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11/6/2016 Latest post:
Welcome to Lincoln's CaringBridge website. We are using it to keep family and friends updated in one place during our journey. We appreciate your support and words of hope and encouragement. We are so blessed to have so many people who care so much about our children.
As most of you know our youngest son, Lincoln was diagnosed with Langerhans Cell Histiocytosis (LCH) on November 2nd 2016 at just 6 months old.
*To understand more about this extremely rare autoimmune disease/cancer please check out histio.org (go to disease information and then LCH in children.)
When Lincoln was 4 months old he started to develop a very small patch of spots on his belly and diaper area. It was brought to the attention of his doctor at his 4 month visit and he was diagnosed with eczema. Over the course of that month despite efforts to moisturizer as directed the area became worse. At 5 months we brought Lincoln back to the doctor where he saw a NP and we were prescribed a topical steroid. After a week of using the steroid there was no improvement and we returned to the doctors again. During this visit his doctor consulted other doctors in the practice and no one seemed to be familiar with what the rash was but agreed it was not eczema. We were then referred to dermatology.
After seeing dermatology at SSMC and still not getting answers we were referred to a pediatric dermatologist at MGH. It was at that time they performed a skin biopsy on his back and we realized this was more than just a rash. We were told they needed to "rule out" histiocytosis and to "stay off google." During the next week we did our research so we knew what we might be dealing with when the pathology results came in. We were extremely scared and heartbroken for what may be in store for our baby.
Exactly one week later the doctor at MGH called to inform us pathology came back and that Lincoln did in fact have Langerhans Cell Histiocytosis.
Lincoln is a very happy and healthy baby despite his diagnosis. He is always smiling and attracting attention from every one everywhere we go. He is top of charts for weight and height and developing right on track. He already has 2 teeth and he's about to get 2 more!
As we coordinate Lincolns care and meet with oncologists and have various tests performed we will use Lincolns CaringBridge site to update the many friends and family that care so much about him.
We are so very grateful for such amazing friends and family to support our family during this journey to get our baby the best treatment possible.