The Great Debate

This month, Kristen LaBrie was sentenced to 8-10 years in prison after she withheld medication for her son's cancer, resulting in his death. This story has gotten us all thinking, "What would WE do in that situation?" There are many answers, and the following are two opinions from both sides of the fence. To read more about the LaBrie story, click here.



I just have to share this with a group that would understand the angst I feel. There is a current courtcase that issued a verdict of guilty to a mom who withdrew meds for her son with autism who was also fighting non-Hodgkin’s lymphoma. He was given an 85% chance of recovery and had obtained remission before she withdrew drugs. It relapsed and her son died. I feel the same way reading this article that I did the first time I took Josh to his first burn clinic evaluation. Josh was severely burnt at 15 months, and it was his treatment therapy that allowed us to discover his tumor, before it metastisized. (Talk about a mixed blessing.)

Anyway, after severe burn and skingrafting, you are given very strict orders when released from the hospital, including not going out in sunlight as the tender skin will burn quickly and seriously. At our first visit, we bumped into a boy who was in the next room...whose screams at night brought me to tears. His mother ignored the instructions, let him go to a Memorial Weekend picnic - all day - and the burn that resulted was actually worse than his original one.

This mother with the son with lymphoma was given an 85% chance of life for her son, something I would have dreamed for my son. Instead we were told "numbers don't always hold meaning when we are talking about kids. Even if he only had a 1% chance at survival, we will assume he is that 1% unless his body tells us otherwise." It was a gift from God to have that attitude, but what that didn't say was that my son actually only had a 15% chance to survive.

To also be given the term remission seems like a second Godsend. I remember how odd I felt given the term no evidence of disease. Yes, it was a great victory to be told we can't see anything. But it is an odd sense of relief mixed with worry about what if they can't see it? Remission always felt like such a stronger term...I always envied people who got that stronger statement of success.

For myself in the end, I think the emotion I feel is just such a strong sense of sadness for this child. Regardless of the side effects, regardless of the difficulty, I resigned myself immediately to the idea that I didn't get the luxury to worry about side effects, discomfort, etcetera. Lack of treatment equaled death. My son had to be alive to experience his side effects.

I remember the two hours I cried when we learned of his moderate to severe hearing loss. My wonderful audiologist allowed me to stay in her office saying "you can stay here for awhile and grieve his hearing loss before you re-enter the world of a mother of a cancer patient fighting for his life."

And afterwards, when the accutane caused issues with his sight and I was saying My son can't be hard of hearing and blind if he survives to the doctor who oversaw the therapy. The worries were severe. But even then I never considered stopping treatment; this was the only proven therepy at the time for neuroblastoma. In the end, despite being the side effect kid he proved to be, the sight returned, and our doctors decided on a great course of action that was awesome for us.

I guess in the end, I credit my ability to stay in very close touch with my specialists, and communicate all of my worries. We found the best options possible, and accepted the rough road we had. I realize that my responses are only one of many, and not all parents are as lucky. I respect all responses, because this world of cancer is a god-forsaken place for anyone. It is hell on earth. But it makes me so sad for these kids when the chances are in their favor to survive and thrive, and other choices are taken. It makes me cry for these special angels. In the end I hear myself whispering to this mother If you only could realize how lucky you were, you wouldn't have been so careless. It's not fair to say I know, just honest. And I cry for myself, for
having been in a position to make such a statement. And grateful to have my son asleep, curled up with our dog. I must give him an extra hug when he awakes.

-Mary Beth Collins


My perspective on this is a little different.

My healthy child was diagnosed with NHL at 4 years old...I was quoted similar 'rosy' survival rates straight off the protocol. But our oncologist never bothered to delve into the prognosticators specific to my child - like skin and medastinal involvement and LDH>800 (Tommy's was 1600+ at Dx). If he had, the odds of curing my child with that protocol would have been much, MUCH lower. This was something I discovered when we were blind-sided by a relapse 9 months into the 1-year protocol.

What I wonder is how could severely, non-verbal autism and PDD have played into the 85% cure rate?

And I remember cajoling, begging, bargaining, pleading, and waking my child up in the middle of the night to give chemo... It was very hard at times- and my child was very reasonable. I wonder what it would have been like if he had been developmentally delayed and perhaps fought me every step of the way?

They said she completed the first 4 phases of treatment, but she failed on the 5th maintenance- sometime in the 2nd year. What happens in maintenance? The visits reduce to once every 3 weeks for the 'big' chemo by IV and you go home with mountains of very expensive oral meds that you have to organize and schedule like a nurse. Not an easy task, especially for someone without medical training.

For me, it was a little over a year into chemo when I finally realized that the goal of the multiple years of chemo was to walk the fine line between killing the cancer and killing the child. When it dawned on me that they WANTED his counts to be continuously low, I started joking with the nurses when we would go to the hospital for chemo "Hey, he's feeling great, his counts are good, it must be time to hit him again!" It was the sadistic truth of what we were doing to my child.

Maybe this woman heard "remission" and thought everything would be fine. She said he "looked better" when he wasnt on the meds. Well, of course he did! Maybe the steroids made his autism worse, do we know? Maybe the mother didn't understand that the purpose of the prolonged and repeated torture by chemo was to keep the beast at bay? And how the heck did the doctors go by that long without noticing that the child's counts were probably higher than they should have been???

Or maybe she just had to decide between dinner for her family vs. $20/pill for Zofran.

I think the media has presented a sensationalized version of the facts and I have more questions than answers. Before you applaud the judge for throwing the book at her you might want to consider what this verdict does to YOUR rights as a parent.

And before you throw her into a nuclear reactor you might want to walk a mile in her shoes.


-Holly McCrea

What would YOU do? Feel free to email us at reddye48@gmail.com and let us know your thoughts.