Saturday, November 8, 2008

Saturday, November 8, 2008

Today's Message (thank you Carrie!): I believe in the Sun even when it is not shining; I believe in Love when feeling it not, and I believe in God even when he is silent. ~ Barb Flint Gifts of Many Cultures

Mattie had a very special day from start to finish. He started his morning with a visit and piano lesson from Caroline Eaton. Mattie enjoyed his time with Caroline and wanted to show her his new remote control car, he demonstrated it out for her, and even introduced Caroline to JP (our neighbor) and of course to our resident Jack Russell Terrier, JJ. JJ came with Dunkin Donut treats! JJ always knows how to put a smile on Mattie's face. Caroline was so thrilled to meet JJ, and she said she has read so much about JJ that she felt she already knew him. In a way, meeting JJ for the first time is a lot like meeting a Hollywood star, because both JJ and the stars get a lot of publicity and certainly JJ gets his share of blog publicity. I loved Caroline's analogy today, because she is right, in our world JJ is one of our stars. Caroline and Mattie played on the electronic keyboard today, and at several points it sounded like a jam session. Mattie was even getting his feet involved with playing. Normally I would have a big issue with this, but since he may be playing with his left leg for the next couple of weeks, I went with his clever idea. I tried to snap a picture of his new way of playing, but I wasn't successful at it. Every time he saw the camera, his foot would leave the piano. Below is a picture of Mattie with Caroline. Thank you Caroline for a lovely morning, and we are so happy to have the chance to get to know you better.

Peter spent the morning assessing all of our house plants to determine which ones we needed to either bring to his office or give to Larry Jenney (one of Mattie's Kindergarten teachers) to take care of over the winter. When we found out Mattie had cancer, all of our house plants were removed from the house and kept outside. There is the potential for molds to grow in house soil, and it is recommended that none be kept in the house this year. That may not seem like a big deal to most people, but to the "crazy plant lady," as Peter and Mattie affectionately call me, this is a major problem. I have had some plants for over 15 years, and I am very fond of them, some were given to me by family and friends, and these plants I hold dear, because I view them as an extension of our relationships. In any case because of the colder weather, several of our plants were relocated today to Peter's office, and the rest went to Larry's home today. Thank you Larry for opening your home to my green friends. While we were outside sorting through plants, I captured a photo of the newest Red Sox Nation Member (kidding of course, but I couldn't resist!). Got to love this grasshopper, who hopped onto Peter's hat.

After Mattie's piano lesson, we packed up into the car, and headed to Ms. Debbie Pollak's art studio in Alexandria. Debbie is Mattie's art teacher at SSSAS. Debbie worked hard to create a happy day for Mattie from start to finish. This day called for a lot of pre-planning and set up on Debbie's part. Debbie is very aware of the physical challenges that Mattie faces next week, and she thought if they created a painting together, this would inspire Mattie through his recovery process. He could look at the painting (which will hang in our living room), remember this special day, and this would hopefuly motivate him to work and rehabilitate his arms so that he could return to making more art work in the future. It was a lovely and heartfelt sentiment! In order for this day to go as smoothly as it did, Debbie purchased a large canvas and primed it with a background the day before. She invited Jennifer and Dylan Li (SSSAS students) to assist with creating the backdrop on the canvas. Debbie explained to Mattie that they were working with acrylic paints today, and that it was important to have the backdrop already done, because if not, they wouldn't be able to actually paint a scene today. It has to be done in stages. Fortunately Debbie thought ahead and worked on the first stage, so that Mattie could jump into the project today. In addition, Debbie planned both lunch and dinner for us, with the help of two lovely SSSAS parents. Thank you Luda for a fabulous lunch. We simply loved it! I became friends with Luda during SSSAS' weekly chapels. Luda was my chapel buddy, we sat next to each other each week. Debbie set a glorious table. She spoiled us with a silver tea pot, lovely china, and silver platters. It was like going to the Ritz for tea. Walking into Debbie's is an experience. She has transformed a car barn into an amazing Italian villa on the first floor, and a bright and airy art studio on the second floor. Each piece on the first floor was fascinating, and picked with love. I have come to see that Debbie is very sentimental and parts of her first floor reflect the special love she shares with important people in her life, such as her mom and dad. Being of the same sentimental persuasion, I truly appreciate this aspect of Debbie. Below is a picture of us enjoying our lunch with Debbie!

After lunch, Mattie and Debbie went upstairs to her incredible studio, and began working. I have included pictures below of the masterpiece from start to finish.

Mattie is dressed in Debbie's Hawaiian smock, and is standing in front of the canvas that was primed with a background color. So this is the pre-painting picture, before Mattie did anything to it.

The next phase of the "sun" painting.

This was the final product. It is hard to see the 3-D nature of this painting. Because the actual sun, is a separate piece of canvas that was hot glued onto the bigger canvas. In addition, we hot glued feathers onto the canvas, since Mattie learned a few weeks ago that Native Americans hold feathers while they pray... since birds fly high in the sky, it is believed that the birds carry prayers to God in heaven. So from my perspective, Mattie's sun is lighting the way for birds to carry our prayers to God in heaven.
Mattie even signed the painting himself with his left hand!

Mattie and Debbie! I love the expression I captured on Debbie's face, because she is a proud teacher happy with her student's accomplishment. Mattie was aglow with his sunshine. He said that looking at the painting made him happy!

Toward the end of the day, Dinny Li (a SSSAS mom) was very thoughtful and brought us a wonderful chinese food dinner. It was delicious and very generous of her family. Her children, Dylan and Jennifer (as seen in the picture), helped prime the canvas with Debbie yesterday, and came to see the finished product this afternoon. We thank the Li family for their support!

Debbie surprised Peter tonight with a birthday cake. Debbie and Mattie frosted this delicious and sinful chocolate cake earlier in the day. So Mattie felt very good about himself, that he was able to keep this a surprise from Peter. I really appreciate Debbie doing this, because normally Mattie and I would be baking a cake for Peter and frosting it, but since Mattie will be in the hospital during Peter's birthday, I just figured it wouldn't happen this year. Thank you Debbie for this special treat and surpise. I captured Peter and Mattie blowing the candles out. I don't need to ask, because I think I know exactly what Peter wished for!

Today was a very memorable day. I think Mattie's "Sun" creation is breathtaking, and I look forward to displaying this original piece in our living room. There is something special and healing about the sun. This painting is vibrant and alive, and I know it will help us through some difficult days ahead. This work of art is something that I will hold near and dear to me, because it isn't just a snap shot in time, it is something more meaningful. Through this art, it captures Mattie's brightness, vivaciousness, and personality. These bright colors fit him as a person. The sun provides purpose and direction to the time and place in our lives, and in essence Mattie is my sun (not just my son). This art piece will be part of our permanent collection. In a way, we created an important tangible piece of family history today. Thank you Debbie for this precious moment.

When we arrived home tonight, we received a lovely dinner from Davis Knox (a colleague of Peter's from the American Red Cross). Mattie thoroughly enjoyed the pasta as well as my parents. We look forward to eating your pumpkin bread (one of our favorites) tomorrow. Thank you so much for thinking of us and for your support.

I received a lovely e-mail from Carrie that I wanted to share with you. Carrie was commenting on all the emotions that Mattie is forced to deal with in any given day. She wrote, "I love the lamp Mattie made for you and he knows how special you are to him and he probably is trying to separate from you to be strong, so yes he may feel bored with you in essence (nurturer/mom)..... but I think that is to be expected considering what he is going through... I think I would have quite a bit of anger if I were in his place and he is dealing with all of this. He may have anger and then at the same time being with a nurturing person (mom) could be confusing. Like how can both of these things exist in my life at once? Hurt, pain, and then love? Do you know what I mean? Such a big lesson for such a young person. But mattie seems older (emotional maturity) than most people I know!" Carrie, I totally agree, it is hard for an adult to process all these emotions, much less a six year old.

On the electronic front, we want to thank Cousin Rosalinda, Karen, and Grammie for the great e-cards and videos! In addition, Mattie received a wonderful toy sports car from Leslie Williams (his Kindergarten teacher) today. Thank you Leslie, Mattie is busy playing with it tonight! He loves it. Also, we want to thank Patty Lease for the wonderful videos she is sharing with Mattie. Patty is Mattie's science teacher at SSSAS. These videos belonged to Patty's children, and we look forward to watching them together. It was very thoughtful of you to think of Mattie. I end tonight with a quote from Debbie Pollak's father: "If you can't do anything about your own problems, do something extraordinary for someone else. You will feel better." Thank you ALL for making us feel better each and every day.

Friday, November 7, 2008

Friday, November 7, 2008

Mattie's Methotrexate level cleared at midnight on thursday. So we knew that we would be discharged on friday morning. We are SO thrilled to be home! Each hospital stay seems to become harder and harder on all of us. At 7am, I started packing up Mattie's hospital room, while Peter jumped on several conference calls. It literally took me two hours to sort through the room, and pack in an organized fashion. We enter the hospital SO organized, and by the time we are discharged, things are all over the place. When Mattie woke up today, and said he did not want to come home. But as that thought of being released became a reality, his mood changed for the better. He hopped out of bed, got dressed, and was even helping me pack. I think Mattie and I were close before he developed cancer, but now we have a very tight bond, and though we may get upset with each other now and then, we both know it is out of frustration. Mattie was an excellent helper and had good insights about how to more efficiently pack our boxes with things. Peter and I packed up our car with Mattie's things, while Whitney and Lesley played with Mattie. Thank goodness for Childlife! We would have a real problem without these fine individuals. It made the move out process go much smoother today!

Mattie and I dropped Peter off at work, while we continued on home and met my parents in our parking garage. They helped us bring bags upstairs, and I slowly started to unpack. Unpacking is one of my LEAST favorite activities, after a long week at the hospital. While I was unpacking, my parents took Mattie for a walk, which was very good for him. On their walk, Mattie stopped by our local CVS and picked up a balloon and a remote control car. He was very animated about this purchase. Thanks Grammie and Pop Pop! See a picture of Pop Pop watching Mattie with his car below!


At 1pm today, Peter, myself, and Alison (our Team Mattie director of communications and public relations) had a conference call with Ted Kennedy, Jr. Thank you Brian and Danelle Fortune (RCC parents) for making this possible. Mr. Kennedy lost one of his legs to bone cancer in 1973 at the age of 12, and devotes much of his professional and personal energy to working as an advocate for the civil rights of people with disabilities. We spoke with Mr. Kennedy about his own battle with osteosarcoma, and then spoke about Mattie's current situation and treatment issues. Mr. Kennedy shared many valuable insights with us, and even mentioned his interest in learning more about MTP (the experimental drug at Sloan Kettering). At one point in the call, Mr. Kennedy basically said that Mattie was lucky to have parents who are devoting their time, energy, advocacy skills, and intelligence to help him. He commended us for doing the right thing, which is exploring all possible options for Mattie's treatment, so that by the time we make a choice about post surgery chemo options we will have no regrets. He also told us, never to be afraid to challenge a doctor, and that a good doctor should welcome such a challenge. We told Mr. Kennedy that we agreed with him 100% and challenging doctors is not a problem for us. Mr. Kennedy was very generous with his time and thoughtful in his responses. It is our hope that we will be able to keep him updated about Mattie's progress. Mr. Kennedy even told us that he has checked out Mattie's blog on occasion.

After our conference call, my parents and I took Mattie out to lunch. Mattie ate up a storm, as he cuddled up right next to me while eating. We fed some fish after lunch, in the pond outside the restaurant, and then we took Mattie to Toys R Us. He has been planning this toy store visit now for a week. It was so funny watching him in the store, because I could see him scanning the aisles, and I knew exactly where he was heading. He wanted a remote control airplane. He found exactly what he was looking at, and when we came home, we assembled it and though it was dark outside, we went out and flew it!

Thank you to the Ferris family for a "New England" feast. We loved the Lobster rolls and the fish soup from Kinkaid's. What a special treat, the chocolate dessert was demolished tonight as well! Much thanks! The food from Johnny Rockets for Mattie was a hit too! That was so thoughtful of you, we can't thank you enough for your support.

Mattie had the opportunity to open up some packages tonight. Thank you Grandma for the shirts. They are very appreciated and needed. Mattie loved the homemade halloween cards from his cousins, Nat, Sydney, and Will in Boston. Mattie also loved the scratch magic and story telling game. We also want to send a special thank you to the Morris family for enrolling Mattie in the Lego Brickmaster Club. Mattie was thrilled to get his first gift today, and is currently working on it. In addition, a former student of mine, Mary, was very generous with us, and sent us a Brookstone Sound Machine. While building legos, we have a peaceful sounding stream running in the background. I am loving it! It is a fantastic sensory experience for all of us. Thank you Mary!

On the electronic front, we want to thank Emily W., Brian Boru, Karen, and Grammie (great animal videos!) for the wonderful e-cards! As we head into the weekend, Mattie has a lot of wonderful things planned, and it is hard to imagine how in only a couple of days our world is going to change dramatically. Mattie will be truly disabled, and we will need to learn how to assist him as well as motivate him through this recovery process. In addition, our living room will be transformed next week into a hospital room, so that we can make Mattie comfortable when he returns home post surgery. I thank all of you for sending me links to adaptive children clothing links today! I appreciate all the thought you are putting into this and for those of you sewing and designing clothes for Mattie so he can be comfortable post-surgery. I end tonight with a quote from Leslie's hope book that she sent me. It seems so fitting for Peter and I.
"Even the strongest people must step back, take a deep breath, and summon their courage now and then."

Thursday, November 6, 2008

Thursday, November 6, 2008

Quote of the day (thanks Charlie!): "Hope sees the invisible, feels the intangible and achieves the impossible."

Wednesday night was so unusual. Mattie fell asleep at 8pm, and had a decent night of sleep (of course other than getting up to go to the bathroom from all the IV fluids, and having to do vital checks every four hours). I thought he was so tired last night mainly because yesterday was the first day post surgery without the bandage on his right arm. The arm is free now, and somewhat sitting in a sling. I say somewhat because we can't seem to find the right size sling for Mattie to support his arm. In any case, he is moving his arm very carefully.

We began our day with a visit from Anna, Mattie's physical therapist. Mattie and Anna continued their water gun battle, and then Mattie also worked on some additional exercises. He was mostly compliant with Anna's requests. During Anna's visit, Linda came in, and helped talk with us about Mattie's surgery next week. It is ironic, no matter how I think I have prepared Mattie, something always surprises me. Mattie thought he wasn't going to have another surgery until the first surgery site had healed. In addition, when he heard he was having surgery next week, he thought it was only going to be of one more part, not all three at one time. It was fascinating to see the wheels turning in his head, as he began to think about the consequences of three surgerical sites. So the questions started to roll, such as how will I be able to get dressed? What kind of pants will I wear? How will I be able to walk and get around? Why is Dr. Bob doing another surgery, since he isn't healed from the first surgery? All great questions, and we answered them one by one.

I found Mattie's questions so meaningful, that it reminded me of an e-mail I received from a friend, and former RCC parent, Michelle. Michelle wrote the following to me back in the end of October: "Vicki, I was reading your blog this morning before heading in to work yes, I'm addicted, even while on a work trip to Ohio!); reading about Mattie not wanting to leave the room with his back exposed gave me a thought. A friend of mine has a non-profit corporation called Sew Much Comfort (www.sewmuchcomfort.com) that makes adaptive clothing for wounded veterans. Long story short, when her son was battling cancer and needed multiple surgeries, she adapted his clothes - pants for Mike - by removing the seams and replacing them with velcro. This allowed Mike to wear "normal" clothes that he could get on and off, and the clothes could work around the various apparatus he had to deal with."
I think Michelle's idea is fantastic, and I spoke to Anna (Mattie's PT) about this today. I am trying to track down companies that make such adaptive clothes for children. I want to get this addressed ASAP, since Mattie will need such clothes in alittle more than a week from now.

After Anna's visit, Mattie and Linda went to the Childlife playroom. It was in that room, that Mattie worked on a birthday present for Peter. Mattie was going to give the present to Peter next week, but when Mattie saw Peter tonight, he was too excited and insisted on giving him the present. Mattie had help gift wrapping the present, but basically designed and wrote in his card with his left hand, and created a beautiful birthday cake out of model magic for Peter. Below is a picture!


Mattie had a visit today from Alison, who met all his food cravings, with a happy meal, a pizza, and a hot dog. He was all set. He slowly made his way through all the food throughout the day! Thank you Alison for a lovely lunch and the time to chat, and thank you Linda for this opportunity. When Alison and I got back from lunch, we found Mattie in his room with Linda. Mattie and Linda were playing the keyboard together, "Mary had a little lamb" to be exact! Caroline E., I think you would be proud! Then Mattie proceeded to tell me that he is bored with me as his mom, and he wished that Linda were his mom. Linda answered Mattie's request in a lovely way, saying that if Mattie spent as much time with her as he does with me, he would be bored of her too. At first, I was taken aback, but then I realized where his comments were coming from. It is so natural, he wants the opportunity to be able to be separate from me, and this circumstance doesn't lead to this kind of independence. Mattie continued with this line of reasoning and Alison sat down and talked with Mattie about his comments directed at me, and then she just started tickling him and redirecting his negative energy. By the time she was finished with him, he did not even remember what he was complaining about. It was wonderful!

Mattie then had a visit from Jessie (one of Mattie's art therapists). Jessie is a lovely person on the inside and out, and she is very creative in her approach to projects. She brought with her simple things like popsicle sticks, a box, a glue gun, and this interesting paper that transforms into a sponge when soaked in water. By the time Jessie and Mattie were finished, they transformed the box into a mouse's house, and designed a mouse out of model magic, created pieces of cheese for the mouse, and designed popsicle exterminators. Below you will see the whole creation! It was creative, and listening to Jessie play three different characters was a riot, I haven't laughed so hard. Thanks Jessie for a lovely afternoon, the play continued after your visit.




Tonight the mouse box game continued with my parents, as they played with Mattie and his mouse friend. However, toward the end of the evening Mattie was getting tired and crabby. He is eating up a storm this evening, watching Tom and Jerry, and is excited about the opportunity of going home tomorrow. We want to thank Alissa M. for a wonderful dinner tonight. Alissa is a former student of mine, and I so appreciate her support and kindness. I am blessed by having the best students.

On the electronic front, we want to thank Karen and Brian Boru for their lovely e-cards! We are ready to leave the hospital, as we try to prepare for the huge week ahead of us. At the moment both Peter and I are exhausted, but I guess 15 weeks of dealing with this can do this to a person. Unfortunately there is no end in sight, and frankly the near future looks daunting. We appreciate all the support that is being extended to us. It is a powerful force to know we are not alone.

Wednesday, November 5, 2008

Wednesday, November 5, 2008

Quote of the day: "Life is not tied with a bow, but it is still a gift."

I received the above quote of the day from my friend Charlie. I told Charlie, that it is hard to see life as a gift at the moment. Her response was, "As long as we are here, there is hope. Mattie and his spirit are a gift and an example for all of us, as you are." Thanks Charlie!

Mattie had a decent night of sleep on tuesday. Other than the usual awakenings to check his blood pressure, temperature, and bathroom runs. He woke up early this morning because he could hear Peter and I walking around the room, and trying to get ready. It is virtually impossible to tip toe around a 2x4 room. Mattie was hungry this morning, but refused his hospital breakfast. I think I should get a discount from Georgetown, since basically we really can't use their food service. Thankfully, Mattie had homemade pumpkin muffins (thanks Debbie) and banana bread (thanks Ann) to choose from. Mattie and I did some computer time together, learning to spell words, and while playing I was preparing him for the fact that I would be attending a hospital team meeting today, and he would be spending some time with Lesley.

The team meeting today was very helpful. If you thought there were a lot of people at the first team meeting, well then you would have loved today. It was standing room only at one point. There were people there that I did not even know. But of those I recognized in attendance were: Dr. Bob Henshaw (Mattie's surgeon), Bob's fellow from Washington Hospital Center, Dr. Kristin Synder (one of Mattie's oncologists), Dr. Houser (chief of the PICU), Dr. Ved (Pediatric chief of anesthesiology), Jeff Turner (nurse manager of the HEM/ONC team), Dr. Matt Biel (child psychiatrist), Denise Garner (Mattie's social worker), Kathy Myint-Hpu (Nurse Practitioner), Jenny Padden (Art Therapist), Jessie Masterson (Art Therapist), Anna Fragomeni (Physical Therapist), Nicole Droog (Pain Management), and of course Linda Kim (Child Life Specialist) and myself. The meeting accomplished two major objectives in my perspective, first of which was Mattie's coordination of care, and second, a discussion of Mattie's pain management after the next surgery. After a discussion, Mattie will have four different pain control options placed in his body: 1) an epidural (regional anesthesia placed in the spine), 2) a perineural (like he had with the surgery of the right arm), 3) sciactic nerve catheter, and 4) a PCA, which will pump a narcotic into his body on demand. I felt reassured to see all the team members talking with each other about Mattie's case, because the November 12 surgery will be an eight hour long ordeal.

After the meeting, Bob came back to Mattie's room to remove Mattie's splint and bandages. Mattie handled it well but was in some pain. However, Mattie's incision looked good and the blister by the incision had burst and healed (a natural by-product when using dissolvable stitches). Mattie was in some discomfort so he received some pain medication. Mattie refused oral pain meds for about 30 minutes (of which he was crying and uncomfortable), and thanks to Dr. Synder, she rescued us from a very unpleasant situation, by ordering for the pain meds to be administered through the central line. Thank God for small favors! This helped him fall asleep for a little while, and Linda, Dr. Biel, and I discussed Mattie's sleeplessness and how to prepare him for next week.

When Mattie woke up from his nap, he had a visit from Ellen. Ellen brought him a happy meal, and of course Mattie was thrilled by this, and loved the toy. Afterall it has a lot to do with the McDonald's toy, doesn't it?! Ellen also gave Mattie a Webkinz Gorilla, who Mattie named "Cutie." Now Mattie and Charlotte can play with their webkinz together on line. Thank you Ellen for your thoughtfulness and for playing with Mattie today while I got a chance to eat. I thoroughly enjoyed lunch and hearing you and Mattie playing 20 questions.

After Ellen's visit, Anna (Mattie's physical therapist) came for a visit and she was armed with animal shaped water guns. Mattie had a great time playing with Anna and also learning how to move his arm. In fact, I think all the activity today wore Mattie out. He fell asleep at 8pm and is still sleeping. It is a miracle! Below you will see a picture of Mattie squirting (or drenching) Anna with water. Anna was a good sport, and Mattie seemed motivated to learn how to move his arm using the technique Anna showed him.


Next Mattie headed down with myself, Linda, Whitney, and Lesley to the X-ray department to get some pre-op X-rays. He was with his ladies! How many other six year olds travel with four woman at one time? Fortunately we are becoming quite familiar with Theresa, the X-ray tech. She is very patient with Mattie, who was very protective of his unbandaged arm today, and was moving gingerly. You had to see all four of us helping Mattie onto the X-ray table. It was an absolute riot! While getting his X-rays, Mattie was visited by his "big brother," Jey. Jey also stopped by yesterday and gave Mattie a lovely American Flag for Election day. Jey is always looking out for Mattie, and stayed with us until the X-rays were completed. There are times I feel like I am living in a very surreal environment. An environment where people care about you, where you get a lot of attention, and where others seem to take the time to talk with you. After the X-rays were complete, Theresa printed out copies of the X-rays for Mattie on paper. He was fascinated to see his bones and where his tumors are. I of course don't know how to read films, but I have learned enough now (unfortunately) to spot where these tumors are. Theresa also gave Mattie a lovely dinosaur ring and lollypops for being such a great patient today.

As we head back upstairs to the PICU, Mattie decided he wanted to go to the playroom with Linda, Whitney, and Lesley. Linda gave me the time to go back to the room, and catch my breath. Which was VERY appreciated. While I was gone, Mattie told Linda he wanted to make me something. He said I am always with him, so he never has the opportunity to surprise me and make me something. I thought that was very special. When he came back from the childlife playroom, he surprised me with a beautiful painted lamp. See the picture below of Linda, Mattie, and Lesley and then a close up of the lamp!




Dr. Bob Henshaw spent the entire day working at Georgetown Hospital today, but before returning home, he paid a visit to check on Mattie. I updated him about Mattie's arm movement, and the fact that he had a busy and productive day. I know Bob realizes I am very apprehensive about surgery in general, but his calming demeanor is very contagious. He has a way of making me understand that this must be done, and done soon, so that Mattie can begin chemo and the recovery process. I truly believe Bob performed a miracle on Mattie three weeks ago, and though I have my own issues with surgery, I can't think of a more trusted person that I am turning my son over to for eight hours next week. What on earth are the chances that I would know the Henshaw's? You need to understand that Bob's skills are so unique that there may be only a handful of people in the world that can do what he does. Makes you believe in divine intervention!

Toward the end of the evening, Mattie had a visit from Jenny. Jenny showed Mattie how to make tissue paper flowers. Mattie wanted a flower on his IV pole, just like Brandon's (his big buddy). They had a good time with the tissue paper and talking with each other. Mattie even claimed one of Jenny's bracelets for his own since he liked them so much. Thank you Jenny! Below you will see a beautiful flower Mattie and Jenny created together. It is glorious and huge!



We want to thank the Katcher Family for a wonderful dinner tonight. We loved your shrimp, homemade applesauce (one of my favorites!), and of course your special applesauce cake! We appreciate your support.

On the electronic front, we want to thank Brian Boru and Karen for your lovely e-cards and constant support! I end tonight letting you know that Carrie and I have finalized Mattie's wristbands. Carrie let me know that the GW counseling honor society (CSI) plans on purchasing 500 wristbands to start the distribution process. I want to thank Carrie for all the work she is doing on make this wristband project a reality. I always felt Carrie was a talented doctoral student and TA, but now I am getting to know her as a person, and her depth, sensitivity, and compassion overwhelm me. Thank you Carrie and CSI!

Tuesday, November 4, 2008

Tuesday, November 4, 2008

Monday was a night to remember or actually to forget! Mattie was up on the hour, crying, moaning, and very agitated. At a couple of points in the night, while he was crying he was talking to us and also not making any sense in what he was saying. At some point, you begin to ask yourself, how on earth do you function the next day on virtually no sleep? We had to leave the hospital this morning by 8am to arrive at our appointment with Dr. Nita Siebel. Now to add insult to injury, there was NO hot water to shower with. Some people need coffee in the morning, others need their morning paper, I need a shower. I was less than a happy camper heading off to this meeting this morning, with no sleep and a freezing cold shower. But it seems so fitting for us, why should anything go smoothly?!

In order to attend this meeting with Dr. Siebel today, it took a whole lot of coordination. Ann came over at 7:45am to watch Mattie. In order for Ann to do this, Tanja helped take Ann's children to school. Ann had to leave the hospital at 11:30am to take her dad to the doctor, and then my parents took over. So literally attending one meeting, required a lot of people to juggle their schedules. Thank you! Peter and I both feel that meeting today with Nita was very important. We met Nita at Children's Hospital, which is an experience in and of itself. Just parking is an event, like driving around an airport in circles. It is ironic, that you don't appreciate the hospital you are in until you visit another hospital. Peter and I had a lot to chat with Nita about, specifically the debate about the percentage of necrosis and the chemo options to consider for Mattie post-surgery. Thank you Ann for your help today and for the wonderful banana bread (I love the way you make it, it's one of my favorites), donuts, tea, magic crystals, snacks, ghost craft and other goodies!

While we were in the appointment, Mattie spent the morning sleeping and recovering from his night and morning of vomiting. When I returned he awoke, and then we struggled for a while until Mattie found something he wanted to do. Fortunately Linda came in and offered Mattie a remote control car. That was a pretty difficult offer to turn down. The remote control car brought a smile and many hours of enjoyment to Mattie today. Isn't it something how one item can bring such happiness to him and to those around him who are watching him playing. Elizabeth, an art therapy intern, spent a great deal of time playing with Mattie and his car. She got run over, chased, and hit. But she took all of this in such good stride. Below you will see a picture of Mattie in the playroom with the car, and then with Whitney and Lesley. Notice that Mattie strapped puppy "JJJJJ" to his car. This was a game my mom and Mattie developed today, with all the stuffed animals in Mattie's room, and in particular the Jack Russell stuffed animal was named JJJJJ. Just trying to say J five times was a riot to listen to.




While Mattie was playing today with my mom, I sat still for a moment, and listened to their creative puppy game. I snapped a picture of them together, as they were having a great time saving puppies.


This afternoon we had a surprise visit from Alison. Alison answered my request, or actually Mattie's demand, for Scooby Doo mac and cheese. After Alison left, he proceeded to eat a tupperware full of the mac and cheese. Thank you Alison for coming over today, for the most necessary pasta, chips (Peter thanks you, so he doesn't have to search for chips at 4am), and of course the chocolate!

We want to thank the Keefe family for a wonderful Asian Bistro dinner. It was super tasty! I would love to know what the name of the beef dish was, we thoroughly enjoyed dinner, and Mattie loved the pizza and the fortune cookies. He claimed all three fortunes for himself! Thank you also for all the generous gifts such as the Frog and Toad Book (apparently one of Peter's childhood favorites too), "Streams in the Desert," tea, pumpkim muffins, and gift card. The mac and cheese will come in very handy this week too! Your kindness and support is very much appreciated. Mattie enjoyed seeing Eliza too. Eliza is Tim's sister, and Tim and Mattie went to Kindergarten together. I could tell Eliza wanted to see Mattie, and she jumped right on in and played with him and his remote car. See Eliza below acting like a tunnel for Mattie's car!


I would like to share an e-mail that I received today from Liza. Liza is a SSSAS upper school mom, and you may recall that Katie, Liza's daughter, sponsored a very successful bake sale last week at the upper school. Liza shared a story with me that Katie relayed to her regarding her experience at the bake sale last weekend. Apparently Katie got to school early to set up, and Liza wrote that "a gentleman asked Katie how much things were and handed her some bills. Somehow, she missed seeing who it was and what he had given her. When she looked in the jar, she realized that he had given her two $50 bills. Wow, what a way to start the sale! When I showed up with a late lunch, there was a sister of one of the St. Alban's players who had come back to buy something else. She was so sweet, asked questions, read the information about Mattie and loved the photograph of Mattie and the football players. Then at the end of the sale, Katie said that one of the St. Albans' moms came over with a $20 and bought some things for the players, then she came back again with another $10 because they all wanted to support the sale." Thanks Liza for sharing this story with me, and letting me know how much Mattie's story is impacting those around us.

Peter and I had a phone conversation with Dr. Bob Henshaw tonight as we prepare for Mattie's next major surgery next wednesday. Bob walked us through the surgeries and the recovery process. Tomorrow is our second multidisciplinary meeting, in which Mattie's care team will convene to discuss how to help him through the next major hurdle. We are slowly trying to get a handle on the surgeries that will impact Mattie's physical abilities, and yet feel equally as challenged about making the right decision regarding post-surgery chemo options.

On the electronic front, we want to thank Karen, Lorraine, and Brian Boru for their wonderful e-cards! As the day is winding down, Mattie is wide awake and constructing a lego set. As usual Peter doesn't disappoint, he always comes to the hospital from work with a goodie in hand. Mattie and Peter love building together! I can't help but reflect on today being a major day for our country, election day. Normally this would be a day I would be following the electoral college votes very carefully and would be glued to the political commentary. But what it comes down to for me, is that neither McCain nor Obama can change my family's life circumstances. Neither have the power to help Mattie, and at the moment that is all I am focused upon. I have come to see and experience firsthand a world much larger and more complex than the things we typically get wrapped up in, and that many things are out of our control and guided by a higher power. When you have a life altering event happen in your life nothing else really matters, and what used to matter seems trivial and inconsequential.

Monday, November 3, 2008

Monday, November 3, 2008

Mattie went to bed on sunday attached to an IV for hydration. The thinking is that prehydrating him will enable him to meet the given criteria to start a methotrexate infusion almost immediately after admission to the hospital. It appears that every time we enter the hospital for methotrexate we land up waiting around for 6-7 hours while Mattie is getting hydrated in order for his pH urine level to become more basic (a requirement for methotrexate admission). However, this time, we opted to prehydrate him at home, in the hopes of not waiting around for 6-7 hours in the hospital. Unfortunately, I noticed at 4am today when I was awakened by Mattie that the IV was dripping and puddling all over the floor. I did not like the look of what I was seeing, so I stopped the hydration process. Mattie received about half of the hydration he needed. So though our intentions were good, we still had to wait 6 hours today in order to sufficiently hydrate Mattie.

Before we left for the hospital this morning, I received an e-mail from Dr. Jeff Toretsky. Jeff is in Israel now attending a cancer conference. As you know, Jeff is Mattie's lead oncologist, and he told me that he would be visiting the Wailing Wall and would include Mattie's name in the wall. I asked him to take a picture of this, and this morning my request was attached to an e-mail. Thanks Jeff for remembering to take the pictures and for intiating this touching and meaningful prayer for Mattie. Jeff wrote, "I am attaching the photo of my inserting Mattie's name on a piece of paper asking for a recovery of his health. The second photo gives you a larger sense of the activity at this wall. The Western Wall is not part of the Temple. It is the structure that the Temple was build upon. It is the last remnant of the activities that date back over 2000 years." Specifically, the Wailing Wall or Western Wall is the remains of the great Jewish temple, which had stood for close to 500 years. It is thought by Jews to be the most sacred of places, because the temple itself was thought to be the place where God resides on earth. Praying at the Wailing Wall signifies being in the presence of the Divine. Jews from all countries, and as well as tourists of other religious backgrounds, come to pray at the wall, where it is said one immediately has the “ear of God.” Below you will see a picture of the Wall, and then the picture of Jeff inserting Mattie's name in the wall. Let's hope that Jeff had God's ears today!





When we got to the hospital, we were greeted by Linda. Mattie was thrilled to see her, and of course to have the opportunity to play with her. Linda played with Mattie so I could get settled into the room. I was wondering why the transition went so smoothly, or why I wasn't so stressed out, and the bottom line was Linda kept Mattie busy. Mattie and I played with legos today, we did computer time, and then Whitney and Lesley came in and we all walked to the childlife playroom. Mattie did all sorts of projects in the playroom, such as transforming me into "Cousin It." Any one who has seen the Addams Family, knows that Cousin It, is a character whose hair is in front of his face, and so much hair that you can't see his eyes or any part of his face. Mattie was having a great time at my expense. Then Mattie created a spider and a disco ball as his craft activities. I think that Brandon, Mattie's buddy, inspired him, since Brandon apparently has his own disco ball in his room. You will see the picture of Mattie's spider and disco ball below. The ball is SMALL, but it is hanging from our ceiling! We are now ready and open for parties (kidding of course!). Also check out all the items Mattie carries around on his IV pole. He has it decked out!


This evening Mattie received a new Scooby Doo video from Grammie and Pop Pop, which was a hit! As he was watching the video, he ate an entire plate of spaghetti (thanks Grammie and Pop Pop) and then pizza. The meal was topped off by cheesecake! He had an excellent appetite today! But he is sworn off ALL hospital food, so I always need to have food on hand for him. We want to thank Tom and Kim Strombus for a lovely dinner tonight. Mattie loved the pizza and the cheesecake. Thank you for your thoughtfulness and generosity, though we do not know each other, it is our hope to have the opportunity to meet you one of these days. Below you will see Mattie's face while eating his pasta. There is a certain level of joy and satisfaction he gets from eating and twirling spaghetti.


Mattie's methotrexate infusion began at 8pm. CR (Cecilia Rose), Mattie's nurse, began his infusion. We are saddened that CR is leaving Georgetown. She is leaving for a nobel cause, she will be serving as a traveling nurse in Africa with the PeaceCorp. Some of you may recall, that CR e-mailed me on the day of Mattie's surgery. CR went to church on the day of the surgery to pray for Mattie, and then sent me a very meaningful e-mail. She is a very special person and we wanted to capture her on camera. She has a beautiful smile and is genuinely passionate about helping others. Notice in the picture that CR is wearing those famous chemo rubber gloves I mentioned in prior blog postings. The shocking blue gloves and the highlighter yellow chemo will leave a lasting impression on me!


Tonight, Mattie was visited by Nancy, the art lady. Nancy helped Mattie create a stained glass turkey. No glass, just tissue paper and contact paper, but it looks just like stained glass. Mattie, Peter, and I enjoyed working on this together, and our proud turkey is currently being display on our window. Take a look at Mr. Turkey below.


I want to thank the following individuals who kindly sent Mattie greetings through his PO Box. Thank you Bunny in IN. for the elf story, in which Mattie is the central character. Thank you for following Mattie's progress and all your support. We thank the Hammann and Barker families for their halloween card! Though we do not know Mrs. Bordeleau, we want to thank her and her kindergarten class in Los Angeles for the wonderful bunch of “get well” teddy bear cut-outs. Mrs. Bordeleau is good friends with Hal and Lauren S., a colleague of Mattie's Pop Pop. Thank you Mrs. Bordeleau and all your children for this care package!

On the electronic front, thank you Jay (for the great magic show video), Karen, Cousin Donna, Janie and Sandy, Coach Dave, Susan, and Cousin Rosalinda for all your wonderful e-mails. It means a lot to us to have your support! As we head into the evening, we have no idea how Mattie will react to Methotrexate, nor what our tomorrow will be like. Peter and I meet with Dr. Nita Siebel (from NIH) tomorrow morning. We hope she can shed some light on our confusion about Mattie's post-surgery chemo options. As I sign off, Mattie is wide awake, and building with legos!

Sunday, November 2, 2008

Sunday, November 2, 2008

Message for the day (Thanks Ann!): "Hope does not disappoint." Romans 5:5-11

Mattie had another restless night of sleep, but I am happy to report no nightmares! He is so conditioned now to get up every couple of hours, that it is just a part of our lives now. It makes no sense to even try to work with him on this from my perspective, because in all reality he will just be re-exposed to this sleeping pattern in the hospital. Mattie woke up today with a plan in mind. He collected two packing boxes and other materials and designed his own version of a puppy. "Cardboard puppy" is our newest member to our house. You can see him below.


Mattie had a fun day planned with his preschool buddy, Alex. We met Alex and his family at the Classika Theatre in Arlington, and we watched together a wonderful play called "The Classical Fool." It is a wonderful pantomine piece, and it reminded me of the movies I used to love with the Marx brothers. Telling a wonderful tale without the use of words, just through actions and facial expressions. It is a lost art, but one that appeals to people of all ages. When Mattie met up with Alex, Mattie was a bit grumpy and in a way I notice he shuts down in new situations. But Alex did not skip a beat, and just went with it. In time, as the play began, and Mattie began to laugh, I could see the Mattie I know resurface. It takes longer these days to pull Mattie out of the secure inner world he places himself. But I understand where this is coming from, and I deal with whatever he needs to do to feel protected. However, humor is a wonderful way to forget your troubles and to escape one's problems for a little while. We all enjoyed the play and I am so glad Julie (Alex's mom) suggested this to me. Seems to me the HEM/ONC unit needs to have humor integrated into the lives of its families. It is a cost effective way to positively impact us.

After the play, Mattie went home with Alex, and Peter and I went out to lunch together. It has been a while since Peter and I have had a moment together to just catch up and process what is going on in our lives. So this lunch was a major gift. Peter and I talked about our next steps in Mattie's cancer treatment. We have already made an appointment with Dr. Nita Siebel, at NIH, for tuesday. Nita also plans on putting us in touch with other osteosarcoma folks at NIH and the City of Hope in Los Angeles. Peter and I are finding there are at least two different camps of thinking as it comes to percentage of necrosis. I may not have made this clear in previous blogs, but percentage of necrosis can only be determined through the pathology of a bone post-surgery. In any case, one camp of thinking is that percentage of necrosis doesn't matter (The research shows mixed results. It isn't a guanrantee that >90% necrosis will lead to a good survival rate. In fact the research indicates that >90% necrosis can at times lead to a poor survival rate, and vice verse, that <90% necrosis can lead to a good survival rate. So in essence, the percentage of necrosis is vague at best at being an outcome predictor.) and the other camp believes that the percentage of necrosis is important and will dictate the form of post-surgery chemotherapy. What is concerning Peter and I is that we are getting such different opinions about how to proceed, and we feel we need to get smart on both camps before making a final decision about Mattie's post-surgery chemo regimen. In essence doctors can advise us, but in the end it is Peter and I who make Mattie's final treatment decision. It seems like a lot to bear at this point, but it seems to go with the territory. One thing is for certain though, Peter and I have elected to remove Mattie from the clinical trial he is on at Georgetown, and we told Dr. Toretsky this earlier this week. I feel we can't leave it up to chance and randomization to select Mattie's post-surgery treatment. This decision needs to be an educated one that is tailored toward Mattie's needs. I am all for enhancing research and providing data in theory, but at this point, when I can clearly see that the study won't benefit Mattie, then I feel it is our right to do what is in Mattie's best interest.

Having the opportunity to talk with Peter without interruptions and jumping up and down, is important. We constantly operate in crisis mode, that moments like this now seem almost unnatural to us. The irony is we thought our lives were busy before all this, but we had no idea what busy and totally exhausted means until osteosarcoma hit our lives. When we arrived back at Alex's home this afternoon, we found Mattie and Alex having a great time together with trains and building forts (one of their favorite past times!). Below you will see a picture of Mattie and Alex defending their fort, and Julie and I being attacked. Thank you Julie and Rob for arranging the play and playdate today! It was a hit with all three of us. Thank you also for the Hiss game and the Wikki sticks. We will have fun playing with these!


We prepared Mattie for his return to the hospital tomorrow. He wasn't happy to hear about this, and we explained that chemo probably wouldn't be completed until the spring or summer. That helped him get some idea of the length of time we are talking about, and Mattie also asked about when the three remaining parts would be operated on. So I think he is getting the plan quite well. Mattie had the opportunity to come home and open up some of the packages we have been saving for him. Peter and I save them for certain moments when needed. We want to thank Alex for his creative Halloween card, and our Cousin Mary S. for the wonderful Halloween gifts. We particularly love the special glow in the dark trick or treat bag! This will be a very popular bag next year! Thanks for the chips too, they are coming with us to the hospital tomorrow. Thank you Brian Boru (our feline friend) for the spaceship, knex, dinos, and football flashlight. You are quite a special cat with GOOD taste. Thank you Grandma for the telescope, dino DVD, and the special treasure map from your recent musical at school. Mattie loved hearing that you named a pirate in the play after him! Thank you Jodi H., an RCC mom, for coordinating two classroom gifts to Mattie. We thank the Block room and the Playhouse room for the wonderful dino books given to Mattie. That was very special of both rooms, especially since we have never officially met each other. But I realize we are bonded together through our RCC family.

We want to thank the Doane family for the wonderful dinner tonight from Clyde's. One of our family's favorites. By the way, Mattie drank the entire shake you got him, so your search for a McDonald's making shakes tonight was worth it! Thank you for thinking of him and for the wonderful Star Wars sticker book. As always you spoil us. I do not want Team Mattie to think we take these dinners for granted. We so appreciate Ann's tireless efforts to coordinate the meals, and all the generosity of each family for bringing us food every day of the week. What an unbelievable and loving group you are!

On the electronic front, thank you Grammie for the great pictures and Brian Boru for the wonderful e-card. With the last couple of days I received e-mails from many of the wonderful moms I have met through this ordeal. These are moms of osteosarcoma survivors and/or patients, and their words of support and wisdom are so appreciated. Isn't it amazing how we can feel so connected to each other, and we have never met one another in person!? As we settle down for the evening, I still have to do a dressing change of Mattie's central line, heparinize his central lines, and connect him up to an IV fluid line. No problem, right?! Amazing what you get used to doing.