Loren’s Story

Site created on July 13, 2016

August 9, 2023
One year ago today Loren passed on to the Heavenly Dimension! We love you Loren!!

July 2022:
Loren was hospitalized at University of Iowa Hospitals bone marrow transplant unit with an infection he would not be able to recover from.
August 1st he decided he wanted to leave the hospital so he could spend time with friends, family, and Leto his cat.
Unfortunately his team did not offer palliative care, and the only way they would discharge him from the hospital was with Hospice. This meant he couldn't continue on antibiotics. He had some sweet times at home before passing on August 9, 2022.

January 2019 Update:
Loren was 2/12 years post transplant and at a routine checkup at Sloan Kettering when Dr Boulad told him his disease had returned. It took a few days to gather the information together, but the red blood cells, white blood cells and platelets were very low and the blasts, that caused the trouble 2 1/2 years ago, had returned. The chimerism test showed 88% donor and 12% Loren.
I will start journaling in Loren’s CaringBridge Page from here.
How this story started is below.
It started in May, 2016 with a minor cut finger that became very painful and swollen. Loren had just completed his first semester at the University of Wisconsin, Milwaukee. Two years earlier, Loren had moved to Milwaukee from Iowa City to live with a group of friends. Loren soon learned that his bone marrow had failed and he was no longer making red blood cells, white blood cells, or platelets. He was 24 years old, and this is very unusual for someone his age, so doctors did more tests and found that Loren has a genetic type of bone marrow failure called Fanconi Anemia (FA), type A.  His bone marrow had developed MDS, and was in a stage called RAEB-2. The only cure is a bone marrow transplant, and it is urgently needed because in people with Fanconi Anemia, MDS soon becomes full leukemia. FA causes all of Loren's cells to be fragile and unable to repair themselves when damaged. That makes it vital for Loren to be followed and treated at a Fanconi Anemia Center where all the staff have experience with these patients.
It's a long story how we ended up going to Memorial Sloan-Kettering Cancer Center, but it became clear after a lot of prayer it was where Loren needed to be, and it's good to be here! (written by Loren's Mom, July 2016)


Mom's Update March 29, 2017: Today is Loren's 25th Birthday! He had a second birthday - July 29, 2016 when he received a "MUD" (matched unrelated donor) stem cell transplant. Because of his genetics, he had low-dose chemo without radiation before transplant and the donor stem cells had lymphocytes removed to protect Loren from Graft vs Host disease.   Today he is 8 months post-transplant and back living in Milwaukee near friends and the university of Wisconsin Milwaukee, where he plans to finish his degree in conservation with an emphasis on microbiology. We celebrate!!!


Newest Update

Journal entry by Donna Hemingway

Hello!
The most exciting and fun thing for me to report is that I have my own little apartment in Tarrytown, NY! My new address is 49 Main St, Apt 1F, Tarrytown, NY  10591. Emily and her family live about 20 minutes from here. There is a young man living on the farm in Iowa and taking care of things there, including Molly Brown the cat. Gus the dog and all the farm animals have moved to new and very loving homes. I fly back on a regular basis to check on things. So far so good! 

Tarrytown is a beautiful, old river town on the Hudson, and just a few steps from from my building's front door I can see the river go by and the Tappan Zee Bridge lit-up at night. I'm finding it has a sweet sense of community. People will talk to me on the street, and when I tell them I've moved here they all tell me this is the best little river town to live in. 

My apartment is called a first floor walk-up in an old brick building with 3 floors about the shops on the street. It's above a restaurant called Little B's. They have wonderful natchos!!!! Across the street is Muddy Waters coffeeshop and my favorite drink there is a Chagaccino (also known as "your coffee's BFF with benefits" -- you can google it).

Next to the coffee shop is the Tarrytown Fire Dept Headquarters. The first time the fire alarm went off in the middle of the night I heard 4 long blasts from something that sounded like a foghorn right outside my bedroom window... I felt my bedroom window and walls shake, but now I am used to it, and I no longer jump at the sound. Not so different from West Branch, now that I think about it.

Up the street is the Tarrytown Music Hall, and it opened in 1885. It's been somewhat restored so it is usable, and very beautiful, but it still looks quite old and I heard the ghosts won't let them do any more updates. I plan to volunteer there over the next year. 

I've been fortunate that the Fanconi Anemia Research Fund sponsored a support group for families who have lost a loved one to FA or FA treatment related complications. It meets every other week and has been helpful. In this moment I'm considering creating a podcast for Bone Marrow Transplant Caregivers. I've searched, but have not found one out-there for this unique caregiver group. If I decide to do it, I will let you know.

I'll stop here... So grateful for the many good things in life and that includes YOU! So grateful that Loren's life brought us here to New York.
With love,
Donna
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