Mattie Miracle Walk 2023 was a $131,249 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

January 29, 2011

Saturday, January 29, 2011

Saturday, January 29, 2011

Tonight's picture was taken in January of 2009. Peter and I took Mattie to NYC to start his regimen of MTP-PE. Because this is a drug still under investigation, we had to begin the use of it at its research institution of origin, which is Sloan Kettering Memorial Hospital. After that initial administration, Mattie was then, through compassionate release, able to get all remaining infusions at Georgetown University Hospital. Thankfully since Sloan Kettering was NOT one of my favorite places! During our visit to NYC, we took Mattie to the Empire State Building. We lucked out, because the day we ventured there, there were NO crowds, no lines, and we did not have to wait at any point during our visit. As we reached one of the observation floors, a photographer snapped a picture of us. I had almost forgotten about this picture until I came across it tonight while cleaning piles of things near my desk. What this picture reminds me of is the intense battle we fought together as a family, and naturally despite all our efforts, it is a painful reality to accept that Mattie died anyway.

Quote of the day: Grief can take care of itself, but to get the full value of joy must have somebody to divide it with. ~ Mark Twain 


Today was a day filled with many ups and downs, as is typical of our weekends since Mattie died. It would have been easy to avoid reality and the world today, but I eventually got up and Peter and I went for a walk together on Roosevelt Island. The irony is that Peter had already walked the Island earlier in the morning before I even awoke. Along his journey today, you can see the snowy landscape he captured on the Roosevelt Island boardwalk.





Peter was even lucky enough to spot a beautiful cardinal, who cooperated and allowed his picture to be taken. The contrast of his red feathers against the white snow seems to capture the peace and tranquility of a winter morning.












Despite the fact that it was quite cold out, the idea of getting out and walking was very appealing and very needed. There were few people walking on Roosevelt Island, which made this a very calming journey. However, as we were walking on the boardwalk, Peter heard something. I was wearing ear muffs, and heard nothing, but what I couldn't hear, I made up for in sight! Right before us a group of five deer literally jumped right over the boardwalk to get to the other side. You can see the "tail" end of the deer on the left hand side of this picture. He maybe hard to spot, because he blends in beautifully with the bark of the trees. I was stunned at the sight right before us, as was the family in the distance. None of us were moving or making a sound until each of the deer jumped over to their destination. Seeing deer, is a special sight to me, and something that Mattie always loved.

Peter and I went out to lunch together after our walk, and we chatted about all sorts of things. When I got home, I had it in my mind that there were piles around me that just had to go! For the most part since July of 2008, I have let things around me just happen. As everyone knows, if you don't sort through piles and throw things away, chaos ensues. Which is what I would say we live in, it is organized chaos, but it is chaos nonetheless. I have always been a person who saves things, but my saving in the past was neat, organized, and livable. Nothing about our life in our home is manageable anymore. It is hard to get the mental energy necessary to attack this problem, especially when I don't want to touch any of Mattie's things. I assure you, that during each stay Mattie had at the Hospital, he accumulated vast amounts of things, and these things all landed up coming home with us. Try fitting Toys R Us and an endless array of medical supplies in your home, and you will get a feeling for our home environment. Any case, what I decided to do today was to start small, and touch only my belongings. Not Mattie's! Sounds good in theory, but my things and Mattie's are very much intertwined.

I cleaned out piles of things all around my desk. Peter's joke to me tonight was he forgot what my desk actually looked like! In the midst of cleaning, I found the picture I posted tonight at the Empire State Building, and I also found a card my parents sent me in October of 2001. At that point, I was three months pregnant with Mattie. Despite the shock we were all in from September 11, 2001, the notion of our family growing was very exciting and the premise of my parents letter to me was to tell of me of their excitement and to also let us know they were coming to visit. Not by plane, but by train. As all of us can remember, after 9/11, flying was not a comfortable or popular mode of transportation. Needless to say, I kept that card, along with many of the wonderful other things that remind me of Mattie. In fact, on my desk was a pile of cards Mattie's friends wrote to him on his 7th birthday. I kept those too!

After I dealt with my desk, which took hours, I then moved onto the area in Peter's closet where we stored all our hospital clothes. I can no longer look at my clothes I wore at the hospital, and I most certainly would never ever wear them again. In fact, I hate sweatpants material so much now, that I will RARELY wear it. By the time I was finished I compiled four large bags of clothes for Goodwill. I still have Mattie's hospital clothes, and those remain untouched, but I look at today's activity as progress. I have to start somewhere. I am not sure if I will continue this process, but I very much would like some livable parts of my home back, and seeing my things everywhere is simply bothering me, and making me feel further unhappy.

Tonight marks day FIVE of which I will be discussing the article, Good News About Grief: As the nation mourns those killed in Tucson, a new look at the science of loss shows we're more resilient than we thought. This article was featured in Time magazine (January 24, 2011, pp. 42-46) and was written by Ruth Davis Konigsberg.

Just like I have done the previous four nights, I will share with you Konigsberg's writing, and then give my commentary below. Here is the fourth myth presented in Konigsberg's Time magazine article.

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Myth No.4 Grief Never Ends

Our grief culture asserts that it's perfectly normal to get mired for a long time in a state of despair after losing a loved one. Although Kubler-Ross implied an end point by identifying acceptance as the fifth and final stage, she also concluded that "the reality is that you will grieve forever."

In fact, researchers have now identified specific patterns to grief's intensity and duration. And what they have found is that the worst of grief is usually over within about six months. In a study published in the Journal of Personality and Social Psychology in 2002, Bonanno tracked 205 elderly people whose spouses died, and the largest group - about 45% of the participants - showed no signs of shock, despair, anxiety or intrusive thoughts six months after their loss. Subjects were also screened for classic symptoms of depression, such as lethargy, sleeplessness, joylessness and appetite problems, and came up clean on those as well. That didn't mean they didn't still miss or think about their spouse, but by about half a year after their husband or wife died, they had returned to normal functioning. (So much for the often repeated saying that "the second year is harder than the first.")

Only about 15% of the participants in Bonanno's study were still having problems at 18 months. This small minority might be suffering from a syndrome clinicians are starting to call Prolonged Grief Disorder. Most people respond to loss with resilience, which is often mischaracterized as pathological or delayed grief. Or, to borrow Bonanno's paraphrasing, "If you're resilient after a horrible accident or traumatic event, then you're a hero, but if you're resilient after a death, then you're considered cold." Knowing that this was a common conclusion, he asked the subjects in his 2002 study about the quality of their marriages and found no significant differences between those who recovered quickly and those who took much longer. Nor were the resilient grievers found to be more aloof or distant when interacting with others. As the possibility that they were repressing their grief, Bonanno followed the group for up to four years (some participants dropped out) to see if people who initially showed lower distress levels had delayed reactions. None of them did.

It's hard to tell what makes people resilient. "Personality probably predicts only about 10% of resilience," says Bonanno. "Having money helps, having social support helps, having minimal sources of other stress helps, but no one thing is a big predictor." What we do know is that while loss is forever, acute grief is not.
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It would be very helpful for Konigsberg's readers to know how she defines the concepts loss and grief. At times she uses them interchangeably and at others they are very distinct concepts. Especially when she alerts us at the end of myth 4, that loss is forever, but grief is not.

I think what stands out for me the most about this myth is the timeline she and researchers try to attach to grief. As she states in her second paragraph, "the worst of grief is usually over within about six months." What on earth does the WORST OF GRIEF mean? I am pretty sure if we asked people grieving about the "worst" of it, we would most likely generate very different responses. Also from personal experience with the loss of Mattie, I most certainly was not over the worst of it after six months. I was numb for the first six months, and only thereafter did I begin feeling and expressing the loss. In fact, in many ways, I do find aspects of the second year harder than the first. It is harder for various reasons. Social support declines, there are societal expectations placed upon you after one year of mourning is over, and the worst of it all is the reality of the loss hits you front and center and the true grief work, in my perspective, now begins. The work of how to reengage with the world, how to continue living, and how to see and work toward a future.

She cited a finding from Bonanno's 2002 study in which she stated, "about 45% of the participants - showed no signs of shock, despair, anxiety or intrusive thoughts six months after their loss."  My question is what happened to the the other 55% of the sample????? It is great that 45% of the sample adjusted so well to the death of a spouse at 6 months, but that isn't exactly a stellar percentage! Something tells me the other 55% were still working through grief, and it would have been helpful to hear more about them.

Researchers seem very perplexed by what constitutes resiliency in the bereaved! In fact, in Bonanno's study, he set out to examine whether the quality of the participants' marriages would help to explain the grievers' level of resilience. Meaning, if the couple was emotionally connected (which is what I assume "quality" refers to), that perhaps this would explain the ability to be resilient and cope in a more timely fashion with the loss. However, the conclusion was there really aren't good indicators to determine resilience from a loss.

I think what this whole myth achieved was to emphasize an aspect of grief that really shouldn't even be a factor on the table of healing, and that is TIME. Who is to say that after six months, one should be feeling better? What if one isn't? Does that mean something is wrong? Well if you simply analyze the content of this article, you may say, YES. I think quantifying loss is more detrimental than beneficial, and I also think that lumping all losses together is equally unwise. Unnatural and unexpected deaths make grieving additionally complicated and challenging and I am troubled that this isn't even mentioned within this myth. The only participant group examined here were "elderly" individuals who lost a spouse. You can't tell me that a woman who loses her husband early in life, and is forced to raise children on her own, may not have a different grieving experience than an "elderly" woman who lost her husband after many years of marriage?

Tomorrow night, I will present the fifth and final myth. It is my hope that my readers found Konigsberg's article as interesting as I did. I appreciate your visits to the blog and your willingness to read what I have to say about this topic.

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