Friday, September 11, 2009

Update - 9/11 - 9:00am

We received a call from Dr Porter this morning with the results of the gallium scan yesterday. The scan shows white cells in two places - 1) her head by where the shunt is which is not surprising and 2) in her abdomen. So, Cam will be back off to the hospital today in order to get a CT of her abdomen (which they wanted to order last week but held off on due to concerns about the amount of radiation she has already been exposed to and will be going forward).

Once they read that, we will figure out what next. In the meantime, we spent about 30 minutes on the phone with Dr Porter last night discussing her condition and future treatment. We are confident that everyone is on the same page but are growing frustrated with the lack of a plan. Hopefully that will change today as the oncology team is waiting to receive an email from one of the doctors at Boston Children's Hospital in regards to her treatment. We get the impression that they are leaning towards at least having us see the doctor up in Boston for a second opinion and also perhaps doing the proton therapy up there.

Once the CT results come back, we'll know more...

With Love,

Greg, Robin, Caitlin, Caroline & Cam


  1. I continue to keep all of you in my prayers and in my heart. I hope the scan goes well today. I will be thinking of you.
    With love,
    "Mrs. Lev"

  2. We continue to keep all of you in our prayers - if you end up in Boston please please let me know. I am nearby and can help in any way you need....Children's is a great place!