Tara and I are asking for prayer. Our daughter Galyna has been diagnosed with a pretty rare disease called Langerhans cell histiocytosis (LCH). Although she has been a very healthy baby about 2 weeks ago she began limping and leaning forward, as well as waking up at night. This led us to visit All Children’s ER and later get admitted into the hospital. After a series of tests, including a biopsy, the doctors determined that she has 2 tumors on her spine that are caused by LCH.
In simple terms, LCH is when white blood cells spontaneously begin building up in a specific area as if they are ready to fight an infection. However, since there is no infection they begin attacking the area they gathered around, and in Galyna’s case that’s T3 and S1 vertebrae.
So what now? Galyna will have an IV port surgically implanted on July 2nd and have her first chemo session same day. Her entire treatment will take no less than a year. During this year she will visit All Children’s outpatient clinic at least once a week to receive medication through the IV port, and other medication can be administered at home.
First 12 weeks of treatment will be more aggressive, and Galyna will have a PET scan every 6 weeks to see how she is doing. Based on the results they will adjust her treatment plan. If all goes accordingly to plan, after 12 weeks she will need to go to the clinic only once every 3 weeks through the rest of the year. She will have to receive treatment for the entire year regardless of how effective the treatment works to avoid future relapse.
Since LCH doesn’t progress or grow rapidly, it may go undiagnosed for quite some time. Although we have been sharing these news with the closest family and friends, we think it is important to share this with a broader audience for awareness. It is estimated that LCH occurs in 1 out of 200,000 children, and not every facility is familiar with a protocol on how to diagnose or administer treatment. Galyna is the 4th patient at All Children’s this year so we are fortunate by the fact that they have dealt with this before.
We ask that you pray for Galyna’s surgery, success of her treatments, absence of side effects, and ask that you pray for full recovery of the affected areas. Please pray for no effects on her development and growth.