am, Peter and I were thoroughly wiped out and literally told Mattie enough was enough and it was time to go to sleep. We all slept in late this morning and had a slow start to the day. Then we got ready and walked to Washington Harbor to meet Peter's family to go on a Potomac River boat ride. Originally the plan for today was to go canoeing, but Mattie told me he did not want to do that today because this frightened him. The irony is Mattie has gone canoeing many times prior to being sick, but I think he is very careful with his body these days, and in his assessment canoeing wasn't safe. So we changed plans and went on a different type of boat ride. Below you will see some pictures from our Potomac River adventure, which took us from Washington, DC to Old Town, Alexandria. We ate in Old Town and walked through a lovely park by the water.

Grandma, Mattie, Sydney, Aunt Lisa, and Will on the Matthew Hayes boat

Nat, Aunt Lisa, Mattie, Sydney, and Will at Old Town, Alexandria, VA

Monkey see, Monkey do! Mattie saw his cousins climbing a fence, and he wasn't going to be left behind. Mattie started to climb, but did not go any higher.

Right: Will, Sydney, and Mattie climbing a statue

Left: Nat, Mattie, Sydney, and Will

After having lunch in Old Town, we headed to the boat which took us back to Washington Harbor, in DC. Mattie thoroughly enjoyed being on the boat today. The water was calm and the weather was ideal. It was glorious to be out in the fresh air and to see the sights and sounds of DC. Once at the dock, we walked back home and the kids had a great time playing outside, with balls and remote control cars. It was at that point, where I had to go lie down, I am now losing my voice, and just need to rest. So Mattie went for a walk around Foggybottom with his family and they stopped at the Albert Einstein famous bronze statue in DC. See the picture below.

Will, Nat, Sydney, Mattie, and Grandma

On the electronic front, we want to thank Lorraine, Susan, Kim, and Karen for the wonderful e-cards and Jacky (thanks for the great bird video) and Allen for your e-mails. Mattie wants to thank his cat friend, Brian Boru for the wonderful VA postcard and spiderman PJs. A cat with great taste! Also Mattie and his cousins enjoyed the Dunkin Donut treats that our resident Jack Russell Terrier, JJ, brought down to our home. Thanks JJ!

Mattie has enjoyed the time with his Boston Family this weekend! We plan on doing something nice with Mattie on sunday as well, and then will of course need to get ready for another week in the hospital. It is funny being out and about and seeing people walking around with their children. I look at these folks and think, wow do you know how lucky you are? You have healthy children who can run, jump, attend school, and lead a normal everyday life. I feel this way on one hand, and but then on the other I look at Mattie, and despite having cancer and being under treatment, he appears to be so full of life, happiness, and energy. How on earth does he do it? I don't have an answer, but I sit in amazement. It is interesting, Dr. Synder and my neighbor, Kathleen, made the same comment to me this weekend. Both told me they know Mattie is 6 and of course acts like a 6 year old at times, but at other times they say he acts wise beyond his years. I have no doubt this year's experience will have an impact on Mattie, not only physically, but emotionally and psychologically.

Friday, October 10, 2008

Friday, October 10, 2008

Thank you Grace for tonight's wonderful quote:
There's an old Winston Churchill saying, "kites fly highest against the wind, not with it." Grace says, "And you epitomize that in spades." Thanks Grace!

I am not sure how else to describe today other than, it was an emotional rollercoaster ride. Important note, I don't like rollercoasters, real or imaginary! Mattie woke up this morning in a good mood, but wanted to have computer time with me before venturing out to the childlife playroom. Though I was hungry, there was no way I was going to eat anything in front of Mattie, since he needed to be NPO (one of my least favorite acronyms which in Latin translates to "nothing by mouth") for his MRI scan at 1pm. After we played together for a while, I encouraged Mattie to go to the playroom, so that he could do an activity and see some of the other children on the floor. Mattie heard that his big buddy, Brandon, was back, and that was a motivator to go to the playroom. Brandon is a delightful 18 year old fellow, who has a calming, humorous, and well grounded personality and demeanor and Mattie and I have enjoyed getting to know him and his mom this week.

Mattie was busy in the playroom, painting a small wooden locker he built. You can see the pictures below of him hard at work. I find it particularly fascinating to watch the dynamics in the room, and how the children are affected by each other. Somehow they motivate each other to take on projects and to participate and to engage in activites. The social component of this childlife playroom is so healing. There is a good spirit in the room, and though I sound like a broken record, this is such a crucial addition to the floor.

After his time in the playroom, he went back to his room and got ready to head down to the MRI scan. However, today, unlike all the other days, Mattie told Debbi (our sedation nurse/angel) that he did not need any medication to head downstairs. Typically Mattie gets so nervous about scans that he doesn't like leaving his room without being medicated. But today he elected to be awake for the whole trip down to the MRI. We were so proud of his decision and even more impressed that he was taking an active role in his medical care. While Mattie was in his two + hour MRI, my parents took me to lunch at the hospital. Food at this point was VERY necessary!

While we were awaiting Mattie's arrival back to the room from the MRI, Dr. Bob Henshaw came by to visit. I started to talk with Bob about Mattie's upcoming surgery. I found out that Mattie's first surgery of his right arm is scheduled for October 20. Yes that is correct, 10 days from today. Wow! That kind of hit me like a ton of bricks. Basically there will be NO down time for Mattie, since next week he heads to his second round of Methotrexate, which will then be immediately followed by surgery the following week. As I continued to talk with Bob, I wanted to hear his reaction to Dr. Healey's advice at Sloan Kettering. Bob mentioned a lot depends on the PET scan results from this week. Bob continued by saying if more tumors popped up while Mattie was on chemo, then he would need to reassess whether such an aggressive approach was worth pursuing. Bob delivered this news in the best possible way, but none the less this was hard to hear and soak in. I think I have been in denial about these scans. I thought the scans were going to reveal more information about the four tumors under treatment, but I never focused upon the fact that more tumors could be developing in the process, and thereby indicating that chemo wasn't working. I have a feeling Bob could tell that this perplexed me. Bob then went to a computer to see if he could look at the scans himself.

This is the beauty of having someone as qualified and experienced as Bob in our corner. Literally 15 minutes later, Bob handed me a print out and told me that everything looked good. That he evaluated the PET scans and the MRIs from thursday and he was pleased with what he saw. Or what he did not see, meaning there were NO additional tumors. When I tell you that myself and my parents landed up crying from relief, I am not kidding. So basically now I cry for any reason. I cry when I am sad, mad, upset, and happy. So if you see me crying, I am just giving you a heads up, it may not be for one specific reason, or for the reason you think. I really appreciated Bob stopping by and spending the time to give me his professional evaluation. It is moments like these that we savor and hold onto tightly.

Mattie came out of the MRI sedation like a champ today. Even faster than on thursday. He snapped out of the sedation in a good mood and somehow less disoriented and scared. In fact, within 30 minutes, he was insisting on eating. He ate pasta and a whole bag of goldfish! It was wonderful. In the midst of eating, Mattie's bloodwork results came back, and revealed that his Methotrexate level was .09, which meant that he could be released from the hospital. In order to pack up, I brought Mattie to the childlife room, where he played with Lesley for a while, until he had to come back for a vitals check and examination. Dr. Toretsky also stopped by to share with us some additional insights about the PET scan results. Positron emission tomography (PET) is an imaging test that uses a radioactive substance to look for disease in the body. The PET scan shows how organs and tissues are functioning. Dr. Toretsky showed Mattie a simplified chart which indicated that in all four tumor locations the level of glucose activity has decreased from August to October. This seems to be a positive sign that the chemo is working at killing the "bone bugs." However, with bone cancer nothing is definitive, until you actually remove the bone from the body and do a pathology on it. But on all counts today, the news we received seems to imply that Mattie's body is responding to the chemo. We appreciate the fact that Dr. Toretsky wasn't leaving for the day without informing us of these results.

While Dr. Toretsky was talking with us, we had a knock on our door. Peter's family (mom, brother, sister-in-law, and our two nephews and neice) came to visit us from Boston this weekend. Mattie was very excited to see them, and literally every family member carried out a part of Mattie's room and loaded it into our car. Fortunately Linda stored Mattie's bigger items in the playroom, so we did not have to take them home just yet. While at home, we upacked and Mattie had a good time playing with his family. You will see some pictures below. In addition, I am unveiling the FAO Schwarz Lego creation. Mattie finished it with the help of his cousins Nat and Will. I told Mattie if such a beautiful hotel really existed, I would be thrilled to stay in it.

Left: Mattie and Will

Right: Sydney (by the couch), Will, Mattie, and Nat

Mattie's Lego Creation - his special gift from FAO Schwarz

On our way out of the hospital tonight, we had a lovely visit from Dean Janet Heddesheimer from GW. I fondly remember Janet and I talking about our sons, who have a lot in common, when I was a student at GW. Janet has been incredibly supportive of Mattie and my family through this ordeal, and she delivered us a wonderful chinese food dinner and an unbelieveably generous Halloween treat bag. We are still opening up the gifts from the bag, but they are bringing a smile to Mattie's face! Thanks Janet, and I wish we had an actual moment to talk, but in the midst of being released from the hospital it was thoroughly chaotic.

When we got home tonight, we had a nice family dinner, and enjoyed Janet's food together, and the kids got an opportunity to play together. We look forward to this family time on saturday.

My mother-in-law, Barbara, shared with me a special card and the proceeds she raised from a "Mattie Matters" yard sale she hosted in Boston. This sale generated $5000, and it is amazing how Mattie's story has touched the lives of people in Boston as well. In addition to receiving this special gift, I also happen to like the slogan "Mattie Matters" and am working with Carrie on seeing how we can incorporate this into the Mattie wristbands that GW's Chi Sigma Iota Honor Society is creating for Mattie. Thank you Lisa and Chris for the wonderful legos, and we thank Lisa's friend, Lesley, for the three in one creator set for Mattie!

I want to thank Harriet for adding Mattie to your prayer list at the Grace UM Church in Millsboro, DE and to our cousins Maria and Peter for sending Mattie a special little angel to watch over him. I leave you tonight with two e-mails I received today. The first one is from a person I have never met, but he lost his dear son to Osteosarcoma, and now he has found the inner strength SOMEHOW to walk this path again with us. Bill read my blog yesterday, and he sent me a funny e-mail today. He suggests I get "crime scene" tape and place it all over Mattie's hospital door. He figured that would cause a person to think twice before entering so we could get some rest! The second e-mail is from our friend Grace. Grace wrote, "You and Peter are such a wonderful team together. Of course, I always knew this; whenever I saw you together, you complemented each other so well. But they always say people's true colors come out when in crisis, and your wonderful, nurturing, kind ways remain the same, if not elevated, now as always. Mattie is so blessed to have you as parents. In this most terrible time, I see such joy in his face. It just radiates through the photos on your blog. And this is all because of you and the wonderful environment that you create for Mattie. I see a happy little boy in these photos, and you and Peter are to be commended for providing such joy in such difficult circumstances. I had to share Christopher's thoughts with you. He is very much into Halloween this year, and last night he paused in the midst of his Halloween excitement and said, "Mommy, we should do a Halloween message and prayer for Mattie-- so he can get better." Thank you Grace and of course Christopher for thinking of Mattie!

I sign off tonight, assuring you that we are thrilled to be home for three nights. It is my goal to get rid of this cold and congestion before monday! But most importantly thank you for all your thoughts, wishes, and prayers. I feel all this support is helping and who really knows how this support is ultimately impacting Mattie's survival? Afterall, this type of support is so tremendous but not easily quantifiable. The support we receive isn't something science can understand or necessarily explain but I know it is powerful and with God and those around us, anything is possible. Today's scans prove that to me.

Thursday, October 9, 2008

Thursday, October 9, 2008

Mattie had a late rising this morning. Which was just as well since he was not allowed to eat or drink ANYTHING after 9am in order to prepare for his two hour long MRI. Ann came in this morning to sit with Mattie for a while. This was a much needed break, since I was dragging and feeling ill. I have developed a cold, sore throat, and am just feeling tired. Ann came in this morning filled with all sorts of goodies. Ranging from vanilla frosted donuts, munchins, to bags of toys and cards. When Mattie woke up, Ann took Mattie for a walk around the floor and they landed up together in the childlife playroom. They were sitting with Lesley and Whitney and were making friends with some other kids in the room. I have had the wonderful opportunity to meet some lovely families while in the childlife room. But frankly to me, today was a big old blur. Maybe it is because my head is full of fluid, or because it was a day where we had to work hard to entertain Mattie so he wouldn't focus upon the fact that he was hungry. Thank you Ann for the hot tea!

On a funny note, Jenny and I have a running joke. There is NO amount of signage I can put on Mattie's door to prevent people from entering when we are resting. While Ann was with Mattie today in the childlife room, I attempted (emphasis on ATTEMPTED) to lie down and rest my head. I had Jenny's 'do not disturb' sign on our door. Do you want to take a guess as to how many people entered the room even though the sign was very visible? If you guessed four, give yourself a gold star. The first person to enter was the cleaning person, who decided to empty all my trash and bang around cans, while she could see I was trying to sleep under the covers. Now I could have started yelling, but then I wouldn't get my trashed picked up for the rest of the day. So I let it go. But after the fourth interruption, I gave up! I headed back to the childlife playroom, and Lesley literally decided to create an octagon shaped stop sign in red that she attached to Jenny's sign and put it on Mattie's door. When Jenny and I were headed back to the room and we were in the hallway, we could observe someone at Mattie's door. This fellow proceeded to knock on the door and walk in. With that Jenny surveyed him and asked him if he saw the STOP sign, and whether he thought the sign did not apply to him. You had to be there to truly get the humor to this whole scene. To me it is a study in human behavior. No one reads signs, we sometimes work on instinct.

This brings me to the next point. Scheduling a six year old for scans in the afternoon is like sheer punishment, especially when we have finally turned a corner and Mattie is willing to eat. Holding Mattie back from eating food until his MRI at 1:45pm was hard. Thankfully though Mattie had great distractions such as Ann, Jenny, Linda, Whitney and Lesley. In addition, Susan, the story lady, came in today and acted out a story she wrote herself. Mattie played the prince. My mom played the queen, and I was the Witch in the story. Very fitting based on my mood! Mattie then headed back to his room, and got ready for his MRI. Linda came down with us to the MRI procedure, since Mattie needs as much distractions as possible, since he gets scared when he sees the intimidating MRI machine. Linda was great, and her whole childlife team tried super hard today to make sure they knew how Mattie was doing throughout the two hour long procedure. Lesley (one of Linda's interns) met Mattie after the MRI was over and was with him as he was wheeled back to the PICU. However, some of you may recall my harrowing three hour nightmare on tuesday when Mattie was recovering from being sedated from a PET scan. Well today went much smoother, because he was given Versed to help him transition out of his propofol sedation. It was a night and day difference. He still was crying and groggy for about 90 minutes, but he wasn't agitated and hysterical.

When Mattie finally recovered from sedation he was ready to eat. However, there was no food for Mattie. I am not sure what is going on with the hospital kitchen, but Mattie received NO food yesterday and then did not get a dinner tonight. Rest assured that won't be happening again, since I raised such an issue over this, I had the head of the kitchen come and visit and apologize to me tonight and he brought Mattie a beautiful dinner. I think it is unfortunate that it has to come down to this, that you really need to constantly advocate and speak up on behalf of the patient. Lord knows what happens to those not being represented. Mattie had his heart set on spaghetti with tomato sauce for dinner. He wished for this the whole day. So I called Peter and I told him he couldn't come to the hospital tonight without the pasta. Peter was a major hero this evening! Mattie ate like a champ, and at 10:30pm, he is still eating.

So as we head into friday, we are awaiting Mattie's methotrexate level to continue to fall. It is .27 now, and it has to be .1 or lower to leave the hospital. Friday holds another two hour MRI at 1pm. So it will be a long day for Mattie and part of me has been so wrapped up at getting Mattie through the scans, that I haven't prepared for what the scans are actually going to be showing. I suppose we will deal with that on friday or monday as it comes.

Ann collected several gifts from other families today and brought them to the hospital. I want to thank the Doane family for their lovely Scooby Doo video collection. This is a big hit tonight. Mattie loves his cute pumpkin (things are looking like Halloween in Mattie's room!) and car stickers as well. We want to thank Susan Cooper for her amazingly generous check to the Mattie fund and for her sending along two books she authored and signed for Mattie. We would also like to thank the Singh Family at RCC for their contribution to the Mattie fund. It is amazing how we are all connected through RCC, even if we do not directly know each other. Ann also told me that Siobhan Starrs hosted another successful bake sale at last weekend's soccer game. Thank you Siobhan for helping and supporting Mattie.

On the electronic front, we would like to thank Coach Dave and Carey C. (she lives in PA, and her daughter has osteosarcoma too, and has located us through the blog) for your wonderful e-mails and Kim and Karen for your e-cards. We thank the Brandt family for a delicious dinner and for thinking of us. Mattie really appreciated the shake. He has asked for one all day. I guess we are back into drinking shakes.

I end tonight on a musical note. Each week, the hospital has two volunteers (Jerry and Nancy) who go room to room with a keyboard and entertain those in their rooms. The hospital has many volunteers who come by during the week, but our favorite volunteers are by far Jerry and Nancy. The last time they came we played name that tune with old movies and musicals (this occurred during our first week of chemo, and just when I thought our world was ending at that point, they lightened our spirits and restored our hope). Tonight we played name that tune to TV show theme songs. Peter and I held our own, even with shows back in the 40s and 50s. Toward the end, Mattie also played name that tune, and got all 5 songs correct! Jerry and Nancy lightened up our night, and somehow when they play music we all forget our problems. What therapy, and we don't even have to pay for it. They are just delightful and generous spirits. They stayed with us for about 90 minutes. Thanks for the fun, it is a nice way to end our day!

Wednesday, October 8, 2008

Wednesday, October 8, 2008

Thank you Camille for tonight's quote of the day!

"Courage is not the towering oak that sees storms come and go; it is the fragile blossom that opens in the snow." Alice M. Swaim

Today's quote speaks to Mattie's strength and courage. Because despite his terrible day on tuesday, Mattie was able to "blossom" and have a wonderful day today. Mattie woke up early and was motivated to get his bathrobe and shoes on, because guess who he wanted to see? You probably guessed, his pals Linda, Whitney, and Lesley. Mattie and I walked passed the playroom and childlife office but the ladies were not in yet (since it was EARLY in the morning). Mattie and I then walked to the family room where we were productive and did laundry together. At the laundry machine we met up with Brandon's (a teen with cancer) mom. We chatted for a bit and then continued our walk. Not long after, Whitney and Lesley came to find Mattie. They grabbed a hold of his IV pole, and walked him to the playroom. I stayed behind in Mattie's room but joined them about 45 minutes later. When I got to the playroom, I found Mattie playing with Lesley and Brandon. They were working very well together creating a wonderful sealife scene. Mattie molded sea creatures out of foam and model magic (literally Mattie molded a whale, sting ray, and fish). To me the playroom is a blessing and a much needed addition to the floor. As the morning unfolded, Mattie built upon his creation and created an island, bridge, and an ocean. Below you will see him hard at work.

While we were in the playroom, we had a visitor. Liza M., a SSSAS mom, who I have gotten to know through Mattie's illness. Liza and I never met until Mattie's carwash fundraiser this fall. Liza came bearing a lot of wonderful gifts. Liza's son, Tom, designs wonderful t-shirts, and he created a very soft and attractive shirt with Mattie's initials on the front. This shirt is so unique and special, we thank Tom for this artistic creation. Mattie received a wonderful plastic jack-o-lantern carrying case, filled with clay, crayons (which belonged to Tom), coloring books, stickers, and a wonderful pumpkin lantern and foam haunted house. This was the ultimate crafts gift! We are also enjoying "Hannah's" pound cake that you baked for us. Hannah is Liza's sister's mother-in-law. The cake is delicious and just makes you feel happy. I can see why Hannah gives this pound cake as a gift during special and difficult times. Thank you Liza for your lovely visit and the chance to get to know you and your family.

As time passed, Mattie was ready to go back to the room. We headed back and met up with a representative of the Candlelighters Childhood Cancer Foundation. She brought with her a lot of written resources, many of which I had already, along with some car magnetic ribbons which stated, "Conquer Kids Cancer."During our conversation, this representative mentioned my two least favorite words, she said you have to learn the "new normal." I am SO sick of this statement, that now I am not holding back and just tell people that I don't care for this statement and why.

This afternoon, I had a visit from Alison. She brought me lunch and gave me the opportunity to get out of the hospital room. She suggested I go outside. Isn't it terrible that this thought never even crossed my mind? As I was heading outside the building, I realized I hadn't been in fresh air since monday morning. It was a pleasure to sit outside. A few minutes later, Alison joined me, because Linda was kind enough to entertain Mattie so Alison and I could have lunch together. Alison also brought a happy meal for Mattie. Mattie's appetite is stellar today. He basically ate the left over spaghetti from the night before which he loved (thanks Joy!) and also continued to have a second lunch, his happy meal. It was wonderful to see, and Mattie's nutritionist and I were celebrating today! Thanks Alison for a great and tasty lunch and as always lovely conversation.

When I got back from lunch, Mattie and Linda were playing all sorts of things together. Mattie wanted to go back to the playroom with me, but before we headed out, Linda and I had to snap a picture of Mattie in his HUGE GW halloween basket. He was too adorable. Linda and I also carried Mattie for a second or two in the huge basket. He thought it was a riot.

In the picture, Mattie was barking like a dog, and actually saying "woof." Which is why you will see his tongue hanging out in the picture. But I thought you would appreciate this picture, because it will show you the scale of this huge halloween basket.

Whitney's (childlife intern) sister and mother stopped by the hospital today to see where Whitney is working. Mattie had the pleasure of meeting Whitney's family. Mattie is very fond of Whitney and Lesley, and I took a picture of Whitney today with Mattie, so you could get to know another wonderful person in the Mattie support team at the hospital.

As the afternoon, continued, I received a wonderful sign to post outside our room door that was created by Jenny. I was telling Jenny yesterday that people seem to just come in and out of my room all day despite the signs I write on the door asking for no visitors during a particular time. So Jenny, created a sign and I look forward to testing it out. Thanks Jenny for listening and for designing the sign. I find today that my sore throat is back and I feel more run down.

Back in the playroom this afternoon, Mattie and I played a rousing game of 3-D Scooby Doo, a board game given to us by Mattie's music teacher, Mr. G. Everyone in the playroom is intrigued by this game, because of the characters and 3-D nature. Denise, our social worker, met us in the playroom and she continues to be amazed by Mattie's creativity. Seems to me that Denise and others feel that Mattie is unique in many ways because he can entertain himself with these craft and creative projects. So we were enjoying watching the artist at work this afternoon.

At 4:30pm, Mattie had a special visitor, Ms. Mary Dressendorfer. Mary is Mattie's technology teacher at SSSAS, and is committed to working with Mattie each wednesday whether he is in the hospital or at home. Mary engaged Mattie for over an hour. Mattie learned ways to take videos on the computer, and to also type in sentences and have them read back to us by a computerized voice. I too was in awe of what they were accomplishing, and I think I could use several lessons from Mary to get up to speed with the 21st century. Mary is a delightful woman, who is energetic, compassionate, and has a smile that is so soothing and warm. It is no wonder Mattie loves his time with her. Mary also brought Mattie two special gifts. A game ball from the National's game played on September 2. The ball even has a dent in it from where a baseball bat clearly hit it! What a wonderful piece of memorabilia. The second gift was a CD of Mattie's spanish class singing during his kindergarten year. Something we will cherish.

On the fundraising front we want to acknowlege Vonnique Van Way (SSSAS' high school french teacher and mom of one of Mattie's kindergarten classmates). Vonnique's French Club at the school voted to give the proceeds from their first crepe sale to the Brown fund. Thank you. We also want to acknowlege a major donation from Michael Miele and Anne Esbenshade! Though we do not know you directly, we appreciate the incredible support you are giving Mattie.

Two e-mails I would like to share with you tonight. One comes from my friend Christine. Christine invited us over to her house last weekend for a BBQ. Today she wrote to me, "During your visit I was struck by the your calm demeanor with Mattie. What I mean is that you never hovered over Mattie or stopped him from running or crawling around while the kids were playing. I imagine that this hands-off approach must have been tough given Sparky and other concerns over active physical play. Whether this was your intent or not, you have great instincts because it looked to me like Mattie was very relaxed and could just be a kid, getting lost in imagination with no other worries." What a wonderful message to receive. Because in all reality it would be very easy to want to hover over Mattie, but a part of me knows that on some level he is VERY responsible. He takes care of his body and protects Sparky. I have confidence in him to do the right thing, and he has doctors and nurses poking and proding him all the time in the hospital, so during his free time, I want him to feel free and in control. However, I did not realize I was consciously doing this until Christine sent me such a nice e-mail.

The second e-mail was a funny story sent to us by Carolyn, about her daughter Ellie. You may recall Ellie is Mattie's RCC friend who took it upon herself to collect funds for Mattie by selling her art creations. Carolyn wrote, "Ellie participated in a cheer camp at Bishop Ireton this past weekend and then they “performed” with the cheerleaders at half-time. Well, Bishop Ireton happened to play Saint Stephen’s this past weekend. Needless to say, after all that I have heard about the kindness and caring you have received from the SSSAS community, I found myself cheering for the “opposing” team. When I told some of the other parents why I was cheering for SSSAS – they quickly joined in with me (to the great dismay of many of the BI families – oops). After the camp/game – Ellie also told me that she was “cheering” – but not for any particular team because she didn’t want to cheer “against” Mattie’s school." If this isn't the cutiest story, I don't know what is.

We had a wonderful dinner tonight thanks to Margaret. Thank you for fulfilling Mattie's pasta demands. Pasta is the food of choice this week. Not a bad choice! Thank you for all the goodies and tea bags! Thanks Mommy and Daddy for the NEW scooby video. A major hit tonight!

On the electronic front, thank you Susan, Lorraine, Kim, and Karen for the wonderful e-cards, and Barbsie, Ms. Pollak, Allen, and Camille for the e-mails. Thank you Audrey, we appreciate your mom putting Mattie every week on the prayer list at the United Presbyterian Church in Amsterdam, NY. I want to end tonight with a lovely message that we received from our RCC friend, Beth. Thank you Beth, because I have to imagine God is with us and we are not walking this scary path alone. Keep Mattie in your thoughts on thursday and friday. He has one two hour MRI on thursday and another two hour MRI on friday.

Beth wrote, "I'm not sure why, but Mattie and you and Pete have been very much in my thoughts today. Seemingly, normal work and life tasks today seem to be bringing me back to you. As others do, I read the blog daily and am simply astounded at your strength and faith. You are truly an amazing family. I know you get tons of emails and I try not to bog down your email with more, but I just felt compelled today to reach out. I walked into my room this morning and this picture that has been on my wall for 15 years now seemed to almost jump from the wall today and so I sat down and read the words below with you in mind."


One night a man had a dream.
He dreamed he was walking along the beach with the Lord.
Scenes from his life flashed across the sky
and he noticed two sets of footprints in the sand,
one belonging to him and the other to the Lord
When the last scene had flashed before him,
he recalled that at the lowest and saddest times of his life
there was only one set of footprints.
Dismayed, he asked, "Lord, you said that once I decided to follow you,
you'd walk with me all the way.
I don't understand why, when I needed you most,
you would leave me."
The Lord replied, "My precious child.
I love you and I would never leave you.
During your times of trial and suffering
when you saw only one set of footprints...
That was when I carried you."

"Again, I'm not sure why this spoke to me so loudly today, but I thought that by sharing with you, you may get some comfort in being reminded that you are not alone. It is through GOD that you were directed to RCC and to SSSAS and through that path that Team Mattie was formed, so for all that we do there is a reason. Today, I just wish you peace and comfort in one another and knowing that you can find strength from one another and from reaching out to others when needed."

Tuesday, October 7, 2008

Tuesday, October 7, 2008



In the midst of the kind of day we had today, I want to thank Susan S. for this wonderful quote she sent me. I am beginning tonight with it, because it is my hope that out of this nightmare will eventually come a rainbow!


Sometimes It takes a lot of rain before you get your rainbow. Don’t give up, yours is coming. Keep believing!


Last night and today are the kind of days which you don't want to repeat, much less remember. They say things happen in threes, well for us they come in fives, sixes, or sevens. Let me recall for you our monday night. Mattie's urine met its required PH by 8pm, a PH above 7.5 is necessary to start the methotrexate infusion. He was scheduled to start chemo at 9pm. At 9pm, Anita comes into Mattie's room. Anita was Mattie's nurse and she explained that she caught a pharmaceutical error in the chemo product that was prepared for Mattie. The pharmacy sent up the incorrect dosage of chemo for Mattie. Instead of chemo for a six year old child, a chemo dosage for a baby arrived. Fortunately Anita caught it. But it gets better. The hospital doesn't have a pediatric oncology pharmacist on staff during the evenings, so they had to call in the on call pharmacist, who lived an hour away. This woman had to jump into her car and head back to the city. After all of this, Mattie's chemo was finally put together by midnight, and the infusion then began. Meanwhile we debated back and forth about his anti-emetics, because they were administered to Mattie at 9pm, when we thought he was going to get chemo. These medications were in his system for 3 hours, and we were wondering whether they would be just as effective if the chemo was started at midnight. The ironic part about all of this is what we feared would happen with this chemo (vomiting) wasn't the actual problem that arose. We are learning never to expect the expected!


Mattie received methotrexate last night. Some of you will recall my previous description of this medication. It is the color of highlighter yellow. It screams toxicity, just looking at it. Any case, at some point through the night, Mattie's vitals revealed that his pulse rate was low and his blood pressure was high. It was a consistent pattern last night. By 4am, the resident wasn't happy with what she was seeing and she reported it to the attending. The attending physician ordered an EKG for Mattie to rule out heart murmurs or arrhythmia, which could cause Mattie's high blood pressure (and would be a significant issue to address). We agreed to the EKG, but didn't realize what was coming our way. At 4:30am, in walks two techs with an EKG machine. The lights all went on and they started talking to each other loudly. The whole experience frightened Mattie. They treated him like an object rather than a frightened child. Mattie landed up crying hysterically and it took a while to calm him down. If these two things weren't bad enough (the mix up with the chemo and the EKG), we were hit with a third issue. We told the staff that Mattie had a scheduled PET scan for today at 2pm (which would mean he couldn't eat or drink for 8 hours before the scan). We debated back and forth with the staff about this. There appeared to be no record of a PET scan for Mattie and at 3am, Peter and I were rummaging through our e-mail accounts looking for the written confirmation we received. Fortunately Peter found it. Each of these incidents alone could be enough for a person to tolerate, but factor in all three issues on top of our already stressed state and it does not make for a happy mix. Peter went out to the nurses desk and complained and then called up our patient advocate. We understand things go wrong, and that things happen, but the way treatments are delivered and the insensitivity to Mattie and his needs won't be tolerated. I find myself continually trying to explain my feelings to doctors, which further frustrates me. If you can't honesty get how we are feeling, and this is your profession, is it my job to educate you? Well perhaps the answer should be no, but maybe it is the educator in me. I feel like I am on a quest to help people understand the stresses Mattie and his family are under. On a side note, Mattie's EKG was normal.


Mattie woke up in a mood. He was wiped out because he was up on the hour last night. Mattie couldn't eat or drink this morning because he had to wait for his PET scan at 2pm. Because Mattie is scared of these scans, he needs to be sedated for them. Before we headed to the scans, I had a visit from Ellen (many of you know Charlotte, Ellen is Charlotte's mom). Ellen e-mailed me and could tell I was having a hard day and also could tell I wasn't planning on having lunch. So she kept me company and also brought me lunch. What a good friend! Thank you Linda for watching Mattie so I could eat and chat with Ellen! After lunch, I went down with Mattie and Linda to the PET scan. Mattie got sedated, and literally collapsed in my arms. I then waited upstairs in Mattie's room for him to come up post-PET scan. During that time, I was visited by Jenny and Elizabeth (an art therapist intern from GW!). We had a lovely conversation and I replayed last night's experience with them. They are amazingly empathetic and have a demeanor that makes you feel unjudged and appreciated. While we were talking, we could hear Mattie being wheeled down the hallway screaming. I spent the next three hours helping Mattie come out of his sedation. It was my understanding that Mattie would get versed (a type of sedation) to help him transition smoothly to being awake, but he did not get it today. Which is what accounted for the next three hours of torture. Mattie was upset, agitated, and at times inconsolable. It is a feeling of helplessness like no other as a parent. Fortunately I had experienced this before, but basically in the end, it is me who lives through these days. Doctors and nurses bounce in and out, but I am the one getting hit, being talked down to, and so forth.

I want to introduce you all to Linda's interns, Whitney and Lesley. These are two very special ladies. Whitney has been observing Mattie's interests and she brought to the hospital today 13 wonderfully shaped sharks' teeth. She hid them cleverly in a tub of sand, so that Mattie had to dig through the sand to unearth the teeth. This activity brought a smile to his face, and I felt the need to recognize this tonight in the blog, because there wasn't much that made Mattie smile today. Thank you Whitney for sharing your sharks' teeth with us and for the wonderful book about sharks.

In the midst of Mattie transitioning out of sedation, we had two visitors. It was wonderful to see Mattie's school counselor, Ms. Susan D. Poor Susan saw and experienced Mattie at his worst, but she did not skip a beat. Thank you for delivering the wonderful "scary" cards from Ms. Houghton's class. In addition thank you for the wonderful chopsticks you brought back for Mattie from your trip to San Fran. That was very special. Also we look forward to looking at Mr. Weiman's book, Flotsam! Our second visitor was our friend Joy I. Joy arrived with dinner and a gift for Mattie. Thank you for the wonderful spaghetti. This is the food of choice this week! Mattie devoured three bowls of pasta in between crying. Thank you also for the wonderful craft kit you gave us. I look forward to making paper chains with Mattie. Thank you for sitting with us through this and for watching Mattie while I spoke to his doctor for a few minutes!


We received a special phone call from Joan Holden today. Joan is the head of SSSAS. Joan is celebrating her 25th anniversary this year, as head of a well known private jk-12 independent school. It is very evident why she is so successful. She is commited to her students. Joan doesn't know our family that well, but she has made it her business to get to know us, has extended her help, and whatever SSSAS resources she can offer to assist Mattie. Thank you Joan for your call and for continuing to check in.


Mattie received two very special gifts today. An enormous halloween basket was sent to Mattie by my students in the Human Services program at GW. Thank you Honey (the program's director), Tess and Talia (two very special students) for spearheading this amazing gift. Below you will see this basket. It was stuffed with balloons, candy, and all sorts of fun trick or treating gifts. It is my hope that Mattie will share them with Linda and some of the other kids on the floor. Check it out below! I am blessed with very special students.









The other special gift came from Srinivas and Artie. Mattie loved the fishy theme. We can't wait to play goldfish and Mattie is already playing with his fishy finger puppets. They are great. Below you will see Mattie playing with his puppets.


















As I try to continually do, I would like to share two e-mails with you that I received today. It sounds silly, but sometimes these e-mails really help me pull out of the funk I can get into. One came from my friend, Charlie. Charlie said, "We continue to pray for Mattie, you, and Pete. We will have Mattie's name read as part of the service requesting healing/physical and spiritual. On Rosh Hashana we ask for names to be inscribed in the book of life for a good and healthy year and on Yom Kippur that the inscription be sealed. I pray every night that this may happen for Mattie. This definitely describes the Brown family!"Love generously, care deeply, speak kindly. Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."

The second e-mail comes from a SSSAS mom who I have recently had the opportunity to meet at Mattie's carwash fundraiser. Liza follows Mattie's story daily and her daughter who is a senior at SSSAS amazes me with her determination to inspire others to host a fundraiser for Mattie. Liza wrote, "I'm sure that I'm like others who wait each night to read your entry. It is just something that I feel that I must do every night before I go to bed. Although so many of us do not really know you, Peter, or Mattie well because our kids are older or younger or we haven't really crossed paths, we are all so totally connected to you and your family. You have created the most amazing web that connects all of us to you, to your family, especially to Mattie and to each other. I'm sure that I can speak for others when I say that I'm grateful for your candidness, your heartfelt thoughts and your gift for describing your journey with Mattie. Because of you, I have made new friends and am grateful."

On the electronic front, thank you Karen, Mr. Weiman (for the Jib Jab card of JJ dancing in High School Musical 3!), Charlotte, Kim (The Resurrection Sun will always shine down on you is a beautiful sentiment), and Susan for your wonderful e-cards. Thank you Ms. Pollak and Emily W for your e-mails. I want to thank you all for your electronic contributions as well. In these difficult times, I must say we are deeply fortunate to have such an incredible support network and I don't want you to think for one moment we take this for granted. We are very appreciative.

Monday, October 6, 2008

Monday, October 6, 2008

Peter and I have been working with Alison McSlarrow on creating an electronic way for Mattie supporters to donate to his fund on line. We have appointed Alison our director of communications and manager of Mattie's fund. For those of you who do not know Alison, you have a real treat in store for you. She has become a dear friend and she happens to be the mother of one of Mattie's SSSAS buddies, Paul. Thank you Alison for helping us secure a PO Box, a separate e-mail address for the fund, and a business phone line. So today we unfolded this new addition to Mattie's blog. You can see some information about how to donate to Mattie's fund on the left hand side of the blog homepage. Feel free to contact Alison with questions and concerns. I want to thank Stephen Naiman, the band teacher at the Fessenden School in Newton, MA for being the first electronic donor! All contributions will be used to help Mattie directly in terms of his treatment and future. I thank all my long distance blog followers who encouraged me to pursue this option on the blog.

Mattie woke up crying this morning. I was running around trying to pack and get ready for today, but I could see what took priority. So I stopped everything I was doing, and sat in his bed with him and calmed him down and chatted with him until he felt better. Mattie bounced back quickly, and then devoured enough breakfast for three people. We then headed to the hospital, registered, and checked into his room. In order to start the administration of methotrexate, Mattie's urine PH level had to be above 7. It literally took over 7 hours today for his PH level to rise. In the midst of waiting, we did NOT sit still. Mattie made a deal with Kathleen, his nurse. Mattie said he would allow her to take his vitals, if she found a way for him to go down on the clinic where Jenny and Jessie were while waiting for his urine levels to clear. That was an easy deal! While Mattie was going through his vitals check, Jenny met him in his room. They started building an ant house together. Mattie was VERY focused. Then Jenny helped Mattie and I to the clinic. I say help, because Mattie was connected to a huge IV pump and somehow it takes two people to negotiate this large piece of equipment onto an elevator. Mattie had a blast in the clinic. He played with Jenny and Jessie, and even made a new friend today, Kendall. Kendall and Mattie worked together designing Mattie's "haunted house." It was the talk of the clinic today. Below you can see some pictures of this haunted house. The house is now in our small 2x4 hospital room. But it is adorable and creative, and it made Mattie very happy.

Mattie and Jenny designed a wonderful witch out of wire! Not to mention the fantastic ghosts and the house structure itself! I call Mattie, my "little engineer."

After his time in the clinic, he came back upstairs to the PICU. But before heading to his room, he walked into the newly opened childlife playroom. It was thrilling to see this room open and operational. Linda and her interns have been working over time trying to get this room ready. But it is spectacular and a much welcomed addition to the floor. I told Linda we had the opportunity to actually talk with another family in the playroom today, rather than the two second meetings we have been having in hallways with other parents. Mattie also made another friend today, Brandon. Brandon is also a cancer patient and a teen. He is a very refined and caring young man. He was a good pal today with Mattie and even shared some marshmellows with Mattie. For some reason the playroom seems like a wonderful area for opportunities, and we look forward to our continued visits. Thank you Linda for making Mattie feel welcome there today, and for also checking on us before you left for the day. Where would we be without Linda, Jenny, and Jessie? It is ironic, Sloan has all the resources in the world, but really money and resources aren't always the solution. The type and quality of the professionals running the services are the ultimate benchmark.

Mattie is currently building another wood structure while I am typing this blog. In a matter of an hour, he will start his methotrexate infusion. (Update as of 11:00pm: the pediatric oncologist pharmacist who puts together Mattie's chemo messed it up. She measured a dosage for a baby not for a 6 year old. So needless to say, she left for the day, and lives over an hour away from the hospital. They called her back to the hospital and she is now making up the appropriate concentration for Mattie. So we have yet to start the process.) Who knows what the rest of the week will bring. It is ironic that just when Mattie started feeling better, we dose him up again with this toxic stuff. Mattie literally ate today like a champ. He had a full lunch, and ate a full plate of spaghetti with tomato sauce and a slice of pizza for dinner. This sounds trivial, but this was actually major news since he looked like he was on a starvation diet for over a week!

I had the opportunity to received two lovely e-mails today. I really reflect deeply on these e-mails I receive and many of them I use to help me through our darker moments. One is from my dear friend Amany. Amany wrote, "You are the consummate mother and one the rest of us should be measured by--You are truly incredible and everything you say and do brings tears to my eyes and joy to my heart. I really hope you publish the blog one day--you have a beautiful way of capturing the experience and emotion with such poignancy." The second e-mail was from a dear family friend, Lorraine. Lorraine has been trying to help me find a family who would adopt Patches in the short term. Patches is a very complicated and sickly cat, and she can't go to just anyone to be watched. Lorraine created a wonderful flyer about Patches, and apparently this flyer has circulated all around US Airlines. Even US Airlines knows about Patches and Mattie. Amazing! Here is a message Lorraine received today about Patches, "I sent this email [the Patches email] to my daughter Bridgette. She is a flight attendant with US Airlines and she told me that she was printing this out and putting it up in the "flight room" where all of the flight attendants and pilots hang out waiting for their flights and where they pick up their mail. Please keep me posted as to whether or not Patches has found a temporary home. My daughter would love to have a cat but her husband and my other daughter are allergic to cats BIG TIME." So, it seems Patches' story and therefore Mattie's story is circulating to all of the flight attendants and pilots who work for US Airlines!

We want to thank Patty T. for the wonderful dinner she had delivered to us at the hospital tonight. This was such a lovely surprise. We love California Pizza kitchen pizzas, and Mattie devoured pasta and pizza tonight like it was going out of style. Thank you for you thoughtfulness and generosity.

On the electronic front, thank you Karen and Kim for your wonderful e-cards, and John T., Coach Dave, and Susan for your e-mails. We want to especially thank the Commonwealth Baptist Church for their wonderful rainbow card that we received. We love the "day by day" song verse written in the card. I think the rainbow is such an appropriate symbol for our situation. To me a rainbow is a symbol of what is to come, new opportunities, new connections and healing. Of course, what is the real meaning of the rainbow? There are certainly a lot of myths out there about them, but when you have the opportunity to see one of these beautiful and unique structures in the sky again, take a minute and reflect on the important things in your life. The things that do not really need words to be appreciated.

PS: Peter wanted me to mention that the Red Sox also won tonight and beat the Anaheim Angels to advance to the American League Championship Series against the Tampa Bay Devil Rays. Go Sox!

Sunday, October 5, 2008

Sunday, October 5, 2008

Mattie woke up early today and he knew that he had a fun day in store for him. He wanted homemade waffles for breakfast, and I gladly made them. It was delightful to see him demolish an entire waffle. Mattie is busily working on his new lego set. I will keep the theme of the lego set a surprise, and once he finishes it, I will take a picture of his creation, and debut the special gift he picked out himself at FAO Schwarz. Mattie had two playdates scheduled for today, and somehow playing with friends and other children is the best medicine. Kids for the most part just act like kids, and get over physical differences quickly.

Mattie's morning playdate was with his good SSSAS buddy, Charlotte. Mattie went to Charlotte's house and had a great time with Charlotte, Charlotte's sister Shannon, and their dog, Nelson. Mattie also had lunch with Charlotte. Ellen, Charlotte's mom, accomodated Mattie with his new favorite food, a hotdog. He ate that ALL up and was energized to be out and about and in someone else's house. Thank you Ellen for a nice lunch for Peter and I too! We enjoyed the conversation as well. Below you can see Mattie and Charlotte in a tunnel tube, looking like one large caterpillar together. Ellen also officially handed me several checks that Tyler, her son, collected from the Mattie fundraiser at St. Andrew's School in Delaware. St. Andrew's generated over $7400 for Mattie. An amazing accomplishment and Tyler's thoughtfulness, ingenuity, and compassion for Mattie will never be forgotten. From our perspective, St. Andrew's is a very special place.

Mattie and Charlotte!

After lunch, Mattie was invited to attend part of Charlotte's soccer team game. Mattie used to play on an Alexandria City soccer team too, and he seemed happy to be able to attend Charlotte's game. When he arrived, he watched for a bit. He saw some of his SSSAS buddies there such as Abigail H., Niki B., Missy B., and Sylvie W. Peter and I had the chance to see some friendly faces too who we knew. Bob Weiman was at the game, and came over to chat with Mattie about a new magic trick in the works. However, after about a half an hour, I noticed Mattie started pacing the field and seemed to be distracted. I knew that was our cue to leave. He seemed visibly upset on the way home. He did not want to talk about it, but part of me wonders if he got frustrated that he couldn't play, or simply that he felt different from his friends. I am not sure, but as a parent you know when you have a hunch about how your child is feeling. Fortunately he bounced out of this mood quickly. I on the other hand came home and felt somewhat saddened. Saddened because this should be Mattie's life right now. He should be able to play outside, play soccer, and lead a normal life. But of course he can't. There are times, especially after our current week, when it is hard to accept all of this, just when I think Mattie's illness has sunk in, I feel the ramifications of his cancer on a different or more profound level.

Later on this afternoon, we headed over to Campbell's house. Campbell is another good SSSAS buddy of Mattie's. Campbell's family invited us over for a playdate and BBQ. Mattie had a wonderful time playing with Campbell and his sister, Livi. I find it interesting that even though Campbell and Mattie do not see each other everyday at school, they can easily pick up their friendship from where it has been left off. I noticed while at Campbell's house, Mattie popped his hat off of his head and was just having a good old time running around. Of course it may not mean anything other than his head was hot. But I can't help but wonder whether this was a sign that he was comfortable and did not think people would comment about his head. I know that in public Mattie always wants to wear a hat, and the hat will not come off his head even if his head is itching. So I just was fascinated by what I observed this evening. Below you will see Mattie and Campbell plotting a strategy to build a fort. Thank you Christine and James for hosting all of us and my parents. We thoroughly had a great time. Thank you for a delicious dinner and great conversation. We value your friendship. Christine also presented me with a SSSAS homecoming t-shirt that was given to Mattie by the SSSAS Association of Parents and Teachers. What a great theme this year, "Super Saints." I can't think of a better t-shirt for Mattie, since he is my amazing superhero!

Campbell and Mattie!

When we arrived home we found a package of twizzlers on our doorstep. I have a feeling JJ, our resident Jack Russell Terrier, brought these over for Mattie. Thank JJ, Mattie actually ate one! Peter and I are trying to prepare for another week in the hospital starting on monday. In order to prepare Mattie we changed his central line dressing, and also placed him on IV fluids tonight in preparation for tomorrow.

On the electronic front, we want to thank Kim, Susan, Joy, Lorraine, and Karen for the wonderful e-cards and Barbsie for the great e-mail. Thank you all for your support this week, and we appreciate all your good thoughts for this coming week.