Sunday, August 28, 2011

Sweet Caroline, BAH BAH BAH!

Imagine that you have a six year old daughter and you are on vacation in Disneyland with the whole family (she has an older and a younger brother). Her eye is bothering her and you think the jerking movement is probably no big deal. The school nurse had seen something wrong with her vision test just recently and your daughter is scheduled for an appointment when you get home.

A few days later when you get back from Florida, you head to the appointment wondering what this will mean – maybe glasses? Maybe just a patch for a short period of time? But at the appointment you are told that your daughter's eyes are healthy and there is no correctable disease they can find. Odd. So they schedule an MRI two long days later. You are supposed to get results that same afternoon but you can't help but research potential outcomes. Then the day of the MRI arrives and you never leave the hospital because of some devastating news: cancer. She has an inoperable, incurable, plum sized tumor lodged deep within her brain.

This is the news that hubby's cousin's family received about their daughter back in 2007. At the time, we had no children and even now that I have two beautiful daughters of my own, I can't possibly begin to even pretend to understand what they went through and continue to go through to this day. Caroline has a tumor known as a Pediatric Low Grade Astrocytoma (PLGA). It is inoperable and presently incurable. Front line treatment options for PLGAs date back to the mid-1980’s, and remain toxic, invasive and highly ineffective. While significant strides have been made in many forms of childhood cancer, pediatric brain tumors have all but been neglected.

This past year was a difficult one for Caroline and her family. The doctors did end up doing surgery in May of 2010, her dad was flown in from Iraq where he was stationed at the time, and were unable to get all of it, just the “extra” growth of the tumor that had been affecting her vision. Caroline had to relearn how to walk and talk and many other things we all take for granted. She is currently undergoing a trial round of chemo that is unapproved by the FDA. This chemo is a Phase II clinical trail which basically tests investigational drugs to learn whether or not they will be effective, determine dosages and evaluate potential side effects. While the FDA has not approved RAD001, it has been studied and shown to be effective in the treatment of other cancers. RAD001 is an oral regimen, so Caroline will take the drug daily for 12 four week courses (48 weeks). She is currently in round 9.  Poor thing! The last report I've heard is that her her vision and the tumor as shown on an MRI from July of this year are both STABLE! Praise God!

I have donated my hair to Locks of Love twice in Caroline's honor, but this year I am walking the Jimmy Fund Walk on September 18th by her side in her honor, she completes a portion of the walk every year. My fund-raising goal is achievable - $250. Basically either 10 donors at $25 or 25 donors at $10. This is the final push before the walk.  Please consider donating in honor of Caroline. No gift is too small. Whatever you can give is greatly appreciated.

To read more about her story, including her Make-A-Wish wish to meet the pope, go to  To donate online please go to  Or if you would prefer to write a check, make the check payable to “Jimmy Fund Walk” and email me for my mailing address.  Thank you in advance for whatever you can do.


  1. WOW! What a story. My heart breaks for them. What a great idea to do the walk with her. I'll have to check out the webpage. FAmilies dealing with sickness is a close issue to my heart. Bless you! Holding you and this family in my prayers.

  2. thanks for reading Holly!

    Caroline is still doing well. Very much looking forward to seeing her in a few weeks. Do take a look at her website if you get the chance. She's an amazing girl and she's leading a "fairly" normal life minus dietary restrictions and the clinical trial. God Bless!