Tonight's picture was taken in October of 2008, right before Mattie's first surgery. He went over to his friend Campbell's house for a play date. Mattie and Campbell met each other in kindergarten and were very close buddies. They could play with each other for hours. Not in front of a TV or with video games. They did not need electronics. Instead, they used their imaginations and creativity and it was a wonderful sight to observe and be a part of.
Quote of the day: Memories fade but words hang around forever. ~ Daniel H. Wilson
at his school today. My faithful readers may recall that Mattie's memorial oak tree was donated to the school by Mattie's class of 2020 and planted in May of 2010. However, to our dismay that beautiful oak died last year around this time of year. You may recall I had blog readers voting last Fall for which tree to replace the oak with and the overwhelming number of votes came in for a Yellowwood Tree!
This is a photo of the second memorial tree.... Mattie's Yellowwood Tree. How does it look to you??? Rather bare?!!! Mattie was cremated and sits at home with us, which maybe why this tree is such an important symbol to us. We visit this tree every three months and it is a place we go to, to reflect on Mattie's life.
I leave you tonight with the blog posting from September 6 of 2009. Toward the end of this posting I see I had fears of losing my friends even before Mattie died. I could see that my identity would change, people would perceive me as different, and thereby awkwardness would set in. Now five years later, I can safely say that these fears were well founded and in some cases proved to be true.
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Blog Posting from September 6, 2009:
Saturday night (I am referring to.... September 5, 2009) 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 a little bit each day, and it is most noticeable 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!
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! (Note: I am talking about a FISH (9/6/2014) 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 play date, 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.
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