Monday, February 13, 2006
Sunday, February 12, 2006
13 Year Old Katie Fights the Establishment
13 Year Old Katie Fights the Establishment
For most 13-year-old kids, summer is a time to enjoy the freedom of long days and warm weather with family and friends; fireworks on the 4th of July; trips to the beach; making plans for the final year of middle school. Katie Wernecke didn't have that type of summer. This summer, the Texas legal system supported the local medical establishment in trying to bully Katie into undergoing a cancer treatment she and her parents had decided against. She was removed from her home, taken from the care of her parents and siblings, and allowed only very limited contact with her mother.
This divide-and-conquer strategy would have worked with most kids of Katie's age. But Katie isn't your typical 13-year-old. When the time came to inject her with high-dose chemotherapy, Katie said no. And when doctors tried to force her, she boldly and repeatedly resisted. Finally, they admitted they couldn't make her accept the treatment unless she cooperated. Can you imagine the guts it took for a 13-year-old, without her parents by her side, to give a flat, unconditional "no" to a team of doctors and nurses?
Opinions of Patients Will Not Be Tolerated
This insane situation could have easily been avoided if some members of Katie's medical team had not been so arrogant and if Texas Child Protection Services (TCPS) had not been so narrow minded.
Last June I sent you the e-Alert "Amber Ambush" (6/15/05) with details about Katie's story. In a nutshell: After undergoing several months of chemo treatments for Hodgkin's disease, Katie's cancer was in remission and her doctor prescribed radiation as a preventive measure. Katie and her parents said no, based on the possible long-range side effects of radiation in the upper body (including damage to the heart muscle, lungs, spine and thyroid gland, a high risk of breast cancer and hormonal disruption). The Werneckes said they wanted to investigate less harmful treatment options.
This was unacceptable, according to Katie's doctor, who was so certain that his plan for Katie's treatment was the one and only course of action that he reported the Werneckes to TCPS. For the unforgivable offense of disagreeing with a doctor, Katie was removed from her family and ordered to undergo treatments. Just as all this was happening, Katie's cancer was found to be active again. At that point her parents agreed to additional chemo treatments, but not radiation.
Finally Some Good News
Court hearings continued throughout the summer, with the Werneckes fighting for custody of their daughter while Katie refused treatment. Then, last week a small ray of good news came from the Texas Supreme Court. Recognizing that Katie's parents are not monsters who would do their daughter harm, the court wisely overturned two lower court rulings:
Katie's father may now visit her
Katie's mother may now visit without being forced to promise authorities that she will encourage Katie to comply with the treatment plan
If this seems like small potatoes, it is. But the Werneckes - especially Katie's dad - are grateful to have more access to their daughter, even though visits are still strictly supervised. If a supervisor determines that Katie's parents are encouraging her to refuse any treatment, permission to visit their daughter will be revoked. Is this how you "care" for a cancer patient? Especially a patient who's a child?
Tyranny of Experts
Less than two weeks ago Katie's mother visited her daughter and encouraged her to allow further chemo treatments. Katie agreed, and this is most likely a good decision. Chemotherapy is used on a wide range of cancers, but most cancer patients don't realize that only nine types of cancer have been proven "highly responsive" to chemo. Hodgkin's disease is one of them.
Katie's doctors continue to recommend radiation therapy after four more months of chemo, so how her long-range treatment will play out is still unresolved. Attorneys for the Texas Department of Family and Protective Services have stated in court that the Werneckes are "medically neglectful" for refusing radiation. Apparently these attorneys are blissfully unaware of the irony of that statement. Hello! Earth to Texas! Removing an ailing child from loving parents is neglectful in ways you apparently can't conceive of.
In a U.S. News and World Report article about Katie's case, Bernadine Healy, M.D., notes that Texas state officials are mistakenly convinced that radiation treatment is the standard of care in this instance. Dr. Healy's article is appropriately titled "The Tyranny of Experts." Dr. Healy quotes James Nachman, M.D., a pediatric oncologist and a professor of pediatrics at the University of Chicago medical school. Dr. Nachman states that he approves of intervention by child services when it's a matter of life or death. And he adds that the use of radiation in a case like Katie's is NOT a case of life or death.
A new hearing to decide on Katie's custody will be held on November 18th. I'll watch for the results and keep you posted.
Wednesday, February 08, 2006
The Truth and Nothing But the Truth, Thats All You'll Get Here
As a rancher we are in a terrible drought so half my time is spent caring for Katie and the other half spent feeding the cows. This blog is not a priority for me right now. I realize people want to know, but Katie wants her privacy. We turned down numerous TV appearances like CNN and ABC and others. It is also not safe to paste specific medical information on this blog. We are still being watched and scrutinized and so legally we cannot post this information. I can tell you that Katie is ok and is under the care of two doctors, one who is a radiologist. Katie is doing ok, she attends school daily, and is seen by the community daily. The Rebecca Poe comment says it all.
Posts will be infrequent and likely only on Saturday or Sunday. The comment section will be shut off again, because such negativity is not good for Katie or us. The comments are full of misinformation and out right lies and slander. We know that most of these are being done my Margie, Katie's foster mom in Houston. Everything she said is a lie i.e. being able to visit, writing a book for a million dollars, starting and stopping treatments, caring for Katie, and getting kicked out of church. None of these things are true. If she cared for Katie, Katie would have had good things to say about her and she does not. She did things like pull her out of school 1.5 hours early every day just so she could be home for the other girl. She never bought her clothes she needed, yet she received over $600 a month to care for her plus travel expenses. Katie could add a lot more information if you Margie want to keep slandering us with outright lies. Other posts are coming from M.D. Anderson itself. In fact M.D. Anderson itself caused all the delays in treatment. Margie sat there and did nothing when Katie drank that coke and she was supposed to be caring for and watching her. We were banned during this time. Katie herself refused the High Dose Chemo and M.D. Anderson sat there and did nothing for 30 days. I will remind you that M.D. Anderson treated her with Phase I clinical trial chemicals, in which only two treatments were allowed and they used four treatments of these unproven and unsafe chemicals on my daughter. Katie wasn't even placed in that Phase I Clinical Trial, nor did that have a right to use these experimental treatments on our daughter. I believe these things contributed to her chances being lowered to 20%. CPS and M.D. Anderson handed her back because they didn't want her to die in their care. Now if she dies we will be blamed and probably go to jail for it. How convienient. She had no active cancer when they took her and her immune system was taking over. We were actively seaking care at the time.
It is a different situation now and we are doing our best to see that she beats this cancer and recovers. That's what happens when over zealous doctors and the government sticks its nose into families lives where they do not belong. If you want to help then give us prayer, support and information we can use to beat this cancer. If you want to prevent such a tragedy from ever happening again, then contact your Texas legislaturers and insist that they fix the problem. One fix is to change the law to allow an immediate trial by jury in family courts. As it stands now you can't get a trial for at least 12 months.
Friday, February 03, 2006
This Comment Says It All