Meet Orlan – Langerhans Cell Histiocytosis

Meet Orlan – Langerhans Cell Histiocytosis

by | Aug 8, 2024 | Fighter Sessions, Langerhans Cell Histiocytosis

Orlan had an itchy head, presumed to be cradle cap since he was less than one year old. It was later labeled eczema, yet remained resistant to any treatments to reduce the flakes or itchiness. In April 2024, he had a “goose egg” near the top front of his head. After it not going away for over a week, I showed it to his dermatologist, who said it could be reflecting the infections he was found to have from itching so much that his head was bleeding. When a course of antibiotics didn’t shrink it, we had an ultrasound, then a week later, an MRI. When the MRI showed it was cancer that had eaten through his bone, we brought him back in the next few days for full-body x-rays, blood work, specialist consults (neurosurgery, oncology), and a biopsy of the site. At this point, he had a second, smaller lump on his opposite temple and a third visible only on the MRI. The tests confirmed Langerhans Cell Histiocytosis, multi-system, multi-site, low-risk.

All year we’ve been careful about germ exposure due to his frequent neutropenia. We avoid events with lots of children, have missed holidays, and even hired a monthly cleaner to help reduce exposure in our home. He’s had chemo holds 3 times so far due to low blood counts, meaning we then stay in isolation for 1-2 weeks until his counts are high enough to start chemo and go back to our new normal.

While Orlan remains playful, the cumulative effects of chemo are taking hold – he gets tired more easily and needs a lot of breaks from all of the running and biking that he wants to do. We got a grant for a wagon that he loves to take breaks in if we go to the zoo or somewhere else that now requires too much walking for him.

Both parents are making career shifts to enable more time with family in the years ahead. This year made it clear that family is a much higher priority than career. 

Hope session by Sweet V Photos | Facebook | Instagram

Meet Mackenzie – Langerhans Cell Histiocytosis

Meet Mackenzie – Langerhans Cell Histiocytosis

by | Sep 5, 2023 | Fighter Sessions, Langerhans Cell Histiocytosis

Mackenzie is a social butterfly and can make friends anywhere. She loves animals, especially her dog, music, anime, and fashion- but more of a slightly alternative kind, not too out there, but definitely some punk or goth-type influences in her style.

Mackenzie was diagnosed with Langerhans Cell Histiocytosis in December 2014, when she was 3 years old. She had chronic ear infections and skin problems, and a CT scan to check her ears showed skull and mastoid destruction.

She had the standard port placement and nearly 2 years of IV chemo at the start. We moved to targeted therapy (much easier oral chemo after relapse number 2). She has had a few lumbar punctures, brain MRIs, and echo/EKGs every 3 months. She has been in physical therapy, speech therapy, occupational therapy, and counseling off and on. She is currently only in occupational therapy and counseling.

All things considered, Mackenzie doesn’t have very many limitations. She has suffered several relapses in the central nervous system and brain that have had some effects. Her speech is slightly slower than normal, and sometimes weirdly forced. Her coordination is not 100%, but not too bad, She can’t ride a bike or stand on one foot for long, but unless you knew to pay attention, you wouldn’t notice. It has also affected memory and information processing, she’s a little on the slow side of “normal” but is holding her own in school.

Mackenzie’s diagnosis was a huge shock and change at the start. It feels like a weird normal now, and her siblings were both born well after diagnosis, so it’s all they’ve known.

Mackenzie’s Support Page

Hope Session by Four Twigs Photography | Facebook | Instagram