Mattie Miracle 9th Annual Walk & Family Festival -- Raised over $97,000

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: 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

Random Shots of Mattie, Family and Friends

October 15, 2016

Saturday, October 15, 2016

Saturday, October 15, 2016

Tonight's picture was taken in October 2005. I have posted a few photos this week of Mattie in this costume. I just love these photos and each one captured another aspect of Mattie and the fun he was having in his Halloween costume.  In this photo he was proudly showing off his cat tail. Mattie and I worked hard on designing that cat tail and I think we did a great job. 

Quote of the day: Truth does not become more true by virtue of the fact that the entire world agrees with it, nor less so even if the whole world disagrees with it.  Maimonides

Last night Peter and I went out to dinner with friends. Typically I don't bring up or put in writing my thoughts on anything politically related or controversial. Because it serves no purpose to me as a Foundation leader. However, last night's conversation that was started (not by me) revolved around physician assisted suicide. This is a topic with great controversy and we all have moral, ethical, and perhaps spiritual feelings wrapped around it. One of my dinner mates and I were NOT on the same page about the topic. Which of course is fine, because we can gain a lot be airing our differences of opinions. In some cases (depending upon the topic), I may even be open to taking such perspectives into account and potentially altering mine own stance (though it doesn't typically happen, because I am grounded in my own belief system, though I can appreciate what others say, I don't waver). One of the topics I do not waver on is physician assisted suicide. I do value the sanctity of life and do understand the nature of the Hippocratic oath. Yet despite these important values, I stand behind physician assisted suicide. 

I think my stance deeply troubled my dinner mate and she worked hard trying to change my opinion. She even took out her i-phone and was reading me passages and excerpts she was finding about the topic. I took it in, but that is where it ended. After seeing Mattie suffer a grueling death for five hours, I have gained an up close and personal understanding of death..... and death is NOT pretty. But I have more than just one death under my belt. I watched my grandmother's life be transformed by a massive stroke, I saw a close friend of mine debilitated beyond recognition from ALS, and I saw the parents of a friend of mine die. Of course in these circumstances, a disease killed all five  of these people. Their deaths were not assisted, but each case further strengthened my position on physician assisted suicide. If a person is deemed terminal with only six months to live, shouldn't people be allowed the control to determine how they die and in what manner? You may ask..... how do you know if someone is terminal? Don't doctors make mistakes? Yes perhaps, but in all the cases I mentioned above, it was VERY clear that the medical prognosis was poor and death was never in question, only when it would occur.  

Dealing with a disease and dying from that disease is not only an issue of pain and suffering, but there are real social, emotional, and psychological ramifications to this. Ramifications that impact the patient and the entire family. When you watch a family member die in a traumatic way because of great pain, not being able to breathe, and having no dignity, this has a lasting impact on those who remain behind. Assuming a patient is competent to make sound medical decisions, then I think the control needs to remain in the hands of a terminal patient. 

If this topic interests you, you can read further................................

A variety of terms have historically been used to describe when a terminally ill patient uses a lethal dose of medication for the purpose of ending his or her life (or having control over the timing of death). Prior to the passage of the Oregon Death with Dignity Act in 1996, the term most often used was “physician-assisted suicide” (PAS). Those who use this term feel that it is an accurate reflection of the relationship between doctor and patient and refer to the etymological roots of suicide as “auto-killing” or “self-killing.” The use of this term ties the role of the physician to one that aids the patient in killing him or herself. However, implicit in the understanding of the word suicide is the notion of a premature death that is being hastened out of despair, therefore when mental illness impairs judgment, intervention to stop a suicide is ethically warranted because the person seeking suicide has lost his ability to carefully weigh the benefits and burdens of continued life. Generally speaking, persons who are suicidal are treated as though their decision-making capacity is compromised and health care providers often intervene and provide life-sustaining treatments (including involuntary psychiatric treatment) over the objections of the patient. Therefore, some people, including several national professional organizations, object to the term suicide for the choice of a terminally ill patient to hasten death, because of the associations between suicide and mental illness. They argue that, unlike the patients with impaired judgment who request suicide, terminally ill patients who request medication under the Act have the capacity to make a rational, autonomous decision to end their lives.

The term “physician aid-in-dying” (PAD) is used to describe the practice authorized under the Washington, Oregon and Vermont Death with Dignity Acts and is meant to reflect the requirement that eligible persons must be decisionally competent and have a limited life expectancy of about 6 months or less. In this context, the term is meant to reflect that physicians provide assistance to patients who are otherwise going to die, and who seek help to control the timing and circumstances of their death in the face of end-of-life suffering they deem intolerable.

What are the arguments in favor of physician aid-in-dying (PAD)?
Those who argue that PAD is ethically justifiable offer the following arguments:
  1. Respect for autonomy: Decisions about time and circumstances of death are personal. Competent people should have right to choose the timing and manner of death. 
  2. Justice: Justice requires that we "treat like cases alike." Competent, terminally ill patients have the legal right to refuse treatment that will prolong their deaths. For patients who are suffering but who are not dependent on life support, such as respirators or dialysis, refusing treatment will not suffice to hasten death. Thus, to treat these patients equitably, we should allow assisted death as it is their only option to hasten death.
  3. Compassion: Suffering means more than pain; there are other physical, existential, social and psychological burdens such as the loss of independence, loss of sense of self, and functional capacities that some patients feel jeopardize their dignity. It is not always possible to relieve suffering. Thus PAD may be a compassionate response to unremitting suffering.
  4. Individual liberty vs. state interest: Though society has strong interest in preserving life, that interest lessens when a person is terminally ill and has strong desire to end life. A complete prohibition against PAD excessively limits personal liberty. Therefore PAD should be allowed in certain cases.
  5. Honesty & transparency: Some acknowledge that assisted death already occurs, albeit in secret. The fact that PAD is illegal in most states prevents open discussion between patients and physicians and in public discourse. Legalization of PAD would promote open discussion and may promote better end-of-life care as patients and physicians could more directly address concerns and options.
What are the arguments against physician aid-in-dying (PAD)?
Those who argue that PAD is ethically impermissible often offer arguments such as these:
  1. Sanctity of life: Religious and secular traditions upholding the sanctity of human life have historically prohibited suicide or assistance in dying. PAD is morally wrong because it is viewed as diminishing the sanctity of life.
  2. Passive vs. Active distinction: There is an important difference between passively "letting die" and actively "killing." Treatment refusal or withholding treatment equates to letting die (passive) and is justifiable, whereas PAD equates to killing (active) and is not justifiable.
  3. Potential for abuse: Vulnerable populations, lacking access to quality care and support, may be pushed into assisted death. Furthermore, assisted death may become a cost-containment strategy. Burdened family members and health care providers may encourage loved ones to opt for assisted death and the protections in legislation can never catch all instances of such coercion or exploitation. To protect against these abuses, PAD should remain illegal.
  4. Professional integrity: Historical ethical traditions in medicine are strongly opposed to taking life. For instance, the Hippocratic oath states, "I will not administer poison to anyone where asked," and I will "be of benefit, or at least do no harm." Furthermore, some major professional groups such as the American Medical Association and the American Geriatrics Society oppose assisted death. The overall concern is that linking PAD to the practice of medicine could harm both the integrity and the public's image of the profession.
  5. Fallibility of the profession: The concern here is that physicians will make mistakes. For instance there may be uncertainty in diagnosis and prognosis. There may be errors in diagnosis and treatment of depression, or inadequate treatment of pain. Thus the State has an obligation to protect lives from these inevitable mistakes and to improve the quality of pain and symptom management at the end of life.

1 comment:

Margy Jost said...

I love that you post pictures of Mattie in this costume. In this particular picture, it is the MATTIE smile & and his bare feet that caught my eye. You did so many wonderfully, creative activities with Mattie.

Your quote holds a lot of truth for me, personally. I have been in similar situations where Physician Assisted help in dying is discussed. I feel as you do, grounded in my belief, that if this is the choice of the person facing death, it should be respected and help should be sought. I understand the lists of for and against this. There is validity in some of the points. This validity does not sway my belief. I have been with many at the end of life, the days, hours leading up to their final breath are heartbreaking! I know these experiences reinforce my belief that a person should have a voice and family/friends should be a support in understanding, casting no opinions unless asked and making no judgements. No one has to choose this. Making it possible is not going to suddenly have people with terminal diagnosis lining up to choose to end their life. However, not letting this be an option, causes undo suffering for those who would choose this way to die, given they have but a short time to live. There is complete emptiness when death occurs for those left no matter how it occurs.