Misguided faith in alternative medicine endangers a child yet again
This particular story concerns a 13-year-old cancer patient named Katie Wernecke, who was diagnosed with Hodgkin's lymphoma in January and whose parents have been fighting with the state to let them take her to Kansas to receive intravenous vitamin C therapy. Ultimately, Katie was taken away from the parents by Child Protective Services when it was charged that the parents were interfering with her chemotherapy:
Katie was diagnosed in January with Hodgkin's disease, a cancer of the lymphatic system. By May, her parents believed chemotherapy had killed the tumor in her chest and feared the recommended radiation treatment would do her more harm than good.
After a doctor informed Child Protective Services that her parents were interfering with treatment, Michele Wernecke fled with Katie, prompting the state to take custody of the girl.
Katie has since been with a foster family in Houston and undergoing treatment.
In court Friday, Dr. Robert Wells, Katie's pediatric oncologist, said the chances the teen can beat the illness are now less than 25 percent because of the repeated delays. He said the alternative her parents want to try isn't a viable option.
The parents of a 13-year-old cancer patient who have been fighting the state over her medical treatment will be allowed to take her to Kansas to pursue intravenous Vitamin C treatment.
First, however, the girl must undergo five days of chemotherapy, state District Judge Jack Hunter, newly appointed to the case, ruled Friday.
The case was back in court after Katie Wernecke's parents tried to stop their daughter's chemotherapy that was to begin this weekend. They argued the treatment was experimental and that they had not been properly informed about it.
Katie's case is little different than the case I discussed the other day, where parents subject their child to a health regimen or treatment that is not in that child's best interest. Hodgkin's lymphoma in children, virtually a death sentence only a few decades ago, is now highly curable with chemotherapy and radiation, even though they are commonly diagnosed at an advanced stage. The standard treatment involves chemotherapy and low dose involved field radiation therapy (LD-IFRT), which involves 15-25 Gy administered to the involved region. Indeed, initially, oncologists estimated Katie's chances of long term survival to be around 80-85%, which is about typical for children with this particular cancer.
This is the spin on the story as told by the family on a blog they've set up, ostensibly written by Katie herself when she was diagnosed:
My doctor is named Dr. Alter and he asked my dad to come look at the results of the Cat Scan with him. It was then Dr. Alter told and showed my dad that I had a large mass under my breast bone chocking off the windpipe and the bronchial tubes to each lung were reduced to pencil size. The cancerous mass was also wrapped aroung the aorta and veins and my heart was being pushed way off to the left side. The doctor told him the Cat Scan looked like it my have spread to the lungs, liver, kidneys, and spleen too. It was Hodgkin's Disease - stage IV - which is the worse as it gets. It was very serious and I would have died had dad not brought me in to the hospital when he did. I wasn't told that at the time. I was told that I had Hodgkin's Disease a type of lymphatic cancer and that the doctor could make me better.
I have another Cat Scan and a scan called a Gallium Scan. In this scan they inject radioactive gallium into your viens and it shows where the cancer is located. The cancer is still a very large mass under my breast bone. The good news is that it seems to all be located above the diaphram and the doctor changes the call from stage 4, the worse, to a stage 2b. That is the Power of Prayer!!!!. Thanks to all the hundreds of people praying for me. Dr. Alter explained to me and my Dad his treatment protocol. Dr Alter said I would get 2 chemo treatments plus radiation or I could get 4 chemo treatments only. If response to chemo was good after 2 treatments it would be followed by radiation if not we would get 2 more chemo treatments.
Katie's doctors continued to recommend radiation because her cancer had been advanced at the time of diagnosis. It may also have had poor prognostic factors, but I am unable to determine this for sure. In any case, as can be seen in the quote above, the parents seemed to believe that prayer had saved Katie and from the tumor. Although elated that chemotherapy had appeared to destroy the tumor, the parents balked at the planned followup radiation therapy, fearing its long-term toxicity.To me that says there is no active cancer and the tumor is liquidifing. They said this is not normal or "atypical" for lymphoma unless the mass is entirely decomposing or dead. They don't understand it! For us we know that it was the "prayers and the power of God!"
"Radiation's effects on a child are a lot different than they'd be on me," said Edward Wernecke, 53, Katie's father. "It could shape her whole future — make her sterile, stunt her growth, cause her to get breast cancer in her 20s. The effects would be with her the rest of her life."
Although we as physicians are obligated to be honest and straightforward about the potential benefits of a treatment weighed against its potential risks, such honesty sometimes produces unfortunate consequences, particularly if communication between doctor and patient is not optimal; if the patient has a pre-existing distrust of the medical profession; or has altie tendencies. Some patients (or parents) fixate on the potential complications of therapy and ignore its likely benefits, and I suspect that's what happened here. I also suspect that there may have been a failure of communication, as well. For example, in a blog entry, the family speaks as though the complications are inevitable:
The radiation would damage her lungs (cystic fribrosis), her heart muscle would be damaged, her breasts would be damaged and would likely develop breast cancer later, and her spinal column in her back would be damaged and she would not grow any taller and may have learning problems. Her thyroid and thymos glands would be damaged and she would have hormone problems.
It is not entirely clear whether Katie achieved a complete response after chemotherapy. In their blog entries, the parents seem to claim that she did; I have been unable to verify this independently. Now, if Katie survives her relapse, it will definitely require extremely toxic therapy chemotherapy followed by stem cell transplantation, as well as radiation. If she beats the odds and survives, Katie will be at a much higher risk of suffering from the complications her father feared than if she had received her LD-IFRT in a timely fashion as recommended.Overall survival of patients who receive chemotherapy alone may be similar to that for patients who receive both chemotherapy and LD-IFRT, despite a difference in EFS. This results from the ability to effectively salvage patients who relapse after initial therapy.[9,18,21] If this potential can be accomplished with relatively nontoxic salvage therapy, then initial treatment with less intense therapy may be appropriate. If, however, salvage therapy results in a substantial risk for late events such as cardiac failure or secondary malignancies, less intense initial therapy would be unwise [Emphasis mine.] Thus, it will be important to evaluate prognostic factors that may influence the magnitude of the EFS benefit that derives from the use of LD-IFRT in patients achieving a complete response to initial chemotherapy. In the German study, the benefit of radiation therapy was greater in patients with advanced-stage disease at presentation. Other potential prognostic factors may include histology, erythrocyte sedimentation rate, bulk disease, and presence of symptoms.
Finally, this case brings up a difficult issue leading to high emotions. People are, quite understandably, quite attached to their children, and even parents who make bad decisions almost always do so believing they are doing the best thing for their child. (To see an example, visit the comment thread in this post about the story, where the conversation starts out intense but generally civil and reasonable and then degenerates into ad hominems and smear tactics directed at Katie's doctors.) It is quite clear that competent adults should be allowed to do whatever they wish with their own bodies and that they should have the right to refuse treatment, even if it means their death. However, that right does not extend to endangering their children by refusing therapies proven to be effective, as children have no choice in their own therapies and are not considered competent to make their own decisions in these matters. Texas CPS had the obligation and duty to intervene. Although the therapeutic decisions in this case are admittedly more complex, when you boil it down, there is little difference between this case and a case of Jehovah's Witnesses refusing to allow their child to receive a life-saving blood transfusion or the parents I discussed who imposed a diet detrimental to their children's health. Worse, taking Katie to receive a useless therapy like intravenous vitamin C will only waste still more time.
ADDENDUM: A followup on this story is here.