Jun 16, 2020 Latest post:
Jul 22, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Kate has been having focal seizures, we believe, for quite some time. During these episodes her tongue would go numb, her speech sounded funny and she would often drool. The episodes were sporadic and did not last very long-15-30 seconds. In mid-April Kate had 2 general seizures (lost consciousness) after a focal seizure. Her pediatrician sent us to a neurologist. The initial diagnosis by the neurologist was a type of childhood epilepsy, however the short EEG and the 3-day extended EEG did not support the diagnosis. The neurologist then sent Kate for an MRI of her brain. This was on a Monday-the follow-up to discuss the MRI was scheduled for Friday, to determine how to proceed-I don’t think anyone really expected the MRI to show anything-at least I didn’t. We received a call from the neurologist’s office 30 minutes after we got home from the MRI, asking us if we could have a virtual meeting in 10 minutes rather than waiting until Friday. I knew at that time that we were about to get some disturbing news.
Kate has a brain tumor. It is located in the left posterior frontal lobe-basically her left temple. It is relatively small and just under the skull bone. There is some swelling around the tumor, which can indicate an aggressive, malignant tumor. However, the neurosurgeon (Dr. Myseros/Children’s National Hospital), is cautiously optimistic that we are dealing with a benign tumor. Ultimately, we will not know for certain until the tumor is removed and analyzed if it is benign or malignant.
A couple of days later Kate had a second brain MRI and a spinal MRI. The spinal MRI was clean-great news! The following week she had a functional MRI to determine what areas of the brain are close to the tumor to assist the surgeon with removal.
Kate will have surgery to remove the tumor on Tuesday June 16 at Children’s National Hospital in Washington DC. We are beyond fortunate to live in an area with access to some of the country’s leading experts in neurology, neuro surgery and oncology (hopefully will not need!) During the pre op appointment we learned that on either side of the tumor are the areas that control Kate’s tongue movement and expressive speech. The surgeon was happy to see that motor function and speech/reading comprehension areas are not close to the tumor. He is expecting to remove the entire tumor and we should have a preliminary assessment of tumor type sometime Tuesday with official pathology results by the weekend.
We appreciate everyone’s positive vibes, hopes, prayers, thoughts etc as Kate, Emily, Mike and I navigate this chaotic and difficult experience.
We will update this site when we can with developments.