Yes, Actually, I CAN Judge The Chemo Kid

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In a bizarre post at Salon, Rahul K. Parikh, M.D. says we shouldn’t judge a family that is on the lam, so that their 13 year old son won’t have to experience the hell of chemotherapy treatments for Hodgkin’s Lymphoma:

The story of Daniel Hauser, a 13-year-old boy from Minnesota with Hodgkin’s lymphoma, became tabloid fodder overnight. The boy and his mother are on the lam because the mother refuses, because of her beliefs, to authorize chemotherapy treatments for her son. Hodgkin’s lymphoma has a 90 percent cure rate with chemotherapy, and a 95 percent chance of killing a person without it. Chemotherapy will likely save Daniel’s life, and as a pediatrician I wouldn’t hesitate for a moment to recommend it.

But I would also like to turn down the volume on the talk-radio chatter and outraged editorials. That’s because nobody seems to be talking about what it takes to beat Hodgkin’s (or any other cancer). What it takes is a grueling regimen that can indeed give even a dying person pause. In fact, the Hausers didn’t refuse chemotherapy outright. They defied doctors and a judge’s ruling only after Daniel experienced some of its violent effects following one round. If you don’t understand why, listen to my friend, Arun Ponnusamy, 36, who beat acute lymphocytic leukemia. “Surviving cancer is one thing,” he says. “Surviving chemotherapy is another thing entirely.”

I call bullshit. First of all, every type of cancer has a different chemo regimen, and because the bulk of his post is actually about Ponnusamy’s treatments, to have any credibility, Parikh must first explain the similarities between Ponnusamy’s cancer and Hauser’s. But more directly to the point, and in direct contrast to Parikh’s absurd approach, we’re talking about saving the life of a child. Hodgkin’s treatments are brutal, but they usually “cure” the cancer. As in giving the kid a chance at a full life. Which makes enduring probably 12 cycles of chemotherapy not such a terrible prospect. I would know. I am a Hodgkin’s survivor.  

I endured those 12 hellish chemo cycles, and then five weeks of weekday daily radiation. That was seventeen years ago. I’ve mostly enjoyed those seventeen years. I now have two small sons. I met and married my wife. I’ve done a ton of writing, and played a ton of music. I’ve traveled widely. I’ve experienced every kind of culture, seen sunsets that made me shiver in ecstasy, and I can cook you a feast that will make your eyes water from purest joy. Who knows what this kid will experience over the rest of his life? Who knows what contributions he will make to the world? Who knows what I will, over the rest of mine?

Make no mistake: Hodgkin’s chemo is devastating. One of the drugs they gave me is called nitrogen mustard. It’s related to mustard gas. My entire body ached. There was a constant background noise of nausea, and a constant chemically taste in my mouth. A lot of foods simply tasted horrible, and yet I had to eat a lot to keep up my weight. It knocked out all the hair on my body, even my eyelashes. Every other day, I had to take four prednisones, which meant a lot of sleepless nights. My white cell counts eventually dropped almost to zero, which meant I had to give myself a daily shot of G-CSF. By the end, I could barely walk from bed to bathroom to couch. I was too weak even to play guitar. Reading made me dizzy. I only had the energy to listen to music or watch television, and when you have cancer, you really don’t want to be watching daytime television. It took months after the treatments were done before I could walk up stairs or up a hill without wobbling. But it is seventeen years later, and I am alive. I had a second cancer scare, last year, but it turned out to be nothing. And I am alive.

I sympathize and empathize with the Hauser boy. I know what he’s facing. But he is a child and his parents should be his protectors. Hodgkin’s Disease is one of the great medical success stories, for it used to be almost always fatal. Now, it is usually treatable and survivable. The process is hellish. But there’s plenty of time for death. This kid deserves a chance to live.

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    • Turkana on May 22, 2009 at 8:36 pm
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    you’ll never recognize me, now, so what the hell?

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  1. I am with you 100%. Mom had cervical cancer and without chemo and radiation she would be dead right now. It was not fun, it was not easy and there have been after effects which are unpleasant to say the least, but if you ask her, she would not trade seeing her grandchildren born nor these last 8 years of life just to have missed the pain of chemo and radiation.

    I try to be tolerant of peoples religion (having none myself it takes a little more work than I would like) but this is not a case where I am willing to do so. This mother is letting her beliefs end her child’s life.  

    • RiaD on May 22, 2009 at 10:02 pm

    i am ever so glad you survived.

    but.

    shouldn’t everyone have the right to make their own decision?

    imo, the courts shouldn’t be making these decisions. like terry shiavo. imo, it was up to her husband to determine the best course of action.

    kids, parents, spouses….. it is the same to me.

    individuals should be allowed their… freedom? to decide.

    there are always extenuating circumstances…..individual to each situation.

    what if having this chemo for one child would bankrupt this family? what about feeding & clothing the others. (not to mention their claim of religious reasons)

    & one should be allowed to pursue alternatives, no?

    many times eating correctly (real food w/o additives/preservatives) does change disease.

    http://www.reuters.com/article

       

    Comprehensive lifestyle changes including a better diet and more exercise can lead not only to a better physique, but also to swift and dramatic changes at the genetic level, U.S. researchers said on Monday.

    i’m NOT saying real, good food can reverse all disease.

    but. i do think it can do a LOT.

    also.

    i don’t want the courts/gov’t telling me to have/not have an abortion, to have/not have babies, to have/not have chemo or radiation or any other medical procedure…. including the shot at the end to put me outta my misery.

    (why do we do this for ‘pets’ but not people? do we care less of people?)

    my health & how i approach it is MY decision. & if i’m unable it’s mrD’s decision. NOT the gov’t/court.  

    • Inky99 on May 22, 2009 at 10:09 pm

    I find the whole media aspect to this simply one more example of a “human interest story” being sensationalized to the point of being nothing but an enormous distraction to what is really going on in the world.

    It’s another “Natalee Holloway” kind of thing.

    Or having game-show results be “major” “breaking” news stories.

    It reflects the pathetic state of the mainstream media.

    That being said, wow,  I have a close personal friend going through chemo and another going through radiation right now.   My Mom also went through it, twice.  It’s just godawful.   I have often thought I would just opt out of that crap, too, under certain circumstances.

  2. I work here.

    I am a pediatric oncology RN.

    I kinda liked you before anyway.

    I think I don’t need to explain my views further.

    Claps for Turk.

  3. have that child smoking a spliff while being treated then a child with a crazy parent trying to take him to mexico for his funeral.  His mother, reguardless of the good intentions she has to prevent her child from suffering, should be charged with attempted murder.

    Thanks for the diary yo.

    • J Rae on May 23, 2009 at 12:53 am

    for writing this. I have seen so many posts suggesting that the parents have the right to opt for no treatment I could scream.

    If they were deciding between 2 equal treatments, ok.

    Or if there was only a 5% chance of a cure.

    But they have basically chosen to let their child die.

    The Dad doesn’t get a free pass here, no matter if “now” he says he would agree to treatment.

    Yeah he’ll agree now, with prison hanging over his head if he admits that he was part of the plan to remove the child.

    But I think that what really bothers me is that there are people out there that know where this child is. And they are willing to let him die rather than call the authorities.

    After he is dead they will deny any kind of responsibility saying that only the parents should make this decision.

    OK, bitchy Mom rant done.

    • TMC on May 23, 2009 at 1:05 am

    I hope they find this child soon. The parents are just loony. They are Roman Catholic and even those who believe in spiritual healing believe also in conventional medical treatment. The judge was correct in his decision.

     BTW, I posted this at Dkos, but I will repeat it here. You have a great smile, beautiful eyes and a great heart. May the Goddess protect you and this child. May she bless you both with long, healthy and fruitful lives. Blessed Be

  4. This doesn’t strike me as particularly dopey.

    If it were up to me, I’d leave it up to the 13-year old.

  5. Where do draw the line with Judges ordering medical treatment?

    90%  (survival)

    50%

    4%

    .00003

    ?

    For a hangnail?

    While I think I would not make the decision this child, and these parents have made, it’s not my choice to make, nor should it be up to a judge.

    • hester on May 23, 2009 at 2:47 am

    And thank you for having the Chemo so you can be here to  post this. I am appalled at the parents. It’s one thing for an adult to refuse treatment for him/herself. It’s another to doom your child. I am an M.D. so this is really upsets me. It’s usually curable, as you know. Shaking head in disbelief.

    • halef on May 23, 2009 at 2:50 am

    about your personal experience, and all the best wishes to you.

  6. of whom you can judge.  But having had chemo doesn’t make you a better judge necessarily, just maybe a judge with a more firsthand relationship with the experience.

    Is he a child?  If so, aren’t we all children?  If you mean he is under 18, well then, sure, but we know that’s an arbitrary line — old enough to be shot in war but not old enough to drink, etc.  An arbitrary line, because a true dividing line between child and adult is beyond society’s ability to draw.

    Some 13-yr-olds are very childlike and immature.  Some aren’t.  I don’t know this particular 13-yr-old and I bet very few of those commenting here know him either.  The fact that he said he would punch and kick anyone who tried to give him chemo says that he is asserting his right to make this decision, and I think that should count for something.

    I don’t deny that chemo works in some cases.  I do deny that doctors always make correct judgments.  So here we have conflicting imperfect judgments, some with schooling on their side, some with individual liberty on theirs.  Along with a lymphoma survivor (yes, he did chemo and radiation), I’ve known some very educated people in my life, and I think granting authority based on how many years of fantastic schooling you are credited with would be a hell realm.

    • Edger on May 26, 2009 at 1:49 pm

    Yahoo News, Monday

    NEW ULM, Minn. – A 13-year-old cancer patient and his mother, who fled Minnesota last week to avoid court-ordered chemotherapy for him, returned voluntarily Monday, and the boy was being evaluated by a doctor, a sheriff and the family’s attorney said.

    Daniel Hauser was “immediately checked over medically” when he and his mother arrived on a charter flight at 3 a.m., Brown County Sheriff Rich Hoffmann said.

    He did not say where the pair have been since they missed a court hearing last Tuesday, or whether Daniel received medical treatment for his Hodgkin’s lymphoma while they were gone.

    “It is a good day as Daniel and Colleen Hauser have been safely returned to Minnesota,” Hoffmann said.

    Because Colleen Hauser returned voluntarily, a warrant for her arrest was lifted. Hoffmann said he could not comment on whether there could be possible charges against her.

    Daniel Hauser was being evaluated at a hospital in the Twin Cities on Monday, according to Tom Hagen, an attorney at the law office representing Daniel’s parents.

    • TMC on May 29, 2009 at 9:21 pm

    According to several reports, he will also receive the alternate treatment that his parents had wanted, many cancer patients do. One of my closest friends lost her Dad to Hodgkin’s in the late 50’s. Her mom would not let her even see him the last month before he died. She is an oncology nurse. We talked about this case a few times and she understood how upset the parents were about Daniel after the first round of chemotherapy. She said the kids can get very sick but that the alternative of dying is worse.

     I see quite a few cancer patients that come to the ER. Usually, it’s a day after they have had chemotherapy. Mostly the complaint is weakness, nausea, vomiting and dizziness. Mostly, they are discharged after treatment with anti-emetics, fluids (many just get dehydrated) or, occasionally, a blood transfusion. I rarely ever find out the end result of their treatment, except for one, a nurse who was part of our staff. She had breast cancer that was detected very early but opted for a double mastectomy because of her family history. During her chemotherapy, we would see her frequently. I think sometimes she would come in just to be around the chaos of the ED to get her through. She came back to work last summer but will be leaving us again because she is pregnant with her first baby.

    I will keep Daniel & his family in my thoughts & prayers. May the Goddess give them strength. Blessed Be.

     

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