Thursday, May 10, 2012

At Home Chemo- Update!

The 3rd month of "at-home chemo" just arrived.  My heart always skips a beat, when I see the delivery truck stop at my house.....Then a sigh of disappointment when I find out what's being delivered.

Bailey has TWO brain tumors that the doctors are hoping will be shrunk by this "new" therapy.  But I am worried with the lack of side affects...If this chemo is doing anything at all.

Isn't that sad?

At least with the Carbo/Vincristine Bailey had noticeable side affects that (in MY mind) meant the chemo was doing its job. But sadly, that wasn't the case.  One of Bailey's tumors went from a "regular M&M" to a  "Peanut sized M&M"....A crushing blow to us all.

A month break, then a switch to Vinblastine showed reasons to hope.  After 8 months of treatment however, the tumor had no changes.  Such a disappointment...Especially after the roller coaster ride of side affects (low counts being #1) 

The doctors in Bailey's case have often wondered "What's next?"  We were giving this option to STOP treatment totally...and let these tumors do what they will....Or begin this fairly new course of treatment .


We were told this was "fairly new"...Especially when it came to trying it on children with Neurofibromatosis....But THIS was MUCH better than doing NOTHING!

So month THREE....Bailey seems "normal"....Counts are good, hair not falling out in clumps, she doesn't look pale, her energy is better....If you didn't know her...You would never guess she was 16 months into her THIRD chemotherapy!  YAY for that!

But--My crazy mind gets spinning and with the lack of side affects, I often wonder what, if anything this Afinitor is doing for Bailey--Aside from raising her cholesterol from a semi high 200's to a dangerous High of over 600!

But we continue on...Hoping for the best...
After all...they say that a positive attitude can be the BEST medicine. 



  1. That sad to hear, I have never heard of any drug raising a persons cholesterol before. I hope it goes well for your daughter.

  2. You just keep on going- don't you? I am proud to know you AND honored to stand along side you in your quest to THRIVE!

    Keep up the GREAT work and remember that u are not alone!