Meeting At M.D. Anderson, Katie Fires Doctor, Refuse High Dose Chemo
Dear Lora Heil, Legal Counsel M. D. Anderson
Memorandum of Doctors Conference with Parents of Katie Wernecke at M. D. Anderson
On 8/30/2005 at 2:30 – 4:00 pm
Present at this meeting were Dr. Wells, Chairman of the Pediatric Dept, Dr. Cesar Nunez as Katie’s Physican, Dr.Petropolis, Bone Marrow Specialist, Chris Hernandez, Patient Advocate, and Fran Clark, Patient Advocate, Jones, Security Guard and many others. Present on our side were Katie Wernecke and her parents Edward and Michele Wernecke. This was a meeting to discuss the latest results and the next step in Katie’s treatment – High Dose Chemo.
We haven’t been keep informed of the treatments and test results for Katie Wernecke. I asked for a copy of Katie’s blood count data. They didn’t have a copy. They didn’t have Katie’s file or records with them. Out of their memory they said Katie had an ANC of 740 and a WBC of 1.6 . I asked about the RBC and hemoglobin and they weren’t sure. I asked them if those figures were not too low to be doing this High Dose Chemo now? Because even regular Chemo should not be done with an ANC below 750. Katie was looking a little pale and had lost 6 pounds so I was concerned.
Dr. Wells said “Katie had a dramatic improvement in her results on the PET scan, but they were NOT SURE whether the small line of tumor remaining was an Artifact (just fibrous tissue) or Hodgkin’s Disease.”
I asked for a copy of Katie’s PET Scan results and could we view the image? They refused to provide a copy of the written PET scan or show the image.
Dr. Petropolis, the bone marrow transplant specialist, discussed the details of the High Dose Chemo and the Stem cell transplant procedure. The type was BEAM. They provided no fact sheets on the chemicals to be administered. The procedure was to begin this Thursday. Sept 1, 2005
I questioned him about the risk of dying from the procedure and he said it was 10 percent.
When asked about the toxicity of the procedure he said it would damage the heart, kidneys, and lung, and that Katie could not have children.
Katie had already expressed her desire to have natural children to Dr. Wells and Dr. Nunez previously. They had made no provision to collect or store her eggs.
I asked if this High Dose Chemo treatment was absolutely necessary for Katie since they didn’t even know if the remaining tissue was just fibrous tissue or active Hodgkin’s Disease and with all the dangerous side effects. Dr. Wells said it was necessary.
I said I did not like or find acceptable the high risk of Katie dying or being injured from the High Dose Chemo. I asked if there were other alternatives to High Dose Chemo that would be less risky. They said there weren’t.
Katie Wernecke said “I don’t want Dr. Nunez as my doctor. I want a Pediatric Oncologist specialist in Hodgkins.” Dr. Nunez holds only a Faculty Temporary Permit.
Katie Wernecke then said “I do not want the High Dose Chemo and won’t take it.”
Katie Wernecke than presented the Doctors with a letter stating that she wanted no more treatments and wanted no High Dose Chemo, also stating she was stressed out and needed the love and support of her parents and wanted to go home. It was passed around and seen by all in the room.
I asked Dr. Wells how that affected the situation and he said “they would continue with the treatments.”
I told Dr. Nunez that I believed Katie had just fired him as her doctor.
I said why can’t you just continue with the two more normal chemo’s planned, or irradiate just the small area of remaining tissue? Dr. Well’s said they wouldn’t do that, and that is 50 years into the future respectively.
I asked and showed all the doctors a study in Blood, Vol 89 No.3, 1997, pp801-813 on High Dose Chemo, done at Stanford showing that 46 out of 119 patients died and 4 year actuarial survival was only 52% and severe complications and toxicity.
I asked them if they were following the NCCN guidelines for Hodgkin’s disease? I showed them a copy and said M.D. Anderson is a member of that group. Dr Wells and Dr. Nunez both said they were not following them.
I questioned them about the original diagnosis of the disease and MD Anderson’s test and why the tests between the two hospitals did not agree. They said they consulted with about 50 other experts to come to this current conclusion. I asked them to provide copies of that information. Dr Wells said “they don’t intend to provide it.”
I said there are questions of the diagnosis and of the pathology samples being what M.D. Anderson claimed and I would like to have my own doctors and pathologists look at the information before the High Dose Chemo treatments were begun. Dr. Wells said CPS had approved the procedure and he would not delay it and that there would be no second opinions.
I asked it they had considered the bio-ethics of doing these treatments on Katie when she was refusing treatments and just fired her doctor? They didn’t consider it an issue.
Dr. Wells commented to the group that they hadn’t received the court papers authorizing Katie’s treatments. (Also note CPS only has the right to take a child for medical neglect in a life or death situation. This was not an emergency, nor a life or death situation, nor was Katie’s medical care being neglected.)
I asked about their duty, and need to get a patient’s consent. Katie has never signed a consent form or seen one. They didn’t answer.
I asked the two Patient Advocates if they would take Katie’s side. They would not.
According to the court order, I have no right to consent or refuse the treatments on Katie myself. M. D. Anderson has not provided the medical data and samples timely in which for us to make an informed decision as to Katie’s need for these treatments. We are entitled to second and third opinions as to the correct diagnosis and necessity of the recommended treatments. This is not an emergency procedure and Katie is not at any risk of dying at this time or in the near future that these treatments cannot be delayed a week or two. Katie has also asked to be present at and to testify at a hearing on her CPS custody on Sept 6th, which directly impacts CPS and MD Anderson’s right to force these treatments on Katie. Katie is of sound mind and is of age and mature enough to make these medical decisions by herself or in cooperation with her parents. To violate these basic rights of Katie is wrong. Katie’s Ad Litem attorney Linda Rhodes Schauer was sent the letter from Katie and was not at this meeting to represent her and her interests.
Please do not do this with out my daughters consent. Please respond immediately.
My appeal is that you wait until we get a second opinion and she gives consent. Will you do that? Please respond immediately.
Edward D. Wernecke