Back to the High Programmer's Blog
:/
Dear Tim,
In reply to your post about my daughter Kiki; It is obvious that you have so much missing information in regards to Cancer treatments and treatments options that are available for the Cancer type Kiki has. I do not wish for you or anyone you know to be in this situation were you left with no options on hand to cure your child and the clock is ticking. Yes, palliative care was an option and most hospitals will offer. This is the easy way out and a way that was unaccepted by Kikis mom and I, we love our daughter.
When the pharmaceuticals giants (Hospitals, Medical doctors, and other approved methods by the FDA..) has no known cure, you face a very difficult situation and a decision to make. We elected to do anything possible to save her life and Alternative treatment was the only option. Alternative treatment provided Kiki with great quality of life for many months.
2.5 years ago Kiki was given 2-4 weeks to stay with us on this planet by 3 different medical doctors, they said that there is no way she is ever be able to get back to normal after the damaged done by the tumor - she did. Thanks to Alternative Medicine, Traditional Medicine, Love and support of friends family and strangers who cared, she is still with us today.
Science has wonderful finds and medical doctors are doing miracles for many people with medical issues. Unfortunately It is not yet to find a solution to most cancers. I will never regret trying everything possible to treat my daughter and recommend to anyone to try anything available for them to get solutions. NEGU (Never Ever Give Up)
Take care. Ami Havivy
I agree with Tim Too many people waste time giving to these people who profess cures If that $$ were spent in research just like where HIV was in the 80s I pray for your daughter But I think the alternative medicine route is plagued with too many fallacies
I'd like to tearfully request that you take this post down. As I type this message, Kiki has passed away within the last 48 hours. A Google search brings up this post as the 4th result. With thousands of people currently mourning her passing, not to mention her loving parents, I would appreciate it if you delete this post. Perhaps post about your attitudes towards alternative medicine in a different post, without using Kiki and her grieving family as examples. This is not an attack on your viewpoints or anything like that, I simply request this out of respect for Kiki's family.
Thank you.
Rest in peace Kiki, we all love you.
Derek, this is a tragic time for Kiki's family and I'm sorry to hear that her passing has hit you personally so hard. It's always unfortunate to see someone die so young and my heart goes out to them as well.
I'd respectfully like to point out that part of the point of the post is to encourage parents to use science based medicine to help their children stay healthy and without pain. If this is what Alan believes to be the moral thing to do when treating any sort of illness (which I think it is based on my relationship with him) then keeping this post up is the best tribute he could make to Kiki's memory.
Derek, you and Kiki's family have my deepest sympathies. I wish you the best in this trying time.
To the writer:
I've had a chance to talk to Ami and I believe that he acted in the best interests of his beloved Kiki. You don't think that Ami didn't look at all the options involved here?
You need to put yourself into Ami's shoes: You've got a precious daughter hit by a cancer that would kill her. Doctors give her a grim prognosis with little to no chance of survival with traditional methods. They are able to operate and remove as much of the tumor as possible, but, the chemo and radiation treatments would be of little use or none. In fact, the treatments would likely HASTEN death.
So, what do you do: Be an uncaring b***** and let your daughter die? Or would you look at alternate treatments and sacrifice EVERYTHING: Your house, your job, your life savings and a lot more just to try to keep your child alive.
The Havivy Family got lucky that they have a celebrity for a friend who also sacrificed her time and her talent to raise over $100,000 because she believes Ami made the right choice.
We cannot always listen to the Nanny Staters who march to the FDA's drumbeat. When it came to Kiki, those people who would have insisted on traditional stuff or stuff strictly approved by the FDA would have killed Kiki far earlier.
And, sir, if you had a heart, something I doubt you possess, you'd realize that maybe Ami and Elana made the best choice possible. A human life is NOT something to be callously thrown away as you appear to possess and had you bothered to contact Ami Havivy before posting this, he would have kindly told you the rationale for the course of action he took...and the sacrifices he made. He did that out of love and compassion for Kiki. Only a selfish moron would have walked away from their own child.
Ami did the honorable, selfless things to preserve his beloved daughter.
In doing so, he gained lifelong respect from me. Why? Because he shows the true meaning behind preservation of human life. He did everything possible to save his daughter and they had an extra two years together, and, in doing so, Kiki found her way into people's hearts. People who are now grieving for this brave girl and coming together to support the Havivy family emotionally.
His friend, Tara Strong, also has my respect. She went all out for Kiki, even in her dying moments, Kiki heard Tara singing a song from "The Little Mermaid 2".
So, take your hatred and spew it on someone who deserves it and someone who can fight back...Scrooge had more of a heart than you do.
Splinter, I'm not angry, certainly not as angry as you seem to be. I'm saddened. I'm saddened that the Havivys financially suffered so that con artists and quacks could afford a bigger house. I'm saddened that Kiki's life was uprooted and she was subjected to unhelpful "treatments" when she could have been receiving actual medical care or simply spending more of her precious time with her family. That Ami believes that this was the right thing to do, that these alternative treatments helped Kiki doesn't make it true.
Hello. As a friend of Splinter48708, I have to agree with his reasoning. Also, as a close friend of Ami and Kiki themselves, I have to say that what they did was the right choice. With traditional medical treatments, little Kiki, who was only five at the time, was given at most a month to live. Yes, Ami and is family gave up everything to pay for treatments that insurance would not cover, putting them in great financial debt. But when a five year old's life is on the line if you don't do something, you'll do anything, and I mean ANYTHING to save the life of your youngest child. Just because you don't believe in alternative medicine, doesn't mean other people don't. Before Ami and his wife began h long journey to bring Kiki back to life, they did research. Tons and tons of research. They got testimonies from others who were completely cured, with no harmful effects, by use of alternative medicine. Ami traveled everywhere he could, even to Mexico, to find the best doctors he could possibly get for his daughter. Kiki means everything to her family and millions of people around the world. As was said, "keeping this post up is the best thing that could be done to honor her memory". I don't think so. And no one else that knows Kiki will think so. It's the worst thing that can possibly be done to "honor her memory". It's not honoring it at all. It's bashing her, and making her family's choices sound like the dumbest thing possible. But is it? No! With the choices that were made to save Kiki, they were the best thing that could have been done for her. Chemo and radiation, the "traditional" treatments, would have most certainly killed her, and as Splinter said, could have even hastened her death. So I'm begging you, in a not so nice way now, to TAKE THIS POST DOWN. NOW.
Alan,
Had I been as angry as you presumed me to be, I would have used far less civilized language and allowed my true feelings to erupt.
When Tara Strong tweeted to her 115K followers that Kiki had passed on, it took me HOURS to stop the tears from falling. Just the memory, right now, has me on the verge once more. Why? Because, as hard as it is for some people to understand, in the last 6 months I indirectly knew Kiki, she managed to work her way into my heart...into my soul. For that time, my life was richer...being able to pray for that miracle that you admitted was a rarity. I wanted to believe that Tara Strong or Ami Havivy would tweet out "Kiki is in full remission and is being sent home." None of us wanted to read that the last words Kiki heard was Tara Strong singing one of the songs from The Little Mermaid 2 as her heart stopped.
Kiki would have died far sooner than she did had Ami and his wife gone the route you advocate for the traditional stuff. The tumor that developed would have taken Kiki within 3-6 months, if they were lucky. Remember the late Peter Jennings? He had a stage 4 lung cancer that took his life in four months. Kiki likely had a stage 3 or 4 brain cancer that would have taken her within a similar time frame.
I'm all for traditional treatments when there is a possibility that they would prolong human life. In this case, I would have done the same thing Ami did and tried to prolong the life of this child.
So, while you're "saddened" that Ami and his family threw money at "con artists and quacks" for no reason save making those guys richer while Kiki suffered. I am saddened that their hopes and dreams stopped at 1:30 PM PDT. I'm saddened for Kiki's sister who will never get a chance to play with Kiki, grow up with Kiki, and for Ami, who desperately tried to save Kiki's life, even as it ebbed. I'm saddened for Tara Strong and her family because they went through this as well. And, I'm saddened immensely for Kiki. She will never grow up, go to college, get married and raise a family of her own. She will never hear a son or daughter call her Mom. She will never be called "Aunt Kiki" or "Grandma Kiki".
I know in my heart that the alternative medicine did prolong Kiki's life. I just wish you'd take the time to open your eyes a bit instead of appearing to be a shill for traditional medicine being the wonderful cure-all when sometimes, it isn't.
If you would have talked to Ami before blindsiding him with this article, maybe I would not be defending a brave little fighter who can no longer defend herself.
Kiki's death was tragic; no life should be cut so short. You both have my sympathies for your loss.
Alan, there is no greater monument to the victims of quackery than to remember them publically as such in hopes that sharing their stories will dissuade future people from being taken in by it, even during difficult times. I'm seeing a lot of appeals to popularity and magical thinking directed against you. We spend an astonishing amount of money every year investigating "alternative medicine" frequently even on the ones that are clear examples of snake oil, and the few that pan out get incorporated into actual medicine, and the rest just keep making money for the frauds who prey on those who are hurting. It is important to continue showing the harm that these frauds do to people who are at the worst points in their lives. I have watched dear friends throw away their health and their lives because they were convinced by the sort of quackery that is being espoused by your commenters and they turned their backs on treatments that had a hope of actually helping them. Thank you my friend and keep doing good work. Michael
Dear ArkansasAngel37 and Splinter48708,
Everyone wants to believe there is a magic cure that can save the one they love. Everyone wants to believe there's something they can do to make things right, to try harder or sacrifice more to save them. People who practice "alternative or complementary" medicine prey on these fears and desires and victimize the very people who are trying so hard to help their loved ones the best that they can.
No one here is saying that Kiki's parents didn't love her dearly or that they didn't think they were doing the right thing or that they didn't try desperately to help her. What happened to her is a terrible, sad story... and we're all very sorry that it ended this way.
I don't want to people to take advantage of those who are in that terrible desperate place. I don't want people promising false miracles to delay good, honest people from seeking out possibly life saving science-based medicine. The more people believe in "alternative" medicine, the more that will happen.
"Alternative medicine" isn't harmless and "alternative medicine providers" do routinely hurt and kill. I understand that you don't agree with me. If you want some concrete examples, here are a few that are just as tragic and sad as Kiki's story:
http://www.healthwatcher.net/Quackerywatch/Ca... http://www.csindy.com/coloradosprings/rx-for-... http://www.youtube.com/watch?v=6WD4XQ5dWAU http://seattletimes.com/html/localnews/200402...
Here's a more general list of people hurt by "alternative medicine": http://webcache.googleusercontent.com/search?...
Again, my heart goes out to you and to Kiki's family. Like you I am very sorry that she's died so young and that her loved ones and all the people who cheered and fought for her now have to face a world without her.
Eva,
Thank you for a well thought out reply. However, I need to state something here, without anger or vitriol here because I partially agree with your position.
There are certainly "snake oil" dealers out there who do more harm than good for their patient and those folks need to be outed -- kicking and screaming if need be.
But, there's alternate treatments that will either prolong a life or, hopefully, be a cure. Was Ami wrong for looking at alternate medicine? That's a choice my friend will have a lifetime to ponder and I am not going to answer for him. Ami's already tried to explain his viewpoint in this forum. He and his wife did that they thought was best.
It's not a choice I would wish on my worst enemy, to be perfectly honest.
The fact of the matter is that there wasn't anything anyone could do to save this young girl's life.
Here's an excerpt from Ami's statement after Kiki passed:
We have lost the war but not without a fight. There was NO MEDICAL TREATMENT for the type of cancer Kiki had, especially because of the late diagnostic by the hospital in Los Angeles and the Misdiagnosis of the tumor type by the same medical professionals. Without a doubt I feel that Chemo would have been fatal (32 month ago the doctors told us that Chemo may buy us 1-3 month may be a month or two longer if we are lucky). As parents we cannot deny medical treatment to a child if doctors feel it will be effective. Science and the medical industry went a long way but at this point of the game there is no cure for many illnesses including cancer. As parents we must try anything because a cure can come from any one.
Ami knew that he would not be able to preserve Kiki's life. But, as a father, he had to try. If there are any parents here, would you agree with me?
Splinter48708,
I'm not a parent, so I won't claim to understand the terrible ordeal that the Kiki's family have gone through on that level.
I want to live in a world where parents can be sure that what they're promised a treatment can do is based on facts, not snake oil or wishful thinking. There are many scientific studies about how effective (or not) "alternative" treatments are, but in most places there are no laws forcing "alternative" practitioners to portray what they're doing based on facts (there are such laws on a federal level for science-based medicine). In many places there's little or no regulation to protect people from being hurt by these sorts of lies.
I don't think parents are to blame when they make choices based on other people lying to them. Parents are just as much victims in these situations as children. I want to live in a world where a parent gets the information they need to make the best choices. It's hard enough to navigate a healthcare system with the pitfalls of human error and class privilege built into it without the snake oil and lies.
Beyond that, I want to live in a world where people face death differently. In this country we see dying as all about eking out a little more time... not about what we do with that time.
When I was in college I had a friend who's mother was given six months to live: no cure, no hope. So he left school and his whole family spent that time together. They went camping and drove across country. They went to Disney World. They made the most of the time they had left to say goodbye. I wouldn't say he was happy after she passed away, but he seemed to cope better because he got to spend those last months with her.
I'm not blaming Kiki's family. I'm sure they made the choices they thought were best and loved Kiki very much. I want our culture to as a whole to face this kind of end of life situation more gracefully so families like them won't feel the only solution is to fight a losing war at the cost of everything else.
So what kind of alternative medicines were prescribed. Wait, caught myself on that one. Only doctors can prescribe medicine. Okay, so what products were marketed to KIKI'S parents as alternative solutions to help Kiki live till 6 years of age? Just wondering?