Saturday, November 1, 2008

Saturday, November 1, 2008

Thank you Charlie for these wonderful Jewish proverbs!
"A mother understands what a child does not say."
"God could not be everywhere and therefore he made mothers."

Mattie and I had a late night on friday, and it was hard to get up this morning. I find the longer the time Mattie is away from the hospital on an inpatient basis, the more at peace he is at night. I am happy to report he has had no nightmares for two nights! I hope I don't jinx the situation tonight by reporting this good news.

Mattie began his day with a visit from Caroline Eaton. Caroline is a teacher at SSSAS, and she has graciously offered, her one of many skills, to teach Mattie to play the piano this year. Caroline is simply delightful and has a warm, caring, understanding, and patient demeanor. Perfect for Mattie, because Mattie can be moody at times. Caroline entered our home today bearing a ton of gifts. She baked these beautiful halloween brownies with candy corns on top, she gave Mattie three perfect pumpkins, and some fun glow sticks. Caroline and Mattie talked about his halloween acquisitions, of which he had A LOT to report about. The picture below illustrates how successful he was on Halloween, between the hospital and trick or treating at night. Mattie spent over an hour last night, sorting his candy on our living room floor and today he was running his own candy store out of our living room, selling his candy to us for a small price. He is very entrepreneurial because Mattie doesn't like candy for the most part, so I guess in his book, he thought why not give it to someone who really loves candy, such as myself! For just a penny, I can get several pieces of candy, so he is selling candy at bargain prices. But we are learning about reading labels, buying and selling, and negotiating through this fun game! Do you love Mattie's candy store?!


Caroline caught Mattie's attention today because she knows one of Zachary's (Mattie went to Zachary's on Halloween) neighbors. Mattie was telling Caroline about what it was like to trick or treat at this particular house, and from Mattie's description of the house and person, Caroline immediately knew who Mattie was talking about. Mattie was fascinated that Caroline would know the person he was telling her about, especially since we never gave Caroline the exact location of where we went trick or treating. It was from that point that Caroline seemed to have won Mattie over. Mattie proceeded with his piano lesson first on the electronic keyboard, and then moved to the spinet piano. While Mattie was working with Caroline, I removed myself from the situation, which is usually a helpful thing. I could hear from upstairs that Mattie was learning to play "Mary had a little lamb." It was wonderful, and he was proud of himself and came upstairs to get me so that he could show me how he was playing. Of course I had to take a picture. I am happy to report that Mattie continues to play tonight, and he and I played a duet of "Mary had a little lamb" on the piano tonight. It is fantastic, and he even attempted using his right hand to play. Thank you Caroline for your visit and your generosity of your time and spirit. See two pictures below of this special moment today.
Mattie and Caroline playing together!

Caroline and Mattie!

This afternoon, Mattie had a visit from Emily W. Emily is a former babysitter of Mattie's, and it is unfortunate that she moved back to NY. We miss her, but Mattie requested another visit with her this week before she returned home. Emily played with Mattie, and even purchased some "candy" from his store. While Emily was over, Peter caught up on work, and I went out with my parents. We had a nice lunch together, and it was just a beautiful weather day to be outside. When we returned home, Mattie and Emily took one final picture together before she headed home. Thanks Emily for helping us SO much this week. You really gave me a break!


Mattie, my mom, and I went out for a walk this afternoon to collect leaves. Mattie took a pumpkin basket and ventured out. He was on a mission to find different shaped leaves and ones with different colors. But if you are familiar with living in DC or any big city, then you know you can't escape some of the other smaller sights that are present. What am I referring to? Mice! Mattie spotted a baby mouse running around a bush outside our complex and basically was thrilled with his finding. So much so that he wouldn't let me walk another step without taking a picture of it. I unfortunately do not share Mattie's love for mice, but I honored his request. You will see a picture of "mousey" below, if you are interested, if not, just keep scrolling down. You will only see "mousey's" little body, no mouse face. I do draw the line!


Tonight, we had a family dinner together thanks to Dawnee's generous and delicious meal. Thank you so much for such a lovely and well balanced dinner. I happen to love caramel apples too, and this was a very special after dinner treat! Mattie loved the Mummy card that Dawnee gave him as well as the gifts she delivered for him. Thank you Dawnee for your kindness, it is so appreciated!

Mattie also had several visits from his canine buddy, JJ. JJ brought down a box of Dunkin Donuts for Mattie today. Our local Dunkin Donuts no longer stocks vanilla frosted donuts, and my dad and JJ have been on a mission looking for them. JJ brought down some lovely halloween donuts today which were a hit. Thanks JJ!

A special thank you and recognition goes out to Katie May tonight. Katie is a senior at SSSAS and she has spearheaded a very successful donut and bake sale at the upper school this week. She reported to me tonight that the sales generated over $1100 for Mattie's fund. Thank you Katie for your passion to help Mattie and my family. I am so appreciative of your efforts and grateful to the upper school for allowing Katie and her advisory group to plan these events.

On the electronic front, thank you Karen and Grammie (what a great moose video) for your wonderful e-mails today! I end tonight with a Youtube video that my good friend, Jen, in Boston sent me. She is sharing this journey with me from afar. Jen wrote, "A prayer for you Vicki...It's a beautiful song you may have heard before and I wish it so powerfully for you."

www.youtube.com/watch?v=WK9nt1NF7Nw&feature=related

Friday, October 31, 2008

Friday, October 31, 2008

Mattie started off his day getting dressed in his mummy costume and headed over to the hospital for a day of festivities. When we arrived, I asked Mattie where he wanted to start the Halloween party activities, in the clinic or upstairs in the childlife playroom. Contrary to my better judgment I did allow Mattie to make this choice for himself. I knew the clinic would probably be overwhelming for him because of the number of children who would be attending and gathering there, but when Mattie selected to start in the clinic I went with it. When we entered the clinic, I could already see Mattie was overwhelmed, but Jenny (thank you!) got him involved in a haunted house popsicle stick craft, and that occupied him for a bit. He then chose to get his face painted with a beautiful black cat. You will see a picture of this below.


After his face painting, my mom and I took Mattie up to the childlife playroom, because I felt that a smaller environment and less chaos would be better for him. Mattie was greeted by Linda and all his "gang" on the fifth floor of the hospital. Mattie entered the playroom, and I immediately noticed that the volunteers knew Mattie. They knew him, but I did not know them. One volunteer, named Ashley, jumped right in and started playing mouse trap with him. In addition, Sally the story lady came over and greeted Mattie and introduced him to her amazing puppet, Ignatius! Ignatius was beautiful. See the picture of Sally, Mattie, and Ignatius below.


Today's parade around the hospital was a well orchestrated event. Linda and her team did a fabulous job. Which was not an easy undertaking, because we traveled in groups, and trying to get a whole group to stay together, especially on small hospital elevators was entertaining. We all got a chuckle on the journey. See some pictures on our excursion around the hospital. Many of the offices in the hospital opened their doors to the kids and greeted them and handed out treats and gifts.

Brandon (Mattie's big buddy) and his mom, Toni! Brandon creatively transformed himself into a pumpkin!

Mattie and Whitney (childlife intern and Mattie Buddy)!

Grammie, Mattie, and Vicki along the Halloween Parade route!

Mattie and his big buddy Brandon!

Once the parade was finished, Mattie and the group headed back to the childlife playroom for a party filled with pizza, salad, cookies, and cupcakes. Mattie ate like a champ and even decorated his own cookie. As the afternoon went on, Mattie played Halloween bingo, made a spider craft, and had some good laughs. We participated in a halloween costume contest with the staff, and Mattie and I even guessed the number of jelly beans in a large cup. We came the closest to the correct answer, and we won the halloween cup. However, Mattie just wasn't himself today. He was grumpy and not in the halloween spirit at all. He refused to take pictures for the most part. Though Chris, the wonderful chemistry club fellow was coming at 3pm today to conduct another experiment, Mattie felt that he had enough by 2pm, and we packed up and headed home.

Mattie spent several hours at home, quietly playing with legos, and then when Peter came home we headed off to Zachary's house to go trick or treating. Zachary is Mattie's first preschool buddy and they are very close. Though they do not spend as much time together as they once did, they have a way of picking up where they left off. Thank you Katie for cooking us a lovely dinner, and thank you Sylvia for the wonderful Mexican food. We combined dinners tonight, and we all enjoyed it! Thanks Sylvia for thinking of us. Mattie ate a full plate of Katie's spaghetti and was ready to hit the sidewalks to collect candy (mind you Mattie doesn't like candy, but half the fun is the process, isn't it?!). While trick or treating, Zachary and some of his neighbors who went around with us, were running ahead in excitement from door to door to collect candy. However, Mattie was having a hard time keeping up. Mattie expressed his dissatisfaction and was getting upset. The beauty of what I observed next, I will try to describe. Zachary was absorbing what his mom was saying to him regarding Mattie, and also he was hearing or seeing Mattie's level of frustration. Zachary then told his neighbors that Mattie was his friend, and Mattie couldn't move as fast as them right now, and if they did not like it, they could trick or treat without him. It was almost hard to believe this dialogue was coming from a 6 year old. Because to me this was a very mature and thoughtful comment, and speaks to the strength of their relationship, a relationship that evolved over two years in preschool.

When I see Mattie interacting with his friends. It is always hard, because I know he can't do the things they are doing now, and I know this can upset him at times. But then I also notice that through these rough times, I see the beauty of those around us. Zachary's simple comment today was case in point. Friendship goes beyond one's physical abilities and limitations, and instead is definited by something much greater, such as respect, loyalty, trust, and the sheer enjoyment of being with another person. I observed this tonight. Below you will see some wonderful pictures from tonight.

Zachary (aka Indiana Jones) and Mattie (the "mummy dude," as Zachary called Mattie)

Mattie and Zachary came back home with a basket full of treats. They decided to sort through it, and were so excited by their findings they rolled in their candy!

This afternoon, I came back from the hospital in a bit of a funk. Mostly because Mattie's mood sometimes gets the best of me. My lifelong friend, Karen, in NYC, called me and provided me with her good sense of humor. We talked about how Halloween was celebrated at her school, and what costume she wore today for her students. Karen is very witty, and she dressed as "the last straw." How do you do that? Well you tape a straw box to your arm, and place one last straw in it. She had me laughing hysterically! It seems her students are into this kind of stuff, and she shared with me some of the other costumes she saw today which were a play on words. Thanks Karen for lightening my mood! Which isn't always easy to do these days.

I want to acknowledge the wonderful bake sale that is underway this week at the SSSAS upper school. Thank you Katie May for spearheading this and for keeping me posted on the amazing progress. I appreciate everyone participating in this event, and I am so happy to hear that this bake sale will be occurring during Senior Day tomorrow. I also want to acknowledge Guillermo Delgado-Aparicio, a colleague of Peter's in Peru. Guillermo and his band, the Apple Band Project, have agreed to donate the proceeds of their lastest album to the Mattie Fund. Please check out the link we posted on the blog today to learn more. Thank you Apple Band Project, your compassion, kindness, and determination to help support Mattie will not be forgotten.

I would like to share two e-mails with you that I received today. One is from my friend, Karen and the other is from Coach Dave, the head football coach at SSSAS. Karen wrote (as it related to my rollercoaster comment last night), "I wish you could return your ticket to the ride. It may not be fun but a lot of people got on the ride with you. You are not alone. We are all holding yours and pete's hand during the ride (even if it's through email)." Coach Dave wrote this to Mattie today, "I keep thinking about you and how amazing you are. I really think that you are a terrific young man. I have to tell you that you still have that gift of making people smile. Every time I see a picture of you smiling it makes me smile as well. By the way, an awful lot of Upper School students ate many donuts in your honor yesterday and today. What a perfect way to start the day. Have a donut and think about Mattie! Tomorrow, we have our last football game. Regardless of what happens, this has been my most memorable season as a coach, and I have you to thank for it. You have taught me so much about coaching by the way you handle everything in such a positive way. I want to be like you. You have made this season very special and we can’t wait for you to be with us again next season. Keep up the great work and keep fighting those bone bugs. We are all with you, our number one SAINT!" Dave, what can we say, but thank you! You are "big time." See I am learning football terminology, there is hope for me yet.

On the electronic front, thank you Karen, Susan, Kim, Brian Boru (our feline friend), and Margaret for the wonderful e-cards, and Juliet Kat (our newest tabby feline friend), and Coach Dave for the very thoughtful e-mails. Thank you Bob Weiman for the wonderful Halloween package. Mattie loved the finger flashlights and the fangs! Thank you Susan DeLaurentis for the great musical card, we don't know how you continue to find such great cards! We also want to thank Jane and Harold S. for encouraging their church to pray weekly for Mattie's recovery and for the mass they are broadcasting across the globe to pray for this recovery. We thank you all for sharing Halloween with us, and hope you and yours enjoyed the day.

Thursday, October 30, 2008

Thursday, October 30, 2008

Quote of the day (Thanks Charlie!): "Life is not a matter of holding good cards, but sometimes, playing a poor hand well." -- Jack London
I think you and Pete (and Mattie) have done this about as well as it can be done!

Well I would report to you about Mattie's sleeping pattern on wednesday night, but by now you are seeing a pattern to our week, and can probably guess how much sleep (or lack there of) we got last night! Mattie got up this morning and was very happy that he had a full day of halloween activities ahead of him at the hospital. It is ironic, the hospital has now become our safe ground, and the place where Mattie has his social connections. These are social connections that don't judge him, understand his limitations, and embrace his attitude about life.

If you have been to Georgetown Hospital, then you will completely understand what I mean, when I tell you that parking here can be very challenging. I was ready to drive the car right inside the hospital today. Everything about this process is impossible, and the only thing I could think of, is how on earth will I manage this whole car and parking situation when Mattie is immobile? I realize there is an answer and solution for every problem, but I am thinking ahead to avoid some possible challenges.

Mattie arrived at the childlife playroom, and was greeted by a whole host of medical staff and of course Linda and Whitney. Mattie was visably thrilled to see Linda. Mattie started the morning by meeting and interacting with several Georgetown University sport team members. These team members hosted a paint a pumpkin activity, and Mattie took this fun to a new level. I would like to introduce you to Mattie's new creation, "Handsome!" Handsome is a pumpkin head (which he painted) with a black cape. Below you will see some fun pictures from the morning event.
Mattie, Daniella, and Jey (Mattie's 'big brother')

Mattie and Whitney!

A close up of Handsome's head!

Daniella, Mattie, and MaryBeth! They both enjoyed working with Mattie today.

Mattie, Vicki, and Handsome!

While Mattie was involved in this morning's wonderful activity, my mom stayed with him and took pictures. I on the other hand missed out on watching Mattie having fun. Why you ask? Because I went down to the Lombardi Cancer Clinic to meet with Dr. Jeff Toretsky (Mattie's oncologist). All I can say is this was not the day I expected (mind you I am getting used to this feeling!). I thought it was going to be a fun day where Mattie could play and prepare for Halloween. However, 45 minutes before I left our home this morning I found out that Dr. Jeff Toretsky wanted to meet with Peter and I before he left on his trip to Israel. I of course could attend this LAST minute meeting, but there was NO way Peter could shift his business schedule around to meet Jeff's travel timeline. Why the meeting? Well the pathology report was in from Mattie's right humerus surgery and Jeff wanted to share the results. The report details the percentage of necrosis. Necrosis means the pathologic death of one of more cells. The percentage of necrosis in primary osteosarcoma, after the patient receives preoperative chemotherapy, is prognostic and is usually used to select subsequent chemotherapy. Mattie has been involved in a clinical trial at the hospital, which involves different treatment options post-surgery. What dictates the type of post-operative chemo Mattie will receive has a lot to do with the percentage of necrosis at the time of surgery. For example if Mattie has a percentage of necrosis of 90 or above, this would be considered a 'positive response' to preoperative chemotherapy and he would be randomized to one of two treatment options in the trial. However, if the percentage of necrosis is under 90 this would be considered a 'poor response' to preoperative chemotherapy and he would be randomized to one of two different treatment options (from the positive response treatments) in the trial. We have been VERY focused on percentage of necrosis since we began this clinical trial, after all why wouldn't we, since this is a crucial component to the study's questions and design. When Peter and I went up to Sloan Kettering a month ago, the oncologist there told us we were too concerned about the percentage of necrosis, which was totally contrary to what we had learned up until that point. Needless to say, the moment of truth was here today, where I would hear about Mattie's percentage of necrosis. In many ways I feel like I have the ability to assess situations and people rather quickly, and before I even heard the percentage of necrosis in Mattie's right arm, I could tell it wasn't going to be good, or what we hoped for. I learned today that Mattie's percentage of necrosis was 60%, which means that 40% of the tumor was viable at the time of surgery. From my limited understanding of percentage of necrosis, these levels seem to be tied into prognosis and chance of survival. It clearly also dictates postsurgery chemo options. One thing is for certain though is that Mattie needs to get back on chemo soon, because the longer he is off of it, the chances are that any lone tumor cells floating about his body can find a nice home in another location. I have a feeling this is why Dr. Bob Henshaw is advocating for Mattie's next surgery to address the remaining three tumors at one time. Mattie is unable to go back on cisplatin and doxorubicin until all the surgeries are completed. The reasoning is these drugs are too debilitating, and if Mattie goes on them, he likely heads right into neutropenia, and needs time to stabilize before he could undergo surgery. So theoretically it makes perfect sense to remove all the tumors safely at once, and then have Mattie recover and go right back on his chemo regimen. Needless to say after this meeting, my head was spinning. It is funny how you can go from despair in one minute, to anger and an unwillingness to give up the fight in the next minute. It is the cancer rollercoaster, and I would like to return my ticket because I am not enjoying the ride.

When I arrived back at the childlife playroom, Mattie was having a ball. He then took a lunch break and we visited the clinic and he had his weekly check up. Mattie is doing fine weight wise and Kathy (Mattie's nurse practitioner) was very impressed with the strength Mattie has gained back in his right hand.

After this visit, Mattie returned to the childlife playroom, escorted by Linda. Mattie had the opportunity to meet several Georgetown medical students, who volunteered their time to entertain the kids today. The students were lovely and I found out they are all interested in pediatrics. Definitely a good match, since they were delightful and FUN! Lord knows I needed fun today. Mattie made a cupcake and a halloween trick or treat bag during this afternoon's activities. All the medical students dressed up today and Brandon (Mattie's big buddy) shared his orange hairspray with the med students, and helped transform one fellow into a pumpkin. We all got a chuckle out of this. See some fun pictures below.
Thomas (med student), Brandon, Mattie, and Hannah (med student)

Mattie's cupcake creation!

Mattie was invited back to the clinic today by Jenny so that he could select a costume for Halloween. There was a room completely filled in the clinic with new costumes, donated by Hope for Henry (a local foundation named after Henry, a boy who died after a fight with cancer). Mattie originally wanted to be a haunted house for Halloween and even designed his own house out of a box, but because of his arm, I think he deduced that such a costume wouldn't be practical. So he instead selected a great and comfortable costume. It was the only one like that in the room, and it fits him like a charm. Mattie will be a mummy for Halloween. Below is a picture I took of Mattie dressed in his costume while he was riding the elevator.



Toward the end of the day, Mattie had a visit from Charlotte. Charlotte came to the hospital to decorate cupcakes as well as decorate the hallways with Mattie. Charlotte got a kick out of the med students all dressed up, and I snapped a picture of Charlotte telling one of the students about her dog, Nelson. She was imitating how Nelson barks, and I caught her in mid motion. I know how much Mattie loves playing with Charlotte, and she has been a great friend through all of Mattie's ups and downs. My mom told me that at one point while Mattie was playing with Charlotte today, Mattie got upset. When she asked him why he was upset, he told her he was upset because he can't play like Charlotte anymore. He pointed and said he couldn't physically do what she could do. It is moments like this that are bittersweet, and further confirms just how different our lives are now.

Charlotte and Mattie!

After a long day, it was lovely to come home to a tasty dinner. We want to thank Kathy Brown and her family for a lovely dinner. We all loved the pasta and Mattie can't get enough of the pumpkin icecream. Thank you for introducing us to the Dairy Godmother icecream store. The icecream is delicious. We are a big pumpkin food family! Thank you for packing it so well, it stayed cold and solid the entire time we were away today. We also loved your leaf rubbings! Thank you Julia Lee for also dropping off your homemade pasta sauce for us to use throughout the weekend. That was very thoughtful of you! It will go to good use.

I received a lovely e-mail today from Julia (a friend and RCC mom). Julia wrote, "I think it's actually awesome that you and Mattie are able to have fun and have connected with people at the hospital. One of the amazing things you have done for Mattie is create a community for him there. He's a great kid, and people are drawn to him. But you also gather people around him who he can trust and give him cues to let him know that they are worth knowing. You've continued to be a great mom in an extraordinary situation/environment. Cheers to you!"

On the electronic front, we want to thank Lorraine and Brian Boru for their wonderful e-cards. I also want to thank Ms. Debbie Pollak for all the great "how to" videos she sent along to Mattie today. This is right up his alley. Debbie is always looking out for Mattie, and it is greatly appreciated. Mattie also received a lovely halloween surprise from Caroline C (from SSSAS). Thank you Caroline for the great ghost and bat! Mattie loves them.

I end tonight with an incredible picture from last weekend's bake sale. Some of you may recall that it poured last saturday, but that did not stop Team Mattie. Thank you for going the extra mile and for supporting us through all kinds of weather.
Thank you Ann Henshaw, Carrie Barone, Ann Kim, Vonnique Van Way, Mark Dowling, Sean Dowling, and Danelle Fortune for the successful bake sale!

Wednesday, October 29, 2008

Wednesday, October 29, 2008

Mattie had another wild night of sleep on tuesday. Basically he was up every hour. We have gotten to the point, that we do not like the night hours. Mattie has FULL days, and you would think with his level of activity he would be exhausted. I think his popping up and down last night got to him this morning. When he finally fell asleep at 6am, he slept until 10:30am. He woke up crying at 10:30am, but he was willing to get up, get dressed, have breakfast, and plan his day. This morning we worked on several puzzles and he was motivated to get out his dragonfly kite (thanks John P.!)and fly it. You will see some pictures below that I captured of Mattie today. He is such an active fellow, that I fear what the near future holds for him when he can't have much use of three of his limbs.
Mattie and his dragonfly kite!

Mattie was proud of his kite taking flight! When I watch him with his kite, it is as if he feels in control, and you can see the joy in his eyes that he is getting this to work!

Mattie had a visit from JJ and JP (JJ's owner) today. JP bought Mattie a lovely pizza (which Mattie enjoyed thoroughly tonight!) and gave him some wonderful homemade marshmallows. Mattie is a happy camper, and enjoyed watching JJ outside running around and enjoying the cold. JJ and JP are an important part of Mattie's life because they add a certain amount of comfort and support to his daily routine. My parents and I took Mattie out to lunch today. Something he likes to do lately! He ate beautifully at lunch and played word scramble games, mazes, and of course the old faithful, legos. Some people don't leave home without their AMEX card, well I don't leave home without Mattie's bag of legos. I made that mistake once, and learned my lesson dearly. Mattie was in good spirits throughout lunch, and was looking forward to his computer lesson with Mary Dressendorfer (Mattie's SSSAS technology teacher) later today.

Mattie and I spent a good chunk of the afternoon going through his e-cards and photos again. He gets a lot of joy looking at these things. I also appreciate the great halloween websites many of you have sent to Mattie. When Mary arrived, Mattie was engaged and eager to learn. Mary shared a fantastic website with us that she is designing. One of the links on her website is to www.starfall.com. What a fabulous site, where Mattie was working on reading skills and having fun following the instructions to make his own jack'o'lantern. Mary worked with Mattie for over an hour, and I had the chance to go upstairs sit on my bed, and I actually turned on the TV and watched a mindless movie (well it was a Sandra Bullock movie if you must know, who I happen to love). It was glorious! Our family is enjoying the opportunity to get to know Mary. She is a very sweet, compassionate, understanding, and bright individual, and we are so happy she is in our life. See a picture of Mattie and Mary in front of Mattie's Haunted Mansion!


Mattie and I continued to fly his kite later today, until Grammie, Pop Pop, and then Daddy arrived. Thanks to the Parker family we had a lovely chinese food dinner, and Mattie loved the glow sticks, pen, and flashing wand. Thank you for these fun gifts. Mattie enjoyed the happy meal too! My parents had a lovely chat with our neighbor, Malcolm today. Malcolm, gave us a VERY generous gift card to McCormick and Schmick's. That was very thoughtful of Malcolm to treat us to a nice dinner. Malcolm is a very caring neighbor, who is a devoted caregiver to his mother, and his warm smile, compassion, and support each time we see him, means so much to us.

I would like to acknowledge Katie May tonight. Katie is a senior at SSSAS. Katie and I actually share a lot in common such as we both love to dance, we love helping other people, and specifically we both are very focused on Mattie's treatment. Katie writes to me weekly and she has visited Mattie at the hospital as well. Katie spoke with her advisor and the head of the upper school of SSSAS and brainstormed a school wide bake sale that is happening thursday through saturday to support the Mattie fund. Katie's flyer features a wonderful picture of Mattie in a superman costume. The flyer says:

Our Superhero
Mattie Brown
Please help us support Team Mattie!
Donut Sale
Thursday, October 30th & Friday, October 31st
Upper School Lobby at 7:45 am
Donut & Bake Sale
Saturday, November 1st
at the Football Game (Senior Day)
by concession stands at noon

Thank you Katie and the SSSAS upper school for helping our family!

On the electronic front thank you Brian Boru, Susan, Karen, and Lorraine for the wonderful e-cards. Thank you Susan D. for the fabulous singing card that came in the mail today! All of these musical things bring an instant smile to Mattie's face. I appreciate all of your e-mails and support. There are times I feel like I live in the twilight zone or a parallel universe. The world is revolving around me, and life is going on for everyone else, but not for us. I can see it going on, but I can't stop it or slow it down, all I can do is continue to plug away doing the best I can. Mattie is VERY much looking forward to seeing Linda tomorrow. Linda has planned some halloween activities thursday, and funny isn't it, that I would be saying we are looking forward to returning just for the day to the PICU?!

Tuesday, October 28, 2008

Tuesday, October 28, 2008

As we were trying to get Mattie to sleep on monday night, he started complaining of being itchy. He was so agitated by this he literally looked like he wanted to scratch his right arm off. We kept stopping him from scratching, but at midnight, we were at our wits end, and decided to give him a very small dosage of pain medication (NOTE: I checked in with Bob today, and he was fine with this decision!). That seemed to calm him down and the itching stopped. I think what makes Mattie's cancer situation so challenging (okay one of many things!) is that we have lost our night time routine. Mattie is up at all hours, and he has been sleeping in our room since chemo began. In addition, he no longer sleeps peacefully. He wakes up periodically throughout the night screaming, and once we calm him down, he complains of having nightmares. So understandable based on what he is dealing with, but it is SO overwhelming as a parent. Peter and I are already taxed and stressed to the limit, and then when there is no down time at night, that only compounds the pressure. Any parent will know exactly what I mean, at the end of the day, you savor a minute of quiet time to yourself. To do what you need to catch up on, or to simply take a moment to yourself. We have lost these moments in our life, and I guess we used to take them for granted before all this happened. Now we dream of a quiet night, when Mattie goes to sleep at 8pm, and we have a chance to talk with each other. For an outsider, if could appear that we are not providing Mattie with the discipline and structure he needs to go to sleep at a decent hour, but I can assure you this is far from the reality. Especially since I consider myself the queen of the Ferber sleeping method (Peter and I basically learned this method to teach Mattie to sleep through the night when he was 16 months old and there was no other way to get him to sleep effectively). So needless to say, we had another restless night of sleep on monday.

Mattie was excited today when he woke up because Emily W. (his former babysitter) was coming to spend the afternoon with him. Mattie started off the day hungry, hungry for homemade pancakes. He ate well, and then we played all sorts of games and did puzzles together. I am noticing that Mattie is trying to use his right hand more now, which is fabulous, and the swelling continues to go down in his hand. Mattie was motivated to get dressed today (thanks Alison for the great shirt!) and was eagerly awaiting Emily. Emily spent the afternoon playing with legos, building a haunted mansion, and working on a puzzle together. I wish Emily still lived in DC, because I could tell they both enjoyed each other's company today and Mattie is hoping to play with Emily again before she leaves for NY next week. Emily is a special person who deeply cares about Mattie. See some of the fun pictures of the activites they did together today.

Mattie building a lego firetruck!

Mattie transferring his "trash" from his garbage truck into his beautiful lego hotel. Poor hotel!

Mattie next to the haunted mansion he decorated with Emily today! Thanks Grandma for the great hat. Mattie loves wearing it outside and apparently inside too.

Mattie with his new puppy socks (thanks Ann!) and Emily!

While Emily was playing with Mattie, my parents and I went out to lunch. Thanks for a nice lunch and a time to vent and chat, without being censored with Mattie present. We then stopped off at Borders and had a chance to walk around the store, a foreign concept for me, since I rarely have the time to meander through a store these days. Needless to say, Mattie received some wonderful halloween things today from Grammie and Pop Pop, one of which was a halloween video that Mattie had a chance to watch part of tonight.

Later in the afternoon, Mattie felt the need to assemble kites and head outside to catch the breezes. Mattie and I both went out with a kite, big mistake. It was so windy, that our kites collided, the strings wrapped around one another, and we came back inside to try to find a way to get them untangled. We were both persistent and worked out the knots, and then Mattie went right back out to fly his kite. Below you will see the sheer joy he was having controlling his kite. No one would guess that he had major surgery a week ago.

Mattie is one with his kite!

While we were outside, Peter came home and Mattie gave him a big greeting, and we all went inside, and had a fabulous food feast thanks to the Putnam family. Grace you thoroughly spoiled us. We all ate as a family tonight, and had a good time chatting and eating. Mattie LOVED the watermelon and the chicken! We also want to thank you for the incredible gifts. One is more amazing than the other, and our family favorite was the Candy Corn Comedian (a stuffed animal, that tells hysterical jokes)! Thank you also for the great books, they are coming with us to the hospital next week! Thank you Grace for your generosity!

Mattie had a big package day! The post office must just love Mattie. Thank you Lorraine, our neighbor's Gale and Joe, Jane and Nancy, Brian Boru, and Sara Catherine and Garrett for your lovely cards and gifts! They made Mattie's day today and it was so thoughtful of all of you to think of him! We also want to thank Ernesto's (a colleague of Peter's in Peru) daughter, Mariana, for sending Mattie a wonderful Peruvian wool hat for the winter. It is a very special gift. Thank you Srinivas and Artie for the Peru t-shirt. It was nice of you to think of Mattie on your trip.

On the electronic front, we want to thank Brian Boru (our feline friend), Susan, Grammie (for the animal pictures), Lorraine, and Karen for your wonderful e-cards. Thank you for always thinking of Mattie. I was a little intimidated to come home this week post surgery, but Mattie is holding his own (despite the sleepless nights and nightmares). But a part of me is worried about what will happen after the next surgery. If all the other tumors are removed then, how on earth will Mattie function? I realize this is hopefully a short term issue, but as a mom you have to wonder about these things. Our home has already been transformed with Mattie's illness, and the reality is setting in about the more profound change that is imminent.

Monday, October 27, 2008

Monday, October 27, 2008

Mattie had a very restless night (sunday) of sleep. He slept from 11pm until 1am. But at 1am, there was no position I could put him in that he felt comfortable and at peace. In addition, he was sweating from top to bottom, and I had to open up the windows to cool him down. It wasn't until I thought about it this morning, that I think Mattie was having some type of withdrawal symptoms from the pain medication (the insomnia, restlessness, and sweating and chills - and he did not have a fever). I was besides myself last night and thoroughly exhausted, and at times I snapped at Mattie to try to go to sleep. But I quickly could see that this wakening was out of his control, and my insistence for him to sleep only made him cry and further upset. So we spent a lot to time together last night, jumping around, switching pillows, and so forth! At 6:30am, we gave up, and proceeded to officially wake up and head downstairs. Mattie and I had breakfast together, his favorite, oatmeal and homemade waffles. We had a slow morning, and then he got dressed (thanks Grandma for the great new shirts, they are working out wonderfully!), and was awaiting his buddy, Ann Henshaw.

At 11:30am, Ann came over and she brought with her loads of Mattie bake sale goodies and projects for Mattie. Ann and Mattie worked on several fun experiments, such as socks that grew when exposed to water, and a mystical garden (which illustrates the process of crystallization). Mattie and Ann also designed a halloween necklace, a halloween door hanger, and Mattie had a ball with his first whoopie cushion! Ann also brought Mattie a happy meal, with a toy car in it. Ann may not realize this, but this toy car made Mattie's day. Over the weekend, I purchased a happy meal for Mattie, with the same car, but Mattie lost a crucial part of the car at the hospital, and has been upset ever since, because he liked this car. In Ann's happy meal today, was the same car, and Mattie was thrilled! Thank you also for the big bag of Utz chips! Peter was thrilled to see this tonight when he got home from his trip. You have saved him a 4am journey at the hospital looking high and low for just the right potato chips. In addition, Ann delivered a wonderful care package to Mattie today from Katharina and Tanja. Thank you for the creative Martian Matters Alien Maker (Mattie is still working on it tonight!), the fantastic halloween flashlight, and the mazes and sticker books! Thanks Ann for coming over and giving me the time to run out and do some errands. It is very cute to see Mattie putting together the relationships he has with the Henshaw family. Afterall Ann is his buddy, Bob is Ann's husband and Mattie's surgeon, and Mattie's friend, Abigail is Ann and Bob's daughter. On some level, he knows this, but I think he finds it fascinating how each of them are connected to his life. Below you will see some fun pictures of Mattie's creations today with Ann.
Mattie's growing sock experiment! They are the cutiest puppy socks.

Mattie's mystical garden! It has the most delicate looking flower crystals.

Mattie making aliens!

Later in the afternoon, my parents and I took Mattie out to lunch. We asked him if he was up to it, and though he looked tired, he felt like he wanted to go out. He fell asleep in the car ride to the restaurant, but was animated and happy during lunch. Mattie ate an entire pizza, applesauce, and cup of vanilla ice cream. Major food consumption improvement. At the restaurant, Mattie was enjoying the halloween things my parents bought him. You can see the skull and tombstone halloween lights they got him, and he opened them throughout lunch. See the pictures below.

Mattie with his halloween gear!

Mattie, Grammie, and Pop Pop!

On the ride home from the restaurant, I fell asleep! Don't worry I wasn't driving! My dad was driving, but I think not having any sleep last night did not help my already depleted level of sleep. When we arrived home, Mattie received a lovely package from Caroline C. Caroline is a SSSAS student and she sent Mattie a lovely note, a stuffed animal that looks like JJ, and some very tasty chocolate chip cookies. Thank you Caroline for thinking of Mattie! Mattie then settled down and watched a movie with my parents and I. We are into halloween movies all week, as we are getting into the spirit of friday. While watching the movie, Peter arrived home from his trip, and Mattie jumped up, and walked over to Peter and gave him a big hug and rested his head of Peter's shoulder. It was very sweet and touching!

Mattie is currently building with Peter using legos, and is attempting to use both hands. We are encouraging him to do this, and we are beginning to massage his hand, as well as keeping it elevated to get rid of some of the expected swelling. But I am happy to report he has NO reported pain today, and is completely off of pain meds! Something to celebrate.

I received a lovely e-mail today from a former student of mine. Thank you Mary M. for following Mattie's story. Mary wrote, "I’ve been following Mattie’s blog each day and trying to figure out what I could write to you that would be of some use or comfort. Anything I thought of seemed so inadequate under the circumstances that you, Peter and Mattie are going through. One thing that kept coming to my mind though as I was reading your description of how Mattie was so amazingly brave dealing with his overwhelming and scary situation, was a recent book I read that was very touching and inspiring entitled “If I Live to Five.” This book was written by Dr. Fred Epstein, the founding director of the Institute for Neurology and Neurosurgery at Beth Israel Medical Center. A quote from the back cover of the book states: 'If I Get to Five is a tribute to the hidden strengths of childhood and the unstoppable life force that dwells within each of us.' From your description of Mattie, it appears he definitely has that unstoppable life force! Another quote from the book from Marian Wright Edelman, President, Children’s Defense Fund states: 'This book is a testament to the extraordinary depth, power, and resiliency of children’s spirits.' Mattie also seems to have that extraordinary depth, power and resiliency, which will serve him well as he struggles with the challenges of his illness." Mary I agree with you. Mattie definitely has an incredible spirit, and I have to get my hands on this book, because this doctor's observations and mine have been very similar!

On the electronic front, thank you Karen and Lorraine for your wonderful e-cards. We also thank the Harding family for a wonderful dinner tonight! You spoiled us today with food and gifts. Much thanks! Here's to wishing for a better night of sleep tonight!

Sunday, October 26, 2008

Sunday, October 26, 2008

Mattie had another late night on saturday. He woke up today and was in fine spirits. Even with all of his pain meds turned completely OFF! As I was driving to the hospital this morning, Peter called me on my cell phone and told me that Mattie requested a happy meal. Normally that wouldn't be a problem, but today was the Marine Corp Marathon, and the traffic flow around Foggybottom was difficult to say the least. But I was motivated, and finally found my way to a McDonald's. When I arrived at the hospital, Mattie devoured his meal, and he always checks to make sure I got him a "boy" toy in his happy meal. I have learned my lessson NEVER to pull away from the drive thru before checking. Mattie shared with me how his morning went and that Anna's friend, Brad, came up from the PT department to work with him. Brad wanted to see if Mattie could walk up stairs. Mattie did it one, two, three. However, as I have observed Mattie today, he is unsure on his feet. Probably because he was confined to a bed or a chair most of the week.

Mattie had two special visitors today, Emily W. and her boyfriend, Adam. Emily was one of Mattie's most recent babysitters. Emily has known Mattie for over two years, and when she found out about Mattie's illness she was very upset, and writes to me often. Emily now lives in NY, but she came down to visit the DC area, and was determined to visit with Mattie. Emily and Adam came into Mattie's room and showered him with gifts, from donuts, cupcakes, halloween cookies, legos, and even glow in the dark Gak! The glow in the dark gak was a MAJOR hit. Below you will see some pictures I took of the fun they were all having together. I would say they were in the halloween spirit, wouldn't you?
Emily and Mattie. As you can see the color of the Gak inspired Mattie to be very creative or gross, depending on your view point.

Adam, Emily, and Mattie. They were all in the halloween spirit!

Emily and Adam entertained Mattie for over an hour. Mattie had a great time with them, he learned some magic tricks, and had a chance to be silly. Thank you for spending the afternoon with us and also THANK YOU for helping us pack up Mattie's room and carry things to the car. If felt like old times today, and it was nice to see Emily and Mattie pick up where they left off in their friendship.

Dr. Bob Henshaw visited Mattie today at around 2:30pm. Bob changed Mattie's arm dressing and removed the perineural tube from Mattie's arm. Mattie watched the whole process, and did not flinch at the sight of his stitches. Mattie is quite a trooper, and he has a wonderful rapport with Bob. They continued joking about Sparky's middle name, and Mattie desperately wants to know who Bob's spys are that tell him how Mattie is doing! It is a lot of fun to watch, and what amazes me is how well Mattie is doing with all of this. It is the beauty of being a child! Because as an adult, I find myself reflecting on the possible pain, or the fact that Mattie's arm will always have a large scar, or the fact that he will have limited mobility. Mattie doesn't see these possible consequences. Instead, he takes each day as it comes, and in all reality he seems fascinated by the surgical pictures and how it transformed his body into the bionic boy. Needless to say, I take my cues from Mattie, and it is his positive attitude that helps me. Ironic, no? I would think I am the one who should be helping him during this time! Of course, I know I do, but his attitude is admirable and is infectious.

At around 3:30pm, we were discharged from the hospital. We mobilized like the wind, since Peter wanted to be able to help us move out before he had to leave for his business trip. I left armed with a pain management plan and the knowledge that I could call Bob if any problem arose this week. This alone is very comforting!

My parents helped us pack up as well, and they took all of Mattie's prescriptions and went to go get them filled at the pharmacy, while Mattie and I headed home with Emily and Adam. We dropped Emily and Adam off in Foggybottom, and I know Mattie hopes to see Emily again before she goes back to NY. When in our garage, I helped Mattie out of the car. We took it slow, but he is unsteady on his feet, and almost fell in the parking lot, so I realize I need to keep a very close eye on him the next day or so. Mattie headed straight to his legos when he got home, and has transitioned very well to being home. Mattie and my mom were talking about dressing up for Halloween tonight, and Mattie got a hold of a witch's hat our neighbor, Goli, gave us last year. Mattie loves wearing the hat, and you will see this in the picture below. We are now all focused on halloween and Mattie is getting into the spirit of the occasion.



We want to thank the Cooper's for dinner tonight. They were away visiting family today, but despite their long trip back home, they made sure we had food tonight. Thank you Campbell and Livi for hand delivering it to us. We all enjoyed it! Sometimes I get so involved with Mattie and unpacking that I forget to eat, so dinner came at just the right time!

On the electronic front, we want to thank Coach Dave for his lovely e-mail. We are so happy to hear that Mattie could inspire the team on saturday despite the fact that it was such a rainy day. They are a special group of young men, led by a very special coach! Thank you Charlotte for your wonderful pictures and video today. Mattie felt like you were here with him.

I am not sure what the evening holds for us. But it is nice to be out of the hospital on so many levels! At the moment Mattie is watching videos with my parents as he is settling down. So far he has watched Scooby Doo and the Witch's Ghost (thanks Melissa!) and Wordworld's Kooky Spooky Halloween (thanks Junko!). We are officially halloween central here!