I want to share a picture of my folder that I had on the Represent IBC wall at the Ultimate IBC Meet up that was held last weekend in Houston, Texas.

We had a wall with large letters, reading Represent IBC, and the guests at the event, whether they were patients, caregivers or even donors who attended, were encouraged to put an envelope on the wall with their name and attach some things that represented some of their experience.

I wrote my name on my folder, with the year that I was diagnosed and what my diagnosis was. Then I put some stickers of roses on the outside because having flowers around me is always something that makes me feel good.

Then I attached a couple of things that meant something to me that were representative or either a gift.

The little blue thing is a cuff..

A little boy I knew (who was about 8 years old) made it for me when I was in treatment. He told me that I was superwoman and that I was going to be OK and that all superheroes had wrist cuffs that helped with their super powers.

I cannot begin to tell you what that sweet gesture meant to me.

One day I gave the other cuff to a lady who was really deep into a struggle, but I’ve saved this one back for myself. All these years, 16 years, because it brings me great comfort.

The little keychain from Canada was recently given to me on a trip to meet with some sisters there. But it was really interesting that they gave me that because some of the very first friends I made in the IBC world, were in Canada….. and that token coming back into my life 16 years later was very poignant.

Someone had a special rosary remade for me with all my children’s names on it as well as my husband. It gave me great comfort as I prayed for not only my wellness but for the strength of my family to get through this unscathed.

Cancer does a lot of collateral damage, and I think we need to remember that as we all try to improve the situation.

So I thought I would explain my folder and also I really enjoyed reading all the notes that were tucked inside of it…. as we had notepads and stickers laying out so people could write notes to each one of encouragement. It was a very moving display.

I’m really grateful to Savannah Barrett who had the idea for the Represent IBC wall. And also the fact that she came *again* on her own dime, to ,C the event for us. It’s so wonderful to have someone MC who also knows the topic well because her sister Olivia Franz was diagnosed at the age of 27.

I cannot begin to tell you how meaningful this event was….. And honestly, it will be kind of hard to top it but we’re going to do our best. Please hold the first weekend in October 2024, for Boston. The lab tour will be at Dana Farber.


Please support the IBC Network Foundation. We are doing something to stop IBC forever.

And if you are comfortable, please share a picture of your folder, or the event, and tell people what you got out of it and also ask them to support us as a donor. We need everyone’s help.

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