In February 2011 my son Eli was diagnosed with Fanconi Anemia. FA is an inherited disorder that can lead to birth defects, bone marrow failure, and a variety of serious health concerns including leukemia and cancer. Bone marrow is the spongy tissue inside your bones responsible for growing blood cells and producing your disease fighting cells, and Eli’s was no longer functioning. Though signs were present in utero, Eli did not get diagnosed with FA until after he was already in bone marrow failure at age 6. Without a successful transplant, he would have died. He was dependent on transfusions and was very sick.
We sought out one of the few Fanconi Anemia comprehensive care clinics in the country at Cincinnati Children’s Hospital Medical Center for Eli’s bone marrow transplant. It was our only chance fix his failing bone marrow and to get the specialized care he needed to treat his disease.
This is the story of Eli’s transplant and recovery told through my images.
Lamar Advertising posted billboards around the country for Be the Match awareness using Eli’s picture. This one was in Newport, Kentucky; minutes from CCHMC.
Prior to diagnosis, bone marrow has failed but we don’t know why. We were praying for leukemia, because we were told the alternatives were worse. He didn’t have leukemia.
Hospital Admission Day, April 10, 2011. Central line placement scheduled for April 11.
Chemo has begun, no turning back. They count down days to zero for transplant, and count up after cells are delivered. Feeding tube placed on day -1 as food aversions have set in.
A pole full of chemo, anti-seizure meds, nutrition, pain meds. My sweet boy…
Endless beeping. We made up songs to the electronic tunes.
Barf bin at the ready.
A prize from an RMH Easter drawing, much loved.
He never lost his sense of humor.
The cells arrive on day +1, April 22, 2011. 20cc. Good Friday.
The blessing of the cells with nurse Erica and hospital chaplain.
Precious life, precious cells.
Administering the cells to sleepy Eli.
The transplant is complete. Grow cells, grow. Thank you donor, thank you.
A note arrives from Eli’s donor.
The worst days are here. Days +4 thru +10 are rock bottom. Tense moments, non-stop praying.
The hair loss has started, mucositis at near peak. He vows that after his hair grows back he won’t cut it ever again.
RMH handed out crowns to celebrate the Royal Wedding of Will and Kate. We didn’t watch, Scooby Doo on Zombie Island was of greater interest.
Around the clock monitoring.
Day +9. Trying some water in a cup.
The last picture taken for a while.
Lucky to have only had this many meds to take several times a day via feeding tube.
How’d you like to get discharged today Eli? May 17, day +26.
Eli’s room emptied, waiting for the wheelchair to head out to the Ronald McDonald House for the next phase of treatment!
A CCHMC send off, for he IS a jolly good fellow.
In this crowd of silly hats is a nurse named Brandi, who suctioned out his clogged airway during an anaphylactic reaction to platelets and who stayed at his bedside until her shift was over.
Beads of Courage
His bone marrow transplant bead.
Our sweet suite, courtesy The Dragonfly Foundation
Cheering on the Reds, back pack contains his feeding pump.
Loaded up with Reds memorabilia, such a great day.
The tell-tale hair growth of a kid on cyclosporin. He’s pretending to eat cotton candy
We didn’t leave the room at RMH without the blue mask. Period.
Have mask and alcohol wipes, will travel.
Getting stronger at the RMH
Dr. Myers says we get to go home! Day +132 post BMT. A total of 147 days spent in Cincinnati, 520 miles from home.
Saying good bye to Ronald McDonald House of Cincinnati, Room 72
After roughly 5 months, Eli comes home
Make-a-Wish trip for our family that had spent too many months far apart.
The one smile in a sea of faces. Happy to be alive and in a Star Wars disney parade.
Eli gets to pick a kitten, from an entire box of kittens. That he wished for. True story.
The hair is cut in preparation for his full time return to school, September 2012, second grade.
Eli’s Bone Marrow Donor (right) October 18, 2012
Eli as a healthy second grader, April 2013