Saturday, April 25, 2009

Saturday, April 25, 2009

Quote of the day: "In the confrontation between the stream and the rock, the stream always wins--not through strength but by perseverance." ~ H. Jackson Brown

Peter stayed in the hospital last night with Mattie, while I went home. Peter told me that Mattie was up until 1:15am. Together they played Candyland, Battleship, and even watched a movie together. As usual, Mattie was up several times during the night. I love how Peter describes our current state, he says we are both part of the Twilight Zone, or basically in a constant state of fatigue and fogginess. Well put! Peter and I are both happy to report that Mattie's appetite is coming back. Which is fantastic!

Mattie's day started out with a visit from Dr. Gonzales. Dr. Gonzales is the HEM/ONC doctor on call this weekend. Mattie refused to allow Dr. Gonzales in the room to examine him. So Peter joked with Mattie. He said why not have Dr. Gonzales jump into the room like a bunny. Well Mattie liked that idea. Dr. Gonzales is a good sport and can hold her own with Mattie. She jumped into the room like a bunny, and was followed by her residents. The exam must have been a sight to see! Mattie was picking Dr. Gonzales' pockets with his left foot and pulled out her ID and her pager. Apparently Mattie even learned how to use a pager today. He got a tutorial from Dr. Gonzales. Dr. Gonzales had Travis, her resident, go out into the hallway and she had him page her. Needless to say, Mattie caught on quick, and then paged Travis on Dr. Gonzales' pager. I am sorry I missed this dialogue today, but Peter captured a great picture of Mattie and Dr. Gonzales chatting and working on her pager.

Mattie had a very exciting day. It is funny, I thought things were going to be difficult for Mattie and Peter today, because it is a Saturday. But wonderful things have a way of unfolding. Brandon, Mattie's big buddy, text messaged me Friday night and asked if Mattie would like company today. Mattie is usually up for seeing Brandon, and since Brandon is familiar with the effects of chemo, he knows and understands many of the ups and downs Mattie can have in one day. Brandon spent several hours with Mattie today and they started off their day together playing Candyland. Mattie refers to himself as the "King of Candyland."

I hear that Mattie's room was the place to be today. Robbie (a friend of Brandon's and now a volunteer at the hospital) also visited Mattie, and together Brandon and Robbie helped Mattie design a set for their production of Three Little Pigs. In fact, Katie, Mattie's wonderful HEM/ONC nurse, was asked to participate in the play as well. Mattie was Katie's only patient for half of the day and thereby was able to spend one on one time with Mattie. Mattie loved her attention. Before I tell you more about the play, I have a story about Katie to share. Two weeks ago, when Mattie entered the hospital with a high fever and was neutropenic, Katie was his nurse. Despite Mattie being quite ill, he happened to see Katie's beautiful red colored shoes. They are more burgundy than red, but they are special. Mattie started asking Katie about her shoes, and he told her that he liked them. Katie's heart melted, because she said the shoes were new, and it meant a lot to her that he noticed them. Since that time, we have nick named Katie, "Dorothy," since you recall the beautiful ruby red slippers that Dorothy wore in the Wizard of Oz.



Right: A picture of Mattie and Katie!



Back to the story about the play. So they used a large cardboard box and transformed it into a straw, stick, and brick house. Because every good play needs a good prop! Each side of the box represented a different house. The yellow part of the box represented the straw house, the brown pipe cleaner side was the stick house, and the red construction paper side was used to represent the brick house.

Left: The Straw and Brick Houses

Right: The Stick and Straw Houses

After the scenery was created, the story unfolded. Robbie was the narrator and Peter was videotaping the play. Mattie was the littlest pig, Katie was the middle pig, and Brandon was the big pig of the family. In fact, I am thrilled this was videotaped because it was a riot to hear these three oinking like pigs, I would have hated to miss this, so I am glad Peter captured it! The play was taking on a life of its own though, and the actors needed more room to perform. So the play relocated to the childlife playroom. During the transition from Mattie's room, they recruited two more volunteers to be a part of the play. It was wonderful, Mattie had a great time, and he and Katie took bows once the performance was over. Katie told me this evening that this was her first play she acted in ever within the PICU!

While Mattie and Peter were having a dynamic day together, I was home trying to get some chores done, and managed to also do laundry. In addition, Mattie sent me out for particular foods he wanted to eat today, and literally I went to several different stores to meet his needs. My goal was to get to the hospital by 5:30pm. Dr. Bob was visiting Mattie at that time. When I did arrive, Bob, along with Abigail and Katie (Bob's daughters and buddies of Mattie) were already there and Bob had assessed the situation with Mattie's left wrist. I will try to explain the problem to you. In November, part of Mattie's radius (part of the arm bone down by the wrist) was removed because it had a tumor. Well in removing that part of the radius, the growth plate was also removed. Now within the lower arm there are two bones, one is the radius and the other is the ulna. Well the ulna was untouched and therefore has an intact growth plate in it. So in essence what is happening is Mattie's ulna by the wrist is growing (so much for chemo stunting growth!), but of course the radius can't grow because it doesn't have a growth plate, which helps the bone expand naturally. So one bone by the wrist is expanding, and the other can't, which explains the contorted left wrist that we are seeing. Bob says he has some ideas for how to correct this, but clearly it can't be done until after Mattie completes chemotherapy. So though Bob isn't telling me this, I know that correcting the problem will mean more surgery. Not what I want to hear right now.

Once Bob left, I found myself getting very upset. When I am upset, I get snappy and difficult to be around, and unfortunately Peter took the brunt of that, until he pointed out how I was treating him. This is the challenge of having a sick child. As a couple you really can't vent to each other, because we are both dealing with the same issue, and therefore do not have the distance or the perspective to help the other.

However, because it was a beautiful 80 degree day in Washington, DC, I felt the need to get Mattie out of his room and into the fresh air. Katie allowed us to take Mattie to the gardens of the hospital. All three of us went for a walk. While on our walk, Peter took a photo of Mattie and I by a beautiful azalea bush and we also had the wonderful opportunity to look at the Lombardi Clinic's "Elephant Wisdom" statue.

Left: Mattie and Vicki in the hospital gardens.

Right: "Elephant Wisdom," which is a wonderful piece that is maintained by the art therapists in the Lombardi Clinic.

Right: The plaque explaining Elephant Wisdom. It reads:

"Elephant Wisdom was created by patients, families, and staff in pediatric hematology/oncology at Georgetown University Hospital's Lombardi Cancer Center, as part of their art therapy program. Since elephants are thought to be lucky, the children reason that they can make wishes on the elephant. We have covered ours with wishes and added facts about elephants. We have also shown the elephant's bones, as in an x-ray. Since so many of the kids have had such tests. We hope you enjoy our wishes!"

Left: Mattie in front of Elephant Wishes. However, look closely. Do you see Curious George on the elephant? Well this is a clay piece that Kathleen (one of our great HEM/ONC nurses) created for Mattie to go on the elephant. Kathleen wrote on Curious George, "I wish for a Mattie Miracle, Love Kathleen."

Left: A close up of Kathleen's Curious George dedicated to Mattie!

When we got back from our walk, Mattie decided to wash a rock he acquired along the way. Mattie loves to find things and keep them, to remind him of what he experienced. Perhaps he learned this from me, since we are both rather sentimental. However, I think Mattie is more of a pack rat than myself! While Mattie was washing away, I observed Peter watching the Red Sox game on TV. In between watching, I noticed he kept text messaging someone. I really had no idea who he was communicating with, until he started laughing. Who was he texting back and forth? Dr. Bob! Bob is technically a Yankees fan (which is hard to imagine since Ann, his wife, is a die hard Red Sox fan), and Peter and Bob were exchanging barbs at each other about the game. It had me laughing, because despite Bob being an outstanding surgeon, he is also just like the rest of us. He is a devoted parent and a person who can joke around about a Red Sox/Yankees game. I have never had a friendship before with any of my doctors, Bob is a first!

Ellen is Mattie's night nurse tonight. Ellen is one incredible HEM/ONC nurse. You always know you are in good hands when it is Ellen's night. Peter tells me that Ellen brought in a birthday present for Mattie. She got him a wonderful Scooby Doo tote bag, filled with a color explosion craft project and a wonderful and creative story about bugs! I think Ellen knows Mattie well!

Tonight, I am writing this blog from home. I will head back to the hospital tomorrow, and switch places with Peter for the night. It is possible Mattie may clear Methotrexate as early as Sunday. However, I am hoping that he does not, because Mattie will need an infusion of MTP-PE on Monday. If he is released from the hospital on Sunday, I will just have to bring him back for a full day in clinic on Monday. In my perspective, you might as well just leave us in the hospital, but I will keep you all posted.

I end tonight's posting with a message from my friend Charlie. Charlie wrote, "Mattie had a pretty good day overall on Friday, lots of attention and playing and eating! Certainly good to hear that! All I can say reference Mattie's wrist is, don't feel guilty. Whether you did not see it before, thought it was normal or felt that this was just one thing too many, doesn't matter. There is time to deal with this and it will be evaluated and the options will be put forward. There is too much for one person to do to monitor everything, especially when you have to do it on little or no sleep. This is not life threatening regardless of the outcome (a brace, PT, etc) so let it go. You are an amazing mom and a wonderful advocate for Mattie and this is not a failure on your part. You are surrounded by medical personnel including physical therapists, occupational therapists and others and they did not see it either."

Friday, April 24, 2009

Friday, April 24, 2009

Quote of the day: "We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty." ~ Maya Angelou

Mattie had quite a night on Thursday. He was very entertaining, talkative, and wanted to have fun. We played all sorts of games such as letter games, Candyland, and even Battleship until 1:30am. Mattie could have kept on playing, but enough was enough, and I needed to sleep. Mattie was up and down throughout the night because he had to go to the bathroom due to all the IV hydration he is given to flush Methotrexate from his system. Mattie's night nurse on Thursday was Erin. You may recall Mattie and Erin have a deal going in which he gives her hugs and in return he receives empty syringes. So they got along fine last night and he even allowed Erin to sign his cast! But poor Erin, when she had to take blood from Mattie at 5am, he wouldn't cooperate with her. He literally was sitting on his central line tubes and wouldn't move. So I got up and sat next to him, rubbed his head, and helped Erin fish around for the tubes in the pitch darkness of the room. We were both a sight!

Mattie's nurse today was Tricia. Tricia was one of our first nurses back in August to give Mattie chemo. She has been through a lot with us and has helped me in difficult times with Mattie. Tricia is a wonderful advocate and I have witnessed her speak up on our behalf many a time so that things would run smoother for Mattie. You don't forget those acts of kindness. Tricia started my day off with hot tea. She always spoils me this way, and after a night of very little sleep, hot tea was very needed. Mind you I went to bed at 1:30am, was up every two hours or so, and then finally got up at 6:40am. So I was a zombie today, on top of my already sleep deprived state. Tricia, like many of the other wonderful HEM/ONC nurses, told me today that she reads Mattie's blog and is humbled by it. She says that it makes her appreciate what she has and how lucky she and her family are to have their health. I think these HEM/ONC nurses live Mattie's illness and his treatment with me, but the blog may reveal my feelings about all of this in a way that may not be transparent otherwise. I was honored to hear that our nurses take the time to read Mattie's blog, and to me they are the unsung heros who help us each and every day. They look out for us, take excellent care of Mattie, and make an unbearable situation more tolerable.

Though I think Mattie's health situation is particularly devastating and painful to accept, one thing is for certain, when living in the PICU there is an inordinate amount of suffering that we witness and observe. For example, there is another family within the PICU whose teenager has cancer, a different type of cancer than Mattie's. The cancer has left this young fellow mostly blind, unable to hear, and wheelchair bound. When I think I am having a hard day, I think about the challenges this fellow faces and has to deal with each day, along with his family who cares for him religiously. I know the old saying that God only gives those as much as they can handle, but I am not sure sometimes. It seems to me, I am witnessing a lot of things that are almost too impossible to handle, manage, and accept.

At around 11:30am, Ann came to visit us. Mattie was still sleeping! In fact, he did not wake up until 1pm. It is hard to know if he was tired or perhaps not feeling well. Ann brought a box full of Mattie walk brochures and flyers. They look wonderful, and I have been distributing them around the hospital. Ann also brought me some wonderful breads and a great lunch that the Dunn family provided us. Thanks Kim for the delicious sandwiches and treats. Mattie loved the panda thermal cooler bag with all the Easter eggs inside! Ann stayed with Mattie for almost an hour while I went outside to get some fresh air. Thanks Ann for giving me a break, and for making the trip into the city, when you had a meeting in Alexandria, VA at 1pm.

When Mattie awoke, Meg had arrived. Meg worked with Mattie today for about three hours. During that time Mattie managed to see Anna (his PT), who measured his right leg for a dynasplint. I attached a link, in case you wanted to see what this knee extension device looks like. The thinking is once Mattie's cast comes off, he will need something to help him maintain his extension, so that the leg doesn't freeze back up on him which could require another cast. http://www.dynasplint.com/type/knee.php

While Mattie was with Meg, I actually left the PICU floor and sat outside to get some fresh air. It was a beautiful and warm day in Washington, DC. I sat in the sun, something I normally do not do, but being cooped up inside for months on end, I feel as if I look as sickly as Mattie. I had lunch outside and had an opportunity to have an uninterrupted phone conversation with Peter and then my mom.

When I arrived back in the PICU, Mattie did not seem like himself. He and Meg were in the childlife playroom, and he was pale and quiet. I noticed Mattie and Meg built a beautiful aquarium, including paper fish, which was made out of a cardboard box. But shortly there after, Mattie wanted to head back to his room. We learned that today is Meg's birthday! Even though Meg completed her internship and is headed home in about a week to graduate, she still came in to work today for us, on her birthday no less! Meg also gave Mattie and I these lovely handmade wrist weavings that her family received from their mission work in Africa. Mattie was thrilled to have one to wear, because apparently he has been admiring the one Meg wears. I look forward to having Meg around next week as well, when Mattie receives his second infusion of Methotrexate.

Once Meg left, I challenged Mattie to another game of Battleship. When I play with Mattie, I try to give him every advantage so that he can locate my ships. Mattie is not much of a board game fan, but it is my hope that having him experience the fun of playing, and allowing him to have the confidence to try things out, make mistakes, and yet feel the excitement of winning, that this will inspire him to continue to play. Once he understands the nature of the game, then I feel he can handle the competition between players better. While I was playing with Mattie, Tricia came in to give Mattie some medicine. One thing led to another, and Mattie recruited Tricia to be his Battleship assistant. Mattie had a really good time playing with Tricia, so much so that he asked her to come back to his room and play Candyland with us. Tricia was balancing other patients, but she did manage to play a round of Candyland with us, which made Mattie very happy. While he was waiting for Tricia to come in and play Candyland, Mattie was singing a mantra of "Tricia, Tricia, Tricia, Linda!' It was a riot, because I think he really believed if he sang it enough, somehow both of these ladies would magically appear to play Candyland with him. After the game was over, Tricia left the room. But minutes later Mattie called Tricia back to give her a hug. It was very sweet, and Mattie also allowed Tricia to sign his cast!

Meanwhile this afternoon, Peter had a meeting at the St. Stephen's and St. Agnes School's upper school campus (where Mattie's walk will be taking place). Peter met with Coach Dave, Ann, and Samantha (an assistant athletics director on campus). The meeting enabled Peter to see how things would be set up on the day of the walk. Peter felt very good about the meeting, and was so pleased and impressed with Coach Dave's ideas and plans for crowd management and for pacing of the events. Thanks Dave for all the incredible work you are doing to ensure the walk is a success!

When Peter arrived at the hospital this evening, he also had to play Candyland with Mattie. Like me, Peter lost miserably to Mattie. Mattie was happy to see Peter and they were looking forward to a boys night together!

We want to thank the Peterson family for a wonderful dinner tonight from Legal Seafood.
Karen hand delivered us many tasty treats (thanks Karen, it was wonderful to see you!), and literally Mattie ate like no tomorrow! He ate shrimp, sweet potatoes, and a roll with butter. It was truly impressive. I think he ate more tonight than what I have seen in a week! The power of Legal Seafood!

I was planning on staying late at the hospital in hopes of seeing Dr. Bob. Dr. Bob was planning on checking out Mattie's wrist and then rewedging Mattie's cast tonight. I wanted to hear Bob's perspective on the wrist, so I was desperately trying to maintain my energy to make it until he arrived. However, Bob called me and was still stuck at work, and headed to perform another operation at around 8pm. Bob wants to see Mattie on Saturday to check out the wrist on his left hand. Bob wanted to know why I hadn't mentioned the wrist to him before. Honestly I have no real answer for this other than, I thought perhaps this is what the wrist would look like after a bone graft. Or maybe deep down, I just can't handle one more problem, and was in denial. Not sure, but I guess not vocalizing my observations doesn't seem to be consistent with my usual style. Bob and I did talk about how this wrist situation could be straightened out (which relieved my fears), and I really look forward to hearing Bob's final verdict when he examines Mattie tomorrow. Mattie's cast rewedging procedure will most likely happen on Monday.

As we head into the weekend, Mattie will remain in the hospital as he clears Methotrexate. It is my hope that he will be discharged sometime on Monday, and then be given two days at home, before returning for the next round of Methotrexate on Wednesday or Thursday of next week. However, on Tuesday, my parents are flying back into town. They will be staying in DC for at least a month or longer, depending on the kind of support we will need for Mattie's third surgery.

I end tonight's posting with a message from my friend Charlie. Charlie wrote, "Usually as our children go from infant to child to adolescent, they and we face some challenges and obstacles but they are usually relatively minor, negotiated in days or sometimes weeks and forgotten in the long run. Instead of that, your family has had a series of changes and challenges that most of us will never have to deal with. Pain, multiple surgeries, tests, exhaustion and lots of sleepless nights all take their toll on your stamina and strength. Unfortunately, like the transition from crawler to butterfly the choices are to change or expire. You've made the challenging decision to go for it and now Mattie is going through this transformation; regaining many of his lost skills and gaining new ones. None of us would choose this way of doing it, it takes real courage to face it down everyday and keep going. Keep going, one who has not seen a caterpillar enter a cocoon and a butterfly emerge would ever believe that it could happen, but it does."

Thursday, April 23, 2009

Thursday, April 23, 2009

Quote of the day: "The smallest deed is better than the greatest intention." ~ Unknown author

Mattie and I headed to the hospital today and we arrived around noon in the clinic. Mattie was greeted by Jenny and Jessie and as soon as his vitals were taken and his blood was drawn, he headed to the art table. Mattie at first wasn't sure what he wanted to do, but then he spotted a cross stitching hoop in one of the art boxes. One thing lead to another and he used the hoop as the door into the space ship he created. In addition to designing a space ship out of a cardboard box, he also designed his own space aliens. This took on a life of its own today, and in fact, two other children came over to play with Mattie and the space ship. Of course no play scheme would be complete in the clinic without Mattie's pretend character Pinkie and his other creation, Nanny Nobody. Nanny Nobody is who you call when all else fails, and Pinkie needs to be disciplined and reined in. Jenny and Jessie played with Mattie for some time, and then they said their good-byes and headed to their conference in Tennessee.

However, the good news for Mattie was that Meg (one of Linda's former childlife interns and Mattie's racing buddy) came in today to play with him. I have asked Meg to work with us for the next two weeks while she is in town. It was delightful to have Meg around and she stepped right in, played intensely with Mattie, and did not skip a beat. Meg even helped me while Mattie was getting an x-ray today! Her help was invaluable, because while she is focused on Mattie, I can oversee what is happening and going on with his treatment. Dr. Bob ordered an x-ray today of Mattie's arm. The irony is Peter and I have noticed over the past couple of weeks that Mattie's left hand is angled toward his body. He can't straighten out his hand, with his fingers pointing away from his body. I made a mental note of it, but I figured this is the result of a bone graft and just chalked it up to that surgery. Frankly with everything else we are dealing with, I never gave Mattie's left hand much attention until the x-ray results!

Linda came down to the clinic to say hi to Mattie and I told her about our need for an x-ray. Linda mobilized forces and helped coordinate things for us so that Mattie could get an x-ray before his favorite x-ray tech, Theresa, left for the day. The right tech can make a huge difference for Mattie. This took coordination because we were unable to check into the hospital until after 3pm. There were no beds available. So we camped out in clinic for several hours before we could be admitted. Dr. Synder even gave me the option of starting chemo on Monday instead of today, but when I pulled out the calendar, I realized we really had to start today, otherwise, Mattie may not be healthy enough to attend his own walk.

Dr. Synder was very attentive and helpful to us today. She spoke with me in clinic about Mattie's pending surgery, and answered some of my concerns that I have been reflecting on. When Peter and I met with Dr. Chahine, he mentioned that he wouldn't recommend lung surgery if other primary tumors appear on the CT scans post-chemotherapy. This piece of information has been whirling around in my mind. At first I did not think much of it, other than what he was saying was a fact to consider. But as time passed, I thought perhaps he knew something from Mattie's scans that I did not. So I asked Dr. Synder about this. Dr. Synder said that Dr. Chahine was concerned about Mattie's most recent right arm CT scan. You may recall that the last time Mattie's scans were done, the nuclear medicine doctor practically gave me a heart attack. He couldn't understand what he was seeing, so he had the tech continue to do more bone scans on Mattie. It turned out that the worry was over calicification, which Dr. Bob has explained to me is a very normal reaction to such a limb salvaging surgery. Needless to say, I think Dr. Chahine's comments were reflective of this concern, but we all defer to Bob's expert opinion on the right arm, and so for the moment, I have to believe that Mattie has no other primary bone tumors.

Later this afternoon, Dr. Synder found me and told me that the radiologist who read today's x-rays feels that Mattie has fractured a bone in his left wrist, which could explain why his left hand is twisted inward. None the less, Mattie's arm pain, from sliding out of his wheelchair, is not down by his wrist. The rest of Mattie's arm x-ray was normal. I called Bob immediately, and Bob wants to examine Mattie tomorrow to determine the status of things. However, Bob looked at the x-rays from his hospital across town, and his initial feeling was that the bone wasn't fractured. Dr. Synder did observe Mattie playing today, and Mattie can handle great pressure on his left hand, and she felt if he had fractured a bone, he wouldn't be able to tolerate the games he was playing.

What was Dr. Synder observing? Well this afternoon, Anna (Mattie's PT), Sarah Marshall (Mattie's wonderful HEM/ONC nurse), Meg, Chrissy (the dance therapist), and of course Mattie acted out the Eric Carle story, The Very Hungry Caterpillar. It was a wonderful sight to see. Mattie loves the story, and he had a great time acting it out. The funny part was he was so engrossed with the story, I am not sure he realized he was moving his body, his arms, and even taking a few steps WITHOUT the walker! I snapped some pictures of this art in motion.

Left: Chrissy gave everyone tissue paper butterfly wings which are attached to their backs. Here you can see the caterpillars inside their cocoon, waiting to emerge as butterflies.

Right: The Mattie butterfly has emerged, and is taking butterfly steps with Anna and Meg.

When Peter arrived at the hospital after work, he brought all our things from home. I began to unpack Mattie's room, and then I went to pick up dinner for us. Peter headed home tonight, and I am at the hospital with Mattie as he gets an infusion of high dose Methotrexate. I am thrilled to report that Mattie started chemotherapy at 5pm, rather than 10pm. This occurred because Mattie's nurse in the clinic had the where with all to start him on an IV hydration that included bicarbonate to help make his urine basic. Mattie's urine pH must be around 8 in order to qualify to receive Methotrexate. Typically it takes Mattie six hours once he is admitted to the PICU to reach the appropriate pH, but since this hydration was started in clinic, by the time he checked into the PICU, he was ready to go. Fabulous. So tonight, I will be playing the urine capturing game. Methotrexate is a VERY high maintenance drug, because Mattie's urine must be monitored every four hours and then his blood must be taken every day to assess how the Methotrexate is leaving his body. To qualify to be discharged from the hospital, Mattie's blood Methotrexate level must be .1 or below, this usually takes Mattie four to five days to achieve. In order to flush this drug from his body, he is placed on very large amounts of fluid. So he is going to the bathroom every two hours. So consistent with my life, there will be no sleep tonight. I can't wait until tomorrow night. Friday and Saturday are my OFF nights, and Peter takes over. I need a night of sleep, as the week wears on and I don't get consistent sleep, my migraines get worse, and I feel more and more weak. Thankfully, Meg is coming back to help me tomorrow! At the moment, Mattie is playing with a wonderful educational toy Linda gave him today. It is a word, letter, and number electronic tool, in the shape of Wall-E!

Peter and I want to thank all of you who are pre-registering for the walk. We want to thank you for passing along the flyer and the website to your friends and family, and having them support Mattie. We are touched by your kindness and generosity. In fact, I received a lovely e-mail today from Mary D. (a RCC mom and now friend). Mary let me know that she and her two lovely daughters went door to door to local restaurants and businesses today to advertise Mattie's walk. They handed out flyers! If this is not the epitome of community spirit and support, I don't know what is. Thank you Mary for sharing your story with me today. It means a great deal! We also learned today that Mattie's walk is listed on the HEM/ONC nursing calendar, and we hope many of these fabulous nurses will be able to be at the walk. I know you have read about these incredible ladies for months now, and you deserve to meet them in person, along with Linda, Anna, Jenny, and Jessie.

I end tonight with a message from my friend Charlie. Charlie wrote, "What struck me most about Wednesday's blog was how even the best days have upsetting or down sides to them. I think it was wonderful that you had time to get out and run errands, however in a normal life, none of us would remark on that. Whitney's gotten her first job (truly something to celebrate) but it means she will be moving on and no longer available to be with Mattie on a weekly basis. Every positive has its matching downside. I read how you connected the film to cancer as the hunter and bodies (i.e. Mattie) as the hunted. I definitely see that connection but I also see the hunted in this (i.e. the doctors) setting traps for the hunter and working to reverse that equation. The traps and snares may still be inefficient but progress is being made and hopefully their efforts will pay off for Mattie. And lastly I would like to note the thoughtfulness of Jenny and Ruby which went above and beyond for Mattie. Most of us would have stopped at the effort to open the shop and when that did not work, would have said, "I gave it my best" but they found a pin and a cap so that Mattie did not have to go home empty handed and the event ended on a very positive note rather than on a negative one. This is so important when you are making life memories. Thank you to these special people."

Happy Earth Day!

Wednesday, April 22, 2009

Quote of the day: "When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child." ~ Sophia Loren

Before I begin tonight's blog posting, I want to thank you for pre-registering for Mattie's walk on May 9th. We truly appreciate your support, contributions, and energy behind this special event!

Whitney (one of Linda's former interns) came over today to play with Mattie for four hours. Whitney just landed a full time job, so this is my last week day that I will have help. I will miss my couple of hours to myself on Wednesdays and I know Mattie will miss seeing Whitney as well. However, we couldn't hold Whitney back. She just graduated from college and I know finding your first job is no easy decision or task. So I wanted to make sure she knew we supported her decision. None the less, it leaves a void in our life. While Mattie was having a good time with Whitney, I left the house and did a couple of chores and then met up with Ann for lunch.

While Ann and I were at lunch, we saw another SSSAS mom, and said a quick hello to Laurie. After lunch, I went with Ann to visit her parents. Ann's parents were both resting when we got there, but Ann woke her mother up, and Mary (Ann's mom) and I spoke for about an hour. I really enjoy hearing Mary's stories and her reflections. She apologized to me today for being boring. I told her that there was nothing she was telling me that was boring. After all, what could be boring about hearing about someone's life. Mary and Ann's dad always ask me about Mattie, and they know what it is like to have a son with cancer. Mary and I discussed our lives, and I said to her that I feel like I exist but am not really living. This was a first for me to actually express this, but for Peter and I, we live from one crisis to the next, one task to the next, and the fun and spontaneity of life is gone. This is NOT the NEW NORMAL (which is a terminology I STRONGLY dislike), but a special torture that with each day sucks the life out of us.

When I got back home today, Mattie was having a good time playing with Whitney. In fact, Whitney was playing the game that Mattie, Alison, and I invented on Tuesday. Clearly Mattie enjoyed that pretend story we created with the bunnies. Mattie wound down a bit this afternoon, and we watched a Scooby Doo video together, but in the midst of all of this, I noticed that Mattie's left arm continues to bother him. So tonight, I sent Dr. Bob an e-mail because I rather play on the safe side than to assume that nothing is wrong. I know that the pain was caused from him bumping himself on his wheelchair, but what damage he did in the process, I have no idea.

When Peter arrived home, we all headed to the Newseum. Jenny (one of Mattie's art therapists) invited us to attend the movie screening of Earth produced by Disneynature. Disneynature is a brand new film label, that from my opinion it trying to blend education with entertainment. In addition, to the film series, each movie will have companion educational activity guides and educator guides. The movie Earth tells the remarkable story of three animal families and their amazing journey across the planet. I attached a trailer for the movie, if you would like to see it yourself: hbx.hrf=http://disney.go.com/disneynature/earth/earth_core.swf
The cinematography is incredible and there are many memorable moments in the movie. When we arrived at the Newseum, everyone was so thoughtful and kind to us. We were assigned a Newseum representative, Ruby, who couldn't do enough for us. She helped us get settled, got Mattie popcorn and water. She even secured Mattie a special chair so he could see over people's heads. We also had the wonderful opportunity to meet Jessica Moore from the DC Disney office, who helped us get into tonight's event, and you may recall she also secured us Lion King tickets when we went to New York. Another treat for the evening was meeting Jenny's parents. They are delightful and down to earth, so it is no surprise where Jenny comes from. They both made it their business to introduce themselves to Mattie tonight, and I was touched by their kindness.

Before the movie began, we heard from two congressmen, Rep. Markey and Rep. Upton (co-chairs of the US Energy and Commerce Committee), and two Disney representatives. Mattie was glued to the movie as were we. However, I came to a realization while watching the movie. The movie discussed how animals around the world fight for their lives and survival each day. Because in the hierarchy of animals there is always an animal that is the hunted and another that is the hunter. Unlike our animal friends, most of us do not live with the threat of our physical survival and safety each day. When I heard this in the movie, it hit me. Though clearly, my family's situation is different from these animals, one thing is similar. When you live with cancer, the cancer is the hunter, and the body is the hunted. Sounds primitive, but true. What makes our life so uncertain each day with Mattie, is we don't know what is in store for us with this terrible disease. It is just as devastating as a lion stalking an elephant. We live with this intense fear which brings about that flight or fight response. But unlike the elephants who experience two minutes of panic during their days, we live in a constant hyper alert state of stress. None the less, this movie gave me a greater appreciation for the animals on our planet and what they must overcome for survival. In a way, the movie forces you to think beyond yourself which is a very important and humbling thing to do.

As the movie came to an end, Mattie worked himself into a state, because he wanted to go to the Newseum's gift store. It was important for him to bring something home from tonight's adventure. As I was trying to figure out if this would be possible. Jenny came over to chat with Mattie and she stayed with us for quite some time. I found Ruby, who was assisting us all evening, and asked her if she could help me secure something from the gift store. Ruby tried to get the gift store open, but it was closed and no one had the security code to open the doors. Ruby broke the news to me without Mattie present. Jenny observed this discussion happening in the background and ran over to her dad, and literally took his wonderful Disney pin off his suit. Jenny gave the pin to Mattie in hopes that it would bring a smile to his face. In addition, Ruby was able to track down a Newseum baseball cap, and she gave that to Mattie. So Mattie left with two great items for the evening! He of course was happy. But Jenny and Ruby really went out of their way for Mattie tonight. Ruby doesn't even know Mattie, but she couldn't do enough for us, and it restored my faith in the goodness of others (who do not know us).

We would like to thank the Putnam family for a wonderful dinner. Mattie loved the Scooby gift as well. Thank you Grace for the support and wonderful note! As we head into Thursday, I will be taking Mattie to the clinic. If Mattie meets his counts, he will go inpatient to receive high dose Methotrexate.

I end today's posting with a message from my friend Charlie. Charlie wrote, "Tuesday was a perfect example of above and beyond on Mom duty. No one who has not spent a day with an ill child who has enough energy to play can appreciate what a mom does. This reminds me of when I was home with a child with measles but that was only for a week rather than months and I remember how exhausted I was at the end of the day as the on call nurse, playmate, etc. That duty did not include physically moving a child who is only partly mobile, pushing a wheelchair for distance (should be an Olympic sport) and doing all this on limited sleep. And, oh yes, doing this for months on end and not for a week. Truly Vicki, I don't know how you do it and I cannot tell you how much all of us who read the blog daily admire and are amazed by your caring, compassion and determination day in and day out."

Tuesday, April 21, 2009

Tuesday, April 21, 2009

Quote of the day: "The whole idea of compassion is based on a keen awareness of the interdependence of all these living beings, which are all part of one another, and all involved in one another." ~ Thomas Merton

Before I tell you about Mattie's day, I received some very sad news tonight from one of my students. I learned that my former student, Pam, died on Sunday. We are all so devastated by this news. Pam developed an infection, which literally took over her body rapidly. Pam was a very sensitive, loving, sincere, and bright individual. In fact, once she was no longer my student we would occasionally meet for coffee while Mattie was in Kindergarten last year. Pam also visited Mattie in the hospital several times and she would write to me periodically to support me in my caregiver role. This year has left me pausing a great deal because I do not understand the medical tragedies I am seeing and deeply experiencing. So this evening, I write with a heavy heart because in my opinion the world lost a special individual.

Mattie had a TERRIBLE night of sleep on Monday. He couldn't fall asleep, so he decided to pull out his Leapster for a while. That was a first! Mattie seems opposed to electronic media as forms of entertainment for the most part. However, once he fell asleep it seemed like he was up almost on the hour. He couldn't get comfortable, he had to go to the bathroom, and worst of all, he was frightened and scared. When I asked him what he was frightened and scared about he told me he couldn't say. I wasn't sure if that meant he did not know, or he did not want to tell me. I followed up with him this morning about his feelings, and he had no recollection of waking up during the night.

Despite going to bed late, Mattie was up at 7:30am and was ready to go. This is the beauty of a seven year old body, but I wasn't as perky. I tried to sleep another half an hour while he continued to play with his Leapster, but that did not last long.

When Mattie went downstairs today, he pulled out an educational tool that Charlotte gave him. It basically helps Mattie learn about basic letters and words, simple addition, and matching shapes. I was thrilled to see Mattie pull this out, and he and I played with it for over an hour!

Later in the day, Mattie and I were fortunate enough to have a visit from Alison. Alison was our mid-day helper today, and Mattie was excited about Alison's visit. I think Mattie gets a kick out of Alison's sense of humor. Alison is a SSSAS mom, and Mattie and Alison's son Paul were classmates last year in Kindergarten. The irony is Alison and I never had the opportunity to chat with each other much last year. We have certainly made up for lost time this year. Alison continues to be extremely supportive of my whole family, and to put things into context, Alison is our Team Mattie Communications coordinator, and also manages Mattie's Fund. Alison brought Mattie his favorite frosted cookies today, which he requested. He can't get enough of these cookies. Which is fine with me, I welcome sugar and fat! Quite a commentary from a mom about her child's diet, no? Alison also brought Mattie donuts, a wonderful party goodie bag, and a cute little wind up bunny on a bicycle that is carrying a load of jelly beans. Thank you Alison for the soup and for the grocery store items.

Mattie has a way of coming up with some very creative ways of playing. Mattie took out all his wind up animals, Alison's bunny, Linda's pooping cat toy, Alison's chicken that lays eggs that she gave him during her last visit, Tanja's gross frog, Tamra's dinosaur Easter egg, and all of Ann's Easter basket items and created a whole play scenario with them. Mattie also used the boat he made in clinic on Monday, Easter grass from his Easter basket, Lego people, and the list goes on. But the basic premise of the story was there were three bunnies. These bunnies came upon a junk pile of toys, but it wasn't an ordinary junk pile. This pile had an inhabitant, a scary pink Easter egg that transformed itself into a dinosaur. The bunnies were terrified of the dinosaur. So the entire play centered around how to escape from this pink dinosaur, and believe me it became interesting. The bunnies escaped by boat and then by plane. In the midst of this, the bunnies were also aided by a coast guard Lego man, and two army parachuters. Alison played one army man, the goofy one, and I played the serious one. Needless to say, the dialogue between Alison's army man and mine caused Mattie to laugh so hard he got the hiccups. Alison and I played for two straight hours without breaking! I think Mattie enjoyed himself, and loved the opportunity to play with someone other than myself.

After Alison left, Mattie wanted to go for a walk down to the Washington Mall. So I packed up some food for him to eat, and brought an umbrella and a blanket, because I sensed a change in weather approaching. As I was pushing Mattie's wheelchair to the Mall, I realized just how tired I was. In fact, I am so sleep deprived and physically exhausted, that expending any unnecessary energy is not wise. Pushing a wheelchair down and up hills practically knocked me out. As I was midway, I thought how on earth am I going to make it to the Mall and home again? At one point it was so concerned about this, I pictured myself calling Peter from my cell phone. However, I managed, but it look a lot of mental fortitude to get me through the walk. You would think by now, that I would be used to seeing people stare at Mattie as we are out on the street walking. But sadly, NO, I haven't gotten used to it. It is hard to have a thick skin and not let other people's actions affect you when you are in such a fragile state yourself. I think dealing with cancer is complicated enough, but Mattie sticks out even more because he is in a wheelchair. Top it off, in the summer months, Mattie's surgery scars will be very visible. So this should prove to be another interesting and humbling life lesson. As any parent knows, when something happens to your child (a bad day at school, trouble making friends at school, etc..) it is hard not to take this personally and in some ways it pains you even more than if the issue where happening to you directly. Needless to say, Peter and I are experiencing pain this year that is indescribable.

Mattie and I did stop for a while once we got to the Mall and watched the birds, squirrels, and people. Mattie also ate crackers and cheese while we were resting. There were a few squirrels that made us laugh. I do not like squirrels at all, and several I felt were stalking us for food. There was one squirrel in particular who was having a staring contest with Mattie and I. I had to take a picture of this character. You can see the squirrel just clinging to the bark of the tree, and not moving! Mattie and I also got the chance to observe a Mother duck and her two ducklings today. Mattie loves the ducklings, and the these two ducklings caught the attention of everyone passing by.

When Mattie and I got home from our walk, we played with his race cars, and had several races on the living room floor until it was time for dinner. We want to thank the Coker family for a very generous and thoughtful dinner. I can't thank you enough for the beautiful strawberries and chocolate cake. That made my evening.

Mattie seems played out tonight and a bit tired. He is complaining that his left arm hurts him, and I think he may have bumped it as he moved himself out of his wheelchair today. Typically I transfer him all the time, but today I apparently did not move fast enough for him, so he took it upon himself to move. So something else to keep a watch out for.

I would like to end today's posting with two messages I received today. The first message is from my friend Charlie. Charlie wrote, "Well, Monday was exciting both for the friends you got to see and for Mattie's unusual (for him) reaction to the MTP-PE. I am glad he had a relatively rapid recovery and is back home. I loved Charlotte's comment about Mattie's cancer being "so unfair;" this is something adults think but most will not say out loud. Children can be so much more observant, empathetic and honest than we give them credit for. That's why we are always so surprised when they give us these sorts of behaviors. But children learn by what they see other people do, and you and Peter and the SSSAS community are certainly an example of the kind of adults we want all children to grow up to be. I would like to echo your friend Nancy's comment from Sunday's blog; Vicki, your blog is a gift to all of us who read it. It reminds us to stay in the present, to be grateful for all gifts large and small and to take nothing for granted. It is a daily reminder for me to pray, to reflect and to remember to be patient; thank you for the gift of emotional and spiritual growth."

The second message is from friend Carolyn. Carolyn is a RCC mom and friend, and Mattie and her daughter, Ellie were in the same preschool class together. Carolyn wrote, "I know I have said this before – but each day when I read the blog I am in even more amazement of your stamina, your commitment, your motherly love – I could go on and on. You are truly an amazing woman and Mattie is so lucky to have you as his Mom. God knew what he was doing when he gave you Mattie. It is clear to me that God’s plan was for you to use this nightmare of a year to bring greater awareness to so many. Although it is a living hell for you, you find the time to advocate for others, share such valuable life lessons with us, and show so much compassion and caring for everyone around you. Wow!"

Monday, April 20, 2009

Monday, April 20, 2009

Mattie's Quote or memorable dialogue of the day (Thanks Jenny!): Mattie was at the art table in clinic today and he started counting in Spanish. Jenny asked Mattie where he learned to count in Spanish so well. Mattie's response: "I learned from my Dad. Dude.... you know he is from Boston!"
We found this SO hysterical, because in Mattie's mind everyone in Boston speaks Spanish, as if that was the State's official language!

Quote of the day: "There are no unimportant jobs; no unimportant people and no unimportant acts of kindness." ~ Anonymous

No matter how early I get up, get ready, and prepare things to leave for clinic, I just do not seem to be able to get there until close to noon. Mattie got up this morning and had a slow start, but he cooperated and got ready to head out for the day. But what a LONG day it was. Mattie and I did not return home from clinic until 7pm! So we had a seven hour day in clinic!

When we arrived in clinic, a birthday party was under way. Another patient, who is much older than Mattie, but also has osteosarcoma, was celebrating her birthday. She chose a fun theme, and served non-alcoholic margaritas, chips and salsa, and of course cake. Mattie tried the margarita but did not care for it, in fact he puckered his lips from the sour taste! None the less, Mattie ate chips and cake! It was a fun way to start off our clinic day. Then Mattie had his vitals checked and a blood draw. It turns out Mattie's white count fell, and he is neutropenic again. His absolute neutrophil count was 400 today, and it was 1400 on Saturday. Mattie's platelet count is rising, it was 29 today, up from 18 on Saturday, however, his count needs to be 50 or higher to qualify for chemo. So we are heading back to clinic on Thursday in hopes that his body will be ready to receive high dose Methotrexate. If his counts look good, he will be admitted on Thursday.

So what took up the rest of our time in clinic? A MTP-PE infusion! At lunch time, Ellen (Charlotte's mom) came to visit us, and brought us both a wonderful lunch. Ellen knows how much I love mango chicken salads and she introduced me to a lovely carrot cake today. Normally I am a chocolate person, but this carrot cake was hard to resist. Ellen also gave Mattie a special baseball hat that she got for him from Legoland in the United Kingdom. It was also Mattie's favorite color, red! I continue to be touched with others who consistently think of Mattie on their vacations. It means a great deal, and it makes us feel like you not only thought of us while on vacation, but that you wanted to share a part of your trip with us. How special, and in that sense, we are a lucky family. Of course, I think our luck ends at that point!

While Mattie was playing non-stop with Jenny designing a "haunted boat," I had the opportunity to sit with Ellen and chat with her. I continue to be in amazement and deeply touched with how much Charlotte (One of Mattie's first friends in Kindergarten, and what you need to understand, Mattie and Charlotte were talking about marrying each other last year. It was very cute!) thinks about and misses Mattie. I am not sure why this surprises me, maybe because I figure this type of caring and concern are more typically expressed in adults. I think I expected many of Mattie's friends to forget about him as the year went on, but this has been the farthest from the truth. His true friends are still there! It is an interesting life lesson. Through Charlotte I am learning a lot about the depths of friendships that children are capable of. Charlotte can't understand why Mattie developed cancer and is so sick. This is a tough question to answer, because there is NO real answer. Nothing about Mattie's illness makes sense and I agree with Charlotte, it is "UNFAIR." I couldn't have said it better. What Ellen said to me today really made an impression on me. She said that I am constantly thinking and caring for other people and the daily blog is just an example of this. She thanked me for opening our lives to our readers and for our honesty. Saying this was a gift to receive, because the blog is indeed a labor of love. Thanks Ellen for the visit, a wonderful lunch, and of course for the support!

For most of Mattie's clinic visit he was very much active, and went through Jenny, a volunteer, and a medical resident. Jenny and Mattie played for hours, and they developed a new play scheme using his character, "Pinkie." Some of you may remember Pinkie. She is a rebel and a risk taker. Any case, Pinkie defied her parents today and boarded a haunted boat. Jenny was a real sport and kept the dialogue going. I tried to join in, but I just did not have the energy today, and Jenny took over my part too. Jenny is great at balancing multiple characters in a story. Mattie loved it! Then Mattie played for a bit with a volunteer and medical resident. This resident really tried hard with Mattie. She took off her white coat, and just was herself as she played today. It was an excellent way to build trust and rapport not only with Mattie but with me. The first time I met her, I was irritated that I had to deal with her line of questioning and examination of Mattie. Especially since Mattie would have to undergo the same questions and exam when his doctor was present. So to me we were asking Mattie to do the same thing twice, and frankly the less he is poked and prodded the better. After today however, I feel this resident went above and beyond to try to get to know the children in the clinic. Once Mattie's MTP-PE infusion was done, Mattie played hide and seek with the volunteer and the medical resident. Mattie was loving it, and wheeled himself around the entire clinic. However, at around 4:45pm, I noticed Mattie was shutting down and he was looking very pale.

The nurses called Dr. Abu-Ghosh to the clinic to examine Mattie. We moved Mattie to a bed, covered him with blankets and tried to assess whether his chills were going to turn into a full blown negative MTP-PE reaction with rigors (or intense chills and teeth chattering). To my amazement, Mattie did not develop rigors, but he developed a fever. This is a possible side effect of MTP-PE, but not one I had experienced before. While dealing with this ordeal for over an hour, Jenny (one of Mattie's art therapists) sat with me the whole time. She plugged in the movie, Aladdin, for Mattie and he rested and watched quietly. Resting and quiet time for Mattie means only one thing, he ISN'T feeling well! While we were with Mattie, it was nice to have Jenny's support. Jenny is just a delightful person and professional, and though it was after her work hours, it meant a great deal to me that she stayed with us. Jessie and Linda also came by! During this time, I also had the opportunity to see a poster that Jenny and Jessie are presenting at a conference on Friday, and Linda came to see Mattie because she heard he wasn't feeling well. This is an incredible threesome, who are worth their way in gold.

Mattie and I finally got home at 7pm. He did lose his fever, and now he is up and energized. As if nothing ever happened. The beauty of being seven. He has recovered, and I am wiped out! We want to thank the Magnuson family for a wonderful dinner tonight and the great gifts you gave Mattie. Mattie was going to see Zachary tonight when his mom dropped off dinner, but it never happened since we got home so late.

We want to thank Joan Holden, Mattie's head of school, for calling us today and leaving us such a meaningful and heartfelt message. We value Joan's support and that of Mattie's school.

I would like to share a message I received today from my friend Charlie. Charlie wrote, "I am so glad that Sunday was a good day all around. It is great to read about Mattie enjoying the company of others and wanting to help with chores. Resuming his place in the family is a critical part of the healing process and it is wonderful that you and Peter are understanding and supportive of that. Too many times we are impatient with someone who can't do it "fast enough" so we do it ourselves. It is a gift to give a child or anyone the opportunity to help even if that makes the task take longer. It is easy to forget this in our rush to get things done; we lose the feeling of satisfaction of companionship and of actually working at something. I also appreciate your ability to transition from the 24/7 mom to the more normal situation of being able to give Mattie space now that he is ready to have more independence. Lots of parents have great difficulty making this transition and it slows down their child's recovery although that is clearly not what they intend. This too is a great gift-and it is wonderful that Mattie is once again secure enough to take advantage of it."


I end tonight with a video clip that Charlie sent me. This video caught my attention, because a simple act of kindness can have profound effects on others. There is a lot we all can learn from Johnny. I hope you enjoy this as much as I did.

http://www.stservicemovie.com/

Sunday, April 19, 2009

Sunday, April 19, 2009

Quote of the day: "What greater thing is there for human souls than to feel that they are joined for life - to be with each other in silent unspeakable memories." ~ George Eliot

Peter stayed with Mattie last night, but before I said good night to Mattie, I hooked him up to his IV hydration. Then I went to lie down. About an hour later, I heard Mattie calling for Peter and I. Peter fell asleep downstairs, so I got to Mattie before Peter did. When I went into his room, Mattie needed help going to the bathroom, and while I was helping him, I looked up at his IV bag. It was COMPLETELY empty. Mind you 1000ml of fluid is supposed to gradually go into Mattie's body over 8 hours. However, after I set up the IV earlier in the night, I forgot to change the drip rate to the appropriate setting. So instead of getting the fluids over 8 hours, he got 1000ml in one hour. I was besides myself! So of course Mattie had to go to the bathroom! Peter came up to help me, and he calmed me down and rationalized my mistake by saying Mattie was dehydrated and he has received boluses of fluid before in the hospital. Thank goodness for Peter's logic, it made me feel better. But it speaks to the level of exhaustion I was feeling. Needless to say, I won't be making that mistake again!

Mattie had a hungry day! Thank goodness. He has been eating throughout the day! So we know he is feeling better. Peter took a picture of Mattie eating Cornflakes this morning. Mattie was impressed with the size of one of his flakes.

Today, Liza (one of Mattie's favorite volunteers from the hospital) came over to play with Mattie for four hours. When Liza arrived, Mattie was thrilled to get rid of Peter and I. In fact, he said, "you guys have to leave, good-bye." We are happy he feels so comfortable with us leaving and we are happy he gets along so well with Liza. In the Fall, Mattie did not feel secure or comfortable enough with us leaving his side for a minute, so this shows great growth. Mattie and Liza had fun playing today, and Liza tells me that Mattie just kept eating throughout the afternoon.

While Mattie was with Liza, Peter and I went to Roosevelt Island for a walk and then out to lunch. We had a nice lunch together where we discussed things that need to get done for Mattie's walk. Peter and I discussed the messages we want to deliver on the day of the walk and beyond and we also decided that tonight we would finish creating and ordering Mattie's Mr. Sun cards and our Osteosarcoma Awareness stamp. Peter and I created blank photo cards that display Mattie's beautiful painted sun and we also designed our own Osteosarcoma Awarness US Postage stamp, both of which we will sell during the day of the walk. Creating these tangible products make us feel like we are contributing in some way to the walk, but more importantly to promoting the awareness of this disease on a larger scale. After a leisurely lunch (where I wasn't jumping around and therefore food going down the wrong way), we went grocery shopping to buy Mattie hot dogs. He wanted a BBQ tonight, and if this is what he wanted to eat, we were happy to meet this demand. Then we had about 30 minutes before we had to return home, so I had Peter take me to Macy's. I can't tell you what an efficient shopper I can be in 30 minutes. If there was a video tape of me shopping I am quite sure I could have qualified for an episode on a comedy show! Needless to say, four hours away from home was very helpful.

When we returned home, Mattie was having a good time with Liza. Once Liza left, Mattie wanted to go on another walk. So we walked around the block, but we did not want to go far since it was getting chilly and looked like it could rain. Peter snapped a picture of us by a beautiful azalea that is blooming near our complex.

During our walk, we discussed with Mattie the importance of him getting up and walking. He proceeded to tell us he couldn't walk. If he could, he would. So we explained to him that the cast will help make walking easier because his leg will be straighter. However, I said that he needs to strengthen his muscles, and only by exercising and walking each day will this happen. So I told him that we are going to expect him to walk at least two times a day while he is home. He did not like it, but I can see unless we push the issue and carry over what Anna is doing in the hospital, Mattie will not be walking any time soon. Peter and I bought a load of hotwheels cars today as incentives for the steps he takes. We shall see what happens. But so far, he has walked three times today! Hurray for Mattie!

After our walk, Mattie and I played together for quite some time. We played with this toy alligator that Whitney brought back for him from Florida. At one point Mattie was comparing his mouth to the mouth of the alligator. It was too cute not to take a picture of!

Mattie and I played with walkie talkies too and we made up an hysterical game with them, and eventually we landed up reading books. While we were doing this, Peter completed our Mattie cards and postage stamp project. It feels good to have accomplished those things!

Mattie and Peter headed outside tonight to BBQ. Peter and I have noticed that Mattie is desperately seeking ways to integrate himself back into his former life and activities. In fact, when Peter cleaned our deck yesterday, Mattie wanted to be right by his side. Certainly Peter could have finished this task in less than an hour, but he knew Mattie wanted to help, so though the project took several hours with Mattie in tow, that did not matter. Mattie felt good about himself because he was a part getting the chore done. Mattie was out there holding the hose and getting wet. We wrapped a garbage bag around his cast, he was a sight! Tonight, Mattie wanted to be outside grilling. I am happy to report that Mattie did eat his hot dog and fresh watermelon!

As Sunday is winding down, we still have a central line dressing change to perform on Mattie. One of the least favorite things I like about Sunday. I can't blame Mattie. Imagine pulling off a very sticky adhesive bandage that is covering over tubes that lead directly into your chest, it isn't pleasant. On Monday, Mattie and I head back to clinic for blood draws, vital checks, and a MTP-PE infusion. We are planning on not being admitted to the hospital, since I have been told his platelet level won't recover by Monday. I hope they are right, because I haven't packed tonight for a week's stay in the hospital.

I end tonight's posting with two messages I received today. The first one is from my friend Charlie. Charlie wrote, "Saturday, another tough day. Thank goodness for family (especially parents like you and Peter) Even when there are positive pieces sometimes the effects are not so positive. Mattie's platelet level came up but not enough to continue on schedule with chemo. This gives him a few more days away from the hospital but right now he is having difficulty finding things he wants to do because he is not feeling well and in turn, creating a lot of stress for himself and for you. Part of the problem is that while we all love each other in a family, we were not meant to be with each other 24 hours a day/7 days a week for an extended period of time. We were meant to have some separate space and events and come back together to share them. Now things are all turned around (and have been for months) and so the things which should be enjoyable are instead often stressful. I look forward to the day when Mattie returns from school to tell you about his day at dinner, all the new things he has learned, friends he's made and projects he's done. I hope that time comes soon!"

The second message is from my colleague and friend, Nancy. Nancy wrote, "Your blog always reminds me to keep humble and stay in the present, sometimes a difficult thing to accomplish. Your courage and love are so supported on such a variety of levels. Reading your words reminds us of the gift of life and not to take it for granted. I'm reminded of this paper disk that my daughter, Cindy, gave me her first semester at Binghampton: ENJOY LIFE. THIS IS NOT A DRESS REHEARSAL!! Three experiences touched me in yesterday's writing. First, the quote from Kahlil Gilbran. As a teenager, I was so taken with his work. I have found it again and find that it resonates in one's soul. I find the struggle to give greater than one gets much harder these days. Peter, Mattie, and you give so much to others and I am glad that there are so many who give of themselves as it keeps everyone going. I so worry about Peter and your health. Please continue to take care of yourselves. Second, the picture of Mattie and you on your walk is beautiful. Mattie seems to muster such strength to smile at the camera and the two of you share the same smile. Truly a sign of love! The third experience was very strong for me. When my father died, a bird sat in the tree above his grave. It was red and sat silently as the Rabbi delivered the service. I could not take my eyes off that bird. It warmed me and made me think of my Dad , all the more. I felt his presence so strongly. At the end of the service, I once again looked at the tree. The bird had gone. I believed it was my father crossing over into the light. The reason for my rambling was your comments about the Mother Dove and the egg. Dove's are such a sign of peace and hope. The fact that another one has come to be outside your window seems to reflect that too. I believe that Mattie and each of you are being given these signs as you work through the next round of decisions. Your friend, Charlie, sounds very wise and loves you so much. I concur with Charlie that you will make the decisions needed for your family. Each of life's curves are met with such information and determination. We can't know the outcome of some of our decisions and only hope that they will produce the results we hope for at times."