Friday, December 12, 2008

Emotional Rollercoaster

I am like a human emotional rollercoaster. You should see me – over the last three weeks, my emotions have changed like the wind.

It is so overwhelming to see my child in distress. I was terrified when Isabella became unresponsive when we first got to NYU. I was relieved to see her wake up from surgery to remove the tumor and speak. (They told us there was a chance that she would not be able to speak.) I was devastated when we found out the tumor was malignant and had spread to an unresectable area in the brainstem. I now feel a little bit better that there is a chance for cure with the Head Start protocol. My emotions vary by the day, sometimes by the hour. Here is just a quick example of how my mood changes.

Maya Manley, the founder of the Making Headway Foundation and a frequent volunteer visitor, came to see me one day in Isabella’s rehab. I was in tears as I told her Isabella’s story. She suggested I talk to one of their therapists. I got a call a couple of days later from the therapist. At the time, Santa had just visited Isabella and given her that precious computer which cheered her up so much. Also, the oncologist had just told me a story of a Connecticut child who had a similar cancer who participated in the protocol and is still recurrence-free 4 years later. So when I spoke to the therapist, I told her I was doing pretty well and didn’t need any help.

Two days later, after sitting with Isabella for 48 hours, watching her lay in bed refusing to cooperate or interact with anyone, I was a mess again. Maya happened to stop by our room, and it was pretty obvious to her what a wreck I was. After going home, and having a break, I returned to see Isabella happily back in rehab. Of course, when the therapist came by to see me, I was doing fine and again told her I didn’t need any help. Maya and the therapist must think they’re each talking to two different people!


  1. Hi Julianne, as worried as we have all been for Isabella, I haven't been able to stop thinking about how hard this has been on you, Roneil and the kids. No matter how much crazy stuff we hear about in the news knowing that you are all going through all this puts everything in perspective and shrinks in comparison. Please know you are all in our prayers and thoughts constantly. Ken's mom has asked all her friends and family to add Isabella and you all to their prayer lists. If you ever need to talk or just vent please know that we are here for you.

    Michele Shirley

  2. Julianne, I am glad that you will be sharing your thoughts on the blog. I wanted to let you know that I think about you everyday (even before all of this happen). Please call me if you need to talk, we have the same number.

    I miss all of you and Isabella is in my prayers.

  3. The videos you posted are adorable. I wish Isabella and your family lots and lots of luck! May G-d be with you through all of this!

    Shayna Goldstein
    (the one who broke Isabella's tea cups!)


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