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| Lara |
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Posted:03/16/2005 3:18 PM |
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How long have you all been told to do MRI's and why?
For two reasons, we decided not to continue mri's with Nicholas. (His last MRI was in November, 9 months off treatment.)
1. IV starts are so traumatic for him. The nurses say that he has thick skin, and they have a hard time getting the needle through. EVERY nurse has had trouble. He is usually stuck 4-5 times before we get a semi-adequate iv.
2. In all the cases that I've found, when the tumor comes back, it comes back quickly and aggressively.
Nicholas has now been off treatment for just over a year.
Have any of you heard of cases that came back after that long?
I am second guessing the decision to stop the MRI's, but I know that it is mostly my own fears of the cancer rather than logic. Nicholas still doesn't walk very well, so I find myself scrutinizing every step. I'm sure that his missteps are just a delay, but I can't help wondering.
Any info would be appreciated.
Lara
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| Anonymous |
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Posted:03/16/2005 4:03 PM |
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I read on the internet sorry cant remember the website that one lady was told to do MRIs every 3 months then every 6 months then every 2 years on her child but I think that was for the PNET tumor\
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| renee ( www.caringbridge.org/ut/dexter ) |
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Posted:03/16/2005 4:46 PM |
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Two reasons to do MRI's: 1. Peace of Mind
2. Yes, a second recurrence is usually much more aggressive,but... if caught early enough on an MRI, it might still be at a stage that has either not metastasized, or is operable by either surgery or cyberknife as in both Desxter's and Collin's case. They are still here!\
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| Karrie |
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Posted:03/16/2005 9:45 PM |
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Lara,
Kate has been off treatment for 3 years in November (whoa as I write that I wonder if that is true!) Her doctors had her having scans every 3 months for her first year then she did them every six months the second year and this year she is down to one a year. I understand the scrutinizing every step. IV's were pretty traumatic for Kate also and we found the best way to get them in was to give her an oral sedative 15-20 minutes before they tried to insert the IV. This relaxed her enough that they were able to put it in but it didn't totally knock her out. She cried but she didn't remember getting it when she came out of the sedation. I don't know of any cases coming back after a year. It seems that most children who relapse never actually were clear in the first place. I hope this helped you.
Take care,
Karrie
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| jared's mom |
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Posted:03/17/2005 11:20 PM |
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Jared has his MRI about every 3 Months. He is now 2 years out from surgery. With the treatment that Jared had, calls for MRIs every 3 months until 2 years from the end of his treatment. that will be JUly/August. After that MRIs will be every 6 months. I am not sure how long that will be for until the MRIs will be yearly.
I believe the MRIs are still important for us.
With each MRI that he has clear, makes us feel better. Because it puts him that much further out from surgery. I think I will worry more when we need to wait 6 months or longer.
As far as walking. Jared still has a lot of balance problems. His phyical therapist said it will take years for his right side to get to the strength it should be. And he has had Physical therapy 3 times a week and Occupational therapy 2 times a week since October 2003. It took him about 9 months to walk after surgery. So I think if nicholas is having problems walking it probably just weakness still from surgery.
I am sure the Nurses are very nice. But I have dealt with rns, doctors, techs, etc. Some just are not very good as putting in an iv especially if a child is upset. But there is always someone excellent who can get in the IV with little or no trouble and less trauma for your son. The anesthesiologist is the one who does our sons, and they seem to be much better at it then the others were.
I hope this helps.\
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