This is an older post that I saved as a draft. I was too heartbroken at the time to put these words out there! But now- with the success we have had with nplate I can breath a sigh of relief!
For many out there today is what's called Wordless Wednesday- posting a great picture that has some meaning. This is my first post for this and it has to come with the following explanation for the true meaning to be understood. After this original post-at the advice of our doctor we went with chemo treatments and Mollie lost her beloved ponytail. For months now she has been mistaken as a boy and had a messy growing out mop! To see her with her hair fixed and looking so beautiful was unbelievable for me.
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(I posted this to Mollie's caringbridge site, sorry to duplicate)
Another ITP parent described their experience in a way that fits how I have felt for months now:
"It's like you've been handed an egg with a crack in it and been told not to break it."
How do I keep from breaking her? Better yet, how do I keep her from breaking herself? Now that Rituxan didn't work we are down to a very short list of options:
- chemotherapy to suppress her immune system
- nPlate (which will be FDA approved on July 23rd but the test in children are still going on)- has some side effect that concern me after using Rituxan
- splenectomy
- doing nothing
I've been spending a lot of time trying to research these options and any other I might find. Really I'm just running in circles because there are so few guarantees. Mollie has defied all the odds- she became one of the 20% that do not go into spontaneous remission within 6 months.
You can find more Wordless Wednesday post at
As They Grow Upor
Wordless Wednesday
Mollie meeting Mickey on her Make-a-Wish trip.
