Mattie Miracle 2021 Walk was a $125,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

March 14, 2009

Saturday, March 14, 2009

Saturday, March 14, 2009

Quote of the day: "We cannot live for ourselves alone. Our lives are connected by a thousand invisible threads, and along these sympathetic fibers, our actions run as causes and return to us as results." ~ Herman Melville

This morning, Mattie woke up before I left for my meeting. For Mattie this was SUPER early considering he went to bed after midnight. Needless to say, Mattie scared me again with two toy roaches this morning. The places were different from yesterday morning. One was in my bath towel and the other was in my purse. I did not appreciate this trick today either. I am not sure how I made it through two days of meetings. But I am happy to report that I survived, I never tuned out, and instead found it stimulating. This evening the board had a lovely dinner in Alexandria, Va. The board gave me a gift after the dinner was over, they made a generous contribution to Mattie's fund. I was very touched by this gesture, and I learned that several board members read Mattie's blog regularly. That was a high honor. I did tell the board about Mattie's situation and not having Mattie around to protect him from my reaction, I landed crying. This crying continued all the way through my drive home. I pulled it together before I walked in the door and saw Mattie. One thing I did learn though, is even though I was working with a board of mental health counselors, even trained professionals have a hard time knowing what to say when hearing about Mattie's situation. After all what is there to say? Maybe saying nothing, but listening is the best thing to do in all reality! Because really there is nothing you can say to take this pain away and a trite response with the magnitude of Mattie's situation is just so inadequate. Needless to say, I was proud of myself for holding it together, and just when I think I can't rise to the occasion, somehow I find resources I never knew I had. Mattie's illness is becoming a great life teacher.

Mattie had another busy day with Peter. Mattie went to one of his favorite places, no it wasn't the lego store, but Home Depot. They like to browse, and came home with a new bird feeder, since our previous one broke. They had a busy day building with legos, and then Mattie's grandparents from Boston arrived. Mattie was showered with a lot of wonderful gifts. His two favorites were an adorable bunny hat and the other was a box filled with vintage train accessories. Mattie couldn't wait to show me all of his gifts when I walked in the door.

Mattie also had a visit from JJ (our resident Jack Russell Terrier) tonight. Do you love JJ's new jacket?!

We want to thank the Bartlett family for a wonderful and generous dinner. Mattie loved the mac and cheese! Thank you for the support.

I end tonight's blog with a message I received from my friend Charlie. Charlie wrote, "Friday's blog seems to be about connections and maintaining the contact even when apart. Keeping one's obligations even when doing so is not easy or convenient, means a lot. I know that both the people you met with and all of your support system knew how difficult it was for you to tear yourself away from Mattie on Friday. I wonder if Mattie's little gifts to you on Friday morning were supposed to ensure that you thought about him even though you were not going to spend the day with him? It sounds as if he was successful, if that was what he intended. I hope your meeting was productive and that the visit from Peter's parents goes well. I continue to be amazed at Mattie's creativity and sense of humor through all of this and I am sure that several years down the road you will be reminding Mattie of some of the practical jokes that he came up with during this treatment process."

March 13, 2009

Friday, March 13, 2009

Friday, March 13, 2009

Quote of the day: "... joy and sorrow are inseparable. . . together they come and when one sits alone with you . . . remember that the other is asleep upon your bed." ~ Kahlil Gibran

Peter and I went to bed after midnight on thursday, and I got up before 6am to get ready for my meeting today. So to say I was tired was an understatement! However, do you want to know how my day started off? It began with me screaming from fright! Mattie hid three toy cockroaches with Peter's help the night before and I stumbled along all of them this morning. One was on my toothbrush, the second one was in the shower, and the third one was on my cereal box. Needless to say, after being freaked out three times, I wasn't very happy!

While I was at my meeting, Peter and Mattie had a busy day together. Peter took Mattie to the lego store at the mall. Mattie had a good time browsing, buying a couple of structures to add to his village, and then apparently they went to McDonald's for lunch. I was thrilled to hear that Mattie was excited to leave the house, and that he ate chicken and drank a whole vanilla shake!

When I got home this evening, Mattie couldn't wait to show me his new addition to his village, a farm. I can officially say that I CAN'T walk into our living room. It is covered in Legos! However, after I finish tonight's blog, Mattie has agreed to help me disassemble the train tracks in our living room. It is my hope that the lego village can then be moved to one portion of the room. I can at least hope, can't I?
After I saw the farm, Mattie than sat with me in our rocking chair, and just cuddled for a while. I think he missed me today, and Peter told me that Mattie spoke about me for part of the day. I think Mattie and I were close before he developed cancer, but now we are super close, after all we go through everything together. It was nice to know that I was missed, but I was thrilled that Mattie and Peter had a good boys day together!
I want to thank the McSlarrow family for a wonderful dinner from Papa Razzi. Papa Razzi is one of our favorite restaurants. Peter and I used to eat at Papa Razzi in Boston all the time, and when we first moved to DC, we were happy there was one in Georgetown. So dinner tonight brought us back to better times. Some how we were all starving, so dinner was an amazing sight. Mattie ate quite well too, he ate a whole bowl of spaghetti with meat sauce! It was funny, while on a break today at the meeting, Alison e-mailed me and asked me how my day was going. I told her I was tired and had a migraine. So when I opened up tonight's dinner she included a soda with the label "migraine." For migraine relief! She made me laugh. Thank you Alison for such a lovely dinner! In addition, while at the meeting, Ann called and left me a voice mail. In the message Ann asked me about Mattie and while she was talking she started saying, "wait today is friday, Mattie isn't with you , you are at a meeting." It was thoroughly a riot to listen to her dialogue, and it was so nice to have these moments of humor today! But even more touching was that these ladies were trying to support me even while at a meeting.

As we head into saturday, I have another full day of meetings. Mattie and Peter are going to have another fun day together and Mattie is getting ready to see his grandparents from Boston tomorrow night. Peter's parents are visiting for a few days, and Mattie is looking forward to seeing and playing with them, and Peter and I are hoping for some sort of periodic breaks.

I end tonight's blog with a message I received from my friend, Charlie. Charlie wrote, "The blog continues to be a contrast of ups and downs, happiness and sorrow. My heart goes out to Cody's family as there is nothing harder to deal with than a death that is "out of cycle" when a child departs before a parent. And yet, I think there was joy in his life that he shared with others. As always, I was glad that Mattie had a good day. He is so creative, it is fun to read about all the things that he makes and how much effort he puts into all of it. I think Mattie and his helpers know some secrets that a lot of children today don't appreciate-the best entertainment is created by your imagination. It's too bad there isn't a museum to put some of these amazing creations in. Many thanks to those who continue to nourish both body and spirit for your family, I believe that kindness is echoed out into the universe."

March 12, 2009

Thursday, March 12, 2009

Thursday, March 12, 2009

Quote of the day: "Tears at times have the weight of speech." ~ Ovid

Before I tell you about our day, I want to thank all of you who wrote to us about Cody and for acknowledging what a difficult and painful day wednesday was for Cody's family and the community who knew him. The death of a child is a profound loss and one that should never be forgotten! I am finding it particularly fascinating how the hospital staff are checking in with me to make sure we are okay after yesterday. I think Peter's reaction gave them pause. I am not sure why, because frankly if Peter did not react the way he did, I would say he had a serious problem. But expressing how you are feeling in a very real and raw way as he did, in my book is healthy. It may not be pretty or comfortable to see, but it is the only way to process something that touches your life so personally and closely. Our case manager, Catherine, saw me in clinic today and told me that Cody's service was deeply moving and very painful, but the one image that remains as a snapshot in her mind was Peter's face walking down the church aisle while leaving. I knew exactly what she meant. There are moments that you can look at someone's face, and in that instance, it captures the mood and tone of the day. I would imagine that NOT many parents of children with cancer attend the funeral of another child who just died. It is just too raw. So in a way it was a learning experience for everyone involved.

Peter e-mailed me today and literally said, "You know in trying to process all this last night and today, I have yet to think of anyone else besides Cody and his family. I think I can do this because we have all the members of Team Mattie and the community around us to support us, and it is through and because of this support that we can in return, be supportive of others in more need than ourselves. This is a lesson that I learned from this."
I had the opportunity to see Dr. Abu-Ghosh today. Dr. Abu-Ghosh is Brandon's doctor and was Cody's doctor as well. If some of you went onto Cody's website, you may have seen one of the videos with a doctor smiling and holding Cody when he was much smaller, maybe when he was two years old. To me that is just a priceless picture, and I told Dr. Abu-Ghosh that I found this picture haunting, but more importantly the picture captured her love for Cody. That came through clearly. She started to tear up, and I wasn't far behind. So I told her to move on, before we both were going to be a mess within minutes. That picture moved me and I was touched to see the impact of Cody's life on Dr. Abu-Ghosh. It gives you faith in the medical profession.

Mattie had a good day today. His Absolute Neutrophil Count is 900, a severe drop from 5000 on monday. It will continue to drop over the weekend, and we will just have to keep a close eye on him to see if he develops a fever during this time. In my perspective Mattie was the life of the clinic today. He had everyone hopping. Mattie got to work with Jessie and Gretchen (another Art Therapist who works with Tracy's Kids), and even Elizabeth (a social work intern). Jenny is out of town for a week, and we look forward to seeing her next week! We missed her. Mattie was creating up a storm. He made a robot, which is still in clinic, and even did a painting of some candy canes. Jessie, Gretchen, and Elizabeth worked VERY hard today!

Mattie's big decision for the day was which art boxes he was going to keep. With 50 hospital admissions, Mattie has accumulated a lot of artistic creations. But the hospital couldn't store them any longer for us. So Ann, bless her soul, came to the hospital to pick up a few creations that Mattie just couldn't part with. It took Mattie quite some time to sort through rows and rows of art. He wanted to keep all of it, and I told him that wasn't possible or fair to Ann. So he settled on five rather large creations. When Ann came today, she loaded all of these things in her car, and then photographed the rest of the creations that we would be saying good-bye to. It is ironic, each piece of art work seems to signify or illustrate a moment or emotion in time within the hospital. It is amazing to see all his finished products in one space, and if I were thinking clearly, I would have photographed them all together before we started sorting. Just to indicate the sheer volume! In addition to schlepping boxes, Ann came down to take a high resolution photo of Mattie for his Walk t-shirt. She took some great shots. Here is one of my favorites, along with a photo Ann took of Mattie with Dr. Toretsky (while Mattie is building a robot).

When Ann visited, she brought with her a soft pretzel. Mattie was watching the show "how it is made" on TV last night with Peter. They were featuring on the episode how pretzels are made. So guess who wanted a soft pretzel at 11pm? You guessed it! Mattie wanted us to go out at that hour to search for one, but I told him it was too late, but that I would ask his buddy Ann to help us on this quest. Ann never disappoints, Mattie got his pretzel today, and ate it.

I want to thank Tamra for a beautiful lunch that she brought to the clinic. Not only was it delicious, but so beautifully presented. Tamra made me homemade butternut squash soup that was so tasty, and she served it to me with an elegant silver tablespoon. That spoon caught my attention, because it made me feel special, and in a way transported me out of the hospital environment for a minute or so. Thank you for the fruit, salad, wonderful cookies (which we shared with another child, who needed to be bribed to go have his check up!), and the dinosaur chicken tenders. Tamra also is helping Mattie get into the St. Patrick's day spirit. I love the socks and shamrock sunglasses. He will be heading into the clinic next week in style. We could use the luck of the Irish next week as we head into CT and bone scans next thursday! Tamra also came back later in the afternoon to visit with me and brought me hot tea. I am truly touched by her generosity, caring, and compassion. How lucky we are to have such amazing people in our lives.

Mattie did very well with MTP-PE today. No reactions what so ever. But after almost five hours in the clinic, he was ready to go. We head back to the clinic again on monday, unless something else arises between now and then.
We want to thank the Magnuson's (Zachary's family) for a wonderful dinner tonight and amazing desserts. They brought a smile to my face when I came in the door tonight. Thank you for your constant support. I went out to dinner with a colleague of mine who is town for the two day board meeting. It was nice to escape this evening and to eat by the water. Our family also wants to acknowledge the Sonoda family for their generous donation of a Wii Fit to the childlife room. I can't wait to introduce this to Mattie. I hope it inspires him to move his body. Thank you Lana for making this possible, and for your families great support, care, and generosity!

When I arrived back home tonight, I found Peter and Mattie had been very busy designing Mattie's lego town. We have some new additions such as a car wash, a movie theatre, and a town hall. Check out the proud designer! Apparently Mattie and Peter have big plans while I am away tomorrow. If I come home and find out my entire house is made out of legos, I won't be surprised!

It is 11:30pm, Mattie is still up and just opened a package from Eva K. While I am writing the blog, Mattie and Peter walked into the room, and stuck something on the wall. When I looked up to see what they were doing, I notice large ROACHES on the wall. So we now have movable toy roaches to add to our house of fun. The perfect gift for Mattie, along with an insect book, and other creepy crawly things. I wish I could say I am becoming desensitized to roaches, but it isn't happening yet.

I end tonight's blog with a message I received from my friend, Charlie. Charlie wrote, "What a contrast Wednesday's blog was, between Cody's funeral and Mattie's energy. I know that even though you could not go to Cody's funeral you were there in spirit and in your thoughts as you took care of your errands. I am glad Whitney was there to work and play with Mattie and that that they had a good day. The timing for this was perfect as you definitely needed the break. It speaks volumes for Mattie's increasing independence that he was able to spend five hours without either you or Pete right there with him. It took real strength of will for Pete to go to the funeral; that had to be so difficult but what a gift to Cody's family. I am sure the "what ifs" plagued you both yesterday. There are no crystal balls but you and Pete are doing everything you can and with the help of family and friends and the grace of God, at the end of this road will be the prize of good health."

March 11, 2009

Wednesday, March 11, 2009

Wednesday, March 11, 2009

Quote of the day: "Memory... is the diary that we all carry about with us." ~ Oscar Wilde, "The Importance of Being Earnest"

Mattie had his usual late night on Tuesday. You have to be in awe of his energy! He finally settled down at 12:30am. By the time I got him to sleep, I felt like I put in two days in one. This morning Mattie had a slow start, but he was happy that Whitney was coming over to play with him. As many of you know, Whitney is one of Linda's former childlife interns. Whitney works with us each Wednesday, and she is a God send. I asked Whitney to work with Mattie for five hours today, and it was a glorious five hours away from our house and all the responsibilities that come with it.

Whitney is just a lovely individual, she can easily engage Mattie, and has the energy and commitment to make this work. Before I left the house today, Mattie was climbing the stairs on his rump, and was determined to show Whitney something in his room. Can you guess what it was? If you guessed his kindergarten box with all his writer's workshop papers, then you would be right! Clearly these papers mean a lot to Mattie, and he wanted to show his stories to Whitney. Mattie and Whitney clearly had a busy day together. They played upstairs with Lincoln Logs, they got out his remote controlled boat, legos, and his old train set. The same train set he took out for Whitney last week. I am always amazed to see this old favorite come out. I can still remember buying this set for Mattie like it was yesterday. Whitney snapped a picture of Mattie with this Thomas set.

While Mattie and Whitney were together, I was very productive. I picked up prescriptions for Mattie, went to the grocery store, and then finally after many months got my car washed. I knew my car was somewhere under all that dirt and salt, but it is nice to be introduced to her again! After my chores, I called Peter to check in on him. Peter went to Cody's funeral today. Peter felt that it was important that one of us go to show our support to the family, and to pay our respects. I admire Peter's convictions to do this, and courage to face a most painful and difficult day. Peter tells me that the service was beautiful and that over 20 people from Georgetown Hospital were there and that the church was filled with hundreds of friends and family members. I was so happy to hear the support that was being extended to Cody's family. Can you imagine how these parents feel? Those of you with a six or seven year old, I invite you to pause and try to imagine this happening to your child. What would you do without your child in your life? Are you still a parent? How do you explain this loss to your other children? Is this the best life has to offer? Of course for many of us we can easily shake this image from our thoughts, but for Cody's parents this is their new reality. I could tell that the funeral hit Peter very hard today, and Peter told me that he had a hard time getting through the service and that Denise, our social worker, and Sharon, our Georgetown Chaplain, gave him support during the service. I knew Cody's situation was far too close to me, and that I would be unable to attend the funeral. However, I imagine one could say the same applies to Peter, that maybe he shouldn't have gone either. Peter wanted to go, and sometimes I think being able to confront your fears and to cry is a very important thing especially when you are raising a child with a life threatening illness. It is funny, something told me to call Peter after I did the chores, and I am glad I did.

When I got back later this afternoon, Mattie was having a good time with Whitney. We look forward to seeing Whitney next Wednesday, and Whitney tells me that she could potentially work two days a week for us. That would be wonderful! When Peter got home today, I started to tear apart my closet. I had to find some professional clothes to wear for Friday and Saturday. On top of everything else I am dealing with, I am presiding over a two day professional association board meeting in Alexandria, VA. So for two days, I have to put my mommy hat on hold or in check, and try to dig deep and find my professional side, and find the stamina and resources to run these meetings.

Peter brought home a big Lego surprise for Mattie. Peter made a deal with Mattie that he had to walk around the house with his walker three times. Each time he walks, he gets another part of this huge Lego set. Mattie was very motivated, and walked back and forth to our kitchen today. It was great to see. Peter has the knack and is a good motivator for Mattie!

I want to thank Susan S. for offering to be our mid-day helper today. Sorry Susan that we did not get a chance to see each other today. I also want to thank Rana for offering to bring us dinner tonight. Peter and I both did not feel like eating but we so appreciate the support! As we head into Thursday, Mattie will go to the clinic for a check up, blood draws, and MTP-PE infusion. So far Mattie is holding his own, though his appetite is definitely not back.

I end tonight's blog with a very meaningful message I received from my friend Charlie. I thought she did a great job reflecting and synthesizing Tuesday's events. Charlie wrote, "I was struck by your comments about yesterday being a "memory day." Mattie wanting reminders and stories about when he was small; Mattie looking for his his box of writing material from last year and so on. That's something we do, when we get ready to set out on a new road or on a trip, whether physically, emotionally or mentally, we look back and bring with us things that we think are useful for helping us along the way. I think you are correct, that Mattie is getting ready to move forward with learning and he is gathering his memories and experiences to use as tools for this new "project." I am so pleased to see him willing to open new "doors" for his mind; it is critical for him to get mental exercise as well as physical although the people who help him play do a good job of incorporating a lot of learning in it. I know it concerns you that he came up the stairs without supervision but he is beginning to reassert not just his independence from you but also his mastery of his body; a mentally healthy move even if it is somewhat risky physically right now. Hang in there, we all hope he will be back to walking up and down independently one day soon."


Peter's Entry (this is Pete writing):


I asked Vicki if I could write something tonight in the blog as I am compelled more so than normal to express what I am going through today. Vicki is the author of this blog and long ago I stepped back from it as she truly has a gift for writing, expressing and putting into perfect context the challenges and every-day experiences, however raw and base they may be, into everyone's life, head, and mind.

Today, I attended the celebration of a wonderful, spirited and cherished soul that we lost to the fight with cancer by the name of Cody Johnson. Cody was a six year old boy, the same age as Mattie, who died Friday morning from neuroblastoma, the most deadly childhood cancer known. Cody was diagnosed when he was two years old, a time when most children are learning to walk, to speak, and discovering the world around them. Instead of doing that, Cody was sleeping more nights in the hospital than at home, taking gross amounts of medications, undergoing surgeries, tolerating poisonous toxins (otherwise known as chemotherapy) and dealing with the indignities of being a child who has cancer.

Cody's funeral was well planned and was a meaningful event. Diane and Mickey (Cody's parents) could not have done a better job. The church was filled with the reflections of Diane, Mickey and most importantly Cody. At one point when the eulogy was being read by a family friend, I could hear in the distance a horn from a passing train blowing widely. At first the sound slipped quietly into the background of the situation, but when the horn persisted, and kept blowing almost in a daunting manner, I knew this was a sign, a message, that Cody, who was well known for being a true spitfire, was signifying in some way that he was there, was present, and was saying goodbye for now in some way to those who were listening.

Needless to say, I was an emotional wreck throughout the service. I could not stop welling up with tears. Here we were celebrating a beautiful, full-of-life six year old boy, who had lost his battle with cancer, a battle fought valiantly by himself and his parents and his family, without thought of life, or limb or mental health. I could not help but think of how awful the day-to-day existence for Cody must have been, and how he stoically faced his situation while providing each of us with comfort, humor or harassment (for those of you who know him you know exactly what I mean). He was a true fighter and subborningly refused to give up until the very end when he knew he was beyond saving. Near the end, Cody began pushing away those who loved him because somehow he knew that his departure would wreck those who did love him, and that in his own special way, he was trying to spare them in some way, the pain associated with his battle with cancer.

Cancer is truly an awful thing, too devious to discuss here and too bone chilling to think about. I truly feel sorry for Diane and Mickey (Cody's parents) for what they went through. You cannot recover from the loss of a child, as there is only an adjustment to a "new" and much worse reality. Children are truly precious gifts from God that we must cherish, appreciate, love and accept for what they are each and every day. Although life's pressures collapse on us each and every day, we cannot forget how blessed we are to have these kids in our lives.

God Bless you Cody. We will miss you but we will never forget you.

March 10, 2009

Tuesday, March 10, 2009

Tuesday, March 10, 2009

Quote of the day: "The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly." ~ Buddha

Mattie had a hard time settling down on monday night. He and I were doing a craft project at midnight and then reading some books. At which point, he was still ready to do more, but I shut off the lights, and rubbed his head. He eventually fell asleep. He was up consistently every two hours last night to use the bathroom, and at one point he was screaming about something in his sleep, but he did settle back down easily. Neither Mattie nor I could get up this morning. When you sleep in two hour increments, it is easy to sleep to 11am, and still not feel like you had a good night's sleep.

Mattie woke up this morning and really wasn't hungry. He ate a little oatmeal, but I wasn't happy with his lack of appetite. So this morning in addition to administering him GCSF (white blood cell growth factor), I also gave Mattie Kytril. Both GCSF and Kytril are administered through Mattie's central line. I recall when I left the hospital, Mattie's nurse, Kathleen, was impressed that I knew how to administer these medicines at home. She told me I am becoming a nurse. Indeed! If you told me a year ago that I would be pushing medicines into my son's central line, following a sterile technique, I would probably just laugh off the statement! But it is amazing what you will learn in order to get your child better. I think the Kytril did help, because by lunchtime and dinner time, Mattie actually ate!

Mattie and I built a Star Wars lego set that Linda gave him at the hospital. This kept us busy for quite some time. I spent the majority of the day in my pajamas because Mattie kept me quite busy from one activity to the next. But by 2:30pm, I had it. I went upstairs to shower, and left Mattie to watch a children's program on TV. When I got out of the shower, I heard something rustling around outside my door. So I opened up the bathroom door, and guess who I saw crawling up the stairs? Mattie managed his way all the way up the stairs. It is funny, normally we want to praise our children at Mattie's age for their independence. But risky behaviors for Mattie, in my book, should be avoided at all costs. To me trying to climb steps without an adult supervising is dangerous. Mattie and I have discussed this in the past, which is why he was climbing up the steps on his backside. Sliding from one step to the next. Any case, he was proud of his accomplishment, and what he was trying to do was surprise me! Which he did. But he came up on a mission. He was looking for his kindergarten box. Within the box were many of his assignments from last year as well as all his writer's workshop materials. Writer's workshop is a method used to teach children how to write and create a story at SSSAS, Mattie's school. The funny part is Mattie did not like Writer's Workshop in the beginning of his kindergarten year, mainly because Mattie was not reading or writing, but was more of an emerging reader. So such a format could be challenging for such a child. But I saw that this method does indeed work. I saw Mattie grow throughout the year, and in the beginning he could draw a picture and then try to use a word or a few words to describe his picture/story. As the year evolved, he actually wrote full sentences to describe his picture. Not always perfect sentences, but they were understandable, and I could tell Mattie clearly liked telling stories. Today, Mattie was eager to pull out his Writer's Workshop materials. In fact, when he went to his room, and couldn't find his box, he blamed me for throwing it out! Remember who you are talking to, the pack rat of the century! I squirrel things away, but rarely throw special things out. So the box was relocated. When I showed him the box, he was very excited, and he asked me to sit with him and look at all his materials. We read through all his writer's workshop stories. I think some of his favorite stories revolved around trips he took, such as his trip to Boston to visit his paternal grandparents and got to see a chipmunk up close. Mattie really studied this chipmunk and how it interacted with the birds around it. Needless to say, Mattie loves telling the "chippy" story! Mattie also loves writing about his trips to California to visit my parents. He wrote a story about riding the airplane to Los Angeles. These stories are priceless and the drawings illustrating the stories are just as precise too. In a way, I felt that Mattie was making a statement today. Mattie is ready to learn or reconnect with learning. Mattie read through his number book today, as well as a poem book he created in Ms. Williams' class. It was just interesting to experience Mattie's excitement today and for a moment we were both transported back to a time to a typical day after school, where we would be reviewing whatever came home in his folder.

This afternoon, I received a call from Dr. Peters. Many of you may recall that Dr. Peters is the head of the clinical microbiology lab at Georgetown Hospital. I wanted to know if Dr. Peters was able to get more specifics about the reporting oversight of Mattie's VRE scare. You may remember that I told you that Georgetown cultures stool samples using a machine called the Phoenix (of all things!). Or at least this is how the culturing process was explained to me on February 29. Today, Dr. Peters said that Mattie's culture never went through the Phoenix. That it was always tested by hand. That the results were reported in the computer, but that the PICU staff did not know how to look up the correct and updated results. I tell you, as I told Dr. Peters, I was thoroughly confused. Which story is correct, the one in which the sample was evaluated through the phoenix first and then under Dr. Morel's direction the culture was then evaluated by human hand/eye. Or the new story, that the culture was evaluated by hand first and then the positive sample was placed in the phoenix for confirmation. To me these are very different stories. Dr. Peters did tell me that the process for culturing is being reexamined at the hospital, and he told me that the whole lab is aware of Mattie. That his file is flagged, which means to me, that such an oversight won't happen in the future for Mattie. Dr. Peters did assure me that if I ever have concerns about Mattie's future cultures, to call him directly and he would personally evaluate them! Doesn't get better than that! I of course could pursue the inconsistencies in stories, but frankly I think I caused enough chaos so that the process of culturing is being looked at, which was my ultimate goal. No one should have this unnecessary scare.

After I got off the phone with Dr. Peters, Mattie was disgusted with me. Like many six year olds, he doesn't like to see me on the phone. We talked about why it was important for me to be on the phone and why his pouting and attitude wasn't acceptable. Mattie spent the rest of the afternoon washing his hotwheels cars. He started with a soapy bin, and then we moved up to a bin and a bowl, and by the time we were finished, we just moved all the cars to the bathtub. Mattie put his arms and feet into the bathtub as well. Which was wonderful to see, because since his central line was placed into his chest, he is afraid of water. So it was great to see him comfortable around the bathtub!

I think the days non-stop activities wiped him out, and he decided he wanted to watch Scooby Doo videos in my bedroom. So we sat together for a while. I find it very interesting that he continues to want to hear stories about when he was a baby. I think he is trying to understand how he went from a normal baby to the state he is in now. Mattie will occasionally say to me, "I don't think I will make it." Normally Mattie goes about his daily business, and plays, so when these statements are blurted out, it catches me off guard. But I always process this with him and reflect on how much he has already accomplished and how well he is doing fighting off the bone bugs.

Later this afternoon, we were visited by JJ (our resident Jack Russell Terrier) and JP, our neighbor. JP brought Mattie his favorite pizza and pasta in hopes that he would eat. Thanks JP for thinking of Mattie! When Peter arrived home from work tonight, things were somewhat peaceful at home. A first for sure. We all had a lovely dinner together thanks to the Hanley family. Mattie ate two pieces of chicken, which was wonderful. Thank you also for the fabulous cheesecakes and the support. Amy, I look forward to meeting you one of these days.

I want to thank SSSAS for its continued support. I received a beautiful e-mail today from Bob Weiman, Mattie's head of the lower school, and we also received a lovely message from Joan Holden, Head of School. Thank you Joan for your continued support, for always checking in with us, and for reading our blog!

I want to share a message I received from my friend, Charlie. Charlie wrote, "Fear for the future is a natural response especially when faced with a disease such as Mattie has. The death of another child has to cut deeply for anyone who is fighting for their child's health. I know you and Pete want to keep a positive outlook, but don't feel you have to be that way all the time, that's impossible even for people who have little to be unhappy or concerned about. The key, I think, is to try to take things one day at a time and enjoy each as much as you can. Celebrate the victories (Mattie is back in normal clothing, using both hands)and work on the other things in manageable pieces-this is the children's joke: "how do you eat an elephant? One bite at a time". I know it is easier said than done to recommend not worrying but all you can do is plan a few routes and then let your family and friends help you navigate the hills, detours and potholes of whichever road cancer puts you on. We'll all be here with you for the journey."

As I end tonight's blog, I leave you with two things to reflect on!

Intentions Are Seeds ~ Gil Fronsdal (thanks Charlie!)

While our activities have consequences in both the external and internal world, happiness and freedom belong to the inner world of our intentions and dispositions. [...] Mindfulness places us where our choice is possible. The greater our awareness of our intentions, the greater our freedom to choose. People who do not see their choices do not believe they have choices. They tend to respond automatically, blindly influenced by their circumstances and conditioning. Mindfulness, by helping us notice our impulses before we act, gives us the opportunity to decide whether to act and how to act.

Every mind-moment involves an intention. This suggests the phenomenal subtlety with which choices operate in our lives. Few of us keep our bodies still, except perhaps in meditation or in sleep. Each of the constant movements in our arms, hands, and legs is preceded by a volitional impulse, usually unnoticed. Intentions are present even in such seemingly minute and usually unnoticed decisions as where to direct our attention or which thoughts to pursue. Just as drops of water will eventually fill a bathtub, so the accumulation of these small choices shapes who we are.

Our intentions - noticed or unnoticed, gross or subtle - contribute either to our suffering or to our happiness. Intentions are sometimes called seeds. The garden you grow depends on the seeds you plant and water. Long after a deed is done, the trace or momentum of the intention left behind it remains as a seed, conditioning our future happiness or unhappiness. If we water intentions of greed or hate, their inherent suffering will sprout, both while we act on them and in the future in the form of reinforced habits, tensions, and painful memories. If we nourish intentions of love or generosity, the inherent happiness and openness of those states will become a more frequent part of our life.

Thank you Liza for this passage from ECCLESIASTES 11:8. "Don't take a single day for granted. Take delight in each light-filled hour."

March 9, 2009

Monday, March 9, 2009

Monday, March 9, 2009

Quote of the day: "If nothing ever changed, there'd be no butterflies." ~ Author Unknown
Before I tell you about Mattie's day, I want to acknowledge that today is indeed a very sad day in our world, the little six-year-old boy I told you about, who has been fighting for his life for four years, died on friday. When I heard the news today, I had no reaction other than great sadness. For me it is always a delayed response. However, as I visited this little fellow's blog tonight, I couldn't help but become absolutely hysterical. I know Peter had the same reaction at work when he read the blog. I attached the link below to Cody's blog. Normally I wouldn't do this for privacy reasons, but I feel that Cody's life should be celebrated and acknowledged. His fight, and it indeed was a battle, should not be for naught! Cody was a spirited little boy, and he seemed so strong, that nothing, not even cancer could squelch his amazing personality and will for life. Imagine suffering intensively with painful treatments for FOUR years? I went on Cody's webpage today and as I read more about him, I saw that he and Mattie had a lot in common. Especially their love for legos. When someone you know, who is getting treated with you at the same time dies, it really hits you like a ton of bricks. I am not sure how Cody's parents and siblings are managing, but I know such a profound loss like this will never leave you. Our hearts are heavy tonight, because six year olds are NOT supposed to die!

As for Mattie, he had a hard time falling asleep on sunday night. In fact, he was in bed at 11:30pm, and watching a video, with the hopes that he would fall asleep. However, at 12:30am, he yelled out for me, and I jumped off the bed on the floor and tried to calm Mattie down for the night. Literally that meant sitting next to him and massaging his head and neck, and holding his jumpy legs down with my arm. Finally he fell asleep. Mattie was up every three hours going to the bathroom because of his IV fluids, but other than that, it was an uneventful evening.

Mattie and I headed off to the clinic this morning for his check up, blood draws, and MTP-PE infusion. Mattie was greeted by Jessie and Jenny and he had a great time creating a mosaic with them. In fact, an older patient inspired Mattie to do a mosaic today, because I think he admired what she created. During the exam today, Dr. Synder asked Mattie about his walking. She asked me how often he walks at home and so forth. I told her about my struggle with Mattie and getting him up and moving, so she then turned the attention over to Mattie to see if he saw things the same way as me. With that, Mattie started crying and buried his head in my lap. Clearly talking about walking, or the fact that he isn't doing it yet is a very sensitive topic with him. Dr. Synder dropped the topic and we tried to pull him out of this reaction.

Mattie did have a productive day in clinic and was very busy. He even used the pottery wheel and shaped a vase, which he is very proud of. I snapped a picture of him working at the wheel.

Later in the afternoon, Meg, Linda's intern, came downstairs to play with Mattie. Meg worked very hard because Mattie can put you through your paces. Meg and Mattie worked on a mosaic, built a lego race car, and then they played with Mattie's Haunted House box that he created back in October. Remember ALL of Mattie's boxes are taking up space all over the clinic at the moment, so he could easily grab one to play with. The clinic is being nice to hold onto these boxes for me, but we really need to let them reclaim their space. Check out Meg and Mattie in the Halloween spirit. Mattie is cackling like a witch and Mattie piled a bunch of ghosts on top of Meg's head.

While Mattie was working with Jessie, Jenny, and then Meg today, I was working on a creativity project. The hospital has asked children and parents to design what they think a hospital should look like. Mattie is working with Peter on a lego design for this, but Jenny and Jessie asked me if I would like to do a separate one. So I am struggling through it. My creativity is not what it once was, I may have it in my head, but how to implement it is another story. I want my art work to make a statement, particularly that an ideal hospital has its own HEM/ONC unit. So I am brainstorming how to do this. It keeps my mind busy, since we were at the clinic from 11:30am to 4pm!

Mattie had no problems with his MTP-PE infusion today, and in fact, was ready to go as soon as it was over. But we had to wait two hours post-infusion to make sure Mattie wasn't going to have an averse reaction. When we arrived home, Mattie wanted to continue to play. So we played with his Star Wars lego set. Apparently I was the good guy getting attacked by some evil looking thing! When Peter got home tonight, he delivered a package to Mattie that my parents sent him from California. My parents sent Mattie two Lionel trains. He was besides himself and was thoroughly thrilled. He said, "I love that Grammie and Pop Pop." Needless to say the trains were opened and are now on his train track. He is a happy boy with his new trains!

We want to thank the May family for a wonderful homecooked dinner tonight. Thank you Liza for roasting us a chicken and for the wonderful side dishes as well. Mattie also loved your jam filled cookies! We all enjoyed dinner and we appreciate your kindness and effort with dinner. Tonight we also did some laundry. You never know when you will be heading back to the hospital, so you always have to have a clean bag packed!

As we settle into the night, Peter is playing with Mattie downstairs, and as soon as I finish the blog, I will be helping Mattie get ready for bed and to try to settle him down for the night! Tuesday is a free day for us, and in a way it is nice not to have a structured day ahead of us. Of course, I may be singing a different tune tomorrow night!

I end tonight's blog with two messages I received. The first one is from my friend Charlie. Charlie wrote, "It was wonderful to read the blog and see Mattie and the family all enjoying a "normal" day with friends. Mattie and Campbell looked like they were really enjoying their time together. Although it is hard to leave the security of the hospital, life outside has its advantages including no 5:30 AM blood pressure checks! Change is always tough even if you don't particularly like what's going on anyway. There is security in familiarity. I know you wonder and blog about the future and I am sure on the worst days you wonder if you did the right thing in putting Mattie through all this; when I see pictures of his smiling face and his connection with friends and family, I can see it was the right thing to do. I hope that like the glorious weather that arrived this weekend, the long winter of Mattie's treatment is drawing to a close and he will bloom like our beautiful spring plants."

The second message is from Tanja. You may recall Tanja watched Mattie for five hours this passed saturday. After reading last night's blog, she sent me an e-mail. I included part of the e-mail here. Somehow this e-mail came at the right time last night, as my head was spinning with all sorts of thoughts about the future. Thank you Tanja. Tanja wrote, "I just finished reading your blog tonight and I can't even imagine how you must feel when you try to look into the future. But one thing I am sure of- even though I don't have crystal ball either: Team Mattie will not go away once Mattie finishes his treatments. Through this horrible ordeal that your family is fighting through, you have made so many strong connections with people. These type of bonds and people don't simply disappear. People will still be there: willing to listen, offerring to help, giving companionship and the gift of friendship. Also, you and your family have mastered every stage of Mattie's illness and treatment so well, that despite the unknown ahead of you, you should trust your skills and personality that you will be able to handle whatever is coming at you with flying colors!!!! You have proven this over and over again."

March 8, 2009

Sunday, March 9, 2009

Sunday, March 9, 2009

Quote of the day:

"Every time you opt in to kindness, Make one connection, used to divide us, It echoes all over the world." ~ Dar Williams

Between being tired and hit with daylight savings time, none of us could get up this morning! Mattie woke up in a good mood though and was excited to visit his good friend, Campbell. Mattie was eager to get dressed and ready. He decided before he left the house that he wanted to bring a huge rubber snake with him, because he wanted Campbell to see it.

Mattie and Campbell had a good time together. They played inside and outside, and we all had the chance to enjoy being outdoors for a change. It was 70 degrees today in Washington, DC, and it definitely felt like spring. The boys had a good time playing with nerf (which is like soft foam) shooters, and they used Peter, Campbell's dad, and Campbell's older brother as targets. They had a great time doing this, and Mattie and Campbell would periodically jump into a wagon and asked to be pushed. As if the wagon was a tank or escape unit. Campbell and Mattie also played with a sand table and their favorite, legos. They had a busy afternoon with each other, and then even got to enjoy a BBQ. Though we periodically played with the boys, Campbell's parents and Peter and I had a chance to catch up with one another. It was nice to be able to visit with friends, have a nice home cooked meal, sit outdoors, and have a few laughs. Thanks Christine and James for this lovely invitation today!

After we left Campbell's house, we quickly stopped at the grocery store to stock up on Mattie's favorite things: cheese and yogurt! When we got home Mattie was still in the BBQ spirit and wanted a hotdog. So we happily accomodated his food request! While I am writing this blog, Mattie and Peter are playing together and making more bugs in the Creepy Crawler oven that Tanja brought over on saturday. Mattie loves to scare me with these bug creations, so he is busy at work!
As we head into monday, Mattie heads back to the clinic for a check up and a MTP-PE infusion. Mattie and I land up staying in the clinic four to six hours for this process. It is an odd thing to say, but being at the hospital now is almost like going home for Mattie and I. Not because I like the hospital per se, but our social network and support community is now there. Specifically I am referring to Mattie's nurses, and of course Linda, Jenny, Jessie, Denise, and Anna. In fact, today I started to wonder how are we going to go from having intensive hospital stays (practically every week), to no hospital stays? How does one deal with cancer, go through such a life altering experience, live to tell about it, and yet integrate these experiences back into one's everyday world/life? I honesty don't know! But I do know, I am not the same person who entered Georgetown Hospital in August. My priorities, worries, stresses, and outlook for the future are much different. I am not sure if I am describing this feeling clearly enough, but I guess I understand that each stage of Mattie's treatment is a huge change and adjustment. In a way being in the hospital means we are aggressively fighting the cancer, when the chemo stops in May, then what happens? Not a question that has an answer, and as Mattie's doctor tells me from time to time.... he doesn't have a crystal ball. Of course he doesn't, if he did, perhaps we could have prevented Mattie experiencing cancer altogether. But the not knowing what the future holds is frightening, and not having our day to day support team with us as we explore the unknown is also a daunting prospect.
Back to the present though. Mattie is currently on kytril to help with his nausea, GCSF (which is a white blood cell growth factor), and of course IV hydration. In fact the doctors have increased Mattie's fluid intake at night. So each night, Mattie receives 1000ml of fluid, which helps to explain why he is up every two to three hours to use the bathroom. The IV fluids were increased because Mattie entered the hospital dehydrated during his last admission.
I end tonight's blog with a message sent to me by my friend Charlie. Charlie wrote, "To me, Saturday's blog was all about connections and kindness. That which makes people go out of their way to do things that matter; to offer up their time and space to be with you. It was wonderful to read about Mattie's reconnection with Zachary and with Abigail and to see pictures of them enjoying playing together. And you are right, I wish adults would be as open and willing to accept other people's limitations and appearances as children do. I am delighted that you and Pete were able to have some time together in a social situation; we often don't realize how important that is until we are unable to do so. Your story of Mattie's self advocacy is great! It speaks volumes for his self esteem and healthy ego. Most children would not dream of challenging any adult, no matter how wrong they knew that adult to be. Clearly, Mattie's confidence in himself is returning at a good pace along with his energy level. I hope he continues down this road to emotional and physical wellness."

Saturday, March 7, 2009

Saturday, March 7, 2009

Quote of the day: "The world is moved not only by the mighty shoves of the heroes but also by the aggregate of the tiny pushes of each honest worker." ~ Helen Keller

Mattie did very well through his second night of doxorubicin and cisplatin infusions. In fact, he experienced no nausea, and is NOT tired in the least. I gather he is doing so well, that the doctors decided to discharge him today rather than on sunday. I on the other hand, had the good fortunate of sleeping at home friday night and I did not wake up until noon today. I probably could have slept the day away, but I saw I had an e-mail from Peter who told me that Mattie was going to be released today from the hospital. This to me was a mixed blessing because the idea of packing up Mattie's room and then starting our in home routine wasn't peachy, but of course being home is always better. After our VRE scare, I have also learned that being in the hospital is dangerous for a child who is immunocompromised, so if you don't have to be there, then you really do want to get out!

Mattie had a busy social calendar today. At noon, Caroline Eaton, a third grader teacher at SSSAS and Mattie's piano teacher, came for a visit. Mattie started the day off in a funk, and unfortunately Caroline had the pleasure of experiencing this. But this is something Caroline has had to work through before with Mattie, and she understands where Mattie is coming from. Thankfully! They did play some songs together and I appreciate Caroline's sensitivity and energy with Mattie. Thank you Caroline for the pumpkin bread you brought today! He liked the bread you brought last week so much, that he has been eating his way through pumpkin products all week!

Later this afternoon, Mattie's good buddy Zachary (who Mattie met at RCC, his preschool) and Zachary's dad, Russ, came to the hospital and spent three hours playing with Mattie. Mattie had a great time seeing Zachary and together building a Star Wars lego set. Thank you Zachary for the legos and great lego pen. We snapped some pictures of the boys. Mattie and Zachary continue to amaze me, because they are able to pick up where they left off with their friendship, each time they see one another. Zachary accepts Mattie regardless of how he looks or his physical limitations. There seems to be so much we adults can learn from their friendship.

Left: Mattie and Zachary working on the lego project.

Right: The finished product!

Mattie was discharged from the hospital today around 6pm. Before he was discharged he had to get disconnected from his IVs. I was very impressed with Mattie. Mattie knows that nurses wear gloves whenever they touch his central lines. There is one traveling nurse at the hospital who does not wear gloves when he works with HEM/ONC children. Mind you it is Georgetown's policy that gloves must be used when ever you access a child's central line. You may recall that I blamed this individual for potentially giving Mattie VRE. I even reported this nurse to the HEM/ONC nurse manager and several other HEM/ONC nurses. But guess what? He still isn't using gloves. Well guess who called him out on it today?! Mattie! Mattie spoke right up before Peter and I had to say anything. Mattie told the nurse he had to put on gloves, and if not he was going to tell the other nurses. I said nothing! But inside I was saying, WAY TO GO MATTIE! This was an excellent sign to me, Mattie is advocating for his health care needs and safety!

Zachary and Russ walked us to our car and we said our good-byes. Mattie did not want the playdate to end, which was very sweet. When we arrived home, we got Mattie settled and we unpacked a bit. However, earlier in the day I received an e-mail from Tanja (a SSSAS mom and now our friend) who offered to watch Mattie this evening so we could go out. At first I said no. I did not want to bother Tanja, and I did not know how Mattie was going to adjust to being home. But I believe Ann and Tanja were working as a team today. They were determined to get Peter and I out of our home. After I said no to Tanja, Ann called me. She told me she had a babysitter for the evening and wanted to know if Peter and I wanted to join her and Dr. Bob for dinner. Well the social aspect of this invitation was very appealing, and this helped to turn my mood around today. So after I spoke to Ann, I contacted Tanja again, and worked out the details of her visit with Mattie. Tanja arrived at our home at 7pm, and she brought Abigail with her. Abigail is Ann's youngest daughter, who was also a classmate of Mattie's last year in kindergarten. Tanja did a heroic feat tonight. She watched Mattie and Abigail for five hours. She kept them both engaged and entertained. Tanja came with her bag of tricks and clearly Mattie had a wonderful time playing and being a six year old. I think the highlight of his evening was making bugs using a creepy crawler oven (which Mattie thought was very neat!), and wearing pretend boxing gloves. In the picture on the left, you can see Mattie and Abigail having a good time playing and clearly you can see they were busy! I think the boxing picture is adorable and also a wonderful way for Mattie to get his body moving!

Peter and I did not get home until midnight, and when we walked in the door, Mattie and Abigail were wide awake and playing away. You have to love their energy! If I could bottle it up and use it for my reserves, I would be a lucky lady. I can't thank Tanja enough for her generosity of time, energy, creativity with projects and games, and her willingness and determination to give Peter and I a night out. This was a wonderful social experience for Mattie and a real gift to us!
As for Peter and I, we had a delightful time with Ann and Bob. We headed to Old Town, Alexandria, and first walked along the Potomac River, and then had a lovely Italian dinner. While we were walking down one of the main streets in Old Town, we bumped into one of our favorite HEM/ONC nurses, Miki. It was nice to see Miki and it meant a lot to me that even when she is not working, she wears the hope necklace we gave her for Christmas.
The irony is if Ann did not invite us out tonight, we probably would not have gone, but she motivated me, and as I was out and surrounded by normalcy for a while, my migraine started to dissipate. I imagine many of our readers would conclude that Ann (our Team Mattie coordinator) and I were good friends before this year. Certainly Ann and I knew each other, we served on the RCC (Mattie's preschool) board together, and we saw each other periodically at both preschool and SSSAS events, but that was the extent of our interaction. Mattie's illness, though completely tragic, has given me the gift of Ann's friendship. Over the course of this year, I have had the unique opportunity to get to know Ann quite well. It is hard to express my deepest thanks to Ann in words, but she is a very dear person to me and what she does for me and my family each and every day, will never be forgotten. Of course, both Peter and I feel that Dr. Bob has given Mattie a second chance on life. So together Bob and Ann are quite a dynamic combination and it is my only hope that they realize how much we appreciate them.
I would have to say today was a great day for all of us, and it just illustrates how healing the power of social connections are no matter what age you are. On sunday, we have been invited over to visit the Cooper's. Campbell and Livi are good buddies of Mattie, and I am happy Mattie will have the opportunity for another positive social experience. I end tonight's blog with a message I received today from my friend Charlie. Charlie wrote, "It is pretty clear that children have far more resiliency than adults do. It is nice to hear that Mattie is up and around and doing positive things. While I am sure it does your heart and spirit good to see that, I know you also wish you could get a transfusion of some of that energy at this point. Mattie's enthusiasm and natural exuberance are a wonder to read about and must be a delight to see, especiallly since he's had some very tough times. I certainly hope that things continue in a positive direction. Once again, the blog shows that small things are as important as the large ones. Mattie's surgeon is a hero for me, but all the day to day hospital support folks (and school parents/friends) who give so much of their time, effort and love to make things go smoother are the unsung heroes and heroines of the story. Many thanks to all who continue to provide comfort, food, and time to Mattie and your family."