As most of you know, in 2010, Willow was born at 27 weeks and weighed just 1 pound and 7 ounces, able to fit in just the palm of her mom or dad’s hand. Willow fought long and hard, and after three months, she finally came home as a healthy, happy baby. Despite being small for her age, Willow enjoyed good health for nearly ten years following those difficult early months. Unfortunately, our born fighter could now be facing another round.
After routine bloodwork in August 2019 came back very abnormal, Willow was referred to a pediatric hematologist and oncologist at the Valerie Fund Children’s Center in Morristown. Following multiple blood tests and a bone-marrow biopsy, Willow was diagnosed with Bone Marrow Failure Syndrome (BMFS) in October. After additional testing on the bone marrow, she was diagnosed with Monosomy 7 in November.
What does this mean? It means that Willow has malformed cells accumulating in her bone marrow that are interfering with the production of normal blood cells because she is missing one of the two copies of chromosome 7 we all normally have. Not everyone who is born with this missing chromosome goes on to develop this condition, but in Willow’s case, this is unfortunately what has happened. While her cell counts are very low, it is extremely positive that she is not showing any signs of being sick and that she hasn’t developed any leukemia cells. We are very lucky that we were able to catch this so early.
Following her diagnosis, Willow was referred to Children’s Hospital of Philadelphia’s (CHOP) bone-marrow-disorder treatment center. On November 22, we met with CHOP and they explained that it is important to identify the underlying genetic predisposition syndrome Willow has, as this will help to direct her treatment. CHOP only sees three to five cases like Willow's each year, and although they have all ended in bone-marrow transplants, there is a small chance CHOP will opt to just monitor Willow with bloodwork and biopsies.
To determine the appropriate course of treatment, Willow will have further genetic testing at CHOP on December 16. At that time, she will also get another biopsy. The additional biopsy is to give the medical team a “point A to point B”, which will indicate whether her malformed cells have become more aggressive or are stabilizing, which will show us how quickly they need to react with treatment. Because a transplant is highly likely, they also tested Helena and Scarlett as possible bone-marrow-donor matches.
We are using this website to keep family and friends updated efficiently and from one central location. This page is being managed by a family friend, Andrea Lovas, with regular updates being provided by Erica and Pete. If you have any questions and/or messages, please include them here so we can provide answers as appropriate to all those who love Willow and her family.
We will also use this page to let everyone know how they can best support the Butkosky-Huber family. Right now, what we need most are your positive words, hope, love, and prayers. Thank you for visiting and for your love and support. It means so much!