In January of 2018 Abigail, at just 11 months old, was diagnosed with Langerhans Cell Histiocytosis (LCH) which is a cancer of the myeloid cells similar to leukemia. This is a rare disease that many people have never heard of.
The disease has a variety of presentations from mild or “low risk” to severe or “high risk”. Abigail has a high risk form of the disease. She presented with a scalp rash similar in appearance to “cradle cap” and tiny red spots on her scalp and lower abdomen. Skin biopsy at that time confirmed LCH and her family sought evaluation in January with an oncologist. At that time her disease was thought to only involve the skin.
The skin rash severely worsened involving her scalp and diaper area. When they followed up for surveillance in July 2018, their worst fears were confirmed. She had diffuse liver, spleen and middle ear/tymporal bone involvement with mastoiditis. She has some associated hearing loss and speech delay. This prompted the need for systemic chemotherapy immediately.
They traveled to Texas Children’s Hospital in Houston for treatment as they have dedicated doctors that specialize in this rare cancer. She started a mild chemotherapy in August 2018 which she tolerated
well. Unfortunately on recent follow up in November her disease showed progression on the current therapy. Therefore Abigail has now started a more toxic chemotherapy regimen that will suppress her immune system significantly and cause her to feel bad. She will be at high risk for infections. She may require blood and platelet transfusions in between chemotherapy cycles. She will continue this chemo regimen for one year starting November 2018.
She will not be able to start PreK. Abigail’s liver damage is significant and if her disease does not respond to this
therapy she could potentially need a liver transplant in the next few years. She also is high risk for the neurodegenerative manifestation of the disease causing difficulty walking and developmental abnormalities. If she does have a good response to this chemo regimen, it may be curative.
Abigail however remains full of smiles, and is so strong. With such a long year of treatments ahead, sweet Abigail needs a beautiful and exciting space to look forward to coming home to! Abigail has a big sister Madison
whom she shares a room with (almost 5) and two big brothers James (19) and Matthew (17). We so look forward to being able to provide this precious almost 2 year old with a room to heal!