Saturday, August 8, 2009

Saturday, August 8, 2009

Mattie quote of the day: "I told you I had a stomach problem, I knew the bone bugs were back! Why didn't they believe me?"

Quote of the day: "A child's hand in yours -- what tenderness and power it arouses. You are instantly the very touchstone of wisdom and strength." ~ Marjorie Holmes

Mattie and I camped out in the living room last night. Peter set up his tent again for us, and you need to understand that this tent is HUGE. Peter took a photo of us in it this morning, so you can get a feeling for the transformation within our room! I had a hard time falling asleep last night, not unlike most nights, but Ann and Coach Dave (the head football coach at Mattie's school) e-mailed me throughout the night, and I mean into the very early hours of the morning. I am not sure what I have done to deserve such amazing people in my life, but these messages do make a difference to me during this life altering time!

One thing is very obvious now, Mattie is sick. He is sleeping much more. In fact, he went to bed early and did not wake up until around 11am. In fact, when Peter and I went out today, Dan came over to play with Mattie for four hours and Mattie slept the entire time! This is unheard of! Anyone who knows Mattie, knows he NEVER naps. He never liked napping even as a baby! So when he sleeps, it is the tell tale sign that he isn't feeling well. When Peter and I left the house today, I got in the car, and immediately called Dr. Kristen Synder, Mattie's oncologist. I notice that Kristen is checking in with us everyday, even on the weekends. That brings me a certain level of comfort! Kristen feels that Mattie is sleeping more, not necessarily from the pain medication, but most likely because his lungs continue to fill with fluid. The more fluid in the lungs, the harder the heart has to work, which can tire his body out. However, as long as Mattie is able to breathe, and is comfortable, then she felt he was okay, and that we would still be on target to bring him into the hospital on Monday. That gave me some peace of mind, because I did not want to worry about Mattie while I left our home.

Before we left the house today, Mattie and I did an Internet search for battery powered ride on vehicles. I wanted to know which one he wanted and to get a feeling for what features he was looking for. We checked out lots of websites, and he found one he liked at Toys R Us. However, I did not want Peter and I going on a wild goose chase, so I called a local Toys R Us store to see if they had the model Mattie wanted. Calling this store was a complete experience. The first time I called, the clerk put me on hold 8 minutes (I have a counter on my phone, so I am not exaggerating). So I hung up and called again. The second time I waited for 10 minutes, but at least got the answers I needed. While waiting all this time, Mattie was sitting next to me on the floor. He wanted to know what the music was like while I was put on hold. I told him there was NO music. Just silence, so he rectified that, he started singing, until I finally got a live human being to answer my questions! His humor just had me laughing! Mattie was actually excited that Peter and I were going out, because it meant that he was going to get the gift he had wanted all year!

Peter and I were very successful at Toys R Us. We then had lunch together and made a quick visit to see Ann's mom, since we were in her neck of the woods. You have to remember that Mary has been alone for almost two weeks now, while her husband is recovering in another facility. I understand this loneliness all too well, and Peter and Mary had a fun chat about their lives when they both were living in Boston.

When we got home, I was stunned to see Mattie still sleeping. I immediately got worried, but he woke up when I called his name, and then got excited because his car was here. Dan helped Peter carry the ride on car upstairs from our car. This was no easy task since it weighs a ton and is bulky! I tried to capture some pictures of our new addition to the family. Mattie has named this car, Speedy Red!

Left: The huge box concealing "Speedy Red"was sitting on our deck for Mattie to inspect.

Right: We asked Mattie to close his eyes, and when Peter brought Mattie outside, I snapped a picture of his reaction to this large box.

Left: Peter and Mattie taking Speedy Red out of his box.

Right: I couldn't resist, here is Daddy in a box. Mattie got a kick out of it!

Left: Mattie helping to assemble Speedy Red. This wasn't an easy project. It took all of us over an hour to do this. Mattie was somewhat helpful, a little impatient, and of course very excited!

Right: Peter underneath the car. Mattie wanted me to snap a picture of this. Since it made him feel like Speedy Red was a real car.

Left: The battery that runs this car needs 24 hours to charge before it can be used. So Peter and I took turns pushing Mattie around in his car.

Right: Got to love the happiness on Mattie's face!

While Mattie was driving around outside, we bumped into several of our neighbors, all of whom wanted to check out his new car! Mattie plans on having a race against JJ (our resident Jack Russell Terrier) tomorrow. Car versus dog! Should be interesting, but Speedy Red can go 10MPH. You had to see Peter and I picking out this car in the store. I literally jumped into all the cars on display. Mind you I am not the size of a child clearly, but I wasn't about to buy him a car that I couldn't ride on with him and help him out. The kids at Toys R Us were just watching me, probably thinking this adult has really lost it!

We had a wonderful home cooked dinner tonight thanks to the Cruze family. Thank you Jackie for your delicious fruits, vegetables, tenderloin, and very generous desserts! You really spoiled us and Mattie loves the Sponge Bob balloon!

Mattie watched us eat tonight, and was getting very frustrated. He wants to eat too, but can't. So before Peter and I continued eating, I told Mattie that I had something to tell him. I told him that we know he wants to eat, and it isn't his fault that he can not. I told him that the scans he took this week revealed that the bone bugs came back to his stomach. I wasn't sure how he was going to react to this, but he immediately piped in and said, "I told you I had a stomach problem. I knew the bone bugs were back. Why didn't they believe me?" Mattie actually made it easy for me tonight. I told him we weren't going to do chemotherapy or surgery. Instead, there was a machine that will target medicine to the area, and try to blast away the bugs. I also told him that he only had to do it three times this week, and would be sedated for each procedure. With that he was thrilled, and moved on to the next thing. I am sure we will revisit this, but for now, the dialogue has been started. As I told Peter today, in a way, Mattie was never really a part of this world. He was always very unique, even as a baby, but I had no idea what great life lesson he was going to teach me within his 7 years on this earth.

After dinner, Mattie wanted to ride on Speedy Red again. So Peter pushed him, and I went outside to capture some photos. However, I became a target. Speedy and Mattie landed up chasing me around, and Mattie thought that was absolutely hysterical.

Tonight was laundry night as well, as we try to prepare for a hospital admission on Monday. I find it ironic, that my gut instinct told me NOT to unpack any of my hospital bags, and I hadn't. I have the clothes, towels, and personal items still all in place. Peter has all our hospital boxes in his car as well. I just had a sense that I couldn't unpack, because I had to be ready to mobilize forces at a moment's notice. Wish I was wrong!

We continue to receive such amazing e-mails. Practically every HEM/ONC nurse who has cared for Mattie has written me a personal e-mail. I think that says a lot about their commitment to Mattie and my family. They are amazing women, and I never knew I would be back so soon for their help. This time they are not going to save Mattie's life, but to help him and us make him comfortable and live out his remaining time in a productive fashion.

I would like to end tonight's posting with eight messages I received today. The first message if from my friend, Charlie. Charlie wrote, "I know you and Peter are still reeling from the news; give yourselves time to come to grips with it. Once again, Mattie is going to take the lead on what he can or cannot do. I am sure you are disappointed that Mattie has given up his dream of "captaining" a ship but I think he understands his limitations better than the rest of us do. Perhaps dealing with a completely new experience and new people is just too much for him now or perhaps his "view" of Mattie as captain doesn't include a wheelchair. It is hard to know why unless he chooses to share. At any rate, I think you are wise to try to find out Mattie's current "dream desire" and go that route if possible. I suspect we will see an electric car in Mattie's future and I look forward to seeing pictures on the blog. I think another issue here is pain; when you are in pain you tend to withdraw, to "circle the wagons" and protect yourself; I think some of that may also be happening with Mattie now. He knows you and Peter (and Ann) can all be counted on to protect him and support him when and where he needs it; you will be the foundation on which he spends his time now. I pray for strength for you to see this through."

The second message if from a SSSAS parent, and colleague I have known for many years. Rich wrote, "I have followed your journey this year by continuing to read Mattie’s blog. At various points, I thought about writing with a word of encouragement or just to let you know that we have been thinking and praying for Mattie. However, from your postings, I also realized that there were many, many others who had “got to you first” and I figured that you had your hands full reading their postings and taking care of Mattie. Now, I have decided to be selfish and write you after your most recent postings in regard to Mattie’s latest prognosis. Truly, no need to respond! It wasn’t too long ago that you posted something that made me think you were feeling a bit guilty about not fulfilling all of your various duties to groups such as AMHCA. At that point, I was going to let you know that of the nineteen division presidents and four regional chairs from your “leadership class” I felt that you were the bravest, hardest working, most committed, and best parent of them all! Your sacrifices on behalf of and your dedication to Mattie this past year have been so inspirational. And, the fact that you were willing to share all of this with the thousands of us who read the blog showed what special and unique parents you and Peter are! Quite frankly, you are both amazing. I know that this next chapter (whatever lies ahead) will be something that those same unique and amazing talents that have sustained you through the past 12 months will be called upon once again. Your latest posting seemed to question the value of the various treatments that Mattie went through this year, despite what the “experts” at Sloane said last year. Do not second guess yourself for even one nanosecond. You and Peter gave Mattie what more parents should give their kids---hope and a chance to beat the odds. Everything you did this year had one central focus and you did not waver one bit. While Mattie experienced ups and downs physically and emotionally, deep down inside, he was able to keep going because his mom and dad gave him hope. And, a byproduct of hope is the ability to hang in there and move forward. What a gift you gave him! I join with so many others who share a collective heartbreak over this latest news. What I hope will continue to carry you and Peter through this next period is knowing that so many people are here to support you (verbally, silently, through prayer, etc.). Most importantly, I think I can speak for all of us when I say that the efforts that you and Peter have put in gave Mattie the time to know how much he is loved, how special he is, and continually demonstrated what wonderful parents he has!"

The third message is from my friend, Susan S. Susan wrote, "As always I read your blog with a heavy heart, and two things occurred to me. One, where you said that "Mattie has so many gifts that I feel he possesses and could share with the world, and when he dies, it will not only be a lost opportunity for us, but for all those he could have potentially touched"While there is truth in that, I believe that in this last 13 months Mattie has shared his gifts and touched more lives than any other 7 year old. Actually more than most of us adults. I hope you can find comfort in knowing that the memory of Mattie will live on in many lives for many years. Many of us will never be the same having known Mattie, you and Peter; and hopefully we can go on to touch others because of the way Mattie touched us.The other thought was about your "emotionless coping mechanism." When my mom died, I had a similar emotionless experience. While it may be emotionless I believe that is your inner strength. It is like a life force that wells up that carries you through what you have to do. It's like a tide that carries you along for as long as you need it. You have had so much to devastating news to digest in such a short period of time that this strength keeps for from falling apart. But when that need is gone, then you will have time to give in to your emotions. Lest you think you are just like everyone else. Know this, not everyone has this strength you have, many people collapse giving in to the overwhelming tide of emotions. While you may feel emotionless, I hope that you can feel the cocoon of love that surrounds you from the many people who care about and support you."

The fourth message is from Mattie's favorite CT tech, Jey. Mattie considers Jey his "big brother." Jey wrote, "Hey Mom and Peter, I learned yesterday of my little brothers cancer coming back with cruel intentions and as bad as I wanted to come up and see him I couldn't bring myself to do so because I knew that I would start crying like I am starting to now and I didn't want him to see me like that. So I want to apologize for not coming up. However I wanted both of you to know that I LOVE YOU ALL with every breath I breathe and I totally understand how you feel and I truly wish that there was some way that Mattie's cancer would just disappear and never come back as both of you do. This is heartbreaking and I am so sorry for what has come into your family. If I can do anything for Mattie other than being his big brother please let me know and I will see what I can do. Momma Vicki, As I read the blog I must admit that I felt every bit of disappointment that you expressed and I must agree with you when you said that you thought that Mattie was trying to tell you something when he asked you not to leave him again. I believe in my heart that Mattie knows what's going on just doesn't know how to exactly put it into words. My little brother is very smart and observant so I believe he knows. PLEASE tell Mattie that I LOVE HIM. See you guys when you come in Monday. I am always here for you guys whenever I can do anything just let me know. I have been and will continue to pray for you all."

The fifth message is from Mattie's physical therapist, Anna. Anna is away on her honeymoon, and still tracked down a computer in Equador to write to me. Anna wrote, "I was so happy that I have found a computer to check in on how you, Mattie and Peter are doing. I have been thinking of you all the time. No one should ever have to go through what you are going through. I only wish I could be there to give hugs, talk, play with Mattie and make him smile. I hate being this far away after having been so close to help support all of you. But, please know as I have said, my heart is with you. My heart is truly broken but, I am truly blessed to have Mattie Brown and his parents in my life. And Mattie is so lucky to have you and Peter as his parents. I just wish I could be there. I am reading the blog every chance I get and hope to have e-mail over the next few days. Please tell Mattie I miss him and can´t wait to see him when I get home. Tell him I want a race re-match when I get back!!!! "

The sixth message if from one of Mattie's favorite babysitters. Emily W. wrote, "I have to apologize for not emailing you sooner- I read the blog every night and when I read the August 5th blog, I have to admit that it took me a few days to process. I still have not completely processed what is going on with Mattie. I am beyond devastated and cannot fathom how the course of his illness is possible for such a beautiful, strong, compassionate and smart little boy. I have always considered Mattie to be the only 7-year old boy that I can honestly say is my best friend. The friendship and connection him and I developed during the two years I lived in D.C. was one that will never be able to be replaced. In the past year, I have felt a true loss as I was not able to see Mattie on a daily/weekly/monthly basis as Mattie really became an important person in my life as did you and Peter. Reading about this devastating news and knowing how unfathomable this is for you and your family to experience has left me speechless. I know there is nothing I can do or say to make anything easier for you, Peter or Mattie, but I will tell you this: You and Peter have been truly the most remarkably committed, strong, and supportive parents to Mattie not only through his illness but for all of his life. Your parental influence on him is obvious to all of us who have gotten to know Mattie. He is the most mature, compassionate, empathetic, intelligent and insightful 7-year old that I have EVER come across and the credit goes straight to you and Peter. Mattie was my Mighty Mattie when I lived on the 6th floor, but even when I left D.C. and would come back to visit, he still welcomed me graciously and continued to be my hero, my Mighty Mattie. Mattie has always been my Mighty Mattie and will never cease to be. After all, it was only Mattie who has protected me from bees. When I look at pictures on the blog I see a beautiful, smiling, happy boy. This is the only image in my mind that I see when I think of Mattie because this is the only face I have ever seen on him! (Well, of course the sometimes cute little pout of disappointment that he would make when I couldn't figure out his lego set...but Mattie must know that we are not all as talented as him when it comes to these complicated things!) Vicki, my heart aches with sadness, helplessness, and fear. My heart, my love, my thoughts and prayers are always with you, Peter and my Mighty Mattie. May you gain strength from knowing how deeply he has touched so many lives. Please give Mattie hugs and kisses from me....and please accept this big cyber hug and kiss from me to you and Peter."

The seventh message if from my good friend, Lorraine. Lorraine wrote, "I can't find the words to express how overwhelming it is to read you discussing Mattie's funeral. I physically flinched when I read this. I understand the need to plan and be an adult, but this horrific news is way too raw -- in less than a week you've gone from thinking Mattie has an ulcer, relieved to at least know why he is not eating, and then to learn they suspected something on the liver and then hours later to hear that cancer has spread violently, shocking everyone. It seems a blessing that right now you are finding yourself "emotionless" and that you can find comfort with Ann's parents. However you can reduce the extreme mental anguish of what is going on seems like a good way to function, as you navigate the unknown and dig down as deep as you superhumanly can to have the strength for Mattie to make the times with him as happy as you can."

The eighth message is from a former student of mine. I actually received many messages in the past two days from my students, and I want them to know I value their support. I have been blessed with great students over the years. Julie wrote, "I just finished reading your blog and I know you are hurt that Mattie didn't want to go on the boat ride yesterday. I can't help but wonder if on some level Mattie knows that his one true wish could come true and then what? Would that mean that he was about to die? From everything I have read about Mattie over the past year it is clear that he is a fighter and has always been a fighter. Maybe he isn't quite ready to stop fighting and that is why he doesn't want to go on the boat ride just yet. Maybe after you have the discussion with Mattie about what is happening he will reconsider these generous offers again. Or possibly like you said that dream has changed and now you need to find another one. I am not a mother yet so I cannot totally understand what you are going through and the emotions you feel, but I have no doubt that if I was I would have chosen the same course of action that you took with regards to his treatment. Because of the aggressive treatment you gave Mattie you were able to give him 365+ days on this earth with you and Peter. I have always heard that most people say before they are passing away that they wish they could have just one more day......well by your and Peter's determination and your advocacy for Mattie you were able to give him hundreds of more days here with you, your family, and friends. That is priceless. I have no doubt that you know the road ahead for you and Peter is going to be a difficult and long one. I have learned from your skillful teaching as my professor that the grieving of a child is the hardest. Your love for Mattie will never die nor will the memories you have of him. No matter where he is physically resting he will always be watching down on you as your little guardian angel. It is evident by the blog how wonderful and strong your relationship with Peter is. You two have an incredibly strong relationship and are an amazing team. You two will need each other more than ever after Mattie has passed away. I have no doubt that this love you have for each other will help with the grieving process. Vicki, I am sorry that you have to go through this horrific ordeal but please know that you are not alone. You have so many friends and family (some who have only met you through the blog) to help you through this. You have touched and changed so many lives through you blogging that now is the time to let us help you. If there are any wishes or dreams you wanted to do with Mattie now is the time to let us know and we can try and help achieve them."