Welcome! We've created this site to keep friends and family updated on Eli's health and well being. It's a happy place where people can come read what E's been doing, read some of his stories, & check in with our family. When there are big health updates, we pass those along in the My Story section (click "My Story" tab above to see the whole thing) & in the journal.
Eli was diagnosed in March 2011 with Fanconi Anemia. For the story of how we got here, see Journal entry THURSDAY, FEBRUARY 24 (
http://www.caringbridge.org/visit/elilana/journal/16).
This page is set up for all to visit as often as they wish to share stories, prayers, positive messages and smiles in our Guest-book. We hope it provides insight and answers to those following our journey, and those starting theirs.
We are smiling in the face of fear and know that soon this will all be behind us. Eli loves to laugh and hear funny stories. Please feel free to write to him here. He's reading now with a little help, and loves to read riddles and jokes!
Here is an overview of what we know today:
- Eli has Fanconi Anemia which causes bone marrow failure and involves a high risk of future cancers (Diagnosed March 10, 2011).
- Eli has received countless transfusions of red blood cells and platelets; more platelets than red blood.
- Three bone marrow registry events were held in Eli's honor, and we registered 683 people on the National Bone Marrow Registry. That number continues to climb as we keep spreading the word.
- If you wish to be entered in the National Registry for bone marrow donation for a person in need, visit www.marrow.org (
http://www.caringbridge.org/visit/elilana/mystory/www.marrow.org).
- Chemo started on Wednesday, April 13 to destroy his diseased marrow and make room for his new marrow stem cells.
- Eli received his Bone Marrow Transplant on April 22, 2011 from an anonymous perfectly matched 43-year-old female unrelated donor.
- On Day +13 post transplant, we received results that showed 100% engraftment from his transplant.
- Eli is an amazing strong kid who did not and does not act sick, and more than anything wants to go home and get back to school. He has a long road ahead and could spend up to 6 months in Cincinnati receiving treatment.
- For more info on Fanconi Anemia see www.fanconi.org (
http://www.caringbridge.org/visit/elilana/mystory/www.fanconi.org). Briefly,Fanconi Anemia affects mostly children and causes bone marrow failure often by age 6 or 7. Kids with FA are 500-700 times more likely to develop cancers early in life in addition to often being born with physical anomalies. This is an incurable disease, though the BMT will fix the blood problem. Life expectancy for those diagnosed with FA is between 20 and 30 years old.
- Eli passed the milestone of Day +100 post BMT on July 30th, 2011 and we anticipate just a few more weeks of Cincinnati treatment here
- Once home, we'll return every couple weeks to Cinci, and be treated weekly, or several times a week, by Golisano's Children Hospital at Strong.
- May 2013: Now Eli is in 2nd grade and loving it. He's doing very well considering all of the time he has lost. He visits doctors routinely and will do so for the rest of his life. His remaining med is an occasional infusion of IVIG for his immune system, and that's it. He is a bone marrow transplant survivor. Amen.
- December 2014: Eli is about to turn 10 years old and is doing great. Some thyroid issues affecting growth but he's healthy otherwise. Blood checked once per year and annual screenings for head and neck cancer.
