Friday, April 10, 2009

Love Bugs and Distraction

No, that's not my new pet name for eosinophils.

It was my pet name for my daughter and her good buddy Meryl, an exuberant girl who lived next door to us before her family moved back to England. She's now 22, a graduate of the London School of Economics, a law student and a field rep for a Member of the UK Parliament. Mark my words: Meryl will one day be a Member of Parliament, if not the Prime Minister of the UK.

I got to see Meryl and her mom, my friend Carla, under the worst of circumstances this week - for the funeral of Brian, Carla's brother. I first heard of the City of Hope and bone marrow transplants 15 years ago when Brian was diagnosed with leukemia. After two transplants and 15 years, we assumed he'd live forever (or at least long enough to see his niece Meryl become an MP). Battered lungs and complications from pneumonia were the final culprits.

Brian was a City of Hope "Success Story" on the website, but, apparently, you are no longer considered a success if you die. His story has been removed from the site. His death makes me sad, but the removal of his moving story makes me sadder. It seems like the City of Hope should just move them to a special "in memory of" section instead of obliterating all traces.

I was moping about this when I received a call from Meryl this morning. She called to say goodbye, and then asked me if I remembered the "Love Bug" song that I made up for her and my daughter. Of course I did, and I sang it for the future Prime Minister of the UK, loud and clear.

And now I'll sing it for you:

Sing a new song
Sing it out strong


Ann said...

Sending you a big Easter hug and hoping those darn EOS's start behaving themselves.

Ronni Gordon said...

That's a really sad story. Would it help for you to point it out to the City of Hope so maybe they could do what you said and add it as an "in memoriam"?

Susan C said...

Thanks, Ann. Sending hugs and hopes that the Easter Bunny is good to you. I think those darn EOS will start behaving, now that I'm on the Pred.

Ronni, I think I do need to follow through with the PR department at COH on this issue.

Petrea said...

Sweet Susan, I agree. I understand they want people to think of healing and living when they're doing their PR, but he allowed them to use his story on their site. He lived successfully for 15 years. They should be grateful for his memory.

Trish said...

I've got to agree, CoH ought to at least appreciate the hard work keeping him alive for 15 years---many of us would LIKE that sort of story---to think past the 5 years on the outside many give us with a cancer Dx.

One of the things I have always tried to notice are the "little" successes---maybe not a full blown "win", but something positive. While he may not have lived "forever" he did live a long time and THAT is a success story.

Hope you have a happy Easter and keep downing those biscuits!

Margaret said...

Thank you for sharing this story, Susan. It is beautiful and it is sad. And I like your song.