Tonight's picture was taken again at Mattie's 7th birthday party. It may be hard to distinguish what he is doing, but basically he is wrapping toilet paper around James (our human sized roach)! Mattie thought this would be a great way to trap the roach and this inspired others to join in. In the picture, Mattie recruited Ann and Tanja to do his legwork, and poor James was such a good sport. It was a hot day, he was in a huge costume, but as you can see great efforts were made to make Mattie happy that day, and everyone was quite successful.
Poem of the day: Reliving by Charlie Brown
When I see where we were
Just one year ago
I think it is no wonder
That I still feel so low
We had to stop treatment
It just wasn't fair
You weren't getting well
Despite our efforts and best care
Pain you had a'plenty
And relief was hard to find
Remembering how awful it was
And how people could be so kind
It sure is hard to relive
Those horrible last few days
And how we got through them at all
I really am amazed
But I would do it again
If I could change the past
And make it less painful for you
As you breathed your last.
It is hard to believe that we are already in September. A month I thought would never get here, mainly because I thought I would have SO much time to prepare for Mattie's first anniversary. But one thing is true, time stops for no one and nothing. Being Labor day and a National Holiday, many of us accept this day as a day off of work, or perhaps the last official day of summer (which of course isn't true!). However, here is a fact about Labor day that I am not sure everyone knows. The fact pertains to why Labor day was created to begin with.......................................
The first Labor Day in the United States was observed on September 5, 1882 in New York City, by the Central Labor Union of New York, the nation's first integrated major trade union. It became a federal holiday in 1894, when, following the deaths of a number of workers at the hands of the U.S. military and U.S. Marshals during the Pullman Strike, President Grover Cleveland put reconciliation with the labor movement as a top political priority. Fearing further conflict, legislation making Labor Day a national holiday was rushed through Congress unanimously and signed into law a mere six days after the end of the strike. The September date originally chosen by the CLU of NY and observed by many of the nation's trade unions for the past several years was selected rather than the more widespread International Workers' Day because Cleveland was concerned that observance of the latter would stir up negative emotions linked to the Haymarket Affair, for which it had been observed to commemorate. All 50 U.S. states have made Labor Day a state holiday.
Peter and I had a very slow and quiet day today. Mainly because I have a cold that is back and won't go away. Peter was quite busy washing windows today. We haven't done this for at least two years, and since we have very big windows in our home, seeing them dirty is rather depressing. Today, Peter brought the sunshine back into our home. As I look out our sliding glass door, it almost seems like there is no glass there, that I am actually just outside. It is a lovely feeling to have the outside in again!
I spent the day doing various things. One of which was working on Foundation paperwork, so it was a productive day of sorts. As the day evolved, Peter and I have been giving great thought on how to spend Wednesday, September 8. We have debated back and forth as to whether to spend the day alone or with others. We finally concluded tonight to do both. It wasn't an easy decision, but Mattie's death affected an entire community, a community who was and continues to be extremely generous, supportive, and loving toward us. It would not seem right to shut out this incredible team during this day of remembrance. A team that was with us every step of this daunting and harrowing journey. So we have decided to have a gathering by Mattie's tree on his school campus Wednesday afternoon. Thankfully I have Ann, Alison, and Junko helping me with this last minute project. I don't do well with last minute decisions, and I most definitely do not like dropping things on people at the last minute, but instead of these women panicking or getting upset with this decision, their only reaction is to mobilize and figure out a way to get this organized. As always I thank the Magic Man, Bob Weiman (Mattie's head of the lower school) for allowing us to have this gathering. I literally emailed him tonight about this event, and within minutes he responded back positively!
Tomorrow is orientation day at Mattie's school. It is a bittersweet day for all of us intertwined with Mattie. Because last year, Mattie died at 7:15am, the morning of orientation day. I would imagine this is a hard day for some of our Mattie supporters, and I can assure you it is a hard day for me. It is another milestone that Mattie will not be able to achieve and be a part of. Naturally I am happy those around me are continuing on with their lives, because they must, but for me in many ways life stopped on September 8, 2009, and Peter and I continue to struggle with how to re-engage with the world around us.
_______________________________________________
September 6, 2009 Blog Posting
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 end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "You really have transformed your deck into a little piece of woodland and I can understand why you would want to do so. The first thing I do each morning is look out at my backyard which opens on the woods and just breathe. It is so calming for me and I am sure that you feel the same way as well. I love what you decided to do with Mattie's tree; the birdhouse and the wind chimes are a lovely balance. You will have to take another picture for us once the leaves fall later in the season. While I am enjoying the weather today I can certainly understand why you would be reluctant for summer to depart; just remember that winter isn't the end, just a break and all those beautiful plants and flowers will be back in force in just six months. I am glad you and Ann got to enjoy your "s'mores" and although Mattie wasn't a chocolate fan, he probably would have enjoyed creating one for you. As I practice today I send you strength and serenity to face what's ahead. As always, I hold you and Peter gently in my thoughts."
The second message is from my friend, Carolyn. Carolyn wrote, "The butterfly wind chimes look just perfect on the tree. I have a vision of the tree growing taller and taller and the chimes and acorn feeder growing higher each year till one day many many years from now passersby will see the tree and the items that adorn it way up in the sky and they will know what a special boy Mattie Brown was."
The third message is from my friend and colleague, Nancy. Nancy wrote, "The garden is beautiful. You must have the perfect exposure for the sun. I can see why you like to eat outside as often as you do and how it was a great play area for Mattie. Mattie's smile as he held the pinata was precious. You understood your son so beautifully and he knew it. I see it each time you share pictures and stories. I know this weekend is even tougher as Wednesday will soon be here. Thanks for sharing Mattie's tree with all of us too. I did see the chimes shimmering in the distance as I looked at the bird feeder. It is a beautiful tree. I hope it will continue to grow taller and bring the children and you great shelter."
YOUR TREE by Nancy Heller Moskowitz
Yesterday, we went to see your tree.
It is young and strong like you used to be.
The bird feeder hangs so high.
It caused us both to utter a sigh
Of contemplation.
It's hard to believe all that took place,
And difficult to imagine you unable to race.
For there still is no reason or rhyme,
To understand why it was your time.
Yet, everyday, we look for visions,
Of butterflies, bugs and such,
All of G-d's creations that you loved so much.
So a butterfly wind chime we did buy,
To help these creatures find somewhere to fly.
A home, a base, a place to nest,
To comfort us as we watch the rest
Of the children return to school.
In just a few days, it will be a year,
Since we did lose our Mattie dear.
We love you!!!!!!!!
No comments:
Post a Comment