“Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind and yet as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light."-Unknown
Tuesday, June 12, 2012
Thursday, June 7, 2012
St. Jude Visit
Morgan had another MRI this past Monday and while we didn't get the exciting news that we got last visit, we did find out that the tumor is at least stable (no growth!). We were also able to successfully take her off the very low dose of steroid that she had been on since January so we are hoping that she can continue steroid free for as long as possible. It is very rare that a child at this stage of DIPG not be on steroids.
On the down side, her blood work showed that her counts were low so we will have to be extremely cautious with exposing her to any germs, she is very vulnerable to getting sick. If she should get sick and have a fever of merely 100.4 or more we would have to take her to LIJ immediately. We will get her counts checked again this coming week here at home. If her ANC levels drop too much more she will be taken off the clinical drug (St. Jude protocol) that she is on until her levels go back up and right now she is dangerously close to being taken off.
We still have no answers as to why Morgan is doing so well & it is still too early to know if the drug is having any positive effect but all in all the Doctor's thought she looked great and they were really happy. She is extremely brave and beyond tough, we couldn't be more proud of her!!! Morgan's next MRI won't be until the beginning of August but in the mean time we will keep you updated on her blood work next week.
Thank you all for your continued support, it means a great deal to our entire family!
On the down side, her blood work showed that her counts were low so we will have to be extremely cautious with exposing her to any germs, she is very vulnerable to getting sick. If she should get sick and have a fever of merely 100.4 or more we would have to take her to LIJ immediately. We will get her counts checked again this coming week here at home. If her ANC levels drop too much more she will be taken off the clinical drug (St. Jude protocol) that she is on until her levels go back up and right now she is dangerously close to being taken off.
We still have no answers as to why Morgan is doing so well & it is still too early to know if the drug is having any positive effect but all in all the Doctor's thought she looked great and they were really happy. She is extremely brave and beyond tough, we couldn't be more proud of her!!! Morgan's next MRI won't be until the beginning of August but in the mean time we will keep you updated on her blood work next week.
Thank you all for your continued support, it means a great deal to our entire family!
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