Harriet's Journey Langerhans Cell Histiocytosis

On 01/06/2023 our 4-month-old baby girl, Harriet was diagnosed with Mulit-System Langerhans Cell Histiocytosis, affecting the bones in her shoulder, ribs, spine and eye socket, her liver and the skin on her scalp.

We initially noticed on 23/05/2023 that Harriet had stopped lifting her left arm, she could still grasp items but was very reluctant to move it, we were concerned enough to take her to Gold Coast University Hospital’s Emergency Department. After a couple of examinations and an X-Ray, the findings were that she had an area in her shoulder bone, about the size of a 10c piece that looked as if it was missing, the Doctor was concerned and thought it could have been some sort of bone infection. We were kept in the hospital for a few days whilst they did all sorts of tests, MRI, PET, CT scans, and biopsies to try and figure out what was going on. It wasn't until a week later that we had an official diagnosis.

Simply put Langerhans Cell Histiocytosis is a rare disease that occurs when normal Langerhans cells lose their ability to fight infection and instead group together to destroy healthy tissue. This cluster of abnormal cells results in tumour-like lesions that begin to destroy normal tissues in the bones, skin, or other body systems.

LCH in Australia isn’t classed as a Cancer (although the UK and the US do) it is treated in the same way. She is being looked after by the Oncology department and currently, Harriet is 6 weeks into her Chemotherapy treatment, she visits Queensland Children’s Hospital, once a week and has a multitude of different drugs Lindsey and I administer daily at home.

Over the coming months I will be training up for a Charity event in April ‘24 where I plan to run from Gold Coast University Hospital to Queensland Children’s Hospital in Brisbane, it is roughly about 73km equal to about a Marathon and a half (plus a bit). Harriet’s journey started in the Gold Coast and hopefully will finish up in Brisbane once her treatment finally ends.

My goal is to raise $10,000.

The funds will be split with 40% going to Redkite, which is Australia's leading childhood cancer support charity. Families facing childhood cancer access free practical, emotional and financial support. They have been looking after us since the moment we were admitted into QCH and have been very helpful with any needs, Harriet, Lindsey or I may come across.

40% will be going to Fiona Elsey Cancer Research, their research is directed towards understanding the basic biology of histiocytic diseases. They play a vital role in understanding the disease and hopefully, one day, finding a cure.

The final 20% will help us directly as a family. Harriet has weekly trips to the hospital which include parking fees, fuel costs and prescription medicine. Also, with Harriet’s chemotherapy treatment, she has become immunocompromised meaning her ability to fight off viruses and infections is significantly lower than other children her age, which in turn means she cannot attend any daycare. Lindsey has had to sacrifice returning to work after her maternity leave had ended, due to Harriet’s needs meaning we are down to just one income for the household.

Any donations would be hugely appreciated, along with my run in April there will be multiple different events happening to raise funds which everyone is welcome to be a part of.

Dave, Lindsey and Harriet.