Parents fight state against cancer treatments

http://www.uppermichiganssource.com/news/story.aspx?id=683541&hpt=us_bn6#.TrlR-HJzw84

J.'s next battle will take place in a Marquette County courtroom. Following the advice of doctors, the state of Michigan will take the Stielers to court petitioning to the jury that Jacob's parents are negligent in refusing additional therapy.

While the Stielers are passing on conventional treatment, they say they are aggressively seeking alternative methods for nourishing Jacob.

I support the parents and the family. The state should not make this decision.

I think it should be the parent's decision. He has already had a dozen rounds of chemo and radiation. Who knows what problems he will have later in life from so much chemo and radiation.

It's hard to know what to make of this story. All I've been able to find is the story from the family's perspective. The DHS is unable to comment and HIPPA prevents the doctors from discussing the case as well. Ewing sarcoma is a rare disease. I feel like there has to be more to the story. It's hard for me to imagine parents who have already once consented to successful conventional therapy not being willing to proceed with all necessary avenues to ensure the best possible prognosis for their child without valid reason. I wonder if an ethics board has examined his case. In any event, going through cancer treatment is often such a traumatic experience for all involved. I wonder if this family needed more psychological support as well as better symptom control for their son during his initial rounds of therapy. Did they seek second opinions? What was the relationship between the parents, Jacob and the oncologist? I don't know whether I support their decision or not, there are just too many questions.....

animlzrule said:

It's hard to know what to make of this story. All I've been able to find is the story from the family's perspective. The DHS is unable to comment and HIPPA prevents the doctors from discussing the case as well. Ewing sarcoma is a rare disease. I feel like there has to be more to the story. It's hard for me to imagine parents who have already once consented to successful conventional therapy not being willing to proceed with all necessary avenues to ensure the best possible prognosis for their child without valid reason. I wonder if an ethics board has examined his case. In any event, going through cancer treatment is often such a traumatic experience for all involved. I wonder if this family needed more psychological support as well as better symptom control for their son during his initial rounds of therapy. Did they seek second opinions? What was the relationship between the parents, Jacob and the oncologist? I don't know whether I support their decision or not, there are just too many questions.....

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I too, am not so sure I support this, animlzrule. I recently had a young person in my life die from cancer. Upon his 18th birthday decided to discontinue treatment, and passed within a couple of months. His cancer was aggressive, but treatable.

Who are we to decide for others, but I feel deeply when a young one dies when they could be saved.

Also, full disclosure...I do not believe in these alternative treatments. None have been proven to work. Let's not experiment with things if there are still medical options. Let's not experiment with our young ones either. JMO

If this was the child's decision, I support him.

I did a quick scan of some info found through google and it appears that the additional treatment is warranted to combat recurrence and metastasis. Chemo, then surgery to remove the tumor, then more chemo.

I couldn't tell, from the article about the boy, exactly what his course of treatment has been.

Here's a link to one of the articles.

http://sarcomahelp.org/learning_center/ewings_sarcoma.html

Advances in chemotherapy (CTx) have significantly improved survival. Surgical removal of the primary tumor generally occurs after a course of initial chemotherapy. Chemotherapy is started first to attack any potential tumor cells that have broken off from the main tumor (metastasized) but have not yet been detected by the staging studies. Furthermore, this gives the surgeon an opportunity to better plan his or her surgery, which can be very involved, see Figure 4. Surgery is then followed by further chemotherapy which may be adjusted depending upon the response of the tumor to the drugs. If the tumor has been highly responsive to the drugs a better outcome may be predicted in some cases. In ESFT, radiation therapy may be used in conjunction with or instead of surgery depending upon location and extent of disease. While all aspects of treatment have improved dramatically over the past 30 years, it is very intensive therapy. Treatment generally lasts a year. In essence, an ESFT patient and his/her family is giving up one year of life to hopefully get the rest of them back.

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Trident said:

If this was the child's decision, I support him.

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Me too. Only he knows what he felt while undergoing those treatments. It would be one thing if he still had cancer, but as of right now, he does not. The best doctors will admit that they don't know why one person's cancer goes into remission and another's does not. Some form of cancer, especially the rarer forms aren't understood that well even by the people that have made it's study their live's work. The doctors say that there is a huge chance that his cancer will return and will return worse than it was. But they don't really know, because if they knew half as much about it as they make out in this article, no one would ever have to worry about cancer again, because they would have a cure, a vaccine, and it woul dbe no worse than a summer cold.

What happens the next time there is an experiemental treatment that is unproven, not covered by insurance, and potentially harmful in both the short and long term? Will parents next be forced to subject their kids to that kind of treatment? This child no longer has cancer. They are denying him not active medical treatment, but rather denying him preventative care that may or may not be effective in the long run. It's time for the state to stop putting their nose where it doesn't belong.

I kind of view it as weeding your garden. Chemo is like weeding the garden; weed the garden and all the weeds are gone; go back in a month and there are new weeds. That's why the doctors say he needs more chemo. Alternative medicines do NOT work. Everyone I know who has tried them is dead. Chemo is no fun, but it is this kids best chance of fighting it. If he stops too soon, the weeds are just going to grow back.

I did 6 months of brutal chemo 7 years ago. Many times I wanted to quit. I remember my husband dragging me to the car, and telling me, "we've come this far, we aren't going to quit now." I hated him for that then, but 7 years later I am pretty glad he made me do it. And, yes, not everyone makes it even with chemo and rads, but it is the best chance you have.

These parents need to toughen up, and help this kid fight. Just my 2 cents worth.