Pray for Katie

Katie is 13 years old and was diagnosed with Hodgkin's Disease, a lymphatic cancer. This site is a request to pray for her. Call her prayer pager 1-361-333-KATY (5289), enter your ZipCode and # key, to let her know you have prayed for her. Updates of her progress will be posted on the site. The Power of Prayer is Awesome.

Friday, July 08, 2005

Meeting with Doctors and CPS at M. D. Anderson

Friday July 8th: We flew to Houston to meet with the doctors and CPS to finally discuss the results of all the tests. CPS told us it was scheduled for 1 PM. They called back later and said it was scheduled for 2PM. We were there waiting for them and they came to get us at 2:20 PM. We find out later that CPS and all the doctors had already been there from 1 PM. Why weren't we included at that time? What collusion was going on behind our backs? There were far too many people in this room, about 8 who didn't belong, including social workers, Lutheran Social Services, a security guard, and others who had no right to hear Katie's medical information under the privacy laws. Only a CPS agent, the doctors, and parents, are entitled to that information. They violated Katie's right to privacy under the medical information privacy laws. The Doctors previously told Michele and CPS that they were going to present us with the results and treatment options A,B,C,D, etc on this day.

Edward informed the doctors that he and Michele were not guilty of medical neglect of Katie and that this will be proved later and asked that the doctors consider our wishes in making any treatment decisions for Katie even though CPS had the current right to make all medical decisions.

The doctors claimed they found cancer cells in the 90% of the thymus gland that they removed. (Note: Previously they found no cancer cells in the 6 needle biopsies and in the direct microscopic examination of the thymus tissue). This was hard to accept and Michele started to cry and tears filled my eyes. Their proof: one tissue sample slide and one cell slide picture projected on a screen. The cell picture slide showed a picture of about 1000 normal looking cells with 4 cells with double nuclei. These 4 they said were cancer cells called Reed Sternberg definitive for Hodgkins. Is that all they could find? There must have been hundreds of slides prepared from all the tissue since they took out 90% of the thymus gland, yet they showed us just one slide and 4 cells. And, remember, they removed this thymus gland from the body, so is there anything left in the body? They didn't find any cancer any where else. Dr. Nunez disputed that they removed 90% of the thymus gland from the body. Why? Dr. Hayes-Jordon told us plainly on the day of the surgery that she "removed 90% of the thymus gland". And Stella Klein, CPS, verified that is exactly what Dr. Hayes-Jordon told us that day. After that Dr. Nunez was silent about it. Also note that they said the thymus gland they removed was not in the normal position (about 2 inches below the collar bone under the breastbone). Why did they enter from the ribs in the back and collapse her lung when they could have entered from the throat?

The doctors presented their treatment plan for Katie consisting of and in this order:

1. 4 more rounds on a new chemo consisting of ifosfamide and vinorelbine consisting of 21 day cycles.
2. High Dose Chemo in prepartion for Stem Cell Transplant.
3. Stem Cell Transplant
4. Radiation.

We listened and then we asked some more questions. For the record: We did not dispute the chemo treatments. Katie said she did not want radiation. Edward said he and Michele did not want radiation for our daughter Katie and that was our postion from the beginning. Dr. Wells told us that this treatment plan was M.D.Anderson's recommendation and that we had no choice. There were no options of A,B,C,or D.

CPS said they would sign the consent form to begin the treatments.