Peace on Earth-Ferguson

RACISM: 

noun
1.

a belief or doctrine that inherent differences among the various human races determine cultural or individual achievement, usually involving the idea that one’s own race is superior and has the right to rule others.
2.

a policy, system of government, etc., based upon or fostering such a doctrine; discrimination.
3.

hatred or intolerance of another race or other races.

Injuries from firearms send an estimated 7,000 kids to the ER every year, and an additional 3,000 children die from gunshot wounds before they can get to a hospital, according to a new study published in the journal Pediatrics. Doctors are pointing to the new data as further evidence of the serious public health toll that gun violence takes on America’s youth.

The new study drilled down some of the data from a 2009 survey of kids’ pediatric stays. That year, the majority of kids’ gunshot injuries — 4,559 — resulted from intentional assaults with a firearm. An additional 2,149 were accidents, and 270 were suicide attempts. About six percent of the children who made it to the ER ended up dying in the hospital from their injuries, which are typically open wounds, fractures, or brain or spinal injuries.

“This study reinforces what we know from the mortality data,” Daniel Webster, the director of the Johns Hopkins Center for Gun Policy and Research, told NBC News. “We have an extraordinary health burden in our youth associated with firearms injuries.”

Webster pointed out that the United States’ rate of mortality from firearms is about ten times higher than the rates in other wealthy nations. “This is a very unique and abnormal problem that such a wealthy nation should have such high mortality and morbidity in youth related to firearms,” he noted. (Think Progress)

The total number of gang homicides reported by respondents in the NYGS sample averaged nearly 2,000 annually from 2007 to 2012. During roughly the same time period (2007 to 2011), the FBI estimated, on average, more than 15,500 homicides across the United States (www.fbi.gov/about-us/cjis/ucr/crime-in-the-u.s/2011/crime-in-the-u.s.-2011/tables/table-1). These estimates suggest that gang-related homicides typically accounted for around 13 percent of all homicides annually. (National Gang Center)

And all of that leads this blogger to today’s posting…Ferguson.

Racism is alive and well.  Whether it’s directed to a black kid on the streets of St. Louis or a Hispanic kid on the streets of Houston or a white kid who attends a predominately minority school….it’s alive and well.  To say otherwise, is an insult to those across the world who deal with prejudice on a daily basis-whether it’s self-inflicted or not does not matter.  We, as humans, judge one another by the color of our skin, the size of our checking account, our gender….it’s wrong…yet, we have all been guilty of prejudice at some point.  We have all been a victim of someone’s prejudice towards us at some point as well.  For the vast majority of us, that prejudice was fleeting-a one time ordeal.  We cannot understand what it is like to live in world that every single day you are judged by the color of your skin.  As a white female, I cannot understand what it is like to get pulled over just because I meet some “profile” of a “typical” offender.  I won’t pretend that I do.  I also won’t pretend it doesn’t happen.  So, yes, racism is here.

I copied the information regarding gun deaths to children and deaths to gang members to show that maybe we are fearing the wrong thing…..gang members are killing far less than I thought they were-I had just assumed due to the media hype the numbers would be staggering….they are in that one life lost is too many….but statistics clearly show the vast majority of homicides in this nation are not committed by gang members….but by human beings that decide to kill. Not kill to protect, but to kill because in that moment they did not value human life.  And maybe, just maybe that’s what Ferguson is really about.  A community that has a small percentage that does not value human life.  A small percentage that has become so consumed with anger and hate that rational thoughts and behaviors are no longer the norm.

A police officer, on that given night had to make a decision.  Was he in danger?  We do not know what it is like to patrol an area where you are hated, not wanted….yet…this man…because of his call to public service patrolled that community where he was not wanted.  A man that has probably replayed that night a thousand times in his head….second guessing every single move he made.  Yet, in that moment, was he in danger?  I think the facts clearly state that he likely was.  From there, things seem a little murky, but we have a judicial system in this nation and that grand jury was given more information than most grand jury’s get.  Was there probable cause? No.  An officer of the court made a snap decision on his safety and the safety of those around him.  That’s their job.  He had never fired his weapon before on duty.  A grand jury must find probable cause.  In this case, it wasn’t there based on the evidence and facts presented.

And then our President addressed the nation.  Facebook feeds were firing away.  And then, this little blogger who is just one voice in a sea of millions had that lightbulb moment as she read what people were saying about Ferguson, about our President, about all of it.  We are a very angry nation-of all colors.  We are a nation that has lost respect for authority and for the office of the President.  (I didn’t say we had to like or agree with the President, but there is no respect for that office anymore.)  We don’t respect our public servants, we don’t respect our teachers, we don’t respect one another.  Is it any surprise when you accept that fact that we have a small percentage of a town tearing it into pieces?  We are an angry nation.  We all want to be a victim.

So, this little blogger’s answer is this-let’s cover our nation in grace.  We need grace in abundance.  We need to raise our children to see one another for who they are-not what they are.  We need to be a nation that respects our public servants and our leaders, even if we don’t agree with them. We need to teach our children to respect their community.   We need to teach all of that, model that.  Anger serves no one when it is allowed to fester into what we are seeing in Ferguson.  That anger isn’t about one kid…..that anger goes so much deeper.  We need to teach the value of human life…and maybe that means taking away Halo, or Call of Duty or whatever has caused so many to view killing as an act with no consequences.  We can’t just treat the branches of the tree that is broken….we must address the problem at the root.

Today, we pray for Ferguson and every community in America that is like her…and for one another.

Lindsay’s Story

This story is about Lindsay Stern.  Her parents have been instrumental in being a voice of RRP, research, support system and lead the RRP Foundation.  Long before Facebook or Twitter or really the internet as we know it today, they were leading the way….fighting not just for their own daughter but for each one of us that fights RRP daily.  They are truly RRP Heroes.  

Lindsay Stern’s RRP Story

[The following is reprinted from an article that appeared in the Spring 1996 issue of the RRP Newsletter plus updates to the present.]

We adopted Lindsay from Korea when she was 13 months old.  From the first day that she was with us we noticed that she had a low cry and a faint deep voice.  We often mentioned this to our pediatrician, who said that we were “lucky” that we didn’t have a baby with an ear piercing scream.  She seemed generally happy and healthy, except for an occasional cough, croup, and constant ear infections.   Shortly before her second birthday she seemed to be breathing loudly and then began snoring loudly when sleeping.  After more than a month involving many visits to the pediatrician, diagnoses ranging from post-nasal-drip to asthma to croup and 3 weeks of prescribed ventolin and prednisone treatment, we were referred to a local otolaryngologist, Dr. Stephen Farmer, in Princeton.  After looking into Lindsay’s larynx with a scope, he sat us down and told us what he knew about this disease that we (and our pediatrician) had never heard of.  He referred us to Mount Sinai Medical Center for emergency admission that evening, November 14, 1991.  Lindsay was scoped again and the resident otolaryngologist suggested the possibility of a tracheotomy (at this point we barely knew what a trach was, let alone the implications when it is used in conjunction with RRP).  The next day Dr. Peter Catalano performed a laser surgery, thankfully, he was able to avoid a tracheotomy, despite the fact that she was nearly 99% obstructed ( We remembered the embattled and exhausted look on the face of the anesthesiologist after coming out of surgery.  Lindsay was the most severely obstructed two year old they had ever seen!) She spent 9 days at Mount Sinai with a second laser surgery 6 days after the first.

We had many questions and only received a few answers.  No one seemed to know much about RRP, only that it is rare.  Were we all alone with this disease?  What type of life did our little girl face and how many more surgeries will she have to endure?  Will she live to go to college, get married and raise a family?  Is there anyone doing any research to try to find a cure?  No one knew of any support group.  We scoured the Mount Sinai medical library for information.  The little bit of literature about RRP that we found, told us that it was virtually certain to reoccur for some time.  We very much needed to reach out and talk with others in similar situations.  It was this deep need for emotional support that motivated us to seek others and develop a support network of RRP families.

We began the process of reaching out to others by contacting the otolaryngology departments of  major medical centers in the Northeast U.S.  In our search we found out that Children’s Hospital of Philadelphia (CHOP) had a significant RRP patient population and the otolaryngology department clinical nurse, Linda Miller, provided a wealth of information (and if it wasn’t for Linda’s support and guidance, we might not be coping today).  Over the next 6 months Lindsay had 7 more surgeries, all at CHOP.

During this brief but aggressive period we felt our emotions wax and wane as this disease went through its unexplained ups and downs.  For example, Lindsay’s 5th surgery since diagnosis occurred on February 13, 1992, it was her best to date.  Her surgeon, Dr. William Potsic, told us that he found only a small amount of papilloma on the false and true cords (using the Kashima scoring system, my estimate was a score of 2, where 0 is none and 27 is total coverage and obstruction).  He lifted our spirits by predicting that we should be able to extend the surgical interval to at least 5 weeks.  Well, this fickle, uncaring disease gave us a significant emotional blow, when less than 3 weeks later Lindsay began snoring loudly and her nightime breathing had become distressed (i.e., early stage stridor).  Unfortunately, this was a Friday night, which meant an emergency room admission.  In anticipation of some difficulties, we video-taped Lindsay’s breathing while she slept that night.  On Saturday morning we went to the CHOP emergency room and, as we feared, were presented with difficulties.  The emergency room doctors didn’t really have a clue regarding RRP,  saying that she might have a touch of bronchitis and were going to send us home with ventolin.  We insisted on having the otolaryngology resident on call examine her.  He also was about to release her, not finding any significant respiratory problem in his exam.  But she was awake now, and as parents of an RRP patient we knew that respiratory problems from papilloma (in young children) always appear more noticeably at night while asleep.  We insisted that he look at this video of her sleeping the night before.  Reluctantly, he agreed, and 20 minutes later he came back saying that she was obstructed and would be admitted.  Our difficulties in this situation did have some positive impact on emergency admission policy for RRP patients at CHOP.  Based on our experience, Dr. Potsic, who very much believes, that parents are the best judge of when their kids with RRP are ready for surgery, instituted a policy that a child with RRP will be admitted and surgery performed on their parent’s say so.

Lindsay continued in an aggressive mode, requiring surgeries 7 and 8 over the next 5 weeks – we were starting to consider adjunct treatments, such as acyclovir or interferon.  About a week after her eigth surgery, we received a call from Linda Miller.  She had just spoken to some one from Long Island Jewish Medical Center (LIJ) and during the conversation a study involving indole-3-carbinol (I3C) and RRP was mentioned in passing.  We quickly pursued this by contacting the LIJ department of Otolaryngology and were put in touch with the researcher, Dr. Karen Auborn.  Dr. Auborn told us of encouraging results with a mouse study and suggested cruciferous vegetables as a source of I3C.  She estimated that about 8 ounces of cabbage (or about 4 ounces of cabbage juice) might provide a sufficient amount of I3C to induce a shift in estrogen metabolism so as to suppress papilloma growth (see the RRP Newsletters Fall 93 through Fall 94, http://www.rrpf.org/newsletter, as well as Newfield et al., 1993, Anticanc Res 13:337-342).  Lindsay’s 9th surgery occurred several weeks after initiation of a daily regimen of between 4 and 6 ounces of cabbage juice (The juice was made palatable by mixing approximately 2 oz. of cabbage juice with 5 oz. of apple juice.)  In contrast to the 8th surgery, which (like most of the prior operations) involved laser excision of a large amount of papillomas from multiple sites, the ninth surgery revealed a very small amount of papilloma which could easily be removed with a microlaryngeal forceps.

Lindsay continued the cabbage juice regimen and had two more visual examinations of her respiratory tract under general anesthesia at which no papilloma were found.  The first was at the end of June 1992, 6 weeks after her ninth surgery and then again at the end of September 1992, shortly before her third birthday.  At the beginning of 1994, when it was learned that we could obtain I3C in powdered form we gradually modified her sources of I3C to include approximately 190 mg of powdered I3C daily and reduced her cabbage juice intake to about 2 ounces per day.  As of the Spring of 1996, when Lindsay was 6 1/2 years of age, she continued with this therapy and remained free of symptoms since her last RRP surgery in September 1993.

We are most thankful for Lindsay’s apparent remission and wish the same for all RRP patients.  It is our firm belief that I3C played a key role and this appears to born out by the accounts of some others in the support group as well as the clinical work of Dr. Clark Rosen and Dr. Karen Auborn.

—————
A few years later a better form of I3C became available, so we switched Lindsay’s adjunctive therapy to BioResponse DIM (http://bioresponse.com/Home.asp). Now in the fall of 2014, about 18 ½ years since our original Newsletter article about Lindsay, we are happy to report that she remains in symptomatic remission.  We are extremely fortunate that Lindsay has been able to lead a very normal and active life.  She was a competitive swimmer into college.  These years have not been without episodes of hoarseness causing us concern that active RRP might be returning.  However, scopings have not revealed any recurrence of papillomas.  Lindsay does seem more sensitive to voice abuse and did have a number of tonsillar infections including one incidence of a tonsillar  abscess that led to a tonsillectomy at the age of 19.

We know that I3C / DIM does not work for everybody, but during the more than two decades that we have been involved with RRP we have seen significant progress in other treatment approaches.  In our opinion a remaining major challenge is to produce an effective treatment for pulmonary RRP, which affects a small percentage of RRP patients, but transforms an annoying disease into a life threatening one. One of the RRP Foundation’s main initiatives is to motivate the RRP research community to develop new approaches to produce effective treatments for aggressive, deeper, generally inoperative RRP.  Data suggests that lung involvement impacts about 5% – 7% of RRP patients, but it does represent at least 95% of the mortality associated with this disease. In addition, treatments that prove to be effective in these aggressive RRP cases should also be effective at other sites in the respiratory tract.

This article would not be complete without noting that without the inspiration of a number of RRP practitioners and researchers, i.e., Tom Broker, PhD, Bettie Steinberg, PhD and Haskins Kashima, MD, we would not have been motivated to actively seek information, network and organize.  In particular, we are indebted to an article in the New York Times early in 1992 which put us in contact with Dr. Tom Broker .  Tom literally spent hours on the phone with us.  His enthusiastic support for developing a close working relationship between RRP researchers and patients was critical in directing our efforts and creating the RRP Foundation (www.rrpf.org).

A little late, but the wish is still the same….

Sorry for the MIA as of late….life has been a roller-coaster of activity which I will share another day.

I missed celebrating my sweet Elizabeth’s fourth birthday!  So, please join me in a belated social media celebration of my Elizabeth’s day!!!

Elizabeth four

Elizabeth is so full of life.  She reminds me of her Mommy in so many ways.  Head strong and independent, but has a tender side that loves taking care of others.  Nothing melts my heart faster than when she runs to me with a great big hug or simply says, “Mimi, I love  you.”  She is always eager to share with me her newly “cooked” foods and we have built many castles out of lego blocks.  A princess is always improving on her home!  She is a great big sister to Blane and Ella and is the cutest ballerina you can imagine.

Happy Birthday Elizabeth…..I know you are going to do great things!

Every minute has worth….

Today, most of our news feeds have been trending the “death with dignity” death of Brittany in Oregon.  Before I begin today’s blog, there is no disputing that cancer, any cancer, robs a person of so much.  Glioblastoma is not how any of us would choose to die.  Then again, when it comes to dying, do any of us have a “preferred” way?  Today, is about a personal thought…a personal take…on how every minute on this earth has worth.

Heather Knies.  Know her?  Heard of her?  Probably not.   She survived stage IV Glioblastoma.  Defied the odds.  Defied the predictions of her doctors.  Rare.  Sure.  Yet, instead of giving up….using “quality of life” as an excuse to give up…she accepted treatment…she fought.  She lived.  She got the miracle here on earth.  Why didn’t she get celebrated across media for being “brave and courageous?”

I don’t know the girl in the news today.  I cannot put myself in her shoes…and I won’t pretend that I can.  What I do know is this:  there is nothing more precious than one more moment in life.  Alzheimer’s robs our loved ones of their minds…but not of their heart.  So, is that a life not worth living?  End stage cancer can be brutal.  I’ve seen it firsthand.  Yet…what about that “good day” that comes so unexpectedly that ends up being that day no one would trade for all the money in the world?  A minute worth living.  A lifetime can happen in just one minute.  Why would anyone choose to lose a single minute?

Today, I sit here upset over how it’s being portrayed in the media. It wasn’t brave.  It wasn’t courageous.  Fighting…not giving up…that’s brave.  All I see is a selfish act to avoid the fight.  My mother, who died a year ago, would have probably given anything to have one more minute..one more moment.  How many of us have loved ones who would have asked for the same thing as they looked at their final moments here on earth?

I sit here wondering if God had a miracle to perform in this girls life…whether it was curing her or letting her life be a testimony to someone else….and now…it’s just simply a life taken by the hands of “what I want.”

What criteria do we get to use to decide what life is worth living?  And why do we think we get to make that call?  We are not talking about life that is due to 100% medical intervention.  I, myself, have a directive on what I want if on life support one day.  This is not the same.

I hope she has found the peace that wasn’t here for her during her illness.  And to Heather Knies, thank you for being brave and courageous and fighting for every minute…..that’s something to celebrate.  Living with dignity.