Masthead header

Category Archives: {our fanconi anemia journey}

fanconi anemia, bone marrow transplant

5k for FA

Coming up on May 2, an event to benefit the Fanconi Anemia Research Fund! Eli, who is ten years old, has Fanconi anemiaView full post »

Happy Third Re-birthday, Eli

April 22. Each year I look forward to this day as much as I do any of my children’s actual birthdays. Maybe evenView full post »

The First Beginning

The following post was dug out of my dusty archives from 2010. It is a story I wrote about how things started with Eli,View full post »

Miracles: Eli’s Bone Marrow Transplant

In February 2011 my son Eli was diagnosed with Fanconi Anemia. FA is an inherited disorder that can lead to birthView full post »

In each day, a minute

In each day, a minute Where I’m a little terrified Of a bump on his head Or an achey tummy Or a doctor’sView full post »

Surrender

Today I’m inspired by the wise words of Robin Zander and Cheap Trick: You’re mama’s all right You&#View full post »

A Party, and Some Papery Wishes

The Party We held my son Eli’s 8th birthday party on December 15th, with about 65 of our closest friends andView full post »

Thank You Michael

Because of a boy named Michael Wrobel, my son Eli’s bone marrow donor Denise joined the bone marrow registry inView full post »

Meeting Eli’s Bone Marrow Donor

The following video was shown at the Rhode Island Blood Center’s annual awards dinner on October 18, 2012. ItView full post »

2.00 for 2 Million to Benefit the Fanconi Anemia Research Fund {FARF}

Things that cost $2 A soda Two Power Bars The Sunday paper A loaf of bread A pair of shoe laces An app for your smartView full post »

Box of Kittens: A True Story About Wishing

My life revolves around prayers and wishes. My son Eli, age 7, was born with a rare and life threatening diseaseView full post »

Dearest Donor

Letter Written June 2011 I waited quite a while before sharing such a personal note, but I thought perhaps someone wouldView full post »

Proceed to New Normal

Tweet February 1, 2012 Why did we get picked for something like this? I dunno. But then again, why not us? As I writeView full post »