Thursday, February 11, 2010

NF KIds

Our blog is about wellness, but today we will add a bit about what NF kids go through. Our guest blogger is an NF mom Amie Broeniman her 7 year old Emma has NF. Life had been fairly routine with Thursday Chemo's until an eye exam about 2 weeks ago when suddenly we came to the realization that Emma was seeing NOTHING out of her left eye. Time to move the the MRI up and change course. So we had an MRI in 2 days and the tumor has changed a little and with the clinical changes we were on to chemo #3! This is where I wanted to be 5 months ago I am trying hard not to think about all the time, gas and energy was wasted in the past 5 months.
We started the new chemo which is called Avastin/CPT11 yesterday, 2 years after we started the first chemo. The oncologist said to us "The protocol is 2 years but if things are going well we will keep going after the 2 years!" I can't even let my mind go to the fact that by time she is 10 she will have spent almost half of her life in chemo. I feel strongly though this chemo will work and the tumor will shrink..
The good thing with this new chemo is the fact that it is every other week so we will get a break from our travels. The side effects or potential side effects are a bit scary but we will deal with them if we have to and hopefully other then the sickiness ones we wont have any and I will gladly clean up vomit poop what ever if this %#@#$ would just stabilize.
So I am hoping with a break here and there I will have a little more inspiration to write.