My 20 month old daughter was born with WAGR syndrome. And has Aniridia. In December she was diagnosed with WILM's Tumor on her right kidney. Because of WAGR she has risk for renal failure, so they decided to start chemo, shrink the tumor and save as much of her kidney as possible. Luckily we knew to watch for the tumor and it was found small (12 cm) They did not want to biopsy because of risk of it spreading or upstaging the tumor. They told me they were 99.9% sure it was Cancer. She had 5 treatments of Vincristine and Dactinomycin. The first week of February she had the tumor and a third of her kidney removed. They told me the tumor needed to be sent to Europe for pathology because they were familiar with working with tumors that had already been treated by chemo.
They told me it would not take longer then 2 weeks to get the pathology reports. To find out the stage, risk level, and if the chemo had any effect on on it. My daughter started chemo the following week and has had 8 more treatments over the past two months.
A week after surgery they called me into the office and explained that they needed my consent for pathology and that they forgot to get it pre-op.
Two weeks later I had heard nothing and started calling concerned.
Four weeks after surgery I went in to their office concerned and was told not to worry and was treated as if I was stupid for coming into clinic concerned.
I started calling weekly and was treated so horribly like I was an ignorant person who shouldn't question them.
At 7 1/2 weeks after surgery the nurse called and asked me to come in the following week. I told her that I was worried and had been joking with friends that they had "lost" the tumor. She told me that "that's what we are concerned about" and hung up with me.
Last Monday I went in as they had asked and the doctor came in first. He explained to me that after looking for it the previous week the realized that it had never left the hospital after surgery and that they had just then sent it to Europe for pathology. I was furious and asked who I should direct my complaints and anger to and he said that it was now a finger pointing game between his nurse and pathology who claims they have been trying to reach her for 8 weeks looking for paperwork. He told me to wait 6 weeks to come back and see them.
I also want to add that at the first appointment with her doctor I asked for a second opinion from a doctor named Dr. Doem who has worked on many WAGR/WILM's cases. He told me I did not need one and he would not get one. I wanted to change doctors, simply because of how mean and rude he and his staff are, but they told me she needed treatment by that week, so I didn't have time to get a new doctor. I have been treated as if I am ignorant whenever I ask question and most questions are simply ignored. I put my ill feelings about their bed-side manner aside and figured as long as they were on top of her health and educated that the way I was treated didn't matter.
At this point I don't want them working with my daughter. I don't trust a word they have told me.
I have gone on and on and yet still left so much out.
I am hoping someone out their knows
1. where I can complain. ( I contacted the hospital and was treated like crap once again)
2. what my rights are.
3. how common this is.
4. if the tumor is still able to be looked at after 9 weeks.
5. and any other advise
Thanks so much, eb
Instead of waiting for the storm to pass, maybe I am supposed to teach her how to dance in the rain.