that's nice
DIS Dad #330
- Joined
- Nov 23, 2008
Just wanted to update on Sydney. We still haven't spoken directly with her oncologist, just the oncology nurse and her paediatrician. Both are pushing for a face to face with the oncologist for early next week. We should know today. I was told yesterday by the nurse that the oncologists believe neuroblastoma cells are giving positive results on the test. They've said that once these mature, they become normal cells and the test comes back normal until others activate again. That's all I've been told. What I know though, from my own research and speaking with her paed is that after age 2, neuroblastoma cells will rarely mature completely and become normal cells. That means, its back. The onc nurse said that there's a little girl in the under 2yrs clinic that has fluctuating levels and they even did a full body scan to find out why but nothing so they figure for some children, this just happens. Two concerns there: that child was under 2, Sydney isn't and Sydney hasn't had a scan since 2007 and then it was just abdominal because that's where the tumor was. We're now pushing not only for a meeting but for a full body scan to see if there is a tumor lurking in her. I want the meeting by early next week with a scan within a week afterwards. DH has contacts (he's a pharmaceutical patent lawyer) and is trying to find the best paed oncologist to take her on and work with the hospital here to do the testing/treatment. Our hospital is amazing but things work slowly here and right now, I want things done quickly. Any advice would be great but in any event, please send a little prayer for her.
I totally agree with jen.. you have to speak to your doctor ASAP or find a reputable doctor at another children's hospital. We are able to speak with my DD's nurse or even her oncologist during clinic hours or the on call oncologist 24/7. We even have her oncologist's email.We are praying for Sydney. If there is a possibility it is back, then things definately need to move faster. I am not sure how things work there, but my son has leukemia and goes to Children's Memorial Hospital in Chicago. I can get his oncologist or the oncologist on call on the phone 24/7 with questions or problems and we have never had to wait or push for a test. If it were me, I would look to go someplace else. If that is not an option, then I would continue to push till they get tired of me. Whats that saying??? "The squeeky wheel gets the grease"
I think you are doing the right thing by pushing for the tests. Keep at them.
We will be praying for your little girl.