Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “Hodgkin’s Lymphoma”

When The Cure Might Just Be Worse Than The Disease


I am going to apologize for the length of this post.  I have done all I can, several re-writes to make it more friendly to read.  But as the conversations continue on this subject, my post actually continues to grow, so that not just the facts, but all sides of opinions can be presented.

The story has received national attention.  Knowing that my blog receives a lot of attention, a follower asked if I would provide an open discussion, that perhaps more understanding might be provided, that perhaps given the following of my blog, the family involved might just see all the support, encouragement, and hope that exists in treating one of the few curable forms of cancer.

Unlike other posts I have written here, I am going to change the format to make it a little more formal, as if written as a term paper.

Before I do that, I want to make a few things clear.  First, I will state facts as they are known and their resources.  I will make obvious those which are opinions.  Commentaries quoted in this post are confirmed as legitimate.  Comments and replies will be allowed as long as they are constructive and not inflammatory.

The Headline

The following is just one link to a news website, there are so many more that originally reported the story about a 17 year-old girl from Connecticut, referred to only as “Cassandra C.”, diagnosed with Hodgkin’s Lymphoma, a very treatable form of cancer, but refused the treatment, which was supported by her mother, due to the potentially toxic side effects.  The state interceded and has forced the teen to undergo the treatments, having been removed from her mother, and treated against both their wills.  Here is the link as one news affiliate reported the story:

http://www.cbsnews.com/news/connecticut-teen-with-cancer-battles-state-to-stop-chemo/

This is a sad story with major implications in all directions.  Legally, should the state be interfering with the rights of someone objecting to treatments?  How informed were either the mother or the daughter as to all the details needed to make an informed decision?  Does the 17 year-old girl even have rights?  But aside from all the controversies of this story, there is one huge topic not being discussed, either intentionally or just as matter of fact, and I will present that topic towards the end in detail, but how were the concerns of the family addressed, and were their concerns answered?

Hodgkin’s Lymphoma Facts

I have stated repeatedly on this blog, I am a Hodgkin’s survivor who will hit my 25th anniversary in remission on March 3, 2015.  I stand behind the facts that I am presenting from a personal perspective and as far as factual.  From the time that I was diagnosed back in 1988, I was told the cure rate of Hodgkin’s Lymphoma was 85% which made it one of the most curable.  My oncologist actually made me sick commenting “if you are going to get cancer, Hodkgin’s Disease is the cancer to get.”  (I wrote about that comment earlier in “Paul’s Heart” as to how much I took offense to that statement).  In fact, even in the decades before me, Hodgkin’s has been treatable with success, especially when caught early.  And in most all cases, untreated Hodgkin’s would lead to certain death.

The diagnostics and  treatments for Hodgkin’s Lymphoma have improved in success over the century since Hodgkin’s was discovered.  The safety of the treatments has also improved, but has a long way to go in terms of short term and long term side effects.

But what the reports do not state accurately, are the risks from the treatments.  Personally, I am offended to simply state the side effects as “including nausea, hair loss, vomiting, fatigue and diarrhea.”  This is a horrible stereotype that has existed for decades, which has always enflamed the fears of dealing with cancer.  But the truth is, if it were accurately reported, there are far more serious potential side effects, and they depend on the type of treatment done.  To understate those risks, no matter how small, provides a huge disservice to the patient and her family.

Radiation therapy has always been the go-to for treating Hodgkin’s.  Gone are the days of exposure to cobalt radiation, and being exposed to limits of other radiation that exceed lifetimes of exposure limits.  Chemotherapy drugs used in warfare then used to treat Hodgkin’s as well as other toxic drugs, now considered obsolete.  There are now new standards of radiation and chemotherapies being used, that are providing similar success, but still carry more risks than the stereotype side effects listed above and they include:  cardiac, pulmonary, gastrointestinal, endocrine, spinal, muscular, neurological, renal, urinary, reproductive, and of course, emotional.  There of course is the risk of secondary cancers such as breast, thyroid, colon, and even recurrent or new Hodgkin’s.  Now I have just listed the systems involved, but the effects for each system are numerous.  And for the sake of this post, I will say that this is only in the case of Hodgkin’s Lymphoma, not necessarily other cancers, unless those cancers use similar drugs for their treatments.  As you can see, there is far more to consider than just nausea and hair loss.  While the risks may be lower, they still exist.

Facts Of The Case As Reported

The subtitle above is written that way on purpose.  For the purposes of HIPPA, we, as readers do not have the rights to the actual information of the case, including the actual treatment regimen.  Therefore, we can only rely on the following facts as being legitimate:

  • Cassandra C. at 17 years-old is a minor
  • Hodgkin’s Lymphoma very treatable, untreated death likely
  • Cassandra refused treatment due to toxicity concerns, mother supports her daughter’s wishes
  • Department of Children and Families removed Cassandra from her mother, and have allowed the treatment to be administered by orders of the state of Connecticut
  • DCF is now in charge of Cassandra’s care
  • Neither the Supreme Courts of Connecticut or the United States has ever ruled on this issue

The Argument

This is what has me bothered most about the whole thing, because all that is being discussed, though legitimate, is the right to do with your own body.  “It’s a question of fundamental constitutional rights — the right to have a say over what happens to your body-and the right to say to the government ‘you can’t control what happens to my body,'” Cassandra’s mother’s attorney, Michael S. Taylor.

Not being discussed are the reasons that this family is in this position in the first place.  Questions about the safety of the treatments, or the surveillance to deal with these issues are not even being discussed.  So yes, if it is only coming down to the “right to do with your own body,” then the argument should be done.  With a full and complete discussion of the risks and monitoring to address the concerns of the family, only then can the family make the informed decision that they claim to have made and support.  The fact is, we have no idea the details of the conversation between the doctor and his patient about the risks and side effects other than what has been released by Cassandra’s mother.

Instead of trying to get to the bottom of what is best for the young girl, which yes, is to survive a curable cancer, a system, our government, and everyone else reading this story only want done what we believe, in spite of clearly violating a valuable right, not what can be done safer or better.

Case Update – Facts

http://www.nbcnews.com/health/cancer/connecticut-teen-curable-cancer-must-continue-chemo-court-n282421

The Connecticut Supreme court ruled last Thursday, that Cassandra C. is not mentally competent to make her own decision and will continue to receive her chemotherapy that both she and her mother battled to halt.

Lengths to avoid treatment included Cassandra C. running away from home.  But the state used against Cassandra C. the fact that several oncology appointments and exams were missed to claim that Cassandra C. was too “immature” to be responsible for her decision, as her mother is being accused of making the decision, rather than supporting it.

To be honest, it should not be considered unusual, as part of the Kubler-Ross stages, to go through “denial” and want to avoid things that you must face head on.  But it clearly would have been better for the mother to have attended those appointments and exams, and instead argue for alternative treatments that the family may have felt comfortable with.  Or perhaps to discuss the protocol to follow up for potentially dangerous side effects during the treatments.  We will never know.  Therefore the Connecticut Supreme Court ruled against the rights for anyone to want to protect their own body.  A different article completely, this will have profound implications for everyone.  But still, no one is talking about the actual care of the girl, and that does not mean forcing her against her will to go through a treatment that is toxic.  Chemotherapy is toxic.

The mother’s attorney, Taylor argued that both Connecticut courts and the U.S. Supreme Court have previously ruled that a person’s right to “common-law bodily integrity is a fundamental right,” and that right “exists in the minor the same as it could in an adult.”  Clearly, this is no longer the case.  As the attorney then stated, Cassandra C. has the maturity to drive a car and donate blood, but not decide what is best for herself.

To date, the treatments are having success as she is mid-way through her treatments.  And there are pros and cons should that treatment stop.  To ease up on the attack of the disease could result in remaining cells to build immunity against returning to the treatment process, or perhaps even cause the cancer to become even more aggressive.  The treatment plan at that point would need to become even more aggressive and more risky, involving cell transplants which carry their own risks, but also higher doses of chemotherapy prior to the transplant.

Today, as reported on the web site firstcoastnews.com: http://www.firstcoastnews.com/story/life/people/2015/01/12/teenager-explains-why-she-dont-want-chemotherapy/21633579/

“The 17-year-old says she is worried about what she considers risks, including heart defects, organ damage, and digestive problems.  These are legitimate concerns for anyone going through any cancer treatments, and I will personally attest in the treatment of Hodgkin’s Lymphoma.

“I entirely understand that death will be the outcome without the chemo,” Cassandra wrote to ABC News affiliate WTNH-TV from Connecticut Children’s Medical Center, where she has been living and getting treatment. “The doctors have made that clear.”

Ultimately, do we, you and I, the government, have the right to tell this family what to do?  Seriously, how should our opinions matter in this?  There is a hope, among many readers of Facebook, blog, and other media resources, that somehow, we might convince the family that they have support, now nationwide, to get cured of a deadly disease, to be one of the 85%.  But this is only of value if solutions are offered for the problem.  As of these news reports, there are no solutions.  Right now, the  only winner is the Connecticut Supreme Court.

Commentary

I am a 24 year survivor of the same disease Cassandra C..  And now that she has gone through her treatments, hopefully she will be closely monitored for the potential late side effects, that could develop.  I have well over a dozen serious diagnosis of late side effect, with at least six of them potentially life threatening, all caused from my “cure.”  My initial response to this story shocked many of my readers as I answered the ultimate “what if” question, “would I go through it again?” and my answer at the time was a definite “no.”  I have had a few days to think about my knee-jerk answer, and while not uncommon for someone in my spot to make that comment, it was unusual for someone like me.  All that was disclosed to me as far as potential side effects would be pericarditis (an inflammation of the heart) or a secondary cancer.  At that time, it definitely was worth the risk for a 23 year-old.  But had I been told, that I could face a fatal heart attack, stroke, restrictive lung disease, and many more… I would have said no.  This came as a shock to those who know how much I love my daughters, who clearly would not have come into my life had I chosen not to go through treatments.  Admittedly, I am going through a different kind of traumatic and stressful period right now which definitely had an impact on my thought process.   I still believe it is not an easy decision to be faced with.  But I also believe STRONGLY that MORE NEEDS TO BE DONE not just in a better and safer treatment regimen, but a better protocol to follow up for the development of the side effects.  And yes, if my daughters were to face any situation like this, I would have fought treatments until I could make sure that EVERY one of our concerns was addressed and dealt with, and only then with close surveillance would I allow it.  But it is my child’s life, and we have the right to protect our body to the best ability, not just what is cost effective.

Bloodwork is done throughout the treatment plan to make sure that bodies are going to be able to tolerate the toxicity of the treatment before it is administered.  But other than a base-line study, no other testing is done on potentially affected body organs and systems until most likely months following the completion of the treatment.  The fact is that one of the drugs, used successfully for the treatment of Hodgkin’s for decades, including me, can result in congestive heart failure.  And medicine knows that it can be detected as early as the first treatment and how to do it, yet it is not.  For the small percentage of patients who face CHF from the drug, the patient will endure permanent damage as they get to the end of the treatment plan.  But there is no follow up for this.  Why?  Because medicine feels it is not cost effective for the small amount of people that could face this.  Admittedly, my cardiac issue is not solely related to that very drug.  But there still was no monitoring me until 2008, nearly 20 years after I was diagnosed.  So you can see where my stance is… better follow up protocol during treatment, along with better and safer treatments, and I believe an incident like Cassandra C.’s situation would possibly never happen again.  But do not take my word for it.

Here is commentary from two guests on this post.  The first is from Wendy, a fellow long term survivor with a different outlook on things, that I can clearly understand and actually support.  The second will be from Josephine, the mother of Michael who I have written about on a couple of occasions, including earlier last week.

Wendy (this is a quoted response from a post on a Hodgkin’s related FB page)

“Each time I sat down in the “chemo” chair and had my IV started I prayed out loud to God. I thanked the many patients who went before me and were the “human guinea pigs” who made successful treatment of Hodgkins Disease possible in 1987 when I was treated. I thanked God for making humans smart enough to become scientists and thinkers who could solve some of their own problems like diseases. The progress made up until that time did not benefit those who were a part of the learning curve and died while discoveries & advancements were being made. That progress benefited “the next generation or group” to be treated. Zofran was not available as an anti-emetic when I was treated so I vomited my guts out! In 1991 the FDA approved Zofran and patients had something to help with the nausea and vomiting. I just missed it by 3 years. That is how quickly things can change. Therefore I think this young lady should consider all of us who endured the poisoning from chemo, the burning from radiation, and now the latent effects and repercussions from those treatments. Yes, some of us are still alive, and many are dead. This young lady should look at the history of treatment, how far it has come and also should consider patients still die from Hodgkins Disease! Perhaps her generation cannot endure anything that isn’t painless and does not involve immediate gratification! This is a long haul journey when you embark on beating back any cancer. It is not always “one and done.” WE are acutely aware of what would have happened if we did not have the fortitude to stick it out. I, for one, would not have had the last 27 years of life! That means I wouldn’t have married my awesome husband and given birth to two sons who are now 18 and 20 years old! My 3 years of diagnosis, treatment, follow up were worth it! The young lady who is refusing treatment may never know what she is missing in exchange for making it through treatment. She may never know her future husband, children. Her Mom, who is encouraging her daughter to refuse treatment, may never have the joy of grandchildren who might have been here if only her daughter could have endured something unpleasant. Yes, this is long, my last thought is that is is an insult to Hodgkin’s patients, dead and alive, who paved the way for her to have an 80% chance to succeed and live. I usually don’t say too much on our site. Now you won’t hear from me for a month or two! Thanks for reading!”

Josephine

Her 24 year-old son died as a direct result of the drug that has cured so many of us Hodgkin’s patients.  He died from complications of CHF that no one, including his oncologist, his mother, nurses, even Michael could ever have known would happen.  But I took the opportunity of this topic to ask her a question that should have been responded with an obvious answer.

“Josephine, did you have any idea that serious heart complications could have developed from the one drug?”

“No.  I have the paperwork, and there is barely any mention of the seriousness of heart complications.”

“So then, knowing what you know now, would you have allowed your Michael to have undergone the treatment?”

Me personally knowing what her son went through from the time he went into CHF until the day he died, and the quality of life issue faced by Michael and his family, her initial answer surprised me.

“Yes.”

And then she followed up… “though I would have made sure that they followed Michael more closely had I known.”

Final Comments

The facts speak for themselves.  Hodgkin’s, though a rare form of cancer, is still one of the most treatable, when it is caught early.  It is going to be one of the most difficult decisions to make, if a patient is completely informed.  But the doctors have to be completely honest about the risks instead of being worried about delays from having too much to think about and taking too long to think about.  Doctors need to make sure that every one of a patient’s concerns are answered, and if those concerns cannot be addressed, then it needs to be left up to the family, and not a court, legal or of opinion.  And finally, WE NEED A PROTOCOL TO FOLLOW UP ON BODY ORGANS AND SYSTEMS THAT HAVE EVEN THE SMALLEST OF POTENTIAL TO DEVELOPE A SIDE EFFECT FROM A DRUG WITH A HISTORY OF CAUSING SUCH DAMAGE.  It is unacceptable to say “it is not cost effective” to monitor for potentially lethal side effects even if they only occur 1% of the time.  Only when a patient and their family is convinced that medicine will do all it can to protect the patient, will a situation like Cassandra C.’s will have a chance of being prevented from happening again.

For me, while I am glad that Cassandra C. is being treated, I am sorry that her rights to refuse treatment were violated.  I do believe in the ability to cure Hodgkin’s… I am proof that it can be done.  But I am also proof, just as Michael and Wendy, more needs to be done with surveillance to prevent tragedies and serious side effects.  Cancer patients are now being followed up more closely once done with their treatments, but more needs to be done, both during and after treatment.  Costs to deny the proper protocols and follow ups, will never equal quality of life.

And now it is your turn to comment.  I will publish your comments as long as they are constructive and supportive as this blog is intended to do.  Simply reply to this post for publication.  Please feel free to share this post.

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Lymphoma – Technology and Treatments – So Much Better, But Not Good Enough


Treating lymphoma has always been about timing.  I cannot talk about treating non-Hodgkin’s Lymphoma as I did not have it, nor do I know anyone who has battled it.  But as far as Hodgkin’s Lymphoma is concerned.  I was diagnosed six months before my first wedding (that is another post) and as I begged my oncologist (cancer doctor) that I wanted to hold off on any treatments until after my wedding, he was having no parts of it.  For a male patient, there really is no excuse for delaying treatment ever.  However, for a female who happens to be pregnant, this is a whole other issue.  For men, yes, sterility is an issue and for women as well, but when a woman is already pregnant, a hard decision has to be made whether to allow doctors to use toxic drugs to save her life, but also might adversely affect her baby’s life.  There is no guarantee.  I will talk about this type of decision in another post.

It has been over twenty five years since I underwent my first biopsy to diagnose my lymphoma.  And I am amazed to hear, as well as quite glad, that newer patients have not had to be subjected to the barbaric methods that I was diagnosed with.  But going back even forty and fifty and sixty years, cancer diagnostics have come a long way.  As for my experiences, here are three of the diagnostics that I rarely hear used today:

1)  bone marrow biopsy – taken from each side of my hip (felt like my ankles were being ripped up through my legs).  One side note to this, I actually had to have a third sample taken.  It seems that occurred after I heard my doctor say “oops” and claimed he had “lost” it.

2)  lymphangiogram – a cool sounding test, if you do not mind your legs being propped in a bent position for the entire procedure.  A slice is made into each foot, to all a doctor to use microscopic lenses to see lymph vessels (like blood vessels only much smaller) to inject a radioactive dye, that when subjected to an x-ray, lit my entire lymph system like a human Christmas tree to see where other possible affected lymph nodes might be located.

3) staging laparotomy – spleen removal, node biopsies, liver biopsy.  Not pleasant and quite painful.  An incision from sternum to belly button is made (any woman who has undergone a C-section will know this pain).

These three things were done to determine the staging of my disease, either 1, 2, 3, or 4.  By the time all was said and done, I was diagnosed 3b.  But in the decades since, a new kind of scan is now used to stage almost all cancers, a PET scan.  I only know enough from a few friends and my father who have undergone those scans to know they are no big deal.  In any case, I am glad that this new technology exists, however, it is still far from exact.  There are still uncertainties that exist during the staging process, and this can delay treatments.

So let’s talk about treatments.  Ask any radiation oncologist, and most will probably say they can cure Hodgkin’s Lymphoma with just radiation.  As any of us who grew up near a nuclear reactor like Three Mile Island, or know World War history, radiation in large amounts is a bad, bad, thing.  Side effects are brutal.  But radiation could give remission to certain cancer patients, especially Hodgkin’s patients.  Again, I will go more into side effects in detail in another post, but if you want to sneak a peak, I do have a link to the side effects from radiation I personally dealt with.

In the 1940’s, medicine discovered a drug, nitrogen mustard (a derivative of mustard gas, the same type dictator Sadaam Hussein used to kill his people), which had great results in giving people remission.  Just like radiation, it too had its drawbacks.  Besides being a deadly poison, it was also known to cause sterility in males during treatment.  Unfortunately for me, that occurred.  Shortly after that, a report came out that recommended that maximum treatments to reduce the possibility of sterility.  Yep, the two extra months of chemotherapy are probably what caused my sterility.

Like many people before me, I was treated with both radiation, mustargen, but also a cocktail of six other drugs, all carrying various risks.  And for survivors of Hodgkin’s from as far back as sixty years ago, yes, I know someone who has survived Hodgkin’s that long ago, these risks have become reality for us, and many quite critical to our health.  But again, over the decades since my treatments, the doctors found out that they could treat Hodgkin’s with less drugs, and soon, my chemo cocktail had been cut in half.  The hopes were to produce a remission more safely.  But it cannot be understated that the drugs are still dangerous, the damage to the human body still exists.

The last sentence for me became a reality this past year.  I met a young man who had done so well with his chemo therapy regimen, with the same drugs that I had been given.  Yet weeks later, he would be one of the rare patients who would develop a very bad reaction within two months of being declared in remission.  I did a post on Adriamyacin a couple of months ago, so you can find out the details there, and I will do another post later on.  But the long short of it, this young man, still a kid as far as I am concerned, died less than six months from the time that he was told to go ahead and enjoy his life.

Like I said, treatments today, while better than they were when I was treated, are still bad today.  We need better and safer treatments.  We need better and safer diagnostics.  We need better and safer follow-up guidelines.  I have no doubt in my mind, that had the young man who died as a result of the damage from his treatment, had he been followed up more closely being given a drug that was proven to cause potential damage to the heart, he would still be alive today.  A simple echocardiogram during the middle of the treatment, an inexpensive test when you put it in perspective that the lack of this test cost the man his life, could have given the doctors an opportunity to alter the treatment, or completely change the therapy regimen all together.

And so, during this month of September, National Lymphoma Month, I am going to inform you and educate why it is important to become aware of this rare disease that still needs a cure.  I am not asking you to make a donation, though I know I would personally appreciate it if you would.  But rather, I am about awareness.  Please, share this article, and the many that follow.  Share “Paul’s Heart.”  Together we can make a difference.

The Benefits Of A Challenge


Hodgkin’s Lymphoma is considered a rare form of blood cancer. I know this, because I battled HD over 24 years ago. My doctor back then, I will call him Dr. S., misdiagnosed me as having a common cold. Oops, imagine that mistake. The reality, unless you were being checked for breast cancer or skin cancer, many doctors had no idea what to look for.

The upside was that for what little I knew about HD, the cure rate was considered high. It was not 100% curable, but a great cure rate nonetheless. But unlike breast cancer, lung cancer, and even other major ailment such as cardiac disease, diabetes, Hodgkin’s Lymphoma did not, and to this day does not get a lot of publicity for fundraising such as the prior mentioned ailments.

I recall seeing one commercial, during late night television, which featured a young female, a common demographic for a Hodgkin’s diagnosis, lying in a hospital bed in the middle of Manhattan. Of course, as is common in New York City, people just go about their business, not paying any attention to the sick young women on a hospital bed in the unusual location of a NYC street, or why she was there. As goes the knowledge of people battling Hodgkin’s Lymphoma.

And unlike the attention to a particular cancer paid, when celebrities such as Michael Douglass or Cheryl Crow, or even Lance Armstrong (sorry, I know, but performance enhancing issues or not, he did battle a serious cancer), there have been plenty of celebrities who have battled Hodgkin’s Lymphoma. And as each one is publicized, I hope that one celebrity becomes the one that finally will be the one who can bring Hodgkin’s to the forefront for a cure, the first cancer with a 100% cure rate. The most noticeable celebrity right now facing Hodgkin’s Lymphoma is Def Leppard guitarist Vivian Campbell.

Mr. Campbell is finishing up his second treatment regimen, the first treatment only putting him into remission temporarily. He has continued to play and tour with his bandmates. As someone who worked through his HD treatments, I can truly appreciate his efforts to continue to tour. But here is an example of someone who should clearly have the money and resources available to get the best treatment for a curable cancer, and yet, he has struggled. Perhaps with a little more research, the better and more effective cure can be found. But that costs money. To get money, you have to bring attention to the cause.

Which is why I have to admire the ALS Ice Bucket Challenge. I was challenged today by another local author, Stephen Kaufman to complete this challenge, and issue a challenge of my own to other individuals. The task, dump a bucket of ice cold water over my head, or donate $100 to ALS. This challenge has received mixed reviews as many cynics felt that doing this task was not going to do anything for the benefit for ALS research. Many felt that all the task was doing was giving people their Youtube fame on Facebook, and not much would be done for ALS research or patients.

But the truth is, people have not only been doing the challenge, but also making the donations, and many making more than just the $100 donation. Celebrities are also joining in the challenge from rock stars to athletes to politicians, to actors, many making enormous donations to fight ALS. Even ALS patients themselves are getting into the act.

As personal as my fight with the rare blood cancer, Hodgkin’s Lymphoma, my fight with ALS became personal several years ago when a co-worker was diagnosed with ALS. Ron would be the first person I would encounter, unfortunately not the last. Two years later, my brother-in-law Mike would be diagnosed following an unusual slurred speech development. If only our lighthearted concerns of being too much Jack Daniels would have been the case, unfortunately it was Lou Gehrig’s Disease.

With this being my brother-in-law, someone I was very close to, almost as a brother, I saw first hand the Hell that an ALS patient goes through as their body slowly destroys itself. One of the worst parts of the disease is that the mind is relatively in a state of complete awareness as to what is going on, but as the body slowly loses its ability to eat, swallow, speak, grasp, stand, the mind can do nothing about it. Even more frustrating according to Mike, was the inability for him to communicate. While technology would provide an avenue for him to speak, an app for his Ipad, that when he either typed words or wrote words with his finger tip, the Ipad would vocalize for him, this was not the same as being able to have just a regular vocal conversation.

Over time, the ALS became more evident in Mike, but it did not stop him from trying to do what he enjoyed. He continued to work through most of his illness, his employer accommodating him pretty much up until the end. He rode his motor cycle and finally made a pilgrimage to Ireland, a life long dream of his. At one point, he joined others, in an attempt to draw attention to ALS, by travelling to the Jersey shore in the middle of Winter, for a “polar plunge” into the Atlantic (the original version of the Ice Bucket Challenge).

It will be two years next month that Mike lost his battle. So today, I accepted my challenge, nominated four others to complete the challenge. And as many others, I will also send a check into the ALS Foundation as I have done in the past, in Mike’s memory.

It was noted via various media resources that last year alone, only $1.7 million had been raised for ALS research through various fundraisers. But in just the past two months, over $25 million has been raised through this Ice Bucket Challenge. Awareness for a rare and fatal disease has been made. Funds for research have been earned.

As someone who has battled another rare disease, I appreciate the efforts this cause has put out, and earned. I hope someone, every disease, regardless of severity, can find its own “ice bucket challenge” to help their cause.

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