Who Should Decide?

[Cathleen]

Virginia teen fights for right to pick Hodgkin's treatment

Updated 7/11/2006 11:33 PM ET
By Martha T. Moore, USA TODAY


Abraham Cherrix, 16, went through chemotherapy for Hodgkin's disease that left him so weak that his father carried the 6-foot-1 youth from the car to the house. Doctors tell him he needs a second round of chemo to get rid of the cancer that reappeared in February. Abraham says no, and his parents are backing him up.

Now the Virginia family is in juvenile court, the parents are charged with medical neglect and the Accomack County social services agency has joint custody of Abraham. The agency asked the court to order the boy to undergo chemotherapy.

A court hearing continued Tuesday. Each side plans to appeal an adverse ruling, family lawyer Barry Taylor says.

Abraham and his family are treating his cancer with an herbal remedy four times a day and an organic diet under the guidance of a clinic in Mexico. The remedy, called the Hoxsey method, has not been clinically tested, and there is no scientific evidence that it is effective, the American Cancer Society says.

Although he is not old enough to cast a vote or buy an alcoholic drink, Abraham argues that he is old enough to make decisions about treatment to save his life.

"This is my body that I'm supposed to take care of. I should have the right to tell someone what I want to do with this body," he says. "I studied. I did research. I came to this conclusion that the chemotherapy was not the route I wanted to take."

Abraham — full name Starchild Abraham Cherrix — lives with his four younger brothers and sisters and parents in Chincoteague, where his dad, Jay, runs a kayaking outfitter and his mom, Rose, home-schools the kids. A lump on Abraham's neck discovered last year turned out to be Hodgkin's disease, which has a high survival rate with treatment — 85% of patients are alive five years later, according to the American Cancer Society.

Chemotherapy and radiation left Abraham bald, racked with fevers and too weak to play tag with his siblings. "His legs would buckle under him. It pretty much devastated him," his mother says.

Another round, at higher doses, "would kill me, literally. No joke about it," Abraham says. "The first round of chemo almost killed me in itself. There were some nights I didn't know if I would make it."

Mary Parker, director of the Accomack County Department of Social Services, declined comment, citing privacy law. So did a spokesman for Children's Hospital of The King's Daughters in Norfolk, Va., where the Cherrix family says Abraham was treated.

In Texas last year, a court ordered 13-year-old Katie Wernecke to live in a foster home for five months while she received chemotherapy for Hodgkin's disease. Her parents wanted her to take intravenous vitamin C instead. The court returned Katie to her family after she finished chemotherapy and allowed the alternative treatment. Her website says she is "doing very well ... but she is not cancer-free yet, so there is still a battle to win."

Other families refuse treatment for children for cultural or religious reasons: In 1999, a Massachusetts court ruled that a hospital could give 17-year-old Alexis Demos a blood transfusion after a snowboarding accident even though her Jehovah's Witness faith led her to refuse it.

In deciding whether a child or parents can refuse medical treatment, courts consider the child's age and maturity and the family's reasoning in declining treatment, but also whether the treatment has been shown to work and whether the child has already had the treatment, says Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania.

"The easiest cases to get a court to order treatment is when the children are young and the treatment is absolutely as efficacious as we have," Caplan says. That, he says, includes treatment for Hodgkin's disease, which "has a proven track record."

"The hardest ones are 17-year-olds who've had (the treatment) before, it doesn't work that well, and they sound like they really understand what's going on," he says.

Rose Cherrix says her son is getting medical care, just not the care that his doctors recommend. "We tried their way, and it didn't work," she says. "We truly want to see him get better, and whatever it takes for him to get better we will do. But if he doesn't have a very good chance of coming through this chemo, which he doesn't, I'd much rather him have quality of life."


src

 

[Nightbird]

I heard about this case earlier today.

I'm undecided on which side I think is right. On the one hand I don't think an untested 'herbal' remedy is the way to go for a cancer treatment.

But on the other side, I know how powerful herbal treatments can be and I support the patients and the families right to choose.

So I'm not sure.

 

[EJFan]

i heard about this on CNN this morning. at it's simplest level, it's a matter of how much government intervention is appropriate. frankly, our society has brought us to the point where we rely on the government to look out for us as individuals and we deserve to have these kinds of problems as a consequence of that permission we've given them.

 

[Tele2047]

I think it should be the kid's decision to take the therapy or not. He's already of legal age to work, and to have sex. If he is mature enough to make a decision about having a child, he should be mature enough to make the decision about his own life.

 

[Guest]

 

[TBKahuna123]

Here's the problem at it's core: Small children have died because parents with (IMO) wacky beliefs have denied them basica medical treatments. I remember the cases of kids who would get the flu and die of dehydration because their parents believed that prayer was what was needed, not a doctor. I do believe that these children need to be protected from parents whose views put them at risk of death.

But we aren't talking about a small child here, we're talking about a young adult. We aren't talking about parents refusing to let their child be treated, we're talking about parents backing up a decision by a young man they love. The blood trnsfusion thing, yeah I think it's silly, but that was her decision, not her parents. This is a kid who has gone through chemo, it destroyed his life, and he has decided that it's not worth it. I watched my uncle live at my house and go through chemo for months when I was 17. By the timehe died he was nothing but a skeleton, the cure was worse than the disease. In the end it made him give up the fight, not the cancer.

This kid has made a decision that he would rather risk death than have his quality of life destroyed. Let's not forget that he truly believes the first round almost killed him, which it well may have. This isn't a case of "we don't believe in that", it's a case of "I'm not fucking going through that again!"

I agree there are cases where kids need to be protected from neglectful parents, becasue God knows there are a lot of bad parents out there who just don't give a shit. DO you think that's the case here? How many parents here would be able to let their son make a decision that could well take away his best chance at survival? How many could fight for his right ot make that choice? And you want to punish them for it? Bull shit.

I don't care how old the kid is, any child who has gone through chemo is not longer a child. The pain, the illness, the devestation to the body, enduring that forces maturity on someone. This young man has earned theright to make his own decisions, and it's not up to the ACS. I'm sorry but I don't think they really care about this boy, they just want to put another statistic on the board. That's their business, not child welfare.

 

[bobsgirl]

I don't care how old the kid is, any child who has gone through chemo is not longer a child. The pain, the illness, the devestation to the body, enduring that forces maturity on someone. This young man has earned theright to make his own decisions, and it's not up to the ACS. I'm sorry but I don't think they really care about this boy, they just want to put another statistic on the board. That's their business, not child welfare.

I agree wholeheartedly. He appears to be a thoughtful, intelligent young man. He and his parents serve all the support and compassion in the world, not a government agency chasing after them.

One thing about the article that jumped out at me is the fact that the reporter made a point of saying that the young man's name was "Starchild." How is that relevant to the situation? Unless there may be some belief that parents who give their child a wacky name like Starchild are somehow not responsible enough to help their son carry out his wishes. If that's true, God help all the children of celebrities who carry unusual names.

 

[Eilan]

Saw this young man and his father on TV last night.

If the state forces him to get chemo, will the state be picking up the tab?

 

[bobsgirl]

Saw this young man and his father on TV last night.

If the state forces him to get chemo, will the state be picking up the tab?

And what will the state say if he does not survive chemo? Oops?

 

[EJFan]

And what will the state say if he does not survive chemo? Oops?

excellent point.

 

[Eilan]

What I find unbelievable is that at one point the family had been prohibited from leaving Virginia. I'm not sure if this restriction has been lifted.

The next hearing is on Wednesday, I believe.

 

[EJFan]

meanwhile... during this whole debate the government's engaged in over chemo... i'm becoming anemic, courtesy of the ever-growing mosquito population. fuckers.

SPRAY SOMETHING!

 

[Guest]

 

[EJFan]

problem is, back in the late 60s and 70s, they sprayed everything!

i know... and that's probably part of the reason this kid has cancer. only thing is that now a mosquito bite can kill you. not that i'm paranoid about that but there's always a trade off.

 

[Guest]

 

[Cathleen]

I think Abraham is competent to make this decision, his parents obviously believe he is and since they are his legal guardians I believe the state needs to butt out.

I also have seen the effects of chemo and many other treatments for illnesses. The decision was made by the patients to accept or reject the treatments. That's not to say the decision was made without consideration to their loved ones but the final decision was theirs. Twice I accepted the decision of loved ones to stop treatment and knew it meant their death would be the outcome. It was painful but it was the most loving experience too.

I do not see neglect here. I am a believer in attitude when it comes to fighting the good fight. Abraham truly believes the chemo will kill him, I believe him because he has experienced it and knows his body far better than anyone. I came very close to dying and while there were times I honestly felt like dying I believed I would live. I also knew when there was some other problem that wasn't diagnosed until I kept pushing the doctors. I believed in the treatment and my doctors and it made a difference but above all I was the one that knew my body and how I felt.

My heart goes out to the family and Abraham and all the loved ones.

 

[Cathleen]

Saw this young man and his father on TV last night.

If the state forces him to get chemo, will the state be picking up the tab?

And what will the state say if he does not survive chemo? Oops?

Both excellent points. I didn't think about the cost. If the state mandates it they should pay, at least in my mind.

 

[SweetErika]

I'm on Abraham's side here. If my child was mature enough to understand the benefits and consequences of their disease and treatments, I'd support them in declining. However, with an 85% survival rate, I'd try to find a compromise, like maybe a lighter chemo regimen combined with alternative therapies. I'd likely do the same for myself.


On a somewhat related note (if I can hijack/add topics, Cate?)...
Hubby and I were just talking about whether or not we'd pursue treatment if the 5-year survival rate was low. So far, we've had one family member treat aggressively and have a low quality of life, another did some radiation then just went fairly peacefully, and now a third (who had a hell of a time with chemo a decade ago) is trying to make those decisions.

Would you fight it for yourself and your family, trading quality for quanity? Or would you shoot for staying as comfortable as possible, and try to make the most of the shorter time you have left?

Would you resent a family member's decision to decline treatment?

 

[Eilan]

Would you resent a family member's decision to decline treatment?

I would and I wouldn't--how's that for a wishy-washy answer? I guess that what I mean to say is that think I'd understand and respect my family member's decision, but I'm also a little bit selfish.

I've posted in other threads about my grandmother's illness. While what she has isn't cancer, a lot of people who have her illness eventually develop AML (the type of leukemia that doesn't respond well to chemo). My grandma's said that if she gets to that point, she would likely decline treatment. She's been on a medication that isn't exactly chemo, but until recently the medicine's side effects made her feel pretty damn crappy all the same.

Of course, she might change her mind, but we'll deal with that if/when it happens.

 

[Cathleen]

I'm on Abraham's side here. If my child was mature enough to understand the benefits and consequences of their disease and treatments, I'd support them in declining. However, with an 85% survival rate, I'd try to find a compromise, like maybe a lighter chemo regimen combined with alternative therapies. I'd likely do the same for myself.


On a somewhat related note (if I can hijack/add topics, Cate?)...
Hubby and I were just talking about whether or not we'd pursue treatment if the 5-year survival rate was low. So far, we've had one family member treat aggressively and have a low quality of life, another did some radiation then just went fairly peacefully, and now a third (who had a hell of a time with chemo a decade ago) is trying to make those decisions.

Would you fight it for yourself and your family, trading quality for quanity? Or would you shoot for staying as comfortable as possible, and try to make the most of the shorter time you have left?

Would you resent a family member's decision to decline treatment?

Hijack away Erika, your questions and thoughts are worthy of consideration.

From personal experience with my mother and uncle (her brother), both having cancer and were faced with these questions, I can say there is so much that goes into those decisions.

Treatment and survival rates are just one part of the puzzle in my opinion and experience. My mother had fought her cancer for over ten years before being faced with chemo, well, let me qualify that better. Chemo was always lingering but she wanted to do everything - absolutely everything - before being at the chemo door. She feared it all that time and frankly for damn good reason. It wasn't until her cancer (metastatic breast to bone) had taken her mobility by breaking her pelvic bone first then ... too ugly to type, (suffice it to say bones would break without moving or touching her).

She faced chemo and made the decision to accept it. I know she did it for many reasons, one major reason was us, her family. If I knew what would happen I would have told her not to do it. It did not extend her life and it made the end of her life extremely painful and ugly. Was her experience with chemo made worse by all those years of fearing it? I don't know. I do know our minds are powerful when it comes to life, surviving and outlook.

Her brother was diagnosed with metastatic bone cancer (origin unknown) a few years later. He followed the ''general'' path, radiation first and some mild drug therapy. He decided about half way through radiation to quit. It was stunning actually. Not that he quit the treatment but by his outlook on his illness and his life and death. Perhaps because he was a Roman Catholic Priest his faith allowed him to let go sooner. He loved us but he knew it was time. I remember being six years old and he'd say he was ready to go - so his outlook seemed quite fixed early on and I think that truly matters.

OK, so these two people, much loved and very loving, took two totally different routes and in the end the results were the same. The paths were different. Another interesting point to these two people was that they watched their father die at the age of 46, when they were 14 and 13 respectively. My grandfather died a very ugly death by all accounts, not surprising as he died in the 1930s, but the impression on my mother and uncle was lifelong.

It's such a complex issue. There is so much to consider, some organic and much not. Our mindset is key in my opinion. I have had choices to make in my own health issues, why I chose one path over another is almost a living thing. My mindset (which includes considering my siblings and their families) is at the heart of the matter firstly, then medical information. I will admit being single with no children takes some of the sense of ''duty to fight" down a notch, (noting that a notch isn't that large a step).

 

[carrie-on]

I watched my father die a very painful death after battling cancer. He did all the things that the doctors said was "best" for him and he wasted away in less than a year after finding it.
As far as Abraham goes..I listened to him on the radio last week talking about this and he said that it wasn't so much the fight about the treatment as it was about our rights as Americans to seek the treatment of our choice. He feels that if they can do this to him then they can do it to everyone and that is what's he fighting for
The Hoxsey method is not an untested "herbal remedy". It is one of the oldest alternative treatments in this country and at one time he had 17 clinics open. The American Cancer Society says that there is no proof that Harry Hoxsey's treatments worked but then they would say that. If there was a cure for cancer there would be no need for the American Cancer Society.
I don't have any personal experience with the Hoxsey method nor have I known anyone who has tried it but as a hospice nurse,I see many people who tell me that if they could try herbal remedies instead of chemo,then they would.

 

[Cathleen]

Carrie, you have my eternal gratitude for being a hospice nurse. Nurses are my favorite people, they have helped me, my loved ones so much... but hospice nurses are incredible blessings in times of great stress.

 

[carrie-on]

Carrie, you have my eternal gratitude for being a hospice nurse. Nurses are my favorite people, they have helped me, my loved ones so much... but hospice nurses are incredible blessings in times of great stress.

Thank You Cathleen it is a hard job but the appreciation that is shown by family members is very gratifying.
I just saw in the news that Abraham Cherrix has been ordered by the court to report to the hospital on Tuesday for chemo. His parents are appealing it.

 

[it's just me]

Carrie, you have my eternal gratitude for being a hospice nurse. Nurses are my favorite people, they have helped me, my loved ones so much... but hospice nurses are incredible blessings in times of great stress.

A very special kind of person to be able to provide comfort and care under those conditions...

 

[bronntanas]

He's old enough to make an informed decision and the government should butt out. I watched my one of my sisters do chemo for breast cancer and even though she is cancer free, she's also sterile, has brittle bones, and a compromised immune system. She tells me she's greatful for every day she's gotten but she lives every one of those days in pain and she's not sure at points the trade off is worth it.