Wednesday, October 5, 2011

Not an Easy Update

It's been over a month since my last post. Since my last post, a lot has gone on, including Isabella's first day of school. She's now in third grade. We also went through another Childhood Cancer Awareness month, with just about as little publicity as previous years, aside from maybe a couple more commercials. I wish I could say that my lack of posting was just a metaphorical representation of the sad state of pediatric cancer awareness, but it wasn't. I wanted to post some stuff, but just couldn't bring myself to it.

We have not gone through any more treatments with Isabella. After the last round of high dose chemotherapy two months ago, she took a bit longer for her counts to recover. Because she had not shown any noticeable improvements, we decided that we needed a change in strategy. At that point, the risk/reward factor for the chemotherapy was just not worth it, since the chemo could end up killing her.

We met with our oncologist at NYU and with the head of pediatric oncology at Tufts (who was formerly the head of pediatric neuro oncology at MD Anderson) to try and develop some alternate plans. These plans involved using different drugs and different dosages. For instance, instead of doing a high dose of chemo every 4-6 weeks, do lower doses constantly. These strategies are mainly used for low grade tumors, which have different characteristics than high grade tumors, which Isabella has. But at this point, there aren't a heck of a lot of options.

To make matters worse, Isabella's symptoms have grown sharply worse over the course of the last few days. Physically she is weaker and her speech is limited to just a couple words at a time now. I am anxious to start any treatment, but I am absolutely petrified to have another MRI done at this point for fear of seeing a dramatic progression of the tumor. Now Isabella has done this a couple times over the past year or so where she shows weakness but then gets better, but I don't know - I just don't have a good feeling about this.

I do know that many people out there continue to pray for us and keep us in their thoughts. We certainly do appreciate that fact as we continue this extremely stressful ordeal.


  1. PRAYERS, HUGS, And LOVE coming your way!

  2. Hi, it's Ellen from Camp Sunshine. I have been keeping up with emails and am broken hearted about Isabella. Please know that we all love your family and are praying for a miracle for your precious baby! Love you!


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