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."

Friday, August 8, 2009

Friday, August 8, 2009 -- Thank you for visiting Mattie's blog today, it was hit 4000 times today! Amazing! Your support, love, and comfort mean a great deal to us!

Quote of the day: “I believe that imagination is stronger than knowledge - myth is more potent than history - dreams are more powerful than facts - hope always triumphs over experience - laughter is the cure for grief - love is stronger than death.” ~ Robert Fulghum

Peter and I started Mattie on a fentanyl transdermal pain patch last night. This morning, we both noticed that Mattie was very pale, was twitching in his sleep, and was smacking his lips together. He wasn't consciously doing this. Of course we both rationalized that these behaviors were probably due to the reintroduction of the narcotics to his system, but frankly after the news we received on Wednesday, our minds leaped to the possibility that the cancer has spread to his brain. So instead of taking any chances, we called Mattie's doctors. They agreed that this most likely was a side effect of the pain meds, but that we should keep an eye on it. After Mattie woke up, these behaviors disappeared and we haven't seen them for the rest of the day.

Peter and I want to thank all of Team Mattie (and Ann and Alison coordinating all the information) for mobilizing forces today to try to plan a wonderful boating event for Mattie. Throughout the year, Mattie's one wish was to have a boat, and be a captain of the boat. So today, several offers were generously given to us to help Mattie's wish come true. One for example, involved a special tour of a Frigate class Navy vessel, in which Mattie could help pilot the ship, and also meet several officers. It sounded like an incredibly generous and once in a lifetime offer. In addition, our friend Joy, also coordinated a special Potomac river excursion today on a private boat for Mattie (Thanks Joy!). However, to our dismay, when we told Mattie about the boat outings, he was scared, intimidated, overwhelmed, and refused to go on any of them. This caught us by surprise. We tried every which way to get him to consider these offers, but as he said, which he learned from me, "No means NO!" Peter and I were both upset, because the old Mattie would have jumped at this chance to go on a boat, but then we had to stop and reevaluate our own behavior with Mattie. Did we want him to go on the ship for us or for him? If he really did not want to go, we had to respect that choice, and come to peace with the fact that we missed the window of opportunity to make that wish come true. We are now in search of meeting whatever wish he would like. We all have our own preconceived notions of what contributes to good memories, but again, our wishes don't matter at this point, what matters is what makes Mattie happy.

I was talking to my mom yesterday, and she got me thinking. She wants to help us get something for Mattie that he always wanted. So I gave that some thought, and one thing jumped out at me. Mattie has always wanted one of those big battery powered electric ride on cars. We never took that request seriously, though we did use that as a carrot to inspire him to walk. We always told him when he walks again, this will be his big reward. Well clearly that moment will not come, so instead, Peter and I are heading out tomorrow, with the help of my parents, to buy him the car that he always wanted.

Early this afternoon, Mattie was visited by Bob Weiman, the head of Mattie's lower school. Bob introduced Mattie to several new magic tricks and taught Mattie how to perform a few. When Bob arrived, Mattie was in a bit of a funk, but Bob found a way to work through Mattie's barriers. In fact, Bob helped change the tone of the day for us, because after the refusal of the boat trips, all of us were in a mood. Peter really loves figuring out how Bob does his tricks, so Bob is always a good diversion for all of us. We can't thank him enough for his incredible support and care for our family, and it only saddens me that my family won't have many more years to interact with Bob on the lower school campus. I still can't believe what is happening to Mattie and to us. This is a precious life that has been cut short way too soon. 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. Thank you Bob for your generosity of time, skills, and support.

Today was not a good eating day for Mattie, and at the moment he is living on milk alone. As the afternoon wore on, I had to leave the house. I couldn't take it anymore. In fact, I feel at times trapped at home, with the pending feel of death in the air. Peter spent the afternoon with Mattie, and they built Legos and even did a Target run. Mattie came home with this hotwheel set that he truly loves, and he couldn't wait to show it to me when I got home later in the day.

Somewhere along the way today, I went to visit Ann's mom and dad. Mary and Sully are both very upset over the news of Mattie. For them it is like reexperiencing the death of their son. In fact, Mary told me she fell in love with Mattie as soon as she saw his face. Music to a mother's ears, and I cherish all these comments. Visiting Ann's parents, is in no way a chore for me. They have become my friends, and despite their own physical limitations, they really try to support and empathize with my situation. Well how could they not, they have lived my scenario already. After my visits, I met up with Ann, and chatted about a whole bunch of things. One thing is clear to me is that I have moments where I completely acknowledge that I am emotionless about Mattie's terminal condition. Personally, I don't think this is denial, but instead a coping mechanism to help me get through one day to the next. I feel right now that I have to be strong for Mattie, because we still have so much ahead to fight. I am doing battle with pending pain, and this frightens me. The worst form of torture is seeing your child writhing in pain, and you can't do anything about it. I dread this, I dread the conversation that I know will happen when he will ask me about his cancer, when he will ask me about death, when he most likely will ask why this has happened to him, and I could go on. This is NOT a conversation I wish upon any parent!

The mention of Mattie's funeral has been brought to my attention several times today. I know that I have to be the adult and come to terms with these big decisions. But today is NOT that day for me. Peter also talked to me about this tonight, and wanted to know my feelings on this. I told him to contact Jim Greenfield, the catholic priest who gave Peter and I precana and also baptized Mattie. I am so overwrought about this, that right now I don't want Mattie buried in a cemetery. I want him in an urn in our home. Peter is trying to persuade me not to do this, but I want Mattie with me, not somewhere where I can't be near him each day. I am sure my feelings may evolve, but right now, losing Mattie in the physical world is not something I can grasp.

Mattie and I had many tender moments throughout the day. At one point today he was sitting on the deck with me, and wanted to hold my hand. This is ALL very unusual behavior for Mattie, because normally he is all about moving and play. As I was holding his hand, I just couldn't help but wonder how long will I have this opportunity left? I worry about forgetting what Mattie looks like and his mannerisms as years go by. The mind has a funny way of blocking things out. I experienced this with my grandmother, who I was immensely close to, and grew up with. Once she died, I struggled to remember what she looked like, the shade of her green eyes, and what her voice sounded like. I don't want to forget these aspects of Mattie!

Tonight, Ann came over and camped out with Mattie. Mattie had Peter set the camping tent back up in our living room. While Ann was over, Mattie also was visited by Margaret, his first preschool teacher at RCC. Margaret brought over a glow station for Mattie to use in the tent tonight. Thanks Margaret for the visit and the support.

Mattie has a special rapport with Ann and the irony is, that while Peter and I were out having dinner, Mattie not only played with Ann but also fell asleep in the tent with her. Mattie is very comfortable with Ann and trusts her, and I wish I took a picture of them camping out together, but my mind isn't working to its usual capacity these days. Thank you Ann for being there for all of us, and being such a positive force in Mattie's life.

I can't thank all of you enough for your beautiful postings and e-mails. We read each one, and they mean a great deal to us. We received many, many e-mails today as well, and wish I could post them all. However, I would like to share five messages with you as I end tonight's posting. The first message is from my friend, Charlie. Charlie wrote, "I know yesterday was very traumatic for you and Peter. How can you make these decisions and then, how can you not? No one knows Mattie better than you and so no one else can begin to understand what is needed. I know I would offer my bone marrow, my blood, a kidney if that would help and I suspect most who know you and those who have grown to know you via the blog feel the same way. Unfortunately, I have nothing to offer that will extend Mattie's life. I know you are grappling with how to go on after Mattie dies but for now he lives and he needs you. That has to be your focus for now. I am sure you feel both numb and overwhelmed; make the decisions which have to be made, leave everything else aside and enjoy as much time with Mattie as you can. The decision you made to fight was the right one, you can see it in every picture on the blog graced by Mattie's smiles, read it in his growth as a person and the way you've touched so many lives. I only wish there were a way to spare you the pain every parent fears most and since I cannot, I can only tell you I will walk the rest of the way with you. You are as always in my prayers this day and every day; I wish Mattie as many sun filled, pain free days as possible."

The second message is from Mattie's preschool director. Kim wrote, "Reading your news, my heart shrunk, and exploded, all at the same time. How can this happen? I want you to know that over the past year, you have been a teacher in the truest, deepest sense of the word. You have given of yourself, unstintingly, to your family, to others that you love – and to many you have never even met. We have all learned so much about the things in life – and death – that are most important. I can only say thank you for the gifts that you have, perhaps unknowingly, given me. Yesterday, filled with grief, I spent my day at RCC doing what I could. The halls and classrooms felt cold and empty….. until I forced myself to fill them with memories of Mattie’s days in them. And, at last, I could smile for a moment. My love and heart continue to be with you. Do the best you can to take care of yourself and Peter and Mattie."

The third message is from my friend, Susan S. Susan wrote, "Ever since I last visited Mattie and we all danced around the hall to ABBA I have been waiting to check it out at the library. I FINALLY got it. I was listening to it today, thinking how much life has changed since that day. I will never hear any ABBA song again without thinking of Mattie. His strength, courage, and impishness!! His excitement over even the littlest things no matter what they may be. I remember the day we went to Harrison park. He is such a pistol as my dad would say. Anyway one of the songs I heard today was "I have a dream." It just really struck me, especially "I believe in angels, when I know the time is right for me, I'll cross the stream, I have a dream." It seems so fitting, that when the time comes that Mattie will become a very special angel, just as he was special to all of us down here."

The fourth message if from my good friend, Lorraine. Lorraine wrote, "I feel the need to write something to you, despite the 100+ personal emails you received just from yesterday, which of course you cannot possibly respond to, particularly now when time is so very precious. There's an enormous feeling of sadness, sorrow, and shock we're all feeling. There's a part of me that cannot being to imagine how you will get through the next minutes, hours, days, and weeks, let alone the months and years ahead. But there is also a part of me that believes the answers will come from Mattie. Mattie will guide you, Mattie will be your spiritual guide and he will help you in the deepest most loneliest, most touching, most gentlest and most saddest of ways, Mattie will help you with the answers. I think Mattie has some sense of how fragile a little boy he now is. There will come a time when he will ask you if he is dying and while this is the most horrific thing to think about and even write, I believe you will know what to say and that your words and your love and your gentleness with him will comfort him. He will know that you will really never ever leave him, that your love for him will always be inside of him, and he will also know that he will always be with you deep in your soul. Mattie will guide these huge life decisions that no parent should ever be asked to make, and his spirit will stay in your heart forever. Mattie must always be that big, beautiful, bright shining yellow SUN that you get your strength from in your darkest hours -- something no one can ever ever take away from you."

The final message if from my mom. My mom wrote, "Mattie looks so happy and beautiful in today's blog that it is hard to process the news that he has terminal cancer. That smile of his can melt hearts of stone and move people to tears because it is so warm and wonderful but alas the verdict is in and fate has decided that we are meant to appreciate its preciousness NOW for it is like life itself, fleeting and only meant to be with us for a short time. Think of all the good that Mattie sparked within each of us with his glorious sunny smile within this less than perfect year, and reflect on the many memorable happy times where he laughed, played, joked, created art wherever he went, entertained, performed his magic, made friends and packed in a lifetime of living in 7 short years and rose above his personal hardships. It is an astonishing accomplishment. Only 7 and he did all that! He is truly one remarkable little fellow!! Even as I write I know, that beautiful smile will linger on forever in my heart!!"

Thursday, August 6, 2009

Thursday, August 6, 2009 -- Thank you for visiting the blog within the last day and for ALL your wonderful postings and e-mails. It means a great deal to us. Between yesterday and today, Mattie's blog was visited 2000 times! You are all amazing!

Quotes of the day (Thanks Alison and Charlie!): "A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. But...there is no word for a parent who loses a child, that's how awful the loss is!" ~ Neugeboren

"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight." ~ Kahlil Gibran

Today was another emotionally draining day! Thursdays are typically our MTP-PE days. However, we have stopped this experimental treatment because it clearly was ineffective for Mattie. Funny how I thought these clinic days were a hassle, but now I long for these days, where it still meant that we were fighting the disease. Amazing how your world can change over night. For us we have experienced this profound change twice, once on July 23 (when Mattie was diagnosed) and then on August 5 (when we learned Mattie's cancer spread all over). But with regard to MTP-PE, I always had great reservations about this treatment to begin with since the literature was sketchy at best about its effectiveness. But when you are a parent in a desperate situation, you try anything in hopes that it will actually do something for your child. I personally feel the principal investigator of this study needs to be put down a peg or two (remember Peter and I met him at Sloan Kettering), because in the end, scientific research is so limited. It is based on numbers and data, all of which can be manipulated, and more importantly it doesn't take into account the subtle differences between cancer patients and their disease. Clearly Mattie's form of osteosarcoma doesn't compare to others, and in the end, Mattie was really being treated using the standard of care designed for a patient with a single osteosarcoma lesion. Mattie had multiple sites to begin with, but there is no protocol to follow for a case like his. From my perspective, the practice of medicine has a long way to go, and I think it is unacceptable that we still don't have effective treatments for certain forms of cancer. This is usually Peter's platform, which he is so good at advocating for, but when you are losing your child to a disease, you can't help but be bitter at a system which has failed you and your child.

Peter and I took Mattie to the Lombardi clinic, since we had a meeting with his doctors at 2:30pm. When Mattie got to clinic, Jocelyn and her two sisters, Hannah and Meghan were there. Mattie has a special bond with Jocelyn (a young adult with osteosarcoma), and they jumped into a project together. Jenny and Jessie (Mattie's art therapists) were also very engaged with Mattie, and what gave me peace today was that Mattie had a great day in clinic. He was like the life of the party. I could hear him through the door of the meeting room. When we arrived at the clinic, Jessie told me that they wanted to support Peter and I in any way today during the meeting. I told her, not to worry about Peter and I. What I did want them to worry about was making this a happy day for Mattie. When you see the pictures that Jenny and Jessie took, you will see they far exceeded my expectations. He had a great day!

Mattie was also visited by three of his HEM/ONC nurses from the PICU today. Thank you Katie, Sarah Marshall, and Kathleen for coming down to hug us and to visit with Mattie. Your support means a great deal to us. Dr. Shad told me today that half of the PICU was crying over the news about Mattie. Mattie has a way of working his way into your heart! I know that well. Mattie teamed up with Jocelyn and designed a boat, and Jocelyn's sisters were the opposing team. I hear they had a great time designing and racing. Naturally you know who won the race?! Mattie was thrilled to win a prize. Thanks Jenny and Jessie! You brought a smile to his face today, and he relived the excitement for us in the car ride home.

Left: The team is working on boat designs. Going from left to right is Meghan, Hannah, Mattie, and Katie (one of our wonderful HEM/ONC nurses)

Right: The boat designing continues! Featured from left to right is Meghan, Hannah, Mattie, and Jocelyn.

Left: The dynamic duo! Jocelyn and Mattie!

Right: Mattie standing and VERY excited about the pending race! Mattie was excited about the new big bin for water that the clinic acquired.

Left: Jocelyn giving a little wind help to the Team Mattie boat!

Right: Mattie and Jocelyn's boat!

Left: The proud winners of today's race!

Right: Mattie and Roxanne (his favorite nurse in the Lombardi clinic). Mattie is holding up his prize for winning the race!

Left: Peter and I got back from our meeting with a Cyberknife specialist, and Mattie grabbed us to show us his prize. Peter and I were in shock with everything discussed today, and you can probably see this in our faces. Sitting on the floor next to Mattie is Kathleen (one of our fabulous HEM/ONC nurses from the PICU).

While Mattie was having a great time, Peter and I were having a heart wrenching conversation with Dr. Synder, Mattie's oncologist, and Dr. Shad, the Director of the Lombardi Pediatric Clinic. Dr. Synder was clearly heart broken today, and cried with us. I think all of Mattie's doctors are stunned HOW FAST this cancer came back and came back with a vengeance. In fact, Dr. Shad told me that Dr. Chahine (Mattie's lung surgeon) was truly upset about yesterday's news, since only two months ago he removed every lesion possible from Mattie's lungs. I have no doubt he did an excellent job. But Mattie's body had other plans. Dr. Synder presented Peter and I with various options to consider. All palliative care, meaning care to help keep him comfortable and without much pain, but certainly no options are left for a cure. So here was what was presented: 1) we could do nothing and let the disease take its course. If we select this option, with the level of aggression of the tumors, Mattie will most likely have significant pain by next week, and would only have a few weeks to live, 2) we could give him a different form of chemotherapy, however, this chemo would hopefully shrink or kill off the tumor, which sounds good in theory. But remember this isn't for a cure, the only true way to cure osteo is to surgically remove it. This is NO LONGER an option for Mattie because he has SO many tumors in his liver, lungs (over 20 in the right lobe alone), and behind the rib cage (a huge tumor over 2cm in size). So if we gave him chemo, he would become neutropenic, lose his hair, have nausea, and all the other risks associated with chemo. So why bother with this option? It doesn't provide a cure, and is only going to make him uncomfortable and prolong the inevitable. 3) The third option is to treat the liver and tumor behind the rib cage with radiation, cyberknife to be specific. So we met with the chief of the cyberknife department at Georgetown today. There are no adverse side effects to this treatment, and it would target the tumors, and hopefully shrink them or kill them off. Which would clearly help manage Mattie's pain. At the moment, the pain is becoming more intense for Mattie, and Peter and I have him on a Fentanyl transdermal patch and morphine. We are concerned about pain, and if Cyberknife can buy us more time, and give Mattie more comfort and a decent quality of life, then this seems like the best option. 4) The last option presented was going to MD Anderson in Texas and meet with a surgeon who specializes in removing tumors from the liver. That is all well and wonderful, but again what for? The cancer has spread to other inoperable areas, so to me doing surgery on Mattie without the promise of a cure is cruel.

Peter and I decided to treat Mattie with Cyberknife and this will begin next week. We have no time to lose. We have to shrink the tumors right away, before we lose the fight against pain. Before Mattie can undergo this procedure though, he will need to have all the fluid that has accumulated in his lungs removed. Because Mattie has tumors throughout his lungs, they are causing fluid to build up, and in fact his lungs right now are 1/3 filled with fluid, and his doctors have asked us to watch for shortness of breath. If this happens, he will need to be admitted for this procedure right away, and this involves putting a needle through his chest cavity to remove the fluid. I don't like the wait and see method at all. So I said NO, I am not waiting for him to have shortness of breath, I want the fluid out ASAP. So we are scheduling that for Monday, and it is my hope that Dr. Chahine can do this procedure for Mattie. I have embraced Dr. Chahine as part of our treatment team, and feel more at peace with him performing such a procedure. So in summary, Mattie is being admitted to the PICU on Monday. He will spend all of next week in the hospital. During that time, he will get the fluid removed from his lungs, they will start him on TPN (which stands for total parenteral nutrition). This nutrition will be IV, and go through Mattie's central line. The nutrition will contain vitamins, proteins, fats, and electrolytes. I have been opposed to this for quite some time, but I realize this is crucial now to Mattie's health, especially since he is unable to intake things by mouth. In addition, Mattie will need to undergo several CT guided procedures to have these "gold seeds" placed by his liver and rib cage. Apparently these gold seeds guide the robotic cyberknife machine to deliver concentrated forms of radiation to the appropriate sites. Mattie will then undergo three days worth of radiation. So this is the aggressive plan for next week. Mind you we have elected that Mattie be sedated for all Cyberknife procedures, since it involves a machine, sitting still for an hour, and without my presence.

Dr. Synder and Dr. Shad also spoke with Peter and I about hospice versus palliative care within the hospital. Hospice of course involves pain management and dying within your own home, and palliative care in the hospital means living within the PICU, and getting treated for pain and dying there instead. Peter and I are all over the place with this issue. I am torn. I love the HEM/ONC nurses, and I know they could provide us not only with excellent care, compassion, and support, but I also fear that Mattie won't be surrounded by his things and his cat in his last days on this earth. It is a very difficult decision, of which I am not ready to make, nor do I wish I had to make it.

After our visit to the clinic, we then took Mattie to the Lego store. Peter and I both felt like walking zombies, but we know Legos bring Mattie great joy and comfort. Here is the only positive thing in parenting a child with a terminal illness, the typical rules and boundaries that you have to set up to raise a responsible and morally minded child, NO LONGER apply. I can spoil him with whatever his heart desires, and not feel a bit guilty about that. That is where the positives end, though I am still Mattie's parent, and will always be, I am now foremost his friend and confidante. Pending death takes relationships to a whole other level of depth and dimension. On the ride out to the Lego store, I sat with Mattie in the back seat. At one point he grabbed my hand and told me that I promised him I would never leave him, and yet I did. I just looked at him dumbfounded. He then reminded me that last week at the ABBA concert, I went down closer to the stage with Abigail and left him alone. Certainly not alone, he was with Peter and Ann. But in his mind I abandoned him. He asked me never to do that again. Again, if Mattie was a healthy child, I would have to explain that this was a ridiculous request, but now, I certainly don't! He told me he loved me and always wanted to be with me. I told this story to Ann tonight, and she seemed floored by this conversation. I did not think about it this way, but perhaps she is right and that on some level Mattie feels that something is going on with his body, and he is telling me in his own way he is scared, and doesn't want to leave me. Needless to say, Mattie's tenderness, captured my heart tonight, and as Peter says all the time, how on earth are we going to recover from this devastation? I don't know! I really don't know. Last night, I told Ann, that without Mattie my purpose and meaning in life is gone. Ann responded back by saying that this wasn't true. That my life alone is very valuable and my presence is needed not only by Peter but by all those who touch my life. I told her she may need to remind me of this on a consistent basis, because right now, Mattie is my life, and I can't picture a life without him. I can't picture a life without being his parent, and a life where I can't see him grow up, and be a part of his life.

This evening Mattie was VERY busy. He built one of his Lego acquisitions. It is a cargo plane. I snapped a picture of Mattie with the plane. In addition, Mattie had Peter set up a HUGE camping tent in our living room. I have now lost sight of both my living and dining rooms! They are camping out tonight inside the tent, IV pole and all! I went down at 12:30am, to visit with them, because Mattie wasn't going to go to bed without chatting with me. In fact, Mattie wanted me to lie next to him for several minutes, and I have noticed that he really needs more emotional connections lately. Any case, he looks very cozy in this tent, and he has already established that I am sleeping in the tent with him tomorrow night! Lucky me!

We want to thank the Ferris family for providing us with a wonderful dinner last night and the McSlarrow family for a lovely and generous dinner tonight. We value your support and love!

I do want to acknowledge ALL the amazing e-mails I received today. I must have received at least 100 personal e-mails. They all mean a great deal to me. Some of you even e-mailed me at 2am. Normally I would have been up, but the beauty of Tylenol PM, helped me to sleep last night. I wish I could post every e-mail I received, but I would like to share seven messages with you tonight. The first message is from my friend, Charlie. Charlie wrote, "I so hoped you and Peter would have more time with Mattie. I really am at a loss for words and so all I can say is that I sit in sorrow and silence with you at this time. I've forwarded the news on to those I know who have been praying daily for Mattie as I know they will want to continue to pray for all of you now. As always, you are his mom and you knew even without the tests what was happening. Give yourself some time to absorb the news and shift gears; there is no formula for sorrow. Vicki and Peter, I grieve with thee."

The second message is from a fellow RCC parent and friend. Mark wrote, "I am up late tonight and just read your blog posting. Grace is asleep and I am trying to decide if I should wake her to have her read your very sad news. Our hearts have ached for both of you and Mattie throughout this entire horrible ordeal. You have fought so valiantly for your son's life and every decision you have made along the way were the only decisions you could have made -- you gave your son every chance that God and humanity could provide and you had another year of life with him. It has been a year filled, yes, with pain and sadness ... but also with much love and beauty and memories and laughter and achievements and milestones and teaching and learning and hope and strength. You have brought countless people together into a shared journey, united by the spirit and perseverance of a small boy who has taught us all something very big -- he has taught us how to live. We will stay with you through the rest of this journey and beyond. Mattie will forever be the sun rising in a brilliant splash of yellow, red and orange. Nothing changes today. We are with you and we are with him. Always. With the greatest respect, friendship, admiration, and awe."

The third message is from a fellow RCC parent and friend. Grace wrote, "There simply aren't adequate words, but I must try. Never question how you chose to fight this disease. From the start you have had the best gut instinct I've ever seen; know you did everything right. How could you not attack this nasty beast of a disease as aggressively as you did? You would always regret it and think, but what if we didn't listen to Sloan and tried the aggressive treatment anyway? I know you worry about what you put Mattie through, but think of it this way--regardless of what Mattie went through, your blog was always painted with the most beautiful photos of Mattie and others just beaming with joy. You and Mattie impossibly brought such happiness to the halls of a children's oncology ward. I will never forget the Abba songs and resulting smiles and so many other similar happy images. How incredible that you made Mattie so happy during this past year. And it's all due to your efforts to surround him with so many loving people. You rallied the forces to accomplish anything Mattie needed. Your gut always led to all the right tests being done and getting all the support he needed. You did everything right. Everything. And know that your efforts DID change the course of Mattie's future. Your beautiful little boy's life was extended and he had more HAPPY days on this earth because of you. I sit with a pit in my stomach as I type. I don't think I can sleep tonight, so please feel free to call me anytime tonight or e-mail if you need to just know someone else is awake and thinking of you. In continuing your valiant efforts to make Mattie happy, can I contact the Great Zucchini to have him stop by? He would happily stop by multiple times, and I know he wouldn't fail to bring a smile to Mattie's face. And would you be interested in having someone contact the Make A Wish foundation? What would Mattie's wildest dream be? We can make it happen.We love you so much and are so incredibly sorrowful. There are many heavy hearts around the world today that ache along with you and would do anything if they could only make things better. Please know that we are with you tonight and always."

The fourth message is from a fellow RCC parent and friend. Ashley wrote, "I sit in silence and stillness after reading the blog from yesterday, Vicki. Ifeel the news in my interior, circulating about as the past year runs through my mind and the weeks and months to come are envisioned in my imagination. The first image to come to me after some time in silence was from ecclesiastes in chapter four when the writer envisions a threefold cord. two are better than one, but two wrapped together with a third cord are hard to be broken. I see this several ways: you and Peter are each one cord, being held tightly together by a third cord, or the Holy (my primary image of God right now). or....the third cord can be a combination of several things. so you and Peter are each a cord, and the third cord is a combination of Mattie and the Holy, binding you all together like a braid and, even in death and dying, impossible to be broken. Vicki and Peter: we walk this road of death, dying and the end of Mattie's lifetime with you. The community created is also part of that third cord, impossible to be broken, sustained by love and compassion in your brokeness and pain beyond words. I know you have your catholic priests but also know you have a protestant pastor, waiting in the wings if needed to create ritual, sustain memory, and to witness Mattie's Great Labor with life and dignity bound together with that three fold cord."

The fifth message if from one of my mentors and former chair of the counseling department at the George Washington University. Sylvia wrote, "There are no words big enough to capture this devastating news & its effects. You are all in my prayers. When you go to that "what if" place, know that you have the resources to not stay there. Even one extra day with Mattie is worth your good decisions on his behalf. The blog and its pictures of Mattie's joys show clearly that there many days this past year when along with the pain there was joy and love. Those experiences will always be there as you walk this pathway with each other."

The sixth message is from the transporters from the Dept of Defense. Thanks Charlie for sharing Mattie's story with the transporters. Response from the 150 plus members on the Transporter email list today regarding Mattie's recurrence: "This one hurts. I can only say that Heaven needs Mattie and in the words of Charles Erwin, Mattie will be welcome and there will be a vast improvement. My heart goes out to the family and all those that stood by Mattie." ~ Sandy and the Transporters of the Dept of Defense

The final message is from a colleague and friend. Susan H. wrote, "I am sitting here after having just read last night's blog entry. I had an appointment. out of town this morning so didn't get it read before I left. My computer keyboard is now wet with tears. I am so very sorry that you have received this news. Throughout these months I have tried picturing Mattie in adulthood as he tells the story of what he overcame several years before. I was SO hoping that would be the outcome. I'm over a thousand miles away but my heart is right there with you. Mattie, and your blog have been positively infectious in drawing people into your lives, to educate us, to surround you with love and hope. The love continues, the hope changes to focus on moving forward, and emotional healing, as well as the continued connectedness between the three of you that seems so powerful and memorable."

Wednesday, August 5, 2009

Wednesday, August 5, 2009 - Today our world changed forever!

Quote of the day: "Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keep what is worth keeping, and with a breath of kindness blow the rest away." ~ Dinah Craik

Tonight, I write with a heavy heart to let you know that Mattie's fight is coming to an end. We learned today, after I insisted on an ultrasound and an abdominal CT scan, that Mattie's cancer has spread back to his lungs, as well as his liver and stomach. It is everywhere! This is a fast moving disease in Mattie, because you will remember he had a sternotomy in June, and every known osteo lung tumor was removed at that point. Almost two months later, there are tumors everywhere.

Mattie has been complaining of stomach pain since May. In May, we started running tests for an ulcer, but as many of you know, we did not get the test results back until last week. Part of me wishes we did an ultrasound and abdominal CT scan in May, but then again, that most likely wouldn't have changed the outcome of things. One thing is certain though, I know my son. I stuck to my convictions that something medically was wrong with Mattie and that this was the explanation for him not eating and drinking. This wasn't a psychological issue, and I knew this in my heart of hearts. Clearly today, medical science confirmed what a mother's love knew all along. I just wish medical doctors would listen to us more often! When I called the hospital this morning, they told me they couldn't fit Mattie in today for testing, so I booked an ultrasound for Friday. Then Ann called me and she asked me in a nice way, what I was doing about this scheduling issue? I am not sure if I gave up the will to fight or was just exhausted, since I would have challenged this testing delay in the past. But the more I thought about what Ann was saying, the more I realized I had to mobilize forces and advocate once again to get this testing done today. Thank you Ann for the courage and support to do the right thing.

I also want to acknowledge Linda (Mattie's childlife specialist) today. She helped me every step of the way, getting the ultrasound and CT scans done, quickly and timely. After all I did not have appointments for either, we were add ons. But Linda can make anything happen at the hospital, and I can't say enough about how much she means to us.

Today, I fought every step of the way to make sure Mattie not only received an ultrasound, but a CT scan. Mattie's doctors did not feel he needed both, of course, until a large mass was spotted in the ultrasound. So in essence Mattie went through an ultrasound (smoothly thanks to Linda, and his DS player - something he never plays with, but it caught his attention today) first. I started getting very edgy during the ultrasound, because the tech asked Linda what type of cancer Mattie had. I thought that was a telling question to ask during the test and this prompted my immediate attention and concern. I couldn't shake that question all afternoon. After the ultrasound, Mattie and I sat outside the hospital in the rose garden and had lunch. Normally Mattie doesn't want to sit still, but today was different. He had me telling stories about his baby years. I retold the story of how he was born, how he learned to sleep, walk, and talk. None of these things came easy to Mattie, but he learned them, and through these struggles, Mattie and I became very close. When my mom describes Mattie as an extension of me, she isn't kidding! This is a fair assessment! The conversation in the garden today was so special, loving, and priceless moment between us, which I will never forget. Unfortunately this moment, was disturbed when the doctor called to tell me she saw a mass in Mattie's liver, and would need to do a CT scan.

I snapped a picture of Mattie in the gardens today and at physical therapy. He had an abbreviated session, but did get up and walked, which is amazing considering he was in pain.

Mattie seemed concerned that he had to take an unscheduled CT scan later this afternoon. He had to drink a contract dye, and then also had to have one injected through his central line. The prospect of the injected dye sent Mattie into a state of anxiety. He did not want to do the test, and it took a great deal of effort and calmness to talk him through the process. Peter left work today, so he was with me, and Linda also came to provide assistance. Linda is great at managing the techs, who clearly need managing. This tech had no empathy or understanding for what Mattie has and continues to go through. She was in fact annoyed that he wasn't complying with her instructions. Linda removed the tech from the room, and I basically had to give Mattie a pep talk so that he would tolerate the test. I told him I knew he was scared, that he did not want to go through the CT scan, but I had confidence he could do it. I told him there is nothing he can't do if he puts his mind to it. He eventually settled down and the test was completed.

When we got home, the doctor called us with the news. She actually did not want to tell me over the phone, but there was NO way I was going to wait until tomorrow. Needless to say, Peter and I are devastated. As you know, I follow the story of Sammie, a young teen with osteosarcoma in California. She too is dying from this hateful disease, and I always marvel how her family is managing and supporting Sammie. I always feared that Mattie was going to die because of the severity of his illness, but to some extent I lived with some hope. Today the hope within me is dead. I do not know how Peter and I will handle Mattie's disease progression and pain, nor do I know how you live without your child? It goes against the laws of nature to see your child suffer and die before you. Part of me is in shock and not in touch with my emotions yet. Which makes writing tonight very difficult.

Peter and I spent the evening sitting in silence and occasionally walking around. Caring for Mattie tonight was truly challenging, since our minds and hearts are racing. Mattie doesn't know about his disease progression. I haven't figured out how to proceed with that, so for now, I would appreciate this not be discussed around Mattie. After all, he gave the fight of his life this year, and now was supposed to be the recovery time. In fact, today, he told me he misses walking, and wants to walk again. This whole day is heart breaking, and I can't get over all we put Mattie through just to get to the point which we most feared. The words of Sloan Kettering come back to haunt me, as they always will. Sloan felt that Mattie's disease should NOT be aggressively treated since he was most likely going to die. Funny, how I thought that perhaps all our efforts could change the course of Mattie's future. What I have learned through all of this is we humans control very little. We only delude ourselves into this false complacency.

Ann came over tonight to play with Mattie, so that Peter and I could just let this news be absorbed. Despite the fact that Peter and I feel like we have been hit by a truck, Mattie had a wonderful time with Ann. He loves his water play (in fact I found him washing one of our Victrola records), and then he and Ann built a barrier to keep Peter and I out. I know Mattie's news hit Ann hard as well, since she has been my force of Hope throughout the entire year. To some extent it is hard to admit or accept defeat, and we have to pause and figure out what are the next steps in Mattie's care. Peter and I can't thank Ann enough for sitting in this with us, and accepting us in whatever state she found us in tonight.

Peter is coming with me tomorrow to the hospital, so we can discuss options of care, and how long Mattie has to live. I just can't believe I am even writing this.

I end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Unfortunately, it really doesn't take much to throw many adults off of a sleep schedule and once that happens it is very difficult to resume any sort of normal rhythm. I know it is awful to lie awake in the small hours of the night and think about the "what ifs." All the advice in the world seems to pale in contrast to the very stark issues you are facing with Mattie right now. I have to say that I agree with you that it is very possible that Mattie has a physical reason for his abdominal pain and refusal to eat. I hope that the problem can be found and resolved quickly so that Mattie can begin to enjoy eating and gain strength once again. I realize that in addition to this being a major obstacle to Mattie's recovery physically, it is also an emotional issue for you as it would be for any of us who are moms. All mothers want to provide good nourishment for their children, to be unable to do so is a tremendous problem and can make you feel as if your mothering skills are inadequate. This could not be further from the truth; Mattie is currently surviving on your love and emotional strength; I truly don't know how he's come this far in recovery with these digestive problems plaguing him. I pray the doctors find the source of the difficulty quickly and that the answer is one that is easy to implement and gives both you and Mattie quick relief so that he can begin to eat and grow in strength."

The second message is from my mom. My mom wrote, "I have no doubt that you are suffering from some effects of PTSD as I feel afflicted by the same syndrome every time I read the blog and vicariously experience the HELL you are living through. It is very easy to offer armchair advice from a safe distance away from the situation you contend with daily, but living "in the trenches" as you are, there is no clear pathway to the goal of restoring Mattie back to good health that has been tried before and proven to work.. Just when you think you have a workable plan to restore Mattie back to good health, new complications arise and must be immediately addressed. You discover through your experiences that there are unintended consequences in the original treatment plan that can not be controlled and that are serious enough to interrupt the functioning of the body''s healthy organs and cause chronic long term problems. Suddenly the targets that once seemed so reachable require modification or must be delayed to attend to other more immediate health threats . Since you have NO control over medical events or any of the side effects of chemo and drugs, you are at the mercy of a landscape that can change unexpectedly and a roadmap that remains forever elusive. It would be wonderful if every step was predictable and easy to follow as ABC but that is not the reality of cancer. You have done an outstanding job of staying on top of things no matter how treacherous the pathway ahead. So remain alert, avoid the pitfalls and take all the necessary detours you must till you once again find the magical " yellow brick road" that will give Mattie the best possible chance to be healthy and lead a normal life., If anyone deserves to be like Dorothy in "The Wizard Of Oz" it's you!"

Tuesday, August 4, 2009

Tuesday, August 4, 2009

Quote of the day: "Things can fall apart, or threaten to, for many reasons, and then there's got to be a leap of faith. Ultimately, when you're at the edge, you have to go forward or backward; if you go forward, you have to jump together." ~ Yo-Yo Ma

As I suspected last night was a hard night. Not that any of our nights are easy, but Mattie's stomach pain was out of control. Tylenol did not work, Kytril (his anti-emetic) did nothing, and forget Prevacid! As the night wore on, I saw that the only relief Mattie was going to get was to break down and give him Morphine. I was so thrilled to have all these pain medications behind us, but somehow, this wasn't meant to be. After about 30 minutes post-morphine consumption, Mattie started to slow down. But he was highly anxious, so I decided to lie next to him and rub his head and arm, until he finally shut off for the night. However, after a four hour ordeal of crying and screaming in pain, I was so worn out, yet so strung out I couldn't sleep! Prior to Mattie's illness, I was the best sleeper, now, I am a walking case study. I can't fall asleep, and even if I am asleep, my body is naturally programmed to wake up every two hours. I thank the PICU very much for this new and unhealthy sleep pattern. I remember Mattie's psychiatrist telling me there is a high correlation between children with cancer, and their parents who develop PTSD. I don't have PTSD, and neither does Peter, but I can see definite aspects of it developing in myself. Being on heightened alert, with constant memories of the tortures of surgery and chemotherapy on your child, are indeed hard things for a parent to live through and survive. After Mattie went to bed, I sat in his room, in the dark, and I couldn't fall asleep mostly because that is when my mind goes into over drive. Fortunately for me, Ann and Alison (our manager of the Mattie fund, and our communications coordinator) e-mailed me about things, which kept me engaged, and frankly I couldn't make it this year without technology. It is through text messages and e-mails, that I keep my sanity. Every e-mail I receive and supportive comment means a great deal to me during these lonely and difficult times.

I know some of you are e-mailing me with concerns about my health. I appreciate your e-mails and I want you to know that Alison and Ann are working with me to find more steady childcare support. However, finding the right person and match for Mattie is of utmost importance. Though I embrace the help, a part of me can't help but feel as if I am failing Mattie by not being able to continue my 24/7 routine. I assure you Alison is helping me face this reality and reframe the situation, which I appreciate. I am thankful that Alison is taking this on for me now, because I neither have the energy or where with all to deal with interviews of potential people. Thank you Alison!

I went through the day today, very concerned about Mattie's stomach. Mattie is virtually eating nothing. Not just today but for the past few days. Between not eating, and his intense pains, I couldn't stand the stress. I left Mattie's doctor several messages today and we eventually connected in the afternoon. Mattie had his therapy appointment with Dr. Biel, his psychiatrist. Mattie looks forward to these meetings, but I could tell Mattie was annoyed at me when I told Dr. Biel about some of my social concerns regarding Mattie. Dr. Biel always meets with Mattie and I five minutes before his session starts. Today, Mattie couldn't wait for me to leave the room, and he found the concerns I was expressing highly inflammatory. Dr. Biel will be meeting with Peter and I alone next week to discuss Mattie's progress and our next steps.

After his therapy session, Mattie started to complain of pain, was getting anxious about the pain becoming out of control, and insisted on going home. Mind you Mattie had a physical therapy appointment this afternoon but he refused to go. I could have forced him, but I could see he was in no physical or mental state of mind for a productive session. I was so overwrought by all of this, I called Peter. Not that I wanted him to say anything, I just landed ranting on the phone. Basically I was more determined than ever that get to the bottom of this stomach issue, because I can't believe the not eating in Mattie's case is psychological. I feel he has a true physical issue going on.

Later this afternoon, Dr. Synder, Mattie's oncologist, called me. We spoke for over 30 minutes. She shares my concerns, and is taking an aggressive stance about this. Tomorrow I will call to schedule an abdominal ultrasound for Mattie. If this is inconclusive, we will arrange for an abdominal CT scan. In addition, Dr. Synder is having us consult with a GI physician, who will determine if a potential endoscopy is necessary. Dr. Synder doesn't feel as if Mattie has an ulcer, based on where the pain seems to be radiating from. Mattie's pain is on the right side, near his rib cage. Dr. Synder said that if he had an ulcer, he would feel it more on his left side, where the stomach is. She also feels that we need to rule out issues with Mattie's liver and gall bladder. Though all of this is down right scary, Dr. Synder told me that if Mattie doesn't start eating soon, he will be placed on a feeding tube. She asked me if it made sense to tell Mattie this. I told her I believe being honest with Mattie, and I stick to that conviction, however, I told her that I don't think this potential threat will inspire Mattie to eat. I told her that I as a parent, can't force Mattie to eat when I believe something is physically wrong with him. If all the testing proves to me that nothing is wrong, then I will deal with the psychological issues around not eating. But for now, I am not taking this stance, because in my heart of hearts I feel something is medically wrong!

While I was having this conversation with Dr. Synder, Marisa arrived to help me with Mattie. This was helpful, because typically if it were just Mattie and I alone, I couldn't have such a lengthy phone call. Dr. Synder did say that she is sorry I am dealing with this now, because for most cancer patients who are three months post-chemo, things should be on the upswing. I haven't experienced that high yet and frankly wonder if I ever will. I did appreciate Dr. Synder acknowledging the emotional side of this, which is one of the reasons I find her so unique to her profession.

Needless to say, today's stress over Mattie's stomach weighs heavy on our minds. At one point today, Ann called me, since she had text messaged me throughout the day over this issue, and asked how she could help me. I am not sure what you say about someone who is balancing so much already, but would drop things to offer help. The frustrating thing about Mattie's condition is HOW DO YOU HELP? This is something Ann and I discuss often. We are both proactive people, but when dealing with cancer, there are many times where there is nothing you can do, and the only thing that helps is to stop and talk it through. Peter and I thank God each day that Ann took on the role as our Team Mattie coordinator, and through all this coordination arose a beautiful friendship based on mutual respect and support.

While Marisa was with Mattie this afternoon, I went to have a pedicure. It was lovely to sit for a while. I brought a book to read, but I couldn't even focus on the words. So instead I just sat there and watched people. One of my favorite past times! I then went to visit Ann's dad for a bit tonight in his rehabilitation facility. I think he was surprised to see me since I normally only visit on a weekend, but we had a lovely conversation together, and he told me that it was just impossible not to like me. That comment touched my heart!

We want to thank the Cavanaugh's for a wonderful home cooked dinner tonight. We loved the fish and the salad, and loved your blueberry cobbler! Thank you for your continued support.

I would like to end tonight's posting with two messages. The first one is from my friend, Charlie. Charlie wrote, "Well, Monday was definitely why they coined the phrase, "two steps forward, one step back." Clearly not one of Mattie's best days. I am sure it is very difficult for you to constantly be the "ambassador" of Mattie's life when you want so much for him to be polite and social with others. I am sure it hurts when he shuts down and you feel others may be judging you for his behavior. Those of us who know you, know what you've gone through this past year; we know how far Mattie has come and how you've given your life and your heart so that he could get to this point. Those who don't know but are willing to judge, well, they should walk a mile in the shoes of a parent like yourself and then see how they feel. I bet that they would be far more compassionate and forgiving after that. I pray you are able to get to the bottom of Mattie's stomach and eating problems. It is difficult for a child (or anyone) to gain strength without eating and I would hate to see Mattie put on tube feedings or any other sort of medical intervention for feeding."

The second message is from my mom. My mom wrote, "Your advocacy for Mattie has created a host of admirers who read the blog and marvel at the skill with which you hone in on the medical issues that remain troubling because they are vaguely understood and border on the brink of the experimental in medical knowledge. Nonetheless, these issues require solutions for Mattie to lead a normal life. Your quest for answers and solutions is a hallmark of the passion and devotion you have for Mattie. Anyone who knows you knows that you are focused and persistent and that if Mattie is a strong willed boy, he has certainly inherited that trait from his mother. His basic nature will propel him forward but at a price. He must understand WHY he is required to do something before you can engage him wholeheartedly to participate and embrace what he is told to do. if anyone can reach him it is you, as you have reached so many others, giving them a deeper understanding of everyday matters that daily affect their lives. Your teaching skills give all of us many teachable moments so never doubt the power of your shared perspective on life. However, the cost of remaining vigilant and ever watchful in caring for Mattie is high but very necessary given that Mattie's recovery is at the crossroads and although the signs are encouraging because of his feistiness and drive to live, this is a dangerous battle with twists and turns that remain unpredictable and hard to accept. Remember, even though he sometimes resists cooperating in the process of rehabilitation that Mattie's stubbornness may ultimately be what drives his recovery! He has a better track record for dealing with the reality of his situation than most adults facing problems of their own. With respect to his care and treatment over the course of the last year, you must always remember your value and stay resilient, strong and proactive. That is what you do best! Remember too, that you are the 5 star General in this battle for without you in the leadership role, the enemy has the upper hand! With you in command, the enemy can and will be defeated!"