casper_jj11
DIS Veteran
- Joined
- Jun 27, 2006
Thanks everyone for the positive thoughts and prayers and for the info on other hospitals. Maroo is right, we're in Canada and its a bit different here but we are considering taking her to the US if needed which is why I'm trying to find the best doctors around.
Medical care is free for us but it sometimes means taking a bit longer to see a specialist as you must have a gp referral. Sydney has been with the oncology team at the children's hospital here since two hours after her test results came back when she was 13mo old. She's always had wonderful care but I know that testing in particular can be slower here. There is no 'able to pay' route that we can take so testing is ordered for those that its deemed to be needed and it must be the specialist that orders it. There's our problem. They haven't determined that she needs it yet. Our paed is wonderful and called us Friday night to update us on a call she received from our oncologist. They will definitely do a face to face with us but they want a repeat of her urine test first to see waht her catecholamines are doing. Great. TEst was done today on a stat basis. We should have it back by end of teh week. If its high, they'll send her directly for scans. Which ones, I'm not sure. If its back to normal, they'll meet us but it may not be same day, or same week. They'll discuss then what we do next. Personally, I'm more of an action person than a wait and see and I have no intention of waiting for them to decide what to do. Problem is that if we take her outside our system, it really needs to be with their support becuase if she does need treatment, I'd like it done here, near her home where life can stay as close as possible to normal for her and her brothers. Its always moved quickly for us in the past with her and I'm not used to having to wait... and I don't like it much and I'm not planning on doing it for long. I told our paed that we'll wait til the results get back later this week but I won't be waiting much longer. So we'll see. I've taken the names of all the hospitals mentioned here. I also know that Philidelphia does a lot of research on neuroblastoma so that may be another option. Everyone we've spoken with here is discussing doctors in other Cdn locations but our problem is not the doctors here (they're incredibly good at what they do) its the speed with which things happen so for a change in that, we may need to go outside this system.
Medical care is free for us but it sometimes means taking a bit longer to see a specialist as you must have a gp referral. Sydney has been with the oncology team at the children's hospital here since two hours after her test results came back when she was 13mo old. She's always had wonderful care but I know that testing in particular can be slower here. There is no 'able to pay' route that we can take so testing is ordered for those that its deemed to be needed and it must be the specialist that orders it. There's our problem. They haven't determined that she needs it yet. Our paed is wonderful and called us Friday night to update us on a call she received from our oncologist. They will definitely do a face to face with us but they want a repeat of her urine test first to see waht her catecholamines are doing. Great. TEst was done today on a stat basis. We should have it back by end of teh week. If its high, they'll send her directly for scans. Which ones, I'm not sure. If its back to normal, they'll meet us but it may not be same day, or same week. They'll discuss then what we do next. Personally, I'm more of an action person than a wait and see and I have no intention of waiting for them to decide what to do. Problem is that if we take her outside our system, it really needs to be with their support becuase if she does need treatment, I'd like it done here, near her home where life can stay as close as possible to normal for her and her brothers. Its always moved quickly for us in the past with her and I'm not used to having to wait... and I don't like it much and I'm not planning on doing it for long. I told our paed that we'll wait til the results get back later this week but I won't be waiting much longer. So we'll see. I've taken the names of all the hospitals mentioned here. I also know that Philidelphia does a lot of research on neuroblastoma so that may be another option. Everyone we've spoken with here is discussing doctors in other Cdn locations but our problem is not the doctors here (they're incredibly good at what they do) its the speed with which things happen so for a change in that, we may need to go outside this system.