ABC’s new show “The Good Doctor” did something amazing this week. They did a show that featured Langerhans Cell Histiocytosis. The fact that anyone outside of a hospital knows the name of this rare cancer that nearly killed my baby is amazing. I am thrilled the name got out there. But rather than bringing awareness to how dangerous this disease can be, how hard it is to beat and how often the children that have LCH die from it…. Rather than those VERY important things, the show downplayed the disease. They did manage to discuss misdiagnoses (in that they discussed the osteosarcoma being the misdiagnosis, and the patient actually having LCH), but they didn’t touch on how often it’s misdiagnosed or not diagnosed at all until it’s too late. The show screwed up. The Script was bad.
It didn’t refer to it as cancer, which it is. The show’s script had a patient possibly misdiagnosed with osteosarcoma, but really having LCH, and then the physicians stated that it could easily be treated with prednisone…. a steroid. Predisone. And that’s it.
The patient ended up actually having osteosarcoma, and LCH was just dangled as an “easy fix.” A way out of dying. And the fact that it’s cancer is NEVER mentioned. I’m a suburban house mom that can’t even right now.
I feel betrayed. ABC dropped the ball. They should have hired someone that could do research on the diseases it supposedly addresses. They should know that if they downplay the severity of a children’s cancer, they risk hurting children. Sounds a bit extreme? Let me explain.
Langerhans Cell Histiocytosis is CANCER. If it’s considered multisystem, meaning it’s found in more than the skin or bone, it’s VERY hard to kill. If it doesn’t respond to the first line of chemo, WHICH IS NOT JUST PREDNISONE, it’s considered refractory. And while studies differ on the survival rates for refractory multisystem LCH, they all say the same things. The odds aren’t good. And if the child DOES survive, he or she will live with life-long effects from this cancer.
So the script was wrong. It lacked ALL that information. ABC dropped the ball and put out a bad script.
So what, right? Who cares if some stupid show got it wrong, right? It’s no big deal, right?
No. Not right. We Histio Families and Histio Heroes and Histio Warriors fight HARD, to spread awareness of this disease and what it looks like in all it’s weird forms. Not because we want attention, but because we don’t want another family to suffer like we did.
My daughter was misdiagnosed for 5 months and was in full liver failure by the time they figured out she had LCH. They said she had autoimmune hepatitis, ulcerative colitis, some unknown autoimmune disease, primary sclerosing cholangitis, and liver failure NOS (which is a fancy way of saying her liver was dying and they had NO CLUE why). Then the day before Thanksgiving, right after her first birthday, they ran the right smear and gave us the diagnosis. Langerhans Cell Histiocytosis. She had it in her liver, spleen, GI tract, and pituitary gland.
Had we known 5 months earlier, could we have stopped it from spreading to her spleen or pituitary gland? Would her liver not have been as damaged? Would she be 8 years in remission and NOT have these long term effects if we had know to test for this when she first had liver issues? If we had the information the RIGHT information, earlier, how would her life look right now?
What if we had known to look for LCH? What if our doctor had known it was possible? What if we had watched a show about LCH on ABC and seen someone with similar symptoms and seen them react correctly to it? Would I have known to say something?
Now, think about people that did watch that show. While LCH is rare, there is speculation that its not as rare as the diagnoses numbers because there are children that pass away from liver failure NOS or unidentified lung cancers, that are never checked to see if it’s LCH. How many of those children had LCH and it’s never caught. But what if it was addressed correctly on this show and those people saw it?
So what does addressing it poorly do? Now, there will be patients that don’t relate the symptoms on the show to what their kid is going through. Now there are people who will be given the LCH diagnosis by a physician that doesn’t understand the disease, and be okay with only prednisone as a treatment. Now there will be people that don’t take it seriously. How many will be told it’s LCH by their doctors and not know what’s coming? Be hit from out of nowhere by the word “chemo” when they think they can use some simple steroids and *poof* it’s magically gone?
THIS is what a bad script can do. And that doesn’t even address how other people treat LCH patients. Am I going to now be facing people that saw the show and think that I blew what my daughter went through out of proportion for attention? Will she have to face that treatment from her peers? What about parents of children currently getting treatment? The treatment that our babies go through is not easy. The first protocol they use is called LCH III protocol, and it’s a mixture of chemos that have to be infused through a port, which is surgically inserted under the skin and looped into the veins going into the heart. It’s a horrible bag of chemos that cause hair loss, weight loss, vomiting, and general misery. And that’s the easy stuff that hopefully works. If it doesn’t, the chemo they use is HORRIBLE stuff. We moved into the hospital for MONTHS for her to get the hard stuff. And that might not work, so they move to other experimental things. Why experimental? Because it’s so rare, THEY DON’T KNOW WHAT WILL WORK.
So will these parents now bring their kids home from the hospital and have the school principal asking why the child missed school for prednisone? These are the effects of a bad sript and uneducated writers.
Yes, it’s a TV show. Yes, I know that TV doesn’t give us the truth. In this political atmosphere, I GET that most of what’s on TV is lies and twisted lines. But look around at our country. Most people don’t get that. Most people believe what they see on TV. So doing a show like this and getting it so glaringly wrong is DANGEROUS.
Picture if they’d done this with Type 2 diabetes. Written a script with a patient with type 2 diabetes, and then magically the patient is cured with a healthy dose of steroids. What the HELL would people’s reaction have been for that? What would the outcry be for that kind of misinformation? Well, that’s where I stand right now.
Misinformation related to diseases is dangerous. Especially orphan diseases where even the doctors get it wrong, and getting it wrong KILLS children. I know it’s a huge responsibility to demand that these TV show script writers know about the diseases they are writing about. But you’d think, with all the money they throw into these shows, they’d at least try to make sure that the right medicines are used. That the right symptoms are given. That it is treated appropriately on screen, with an appropriate level of responsibility.
A simple google search for histiocytosis would have brought the script writers to cancer.org, where they could have found an endless supply of information.
So yeah, I’m ticked. I’m disappointed. And while I can’t ask for a rewrite or anything silly like that, I’d still like to hear from someone that they screwed up. Maybe do another episode down the line and GET.IT.RIGHT.
Otherwise, there will be people out there that suffer from this poorly written script. And that’s not.okay.