Update on Katie
What did we do wrong? We asked a doctor for a second opinion. Two days later they called in CPS. We needed a third opinion when these two doctors did not agree. Oh, yeah, that was never brought out in the media. By the way we only got two opinions. The court and press said 5 doctors said she needs radiation. Not so, three of these doctors were radiologists. What would a radiologist recommend? Why of course radiology. What would a Bone Marrow Transplant Doctor recommend? Why of course a bone marrow transplant. What does an oncologist recommend first? Why chemotherapy of course. It's all about the money. Why did Dr. Alter lie that we had to see Dr. Garlitos because he was a Pediatric Radiologist, when he wasn't, yet was refusing to make the referral to Dr. Voorhees. It's the money and kickbacks. Yet the M.D. Anderson Radiologist was ok, but she had the same degree as Dr. Voorhees. To Dr. Voorhees credit he was the only doctor in the group that took the time to explain the radiation treatments to us and the potential side effects. To the rest of the doctors Katie's life was not important enough to sit down and really explain and answer all our questions. It takes too much time.
Did we delay treatments? No, any delays were Dr. Alters, we delayed things only two days. The rest of the delay was caused by CPS interferring with our basic rights as parents. We never refused any medical treatments. We would have kept searching for the right answers by going to other doctors. Only when we totally refuse medical treatments for Katie should CPS have stepped in and took her. CPS is wrong in this case and overstepped their bounds. These is not a simple live saving procedure that they could give the child and hand her back to the parents. These procedures also carry great risk and cause harm to the child too. Causing harm is child abuse and medical neglect too.
These treatments are not an instant cure where you can go home and its over. Hodgkin's is a long term disease. You have it the rest of your life. It generally responds to treatment but it almost always comes back in 6 to 12 months and sometimes maybe 2 years. Katie has gotten hundreds of emails and many of these tell her of the problems of chemo and radiation. Many of these people say if they had to do it over again they would not do the radiation, chemotherapy or High Dose Chemo. Most were chronically sick afterwards. Sometimes it is the quality of life that matters most especially to a young girl.
Nobody is telling the public the affects this High Dose Chemo treatment is going to have on her now and in the future. It will damage the heart, lungs, kidneys, and liver. There is a 1 in 10 chance she can die from the treatment alone. Her right lung was damaged by pneumonia when she got the cancer back in January. Her left lung was damaged from the biopsy surgery. She can easily get a respiratory infection that can kill her after the High Dose Chemo while she waits for her body to recover in isolation. Her immune system is wiped out. Remember too, that Dr. Hayes-Jordon carelessly removed 90% of Katie's thymus gland. Will Katie be able to restore her immune system after High Dose Chemo? The tymus gland produces T cells that are the main fighters of cancer and also produces hormones that activate the rest of the immune functions. In a study in Blood 46 out of 119 people died within 4 years after High Dose Chemo. There is also an increased risk of getting Leukemia after this treatment. So it is not a simple decision, but a very serious one. You see.
Katie has a small area of dead tumor remaining about 1 inch by 2 inches long. Her lungs, heart, and kidneys and liver are all ok now. What they want to do, I guess is to kill any possible remaining cancer cells that might grow back, but is damaging the rest of her body necessary? After this is done they want to do radiation to do the same thing. And this radiation would be done from the upper neck to the diaphram and shoulder to shoulder, in other words the whole chest. Again, it is overkill damaging organs of the heart, lungs, and thyroid. Is this justified when they could just treat the 1 x 2 inch tumor area? Or simply cut out the remaining tumor. One doctor defined IFRT(involved field radiation therapy) as doing just the current tumor area and a small margin around the tumor. That is far different from what M.D. Anderson wants to do.
When the cancer is dead as it is now wouldn't it be better to build up the immune system and the body systems and let them take over destroying the cancer cells? Everyone has cancer cells in their body formed everyday and yet when the immune system functions properly these cells are destroyed daily and most of us never get cancer. Why continue to destroy the body and the immune system with chemotherapy and radiation to the point where recovery is impossible. These are just basic biological, metabolism, and nutritional concepts that doctors seem to have little training in. We want real answers to the hard questions.