Sunday, September 6, 2009

Sunday, September 6, 2009

Tonight's Mattie creation features one of his transformed cardboard boxes. Mattie made a house for the miniature Scooby Doo that he received from his magic friend, Bob Weiman. Notice that Scooby Doo has his own model magic couch, food bowl, and loft with a bed. Mattie was very fond of this miniature Scooby, and tied it to his wheelchair, where you can still find it today.

From the Night Prayer in the New Zealand Book of Common Prayer
(Thanks Charlie!)



Dear Life Giver,
Watch over those who wake or watch or weep tonight,
And give your angels charge over those who sleep
Tend your sick ones, rest your afflicted ones and all,
For your love's sake.
Pain bearer, we go into this night confident
That the dawn will break tomorrow;
Grant that when we come to die,
We may go gladly and in hope,
Confident of life.

Peter and I want to thank Tamra for another wonderful breakfast, and your offer to bring us breakfast each day while we are at the hospital! What do you say about such a lovely offer and friendship?! Thank you Tamra for your incredible support.

Saturday night was a killer. Mattie was up and very agitated from 9pm until 5am. Peter and I were working hard during that time, and literally were bolusing Mattie with IV dilaudid every 15 minutes. Clearly this was telling us that his fluid in his abdomen was accumulating. It is interesting how Mattie is literally passed out during the day but as the evening approaches he becomes more conscious of his environment. He isn't exactly awake, he is in and out of consciousness. However, at 4am, he asked me to tell him a story. Over the course of the last few months, I have created a whole story series of a young girl, named Goldie, and her friend, Mouse. Goldie and Mouse, clearly are like night and day, yet they have respect, fun, loyalty, and great understanding for each other. Mattie usually asks to hear these stories at night, and he becomes engaged and calm. Peter refers to me as the "Mommy pain killer." So I did tell Mattie a story and then by 5am, I couldn't stand up another minute. So I jumped into Mattie's bed with him and slept at the foot of his bed. It was a comedy show though, because Mattie is now on an air inflated bed, to prevent bed sores. But this bed doesn't like balancing myself and Mattie. As I was lying down, the bed started to deflate on the portion that I was sleeping on, and literally it was like I was sleeping on a metal slab for two hours. None the less, it kept Mattie quiet and calm for two hours, so it was more than worth it in my book.

Peter asked Sarah Marshall, our wonderful HEM/ONC nurse, last night for the CT scan results from Friday. Well I think the results speak volumes to the aggressiveness of Mattie's cancer and the reason for his intense pain near his stomach. Mattie has a tumor in the top of the abdominal cavity that last week measured around 2cm. This week, this tumor is now 6cm in size, and most likely will just continue to grow. I found that incredible growth in one week, and it seems like all resources in Mattie's body are now going into the tiring effort of tumor growth and production. The disease is taking Mattie away from us alittle bit each day, and it is most noticable in his lack of energy, his inability to talk, his pain, and intense fevers (103 degrees!).

At 11:30am, Mattie was wheeled down on his bed to the Interventional Radiology department for the insertion of an abdominal drainage tube. Debbi, our sedation nurse angel, wasn't with us today, and things did not seem to run as smoothly. Debbi knows exactly what is needed and what works for Mattie, and this level of connectiveness puts me at ease. I had the opportunity of meet the attending physician who was going to place the drainage tube into Mattie's abdominal cavity. He started out the informed consent process with me by letting me know that normally such a procedure is not done in children or in people who do not have an infection of the cavity. Mainly because such tubes can cause infections in patients, so why insert a tube if you don't have an infection!? In addition, he told me that during the procedure Mattie could bleed out or they could injure an organ. Lovely! By the time he finished with me, I wanted to simply say.... ARE YOU KIDDING ME?! My son is going to die, and you are performing a procedure to relieve pain, do you think I want to hear about these potential risks?! Definitely NOT! We live risk each and every day. It is this level of insensitivity within the medical community that I find shocking and SO irritating.

While Mattie was under sedation, I had the opportunity to talk with Debbi (our sedation nurse angel) by phone. Debbi reads the blog each day, and she was intrigued by the fact that Mattie did not want to go home, and elected to stay in the PICU. It is a fascinating decision, I agree, especially since Mattie was always a home body. He loved being at home, and doing projects at home. Even during his treatment, he always looked forward to returning home and being surrounded by his things! But I noticed even before we entered the hospital this week, that Mattie was NO longer interested in his "things." Even things that were once super important to him. He wasn't even interested in opening up packages that came in the mail. This caught my attention immediately. Debbi told me that Mattie most likely doesn't want to return home because he doesn't want to die there. That Mattie doesn't want to die at home because he knows this would crush Peter and I. I think living in our current home will always be difficult now because every corner of it will remind me of Mattie, but having him die in my home would be particularly difficult for me. When Debbi shared her thoughts with me, I told her that I honestly hadn't looked at Mattie's actions this way, because I thought that this level of reasoning was far more mature than what I would expect from a seven year old. None the less, as Debbi was talking, something struck me immediately. Mattie has been in the hospital since Tuesday, and is getting sicker and weaker. Yet he isn't asking me a single question. He isn't asking me why we are doing scans or procedures! You need to understand that throughout this year, Mattie played an active role in his treatment and would ask solid questions of us. But now there is NOTHING! No questions. I chalked this up to the simple fact that he is on such high doses of pain medications, so I figured he just was too out of it, to ask questions. However, Mattie does have lucid moments, at like 4am. But even at that hour, he asks me nothing. Debbi's response was, "Vicki, that is because Mattie knows he is dying" and he just doesn't want to talk about it. In a way, I suppose Mattie doesn't want to think about life without Peter and I, nor does he want us to reflect on it. I still have trouble accepting that all of this is going on in Mattie's head, but as Debbi and even Ann told me today, this is MATTIE BROWN! Mattie is capable of anything, and if this is true, then what a remarkable young little boy I have. A little boy that even in the end is worried about his parents and how we will live life without him. I have debated talking to Mattie about what is happening and how to say good-bye. But in all reality, Mattie is making this easy for us, we are following his cues. Saying good-bye can't be about Peter and I, it has to be what is peaceful for Mattie. Perhaps our way of saying good-bye to him, in a way he can accept, is to continue to be physically and emotional present, to advocate for his needs, and to remind him always that we love him and are here for him. Mattie does open his eyes periodically now and then to tell Peter and I that he loves us. He never did this before, so I am beginning to see that Debbi maybe onto something.

The placement of the drainage tube went very well today, and it is working like a charm. So far the tube has removed over a liter of fluid. However, Mattie's body is leaking out more fluid than he is taking in through IVs. This is causing his blood to clot, and Mattie is being given Vitamin K shots to thin the blood, and was also given Fresh Frozen Plasma (Plasma transfusion is indicated in patients with documented coagulation factor deficiencies) transfusion. There was talk of inserting a catheter in Mattie's bladder because he is not urinating very frequently, however, I refused that option tonight because I did not want a catheter placed in Mattie without sedation. Debbi has reminded me, and I am happy she has, that I have a right as a parent to refuse any treatment that will cause pain, and I can demand the use of sedation. That piece of information was very empowering!

While Mattie was sleeping this afternoon and recovering from his procedure, Ann came to visit. She brought us a lovely lunch from a fellow SSSAS mom and friend, Tanja. Thank you Tanja for supporting us throughout this process. Ann also brought Mattie a DVD that was created for him by the SSSAS football team. Thanks Coach Dave! We haven't watched the video yet, but I so appreciate the team's thoughtfulness and kindness.

Peter remained with Mattie, had lunch, and then got a chance to take a brief and overdue nap. Kathleen, Mattie's wonderful HEM/ONC nurse, told me she tried not to enter the room much, so that the boys could sleep! I appreciated that! Meanwhile, I sat outside in the hospital rose garden with Ann. I had lunch, got to feel the sunshine, and a chance to chat and share my thoughts and feelings with a person who has become a very central part of my life. Ann realizes one of my concerns is the need to keep Mattie's memory and spirit alive. So today we talked about establishing a foundation or research center for Osteosarcoma. We also talked about ways to memorialize Mattie for myself. If we decide to cremate Mattie, there is a company that will actually create diamond rings or necklaces from 8 ounces of the ashes. The company can remove the carbon components from the ashes to actually create a diamond. I am sure there are many other special ways to memorialize a loved one, but this one really spoke to me, because nothing is harder or more brilliant than a diamond, and this would always keep Mattie with me. I know other osteo families read this blog, which is why I plan on sharing this link: http://www.lifegem.com/

After I spoke with Ann, I started to try to rationalize that perhaps life was worth living after Mattie's death. My mission is to enlighten others about osteosarcoma, to help families stricken by this horrible disease, and to keep Mattie's spirit and love alive always. Getting me to think beyond Mattie's death isn't easy, nor do I like to go there, but Ann is able to sit there with me, despite what comes out of my mouth.

In the afternoon, I also met up with my parents at the hospital. My parents purchased Mattie something he really wanted. As I clear all of this with Linda, I will fill you in as to what it is, but for now, suffice it to say, when Mattie wakes up periodically he enjoys the sight he is seeing. At this point anything that brings Mattie happiness I love. If you try to take it away from Mattie, you will have to go through me, and I assure you I can be difficult if you mess with Mattie and his happiness. Stay tuned for more details, but my consistent readers can probably already guess what the gift is! I had the opportunity to sit and chat with my parents today, and I guess as I start to process Mattie's illness and pending death, I am moving from intense anger to now more sadness.

We would like to thank the Coopers tonight for a lovely homemade dinner. Christine, I appreciate your e-mail tonight. It meant a great deal to me, and it is hard to accept that our boys won't be in class together or playing again, and part of my own insecurities that I face is how can my friendships remain strong and alive, if Mattie is not part of the equation? After all, through Mattie I met some wonderful moms, but if I am not a mom, and do not have a child to take on a playdate, what happens to these friendships? Though Christine wasn't answering that question tonight in her e-mail (because I did not pose it to her), her e-mail did provide me with peace and comfort.

I would like to share five messages with you tonight. The first message is from my friend, Charlie. Charlie wrote, "So many lessons learned from Mattie's illness that we all wish had never happened. Don't wait to do or say something that is meaningful to you because you never know what will happen next. Trust your instincts. And so many others. I know we would happily trade them all and continue in ignorance if it brought Mattie more painfree time with you. I cannot believe how quickly the disease has taken over and is separating Mattie from those he loves. You and Peter are doing exactly what we all hope someone loves us enough to do; to find the right path as difficult as it is, and ensure that all the doctors and other healthcare providers do what is desired. You will have to advocate and be strong to ensure your wishes are respected but if anyone can do it, you and Peter can. You have so many sad decisions to make in the days ahead. Talk them through with Peter, your spiritual advisor and your parents. There is no right or wrong here, only what feels better to you. My heart goes out to you and I will continue to pray. Prayers for Mattie's peaceful passing and strength for you and Peter are flooding in from around the world. Know you are in many hearts today as Mattie's time here comes to a close and a new door opens for him."



The second message is from one of our family friends. Kathleen wrote, "There are no words good enough, or helpful enough for me to say and you to hear. I want to thank you for sharing Mattie's life with me with all your pictures and blogs. It has meant the world to me. Your incredible gift of strength and courage (which I know now seems fleeting), the love your child has, that you have given to him, you can see this in the pictures. As I walked the bridge yesterday I lifted all of you up to God, and as I was praying I saw a whirlwind of light, surrounding and within you, Peter and Mattie, and then Mattie was brought up and away by this light, and then incredible light and warmth was filling around and within you and Peter, and I believe that this was God showing that he will fill you with all his love for all the love you gave to Mattie. There is an old song by the Moody Blues called Question, this phrase comes to mind."And when you stop and think about it, You won't believe it's true. That all the love you've been giving, Has all been meant for you." Do not give up your heart Vicki, although I imagine you feel as though you do not have one, or it is leaving with your son. You have done all and beyond that a Mother could do, and as others have said to you, you will always be Mattie's mother. I think there has to be a part 2 to this e-mail. Knowing I am a single Mother of one child, I think you know I cannot imagine, but try to imagine what you are going through, I absolutely would be flipping out, dying inside, freaking out, snapping, bargaining and grasping at anything I can to save my child, and anger, well I would be furious, so go ahead be angry beat the crap out of some inanimate object if you can, because you have every right too, then just climb in bed next to your son and hold him as long as you can, that is the Mother in me speaking."

The third message is from my colleague and friend. Nancy wrote, "I don't know where to begin because I have so many feelings bubbling up inside of me. First, it is so clear that Mattie knows what he needs and gratefully shares it with you. A house is only a dwelling. A HOME is where needs are met like comfort, safety, care, spending time together, and LOVE. Unfortunately for your family, your home this last year has been the hospital. I know from our experience with Benjamin's birth last year that the PICU is a special home. I am glad that you have so many ministering angels surrounding all of you. This is the time when gentle souls are needed. I know that you are faced with so many impossible decisions, yet, Peter and you have always, always done the best for Mattie. By your own accounts, from his comments and the smiles on his face through so much of this ordeal, he has achieved such a level of comfort and love in his seven years than many do in a lifetime. He is a true CHAMPION! Each writer that you've listed on the blog speaks the same language, one of love and concern. We are all thinking and loving all of you. You will make these last times for Mattie as comfortable as you can. It is the hardest task to watch your child be in such pain and know that his time on earth is limited. I believe that each reader looks at their children and grandchildren differently because of what you have shared with us. You are so on target when you say the waiting for a treatment to be over is not always an option for something like the Make a Wish Foundation. Peter and you will be advocates of hospitals listening to parents more as they are the ones who understand their children best. My prayers and thoughts are with you today and every day."

The fourth message is from a fellow RCC mom and friend. Mary D. wrote, "In my previous email I said I was not going to bother you with a lot of email traffic, and here I go again. There’s something on my mind that I feel so strongly about. I have no business really even discussing this with you. First of all, it is such a completely uncomfortable subject, secondly, I know I am not family or a close personal friend. I simply want to say that I totally get your feelings about cremation. You definitely want to have Mattie with you at all times, forever, and you will want him buried (or whatever you choose) right along with you and Peter some day. Who is to say that, if you would have Mattie buried in the DC area (assuming that you might), that you and Peter would stay in the DC area forever. I know it is unlikely; however, what if in several years’ time you and Peter decide to move away, decide things are still just too painful, head to the Caribbean or whatever. You will want Mattie with you wherever you go. I, too, am Catholic, and was raised very “old school Catholic.” The idea of cremation seems so foreign to me – yet I know right now in my heart that cremation is what I would choose. You already know that life is so unpredictable. Whatever your ultimate decision is, Mattie will always be with you, and it will be the right decision. It is so unfair, though, that you have to make this decision for your Son."

The final message is from my mom. My mom wrote, "Thank God for Tricia, Sarah Marshall, Kathleen, Katie, Miki, Ellen, Melba, Erin, Janelle, Nguyet, and Debbi! Loved Katrina too!! What a great nurse!!! Jey, the tech superstar too!! Vicki, you are surrounded by love and compassion and in this crisis, that is a great blessing! If you requested a company of angels to minister to Mattie's dying wishes and his medical needs, your prayers have been answered. For these wonderful nurses are indeed angels of mercy that would pass muster with grandma, who had the calling herself for caring for the sick with great tenderness. She would be pleased to know that Mattie is being cared for by the best in his final days and is probably there in spirit to lend them a helping hand. These nurses are tender, loving and caring about every painful contact they make with him whenever they administer medicines or adjust tubes, IVs or monitors and treat him with respect even though he no longer can communicate or challenge them with his insights and sharp questions to get an understanding of "what" they were doing or "Why." Before his latest setback, Mattie was the master of the art of negotiation and took it to a level of sophistication that many adults would find intimidating but his nurses knew the keenness of his intellect and realized early on that if they wanted to get anywhere with Mattie they had to appeal to his reason with a little bit of 6 year old humor tossed in for good measure. After a lively exchange of give and take and a smidgen of compromise tossed in, "his angels" would be given permission to go ahead! But the green light was always conditioned on his satisfaction that he had some control over the process and was able to set the "rules of engagement" before he consented to treatment. Mattie has proven throughout this long and difficult year that he is one amazing fellow who can handle pain, stress, anxiety and extreme discomfort like a seasoned soldier who fights on without any sign of self pity. Right to the end, Mattie makes all of us proud of his spirit, his grit and his feistiness in the face of all the suffering he has endured. We love you Mattie and we always will remember what you have taught us about life!"