Saturday, October 17, 2009

“A New Baseline”

Last weekend, we went into New York City to have Isabella’s follow-up MRI.  This MRI was scheduled to be six weeks after her radiation ended back in early September.  The reason we had to wait six weeks after radiation is that there is a lot of swelling caused by the radiation that would make the MRI look like a mess. 

It took a few days to get the results, but we are ecstatic to report that the scans are clean and show no new swelling, no new enhancements, and no new mass!  This will be the new baseline that future MRI’s will be compared to check for any new growth.

For the first time in a long time, we’ve been able to let out a sigh of relief.  I’ve used the marathon metaphor a few times, and even though we’ve crossed the finish line in terms of treatments, we will need to keep running.  Isabella will have an MRI scheduled for every 3 months for the next couple of years.  Gradually, if everything remains stable, the MRI’s will move to every 6 months, then to once a year.

It’s really difficult for me to find the words to describe how I feel at this point.  It’s just like a giant jumble of elation, relief, and gratitude.  To think that Isabella was hours from dying – one of the doctors that we spoke with used the very sobering term that Isabella was “checking out” when she had arrived at NYU on that fateful night – and to watch her attending school and running around like a normal kid, all less than a year later – it’s really nothing short of miraculous.

At some point, I may be able to put into words how I feel as I reflect on everything that has happened.  I don’t think that time is now though.  In the meantime, please enjoy these pictures from our trip to New York City.  And again, thank you all for keeping up with us and your support.

Monday, October 12, 2009

Pediatric Cancer Awareness Month

September is, or should I say, was Pediatric Cancer Awareness Month. The fact that you or I hardly heard anything about it says how woefully unaware we are when it comes to pediatric cancer. As a family, we thank you for following our journey, and hope that we've added even just a little awareness to such a terrible disease. Cancer strikes thousands of families a year, but as with many other things, you never really think about it until it strikes so close to home.

If you've been following the bills that Congress introduced for Pediatric Brain Cancer research this year, you'll see that there has been no activity at all on these bills. (You can track the bills with the widget over to the right.) The bills were introduced on January 22, and have sat there since.

We all know that the pink ribbon symbolizes breast cancer awareness, but do you know what the color is for pediatric cancer? Gold. But this month, we will see pink ribbons everywhere as it is currently breast cancer awareness month.

Julianne read this message from one of the online pediatric cancer support groups, and fittingly, is from a woman who battled breast cancer and lost a child to cancer. Her perspective seeing both sides of a disease, as both a parent and patient, is both tragic and inspiring.

The end of September is approaching and Childhood Cancer Awareness Month has passed, largely unnoticed by society. The rush to shower us with pink in recognition of Breast Cancer Awareness month is reminiscent of the crowding away of pumpkins and scarecrows by Christmas trees and snowmen. Except there's no pushing gold aside. The way is clear for pink.

Even the American Cancer Society -- the outfit that professes to represent all cancers and provide support for everyone affected by the disease -- the organization for which we all come together and raise funds by holding a Relay each year -- has chosen not to recognize Childhood Cancer Awareness Month.

Go to and what do you see? The banner at the top of the page is pink and touts the ACS' commitment to fighting breast cancer.

Of course, I, among all people, am grateful for the focus of so many foundations and researchers on breast cancer. I know I wouldn't be looking at a future that is likely cancer free (or free of breast cancer, anyway) without the research and the focus on breast cancer during the past decade.

Still -- I'd rather have my son.

What if the focus that remains on breast cancer was turned to pediatric brain cancer?

I know millions of women are affected by breast cancer. But almost all of them are effectively treated.

Only thousands of kids are affected by brain cancer. But many -- perhaps most -- of them die.

This is so politically incorrect, I am hesitant to write it. But, as I write, I am without breasts and sans colon.

And one son short a full house.

If anyone can speak to this issue, I think I can.

I am grateful for the pink that signals the arrival of October in our day and time. I just wish there was a wave of gold -- more in terms of funding for research, but also in terms of awareness -- to usher in the pink.

If you are reading this, you know. You have traveled this tragic journey with us and you are aware of the impact of pediatric cancer on families.

Finally, the following article describes some of the sobering facts of pediatric cancer compared to other cancers, and shares more of the mother's story from a third party perspective.

Gold Ribbon, True Courage On Display