Saturday, February 11, 2012

Good Intentions

We found out that Beatrice has been accepted into a vaccine trial at Pittsburgh Children's Hospital on Wednesday. The trial will begin with an MRI on March 14 at 2pm with her first vaccine injection on March 15 in the morning. If all goes well we could head home the evening of the 15th.

This particular trial, it turns out, is a pilot. Meaning, it's Phase I. I was under the impression that it was a Phase II because I found a link to the trial that indicated it was. And, I read everything after that initial finding with blinders on. Even so, the study has been going on for 2 years and they have some good data on the side effects. I was told that the vaccine is showing good promise with the children participating in the trial.

So, I was hopeful.

And then I got an email last night. An email from a grieving mother whose daughter participated in this trial and who lost her battle this past December. A mother who I'm sure worried for 20 months like I'm worrying now that the treatments aren't going to work. A mother who I do not want to become. A mother who did everything she could for her daughter but who lost her nonetheless. A mother who contacted me, I'm sure, out of caring, but who has now called into question the decision Chris and I made about Bea's treatment. The fact a child who participated in the trial did not survive is terrible news. I grieve for that family. Truly. But having that information now is absolutely killing me. I didn't want it. I had 2 days to enjoy thinking that Bea was on her way to a cure. I had 2 days to think about her future, her 10th birthday, graduation from high school, getting her first boyfriend, all the stuff that comes down the pike for most of us with our kids. Now I don't know. And, I have to decide whether or not to share this with Chris, my husband and Bea's dad. It will make him upset. So, I'm confused. Upset. Bothered. No... more than bothered. I'm angry. And I don't want to be angry. There's no point in it.

Please, please, please... if you read do not misunderstand that I don't want any advice. That's not true. However, I need to seek it out on my terms, when I'm ready. I am not ready to hear about a child who has died from cancer. I just can't bear it. So, please, for now, if you have a story that you want to share with me about your child, wait a little while. I'm just not ready for it.


  1. So glad Bea was accepted to the trial! Just know my heart and prayers are with you and hoping I can sell the piece I promised to help you guys out. Hang in there, I know it's rough!

    All my best from me and Aimée. who is 13 yrs old.

  2. Thank you for the "Good Intentions" post. Naturally, someone who has gone thru your experience wants to share their story. I do however, very much understand your point.

    Does Sweet Bea have a Facebook page?

  3. Keep reminding yourself every morning that every person is different. Every situation is unique. If anything, let this make you stronger. More determined.

    Bea and her powerful, loving family can beat this thing.


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