Chemo May Be Forced on 17-Year-Old Cancer Patient

[K_Z]

I'm very much against "futile" treatment, and I usually believe a person has the right to decide what goes into his/her body, but in this case... I believe she should be forced to do the treatments.

I so strongly agree with you. Back in the 80's, therapies like bone marrow transplant were considered "aggressive" lifesaving treatment for children, and as such, the patients weren't "eligible" for DNR orders until they were essentially corpses. We did a lot of "bad match" bone marrow transplant kids, because there was no other option available, and the registry didn't exist yet. So we saw the "worst of the worst" complications from the induction total body radiation and chemo, and if they survived that, then the total body effects of graft versus host a few weeks later. Nightmarish stuff, all of it. We did have some positive outcomes, but it's hard for me to even remember those. Back then, we also saw a lot of secondary cancers in adolescents who had been treated as young children, due to the very high chemo doses back then. Heart failure as adolescents from chemo that damaged their hearts as toddlers, but "cured" the cancer, and the now-adolescents needed heart transplants. Such pain and heartache for the families. (A lot of that is minimized nowadays, due to lower dose protocols and less toxic drugs.)

We coded so, so many kids, over and over, that were clearly not survivable, and some of whose parents were at the point where they wanted to let go. It was so heartbreaking, and so emotionally stressful for the staff. The nurses in my unit actually had mandatory "group therapy" with psychologists once a week, to help us deal with all of the death, dying, and futility of much of what we had to do. I'm talking kids with total body GVH like 100% burn victims, DIC, etc-- and still, we had to jump on their chests, put them on the vent, pour literally gallons of blood products into them, etc. Clearly futile situations.

I'm so glad at how far we have come since then. But this is not "that" kind of case. Cassandra is salvageable, and I think it's right that we should try. I hope she has a good response to the protocols.

 

[Hiandmighty]

She says she is having only mild symptoms so far and her oncologist says she is tolerating chemo well.

http://wtnh.com/2015/01/10/teen-opens-up-about-forced-chemotherapy-death/

 

[K_Z]

The state sees it as a do-or-die scenario because Cassandra Fortin needs to undergo chemo or she will die from Hodgkin's Lymphoma.

But for a young girl and her mother, they said it's about a personal decision.

"She has lost her hair. She is sick,” Cassandra's mother Jackie Fortin said. “She has been in a hospital for four weeks."

Health law professor John Thomas at Quinnipiac School of Law said this medical question really directed the legal question.

"Hodgkin's Lymphoma is almost for certain a death sentence and the treatment is almost a certain cure,” Thomas said. “It's not experimental, not developmental.'

"What really hurt the back part of her case, she went to court told the court and said she would take the treatment, went home and then ran away,” Thomas said.

http://www.wsfa.com/story/27811609/connecticut-teens-chemotherapy-battle-sparks-national-debate

Lots more details of what has transpired since last summer and the official diagnosis in September in this article.

http://www.latimes.com/nation/la-na-teen-chemo-20150111-story.html

Cassandra, a resident of the town of Windsor Locks, developed a mass in her neck about a year ago. After numerous tests, biopsies and examinations, she and her mother received the official diagnosis in September. They decided to seek a second opinion.

During this time, doctors grew increasingly concerned. In court documents, doctors describe several missed appointments, say Fortin refused to let her daughter undergo a PET scan, and say the mother interfered during a needle biopsy, preventing it from being finished. Doctors notified the Department of Children and Families about Cassandra's case in October

.

In November, Cassandra said, the Department of Children and Families, as well as "nearly the entire Windsor Locks Police Department," surrounded her house when she was home alone, and banged on doors and windows. She hid in a closet, crying, and called her mother and her friends until her mother came home.

Cassandra wrote that she sat there for an hour as she heard her mother and the officials argue downstairs. At the end, she had to leave with officials, and was placed in the temporary care of a foster home.

In November, she agreed to start chemotherapy in exchange for returning home. After two appointments, she ran away for a week.

She described her departure: "I packed all my stuff after Mom fell asleep, left my house and met up with people who were willing to take me in and help me. I had no intention of returning or staying in Connecticut."

She said she came home because she didn't want her mother to face jail time for a decision she didn't know about.

 

[K_Z]

Link to Cassandra's op-ed piece in the Hartford Courant. (It's free to register for 5 articles-- you just need to put in a zip code and an email addy.)

It's a very poignant and sad op- ed, and IMO, really sounds like it was written by a teen much younger, and more naïve, than 17 years old. She is very, very scared and in complete "avoidance", using her fight for refusal of treatment as a coping mechanism, IMO. I really hope there are counselors involved and available to her and her mother. The mother has to be pretty scared, too-- that level of defensiveness and defiance from a loving parent in a situation like this one usually indicates intense fear. I feel a lot of empathy for them both-- they are feeding on each other's fear and anxiety, in an "us against THEM" struggle. IMO, the mother is trying desperately to "protect" her daughter, but in a horribly misguided and dysfunctional way. Just very sad all around.

http://www.courant.com/opinion/op-e...fe-0109-20150108-story.html?dssReturn&z=55309

 

[jjenny]

The girl may not realize the gravity of her condition and if there is any doubt by her mother, get a second or third opinion by medical professionals. As a generality, also, many teens have a sense of invincibility.

MOO

I think it's pretty obvious mother influenced the girl. Mother seem to think chemotherapy is poison. Their alternative treatment ideas appear to be vitamins and eating right.
Seems that girl would most certainly die if they were allowed to stop the chemo.

 

[gregjrichards]

I pray this young woman survives I can't imagine how scary it must be to have cancer at any age let alone at age 17 and younger. I'm recently out of hospital and was in a ward with some older men dying of cancer and it was heartbreaking it really puts your own problems into perspective. I don't have cancer they were short of beds and put me where there was a space.

 

[stormshine]

The thing that strikes me about what the girl wrote is that it says zero about why she wants to refuse treatment. It talks about her mother having wanted a second opinion and how much all of this has impacted her life, but nothing about why she feels the way she does. I think I would be more supportive of her if she was able to articulate her reasons, even if those reasons were religious reasons or strong beliefs about chemo being unnatural. If she could expressly state that she would like the state to allow her to die in peace. It doesn't sound to me at all, however, that she truly believes this will kill her without chemo. Talking about how it's made her miss work.

 

[Morag]

Without criticizing this particular mother, I cannot imagine a mother who would allow her only child to die without being able to express a single coherent reason for her decision to allow it.

 

[stormshine]

Morag, I'm somewhat under the impression that this mother is one of those who thinks diseases like cancer and AIDS are pharmaceutical conspiracies. It's very likely she honestly believes that chemo and not cancer will kill her child. Otherwise, yeah, I have a hard time believing a mother would be okay letting her child die from a treatable disease.

 

[K_Z]

I completely agree, stormshine. That came thru loud and clear to me, too. She talks a lot about missing her friends, and twice mentions she misses her cat. She's confused, sad, lonely, and very frightened, most of all, IMO. It does seem as though her mom picked up on her fear and anxiety about all of the diagnostic procedures, but erred, IMO, in choosing rebellion and avoidance instead of focusing on becoming more knowledgable about the situation. It does seem the girl and her mom have a close relationship so I hope the mom's focus now can shift to helping her daughter cope with chemo and heal. They have good reason to be hopeful for a full recovery. Let's hope they discover that soon. Hair loss and feeling awful from the chemo is only temporary.

 

[K_Z]

Morag, I'm somewhat under the impression that this mother is one of those who thinks diseases like cancer and AIDS are pharmaceutical conspiracies. It's very likely she honestly believes that chemo and not cancer will kill her child. Otherwise, yeah, I have a hard time believing a mother would be okay letting her child die from a treatable disease.

I got that same impression. I agree. I don't think either of them, from their comments, fully grasp that if this cancer is not promptly and aggressively treated, Cassandra will surely die.

 

[K_Z]

I hope we will open the news in a year or two and hear that this lovely young lady is in full remission, healthy and happy, and maybe even in college or pursuing a new career. That would be the most wonderful outcome to all this controversy. I'd hate to see the "fight" go on and on in court.

 

[MsFacetious]

The same could be said, and has been argued in the courts, regarding "religions" which do not condone or allow certain life-saving medical treatments, i.e. blood transfusions. While there is understandably some disagreement regarding chemotherapy and its side-effects, what does the mother of this 17 year old propose as an alternative? I am also confused how the future inability to have children is even in question if her life is at stake.

:waitasec:

MOO

I do know people who would prefer to die than lose their fertility.
They believe that they were put on this earth to bear biological children.
Those children need to be conceived the "natural way" or it "doesn't count.
If that is taken away from them, they prefer to die. Period.

For them adoption, IVF, egg freezing are not options. They are messing with God's plan. :dunno:
It may not be rational but I've seen it several times in a specific religion.

 

[MsFacetious]

I had a cousin who was married with a young daughter.
He was estranged from his entire family (except his father) because of his religious beliefs.
He began to get sick but they did not believe in medicine and doctors.

They tried to treat him with natural things even though they didn't know what it was.
Even after finally being diagnosed with Hodgkin's Lymphoma, they chose natural cures.
Because he was a married adult, his family could do absolutely nothing.

By the time his wife realized he was going to die... it was too late.
It was a few months that his mother got to spend some time with him.
They tried to treat it during that time but it had spread absolutely everywhere.

He died when his daughter was 7 years old.
2 days after Christmas and 2 days before his Mom's birthday. :twocents:

During the same time my best friend's son with Down syndrome was diagnosed with Hodgkin's Lymphoma.
After 8 months of the doctor ignoring the growing lump on his neck as a virus.
(Kids with Down syndrome get Leukemia, they almost NEVER get other cancers.
They are actually looking for the cure to cancer in people with Down syndrome.)

He did his treatment and came out of it successful and healthy a few years ago.
This in spite of the fact that only a handful of kids with Down syndrome have EVER had Lymphoma.
He is the ONLY surviving child with Down syndrome and Lymphoma in the world. :twocents:

 

[Hiandmighty]

Chemo is poison-- it's toxic. that part is true. But with proper care, the body has an incredible way of healing itself once the cancer is gone. The mom and daughter had no alternate plan for what they wanted to do instead of chemo, other than exercise and eat right.

 

[wendybtn]

Could there be other treatments for this type of cancer? High steroid treatment?
Cancer treatments of America use different methods than the awful chemo programs.
My husband has MALT lymphma and he is on IV steroids and a chemo type pill.
He has never been sick, no lose of hair .........the only side effect so far is his highs and lows.

But each cancer is individual, each reaction to it individual. She may temporarily lose her hair or be sick, but she will live and has a good chance of being a mom and doing many other things with her life.

 

[wendybtn]

I so strongly agree with you. Back in the 80's, therapies like bone marrow transplant were considered "aggressive" lifesaving treatment for children, and as such, the patients weren't "eligible" for DNR orders until they were essentially corpses. We did a lot of "bad match" bone marrow transplant kids, because there was no other option available, and the registry didn't exist yet. So we saw the "worst of the worst" complications from the induction total body radiation and chemo, and if they survived that, then the total body effects of graft versus host a few weeks later. Nightmarish stuff, all of it. We did have some positive outcomes, but it's hard for me to even remember those. Back then, we also saw a lot of secondary cancers in adolescents who had been treated as young children, due to the very high chemo doses back then. Heart failure as adolescents from chemo that damaged their hearts as toddlers, but "cured" the cancer, and the now-adolescents needed heart transplants. Such pain and heartache for the families. (A lot of that is minimized nowadays, due to lower dose protocols and less toxic drugs.)

We coded so, so many kids, over and over, that were clearly not survivable, and some of whose parents were at the point where they wanted to let go. It was so heartbreaking, and so emotionally stressful for the staff. The nurses in my unit actually had mandatory "group therapy" with psychologists once a week, to help us deal with all of the death, dying, and futility of much of what we had to do. I'm talking kids with total body GVH like 100% burn victims, DIC, etc-- and still, we had to jump on their chests, put them on the vent, pour literally gallons of blood products into them, etc. Clearly futile situations.

I'm so glad at how far we have come since then. But this is not "that" kind of case. Cassandra is salvageable, and I think it's right that we should try. I hope she has a good response to the protocols.

We had plenty of adults in the same position back in the 1980's but a doctor who can talk frankly to the patient and family about death and dying, useless treatments, comfort treatments, etc., can prevent a lot of that. Of course there are some who can never give up. We had one doctor, I swear, who, if possible, would have had us giving chemo on the way to the morgue. I know it is different in peds, but many people will listen if the info-giver is good and can pick up all the real fears the people have but won't voice.

 

[stormshine]

I had a cousin who was married with a young daughter.
He was estranged from his entire family (except his father) because of his religious beliefs.
He began to get sick but they did not believe in medicine and doctors.

They tried to treat him with natural things even though they didn't know what it was.
Even after finally being diagnosed with Hodgkin's Lymphoma, they chose natural cures.
Because he was a married adult, his family could do absolutely nothing.

By the time his wife realized he was going to die... it was too late.
It was a few months that his mother got to spend some time with him.
They tried to treat it during that time but it had spread absolutely everywhere.

He died when his daughter was 7 years old.
2 days after Christmas and 2 days before his Mom's birthday. :twocents:

During the same time my best friend's son with Down syndrome was diagnosed with Hodgkin's Lymphoma.
After 8 months of the doctor ignoring the growing lump on his neck as a virus.
(Kids with Down syndrome get Leukemia, they almost NEVER get other cancers.
They are actually looking for the cure to cancer in people with Down syndrome.)

He did his treatment and came out of it successful and healthy a few years ago.
This in spite of the fact that only a handful of kids with Down syndrome have EVER had Lymphoma.
He is the ONLY surviving child with Down syndrome and Lymphoma in the world. :twocents:

That is really amazing! I had never heard that about Down syndrome and cancer. I knew that they were looking at Down syndrome for insight into Alzheimers since almost all of them get it.

 

[joypath]

Without getting in too deep with specifics, members of WS have REALLY identified the core issues with the "family" decision to decline specific therapies! WOW, your insights into the mind set of the parental unit are awesome!

MULTIPLE opinions have been presented to the mother that treatment IS the "way to go"....documentation, published reports, dialogue with post therapy patients......all done in a very non-threatening manner. The court took on a huge volume of scientific data prior to the court date, had "outside" experts evaluate the medical history and exercised great restraint in writing the final decision.

I completely agree that there is a huge "disconnect" between the ramifications of effective treatment & "alternative" treatment, the emphasis seemed to be on the superficial vs the existential quality & quantity of life as shared by the comments, both child and parent! It was frightening to hear that this young lady was/is more concerned with her physical presentation to the world & her "goal" of providing grandchildren than the essential probability of a long, productive life after completing the chemo & remission leading to an "all-clear" life. For me, that and the "runaway" behavior she exhibited previously, demonstrated clearly that she is/was not eligible for "emancipated minor" status and that this decision was in her best interests.

 

[K_Z]

Morag, I'm somewhat under the impression that this mother is one of those who thinks diseases like cancer and AIDS are pharmaceutical conspiracies. It's very likely she honestly believes that chemo and not cancer will kill her child. Otherwise, yeah, I have a hard time believing a mother would be okay letting her child die from a treatable disease.

I agree. The mom does not think the cancer will kill Cassandra.

"She does not want the toxins. She does not want people telling her what to do with her body and how to treat it," Fortin said -- even if there's a good chance those toxins might be killing the cancer.

"They are also killing her body. They are killing her organs. They're killing her insides. It's not even a matter of dying. She's not going to die," Fortin said.

Fortin is permitted to see her daughter just twice a week during supervised visits.

http://www.cbsnews.com/news/mother-of-connecticut-teen-forced-to-undergo-chemotherapy-speaks-out/