For those that have been asking....An UPDATE on Bailey:
In March 2011, we discovered Bailey had (still has) a very dangerous brain tumor. She began receiving chemotherapy immediately after this discovery and were confident that the carbo/vincristine combo would halt this tumor's growth....Unfortunately that did not happen.
The tumor went from a regular M&M size, to a peanut M&M size.....After 3 months of treatment.
We then switched to slightly more aggressive chemo (Vinblastine) And Bailey stayed on that for the next 9 months. We had to play with the dose a little bit, because Bailey showed signs of extreme sensitivity. (I was told by our Neuro/Oncologist that Chemo sensitivity for kids with NF is VERY common)
This tumor has stayed relatively stable during that 9 months, only changing very slightly--
Our 52 week treatment plan was over....But we still had a brain tumor, that was very much a part of Bailey's life...and it didn't seem to be going away....So we decided to continue on with a newer chemo that Bailey would take orally on a daily basis.
March 2012 we began Everlimus (Afinitor) 5mg.
Bailey's port was surgically removed and we were excited to be a part of a select group that was taking this "new" chemotherapy, and hopeful, because its reputation had been really good in treating NF related tumors.
Our "every 3 month MRI" in May showed 'no change' in the size of this tumor.
In August this tumor took a turn. While still measuring the "same"...the tumor has changed shape. No one can really tell me what this means exactly...Although I was told that it either means it is getting ready to shrink, or grow.
During the time on Everlimus, Bailey's cholesterol levels have sky-rocketed. The Drs are keeping a close eye on this, as am I- at home, with diet and exercise-
We get Bailey's blood levels checked once a month and in September the levels indicated the chemo levels were 'too high'......In October, they were 'too low'.
The Drs. decided to increase the dose from 5mg, to 7.5mg and that's when a whole new set of symptoms began.
*Extreme body aches
Our next MRI is in November....Those results will determine what we do next.
We live our lives 'in the moment'...We have no choice--
And when happiness comes---we rejoice!
When hard times hit-as we know they will--
We look to our Father--and stay calm and still. *Kristi Hopkins