Sunday, August 9, 2009

Sunday, August 9, 2009

Quote of the day: "Life is just a chance to grow a soul." ~ A. Powell Davies

Before I tell you about Mattie's exciting day, I want to pause and acknowledge the loss of a teenager we have gotten to know through his blog. Paul lived in England and was diagnosed with osteosarcoma after Mattie. However, we learned the tragic news that Paul died last night. This brings us great sadness. I have e-mailed his parents throughout the year, and in a way we were all warriors fighting for the same outcome. When one child with osteosarcoma dies, we are all profoundly impacted. May Paul be in peace, and may his fight never be forgotten. My thoughts are with his parents, because I can only imagine the heartache they are feeling. Please keep Paul's family in your thoughts and prayers.

Mattie had a hard time going to sleep last night. Mattie and I landed up reading a lot of books in his tent, using a flashlight. He loved it. Then we moved onto having computer time, and finally I just decided to lie next to him and rub his head until he fell asleep. But he had a restless night of sleep. I of course am sleeping on the edge, because I know Mattie's lungs are filling with fluid.

At around 7am, I saw Mattie moving his arms, like he was stretching them. When he eventually woke up, he told me that he was dreaming this morning. While dreaming he could feel that he was moving his arms. He then told me, he was dreaming of driving Speedy Red. So in essence he was limbering his arms up for driving today. Got to love him.

Mattie couldn't wait to drive Speedy Red! However, the car's battery still needed to be charged a few more hours. Once the battery was plugged in, Mattie was chomping at the bit to drive. I of course wasn't sure how well Mattie was going to be able to drive, so I squeezed (literally) myself into this car, and helped him with the steering wheel. It turns out though, that Mattie is a natural! He got the whole concept of the gas petal, and how to steer almost instantaneously. I guess I shouldn't be surprised, since he is very mechanically inclined! Any case, we had a wonderful time driving around outside. JJ, our resident Jack Russell Terrier, also came out to watch Mattie driving back and forth. JJ did not know what to make out of this car, but was intrigued because it involved Mattie. One of our neighbors also came out to watch Mattie, and he brought his two year old son with him. I asked Mattie if he would give Dante a ride on his car, and Mattie agreed. Dante sat in the passenger seat, and Mattie literally drove the car by himself. He did a great job! I was very proud of him, and even more thrilled how happy this made him. Mattie's car also has a radio, and he just loves searching the stations and listening to the music as well. Dante then left us to take a nap, and Mattie turned to me and said that he wished I gave him a baby brother. He said that his brother could then ride around with him. Being an only child myself, I know that one grapples with this question and the question can evolve over the course of one's lifespan. I knew it was important to hear Mattie's input on this, and we followed up with this discussion inside. I told Mattie that if he had a brother who was younger than him, that this would take away the time and attention that I devote to him on a daily basis. He thought that one through, and then said, "NO I don't want a baby brother after all!" He always knows how to make me laugh.

Left and Right: Peter snapped some pictures of Mattie and I flying by. We were going 10MPH, which may not seem fast, but in essence it felt that way!

Mattie was visited by Liza today. Liza was one of Linda's volunteers at the hospital. Liza was also one of Mattie's favorites and they always had a good rapport with each other. Liza was away for the summer doing an internship at Yale, but she e-mailed me as soon as she got back into town. When Liza arrived Mattie did not want us to leave, but Liza brought an art project for Mattie, and he instantly engaged over the new activity especially after Peter joked around with Mattie about the picture of the skunk on the outside of Liza's art pad. So Mattie was determined to draw a skunk. In fact Mattie and Liza designed a giant skunk, and the little person in the picture getting sprayed on is Peter. Thankfully it is only a picture. However, Mattie did get tired this afternoon, and landed up taking a nap. It is times like this that verify to me that Mattie is sick! Peter took a close up picture of Mattie while napping, and when I look at this face, all I can think of is how on earth do you live without it?

Left: Mattie and Liza's skunk! Peter is pictured wearing a red baseball cap.

Right: Mattie napping.

While Mattie was with Liza, Peter and I had some time together to talk and have lunch. I feel for Peter, because he just opened his mouth at lunch today and started talking about Mattie's care and situation, and I landed up crying through lunch. It is funny, for the most part I operate in a rather emotionless state. I had the good fortune to exchange some e-mails with Sammie's mom, Chris, today. As many of you know, Sammie is living out the remaining part of her life at home with hospice care. I have always been impressed with Chris' candor and insights, and she too revealed to me that she felt the same way I did when she first learned about Sammie's terminal condition. I am not sure if there is any other way to act, especially when you know you HAVE TO be able to function and care for your child. This immediate demand absorbs you, and keeps you focused. There is no time to sit in a corner and weep, though I certainly have every right to. When Peter and I returned home, we found Mattie sleeping.

We let him nap for a while, because he had a big night planned. Linda, Mattie's childlife specialist, arranged for a special event at the Lego Store. Mattie was invited to the store, after the mall closed, and got to interact with all the Lego employees and build whatever he desired in the store. Mattie brought his buddy, Abigail with him, and of course Ann. I took many wonderful pictures tonight, but as Abigail aptly stated, "tonight was the best night of her life," and Mattie would concur! THANK YOU LINDA! You created a very special night for Mattie and for all of us. This is something we will never forget.

Left: When we arrived at the Lego store, Linda greeted us and introduced us to all the employees. Mattie is VERY familiar with this store, but never had the opportunity to look around the store without customers in it. In this picture, Mattie is talking with Brandon (a Lego expert/employee), and they were working on finding a project Mattie wanted to work on together. Mattie was fascinated by a taxi that a Lego Brickmaster created, which was on display. Mattie wanted to replicate this taxi tonight.

Right: Mattie wheeled himself over to the brick wall collection, and got to hand pick out all the bricks he needed with Brandon's help.

Left: Mattie and Brandon working on the Taxi.

Right: Mattie working hard and concentrating on the design. There were NO instructions to follow, he just had a copy a live model.

Left and right: Mattie and Abigail working on the Taxi together!

Left and right: Mattie and Abigail's final product on the left. The taxi on the right, was the one created by a Lego Brick master. Mattie and Abigail felt their model was better! Mattie is in love with the taxi and the whole experience. The Lego store is going to try to team Mattie up with a local Lego Brick master, in hopes that maybe they can work on a project together.

Left: The whole taxi building team, featuring Brandon, Abigail, Mattie, and Jared (a brick master).

It was a night to remember, and Mattie had his snippy and demanding moments, but Abigail went with the flow and loyally stood by Mattie's side, and the Lego employees handled it beautifully. They took pictures of Mattie too, and they asked whether the store could keep his taxi to display it. He wasn't open to this, because he wanted to take it home, but I think they were very pleased with the final product. The store couldn't have done more for Mattie, they gave him a poster, t-shirts, a Lego set, and Brandon and Jared, also gave Mattie and Abigail, two special treats. One was a black heart and the other was a Lego wolf. In essence, they were sworn into the black heart and wolf clubs. Apparently this is a big deal for a Lego affectionado. The kids were thrilled! Clearly Legos has been Mattie's therapy this year, and our saving grace, but tonight, their compassion and generosity of time with Mattie are something that makes Lego a very special toy company in my mind.

Peter and I want to thank JP (our neighbor) and his friend, Sheila for dinner tonight. It has helped me have the energy to write the blog. It is 12:15am, we are all up, and we still have a central line dressing change to do and to finish packing up for the hospital. We have to be at the hospital at 9am, and the procedures (thoracentesis - which removes fluid from the lungs, and placement of the gold seeds for cyberknife) start at 11am.

I would like to end tonight's posting with five messages I received today. The first message is from my friend, Charlie. Charlie wrote, "I found this quote and wanted to tell you that perhaps it is that Mattie was born with his soul but his task was to help others of us grow ours; if so, he has
done a remarkable job in his short life. Not everyone has the opportunity to touch and teach as many as both you and he have. His sunshine will stay long beyond his physical presence. I know these days are impossibly hard for you both. However, going forward is the only option we have as much as we sometimes would much rather go back to another time. Mattie continues to amaze me with his insight and his humor; as always he is right on top of things. I am so glad you were courageous and shared the information about the bone bugs with Mattie. I am not really surprised that he took it so well; he always seems to know more than we think he does. As Jey said, Mattie is very smart and very observant. I am also grateful that the procedures to come are so much less traumatic for him than the other surgeries have been. As always it was wonderful to see Mattie's smiles as he checked out his new car; I am looking forward to more of those in the coming days. I am sure the thought of using his new vehicle will help speed his next release from the hospital. I pray the surgery goes as planned and that Mattie sees immediate relief from his symptoms."

The second message is from my colleague, Martha. Martha wrote, "I have followed Mattie's Blog every day. The first thing I do each day is go to read it. I am always inspired by your devotion and encouraged by Mattie's smiles and fighting spirit. I appreciate very personally the place you and this Angel Child have found in all our hearts. I will never be the same. My husband knows that my time with the blog each morning is sacred. I share the news and pictures with him. He knows this latest sad news and wept with me. He asked, " Who is this Vicki and how do you know her?" After I told him how much you have meant to my professional development over the past several years, He commented, " What a wonderful woman!" Vicki and Peter, please hold close to your hearts and minds the knowledge that you have taken exactly the right path for Mattie and yourselves over the past year -- because you have followed what your heart and mind have led. You used every bit of medical knowledge, but did what you chose as right for your family. That knowledge is what will make these decisions ones you can live with in the future. Nothing could replace those millions of happy moments -- the pictures of that brilliant, happy face, the scores of caring people who have helped carry the load, the meals prepared with such care, the opportunities to share in Mattie's 6th year, and even the victories over Medical Establishment reluctance. I know you will have the courage to continue to take us along through the next difficult time. You can be sure we will be there with you. I now you will find ways to expand the scope of your Blogging to many others who must suffer this same insult from cancer until a cure is found. The pain, sorrow and loss you are experiencing is unimagined, but you have taught us all to know that it can, when necessary, be lived through with feeling alive and hope ever present. WHAT A GIFT! Vicki, Peter, and Mattie, you are a wise and courageous team."

The third message is from one of Mattie's outstanding HEM/ONC nurses. Katie wrote, "I've been home in Nashville for a wedding shower this weekend and have looked at the blog every chance I get. Wanted you to know that youh ave many Nashvillians praying for you, Peter and Mattie. Especially my mom and grandmother who are both strong "prayer warriors."My heart breaks every second for you all. You have truly been the most amazing advocate for your son, and I've seen a lot of "Oncology Moms."Mattie has been blessed to have you two as parents just as much as you all have been blessed with Mattie. I will be back to work on Tuesday and hope to be as much of a support as possible through the final steps of this journey. All my love and prayers. "I thank my God every time I remember you."Philippians 1:3"

The fourth message is from my mom. My mom wrote, "During the last year, I would make sure I put on my orange bracelet that read "Stomp it Out For A Mattie Miracle"at the start of each new day and take it off at night before I went to bed with a prayer for Mattie to be victorious in his battle against those "bad bugs." The idea of a "Mattie Miracle" sustained me during the chemo, the surgeries and the emotional roller-coaster rides that Mattie endured while undergoing treatment in search of a cure. In my heart, I knew he was always fighting against the odds but his willingness to soldier on was remarkable to witness in one so young and so very fragile. He showed more courage, spunk and fighting spirit than you can ever imagine if you were not there but if you were, you know that I do NOT exaggerate! Somehow watching Mattie battle the cancer on so many fronts brought life into vivid focus, fine tuning the lens through which we all gain a perspective on human existence and evaluate the nature of love, commitment and purpose. Watching him face up to so many mind chilling invasive procedures with such fortitude and fearlessness is a measure of his inner strength and the trust he had in his parents' good judgment. For many long, hard months, the theme, "Mattie Miracle" gave me hope that Mattie could defeat the cancer that invaded his body and that with a fight, modern medicine would give him a chance to regain his health and lead a normal life. That hope is now gone but is has been replaced with a deeper knowledge that could only come at the end of this painful journey that took me to this tragic moment. Simply put, "MATTIE IS A MIRACLE ' and always has been from the day he was born. Little did we know he came burdened with a difficult mission that would unfold 7 years later but through his short life, we have been forever changed, and made wiser and stronger. In the short time he has been with us, he has affected us in profound ways making us appreciate life more fully and by showing us that we must not lose sight of the blessings we often take for granted until they are taken from us. Although we are witnessing his childhood slipping away, he still has that amazing power to surprise and shock us by his prescient observations about himself. For example, when he learned from his parents yesterday that the "bad bone bugs" were back, he, without skipping a beat, shot back that the doctors were wrong, did not listen to him and should have known that he couldn't eat because the "bad bone bugs" were back and not because he didn't want to eat! There is he defending himself knowing that his complaints are justified even if the doctors haven't figured it out yet!! This illustrates his quick mind and gives us a glimpse at what a contender a fully grown Mattie might have been. Once again, I return to that captivating smile of his. There is was once again on the blog lighting up the screen when you surprised him with his very own big red electric car to ride and race. We know how much Mattie is in to races, especially winning them! He has a perfect track record thanks to some willing conspirators and I love them all for going along with it because in the short life, it gives him so much real pleasure!! Thanks all of you and you know who you are!!! Daddy and I realize that we were gifted with Mattie for 7 beautiful years that will always be treasured and know in our hearts that even though the cancer will take him, it can not erase the beauty of all that we shared with him and the memories we have of him. I know there will come a time when I will start and end each day by saying," WE WERE BLESSED WITH A MATTIE MIRACLE FOR 7 UNFORGETTABLE YEARS IN WHICH HE TAUGHT US TO APPRECIATE WHAT TRULY MATTERS IN LIFE." I will always love you Mattie and will never say goodbye but adios, for we will be together again somewhere in time."

The final message is from a fellow SSSAS parent and good friend. Tad wrote, "We have stood by you, Pete and Mattie, in spirit, over the last several days. We have watched in anguish, love and prayer as the news unfolded. With the news, also came unspeakable anger at this disease which has and is still taking so many, including many of my family members, and now hurting dearest Mattie. I must admit, I am not letting go of dreams of "our boys" growing up together, even if in my mind's eye, the two are hand in hand, but one shining brilliantly with the aura of a spirit that has courageously experienced so much, loved so much, and touched so many in so short a time.What Mattie does for us..."

**Mattie reminds us that every moment is precious.

**Mattie shows us that we can face fear with relentless courage.

**Mattie teaches us to laugh, even when we are sad.

**Mattie reveals to us the deep, lasting beauty of compassionate acts.

**Mattie reassures us that our prayers bring us closer together in love and support.

**Mattie awakens in us the knowledge that we must act now to change the world for the better.

**Mattie confirms to parents now, and in the future, the relentless love and courage of a mother and father.

**Mattie forges through us a community that has and will continue to support us in our grief and care.

**Mattie gives us hope in understanding that we are following him on a common path, and that we will all eventually join him again.