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Carlin was born in April of 2011 – she’s 2 years, 9 months old. In October 2013, she had a seizure at home which led to an MRI, revealing a small tumor. The initial diagnosis was “most likely a low-grade glioma”, and that a “wait and see” approach would be a good plan. Our research indicated that children recover from brain surgery best when their brains are young and plastic, so we made a tough decision to resect the tumor at the earliest opportunity. That opportunity came the day before Thanksgiving. The surgery lasted almost 8 hours, and 4 days later she was at home, running around like any other little kid (for the most part).
Our hopes of a putting the experience in the rear view mirror were dashed two weeks later when the doctors told us that the tumor was in fact something called ETANTR (Embryonal tumor with abundant neuropil and true rosettes). ETANTR is very rare (luckily), very aggressive, and has a poor survival rate (approximately 15% survive for 3 years, the median is 12 months). Carlin is fortunate in that the tumor was relatively small and, hopefully, fully resected.
Unfortunately, the nature of the beast is that tumor cells are likely to have escaped and are circulating in her central nervous system. The only course of treatment recommended by all the experts is high-dose chemotherapy (with stem cell rescue) and radiation. She is on a clinical trial (PBTC-026) that adds a few oral chemo meds to the high dose chemo. She began the first of many rounds of chemo in December. She is being treated at the Cincinnati Children’s Hospital. March through May will most likely be inpatient predominantly. After that, radiation will probably take place somewhere else, such as Houston, Boston, or Philadelphia. That is too far down the road to know yet. Harper, Carlin’s 6 year old sister, continues to attend the Versailles Montessori School as a kindergarten student.
We are fortunate to have excellent medical insurance at this point, but expenses for travel, lost wages, and unknown future treatment needs and care will be significant. Friends, family, and complete strangers have already been incredibly generous with their time, money, meals, and support. Our point is not to actively solicit funds, but many have asked to help in some way, so please know that any contributions will be used to directly support Carlin.
With sincere thanks,
Rick, Wendy, Harper and Carlin
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