Oct 28, 2017 Latest post:
May 12, 2019
Welcome to Ethan's Caring Bridge Page. This is a place for us to update Team Ethan through his journey.
Ethan showed symptoms that he had started early puberty. Lab results confirmed the physical changes in his body and he was sent for a MRI before starting therapy to pause the early puberty. The MRI was expected to rule out a pituitary tumor. Pituitary tumors are rare but can be the cause of early puberty (called precocious puberty). Ethan did not have a pituitary tumor, but the MRI revealed a much more rare tumor. Ethan's tumor is in a part of his brain called the hypothalamus. This tumor is responsible for the changes in his body.
There are many types of brain tumors. After meeting with the neurosurgeon and oncologist we learned he likely has a low-grade glioma. Most low-grade gliomas are highly treatable. As far as brain tumors are concerned this is good news. Unfortunately his tumor is located in a part of the brain that very important in the functions it controls and is hard to reach. Therefore removing the tumor through surgery is not recommended. The recommended treatment at this time is chemotherapy.
While MRI and CT scans are very good at showing that parts of the brain are abnormal, they can't yet tell us with 100% certainty what type of tumor is seen - a low grade tumor, a high grade tumor, or tumor sub-types. Ethan may be getting a brain biopsy to determine the best and most effective treatment plan, as well as exactly what type of tumor he has. Brain biopsy is the removal of a small piece of brain tissue for the diagnosis of abnormalities of the brain under the microscope. Although there is risk with any procedure it is considered pretty safe. We are not 100% sure whether we will choose the biopsy at this point as we are gathering a bit more information on the risk and benefits.
At this point, we are hoping for the next MRI of his brain and spine (and the Biopsy?) to be completed before Nov 7th.
We were also told to remove the terms 'benign' and 'malignant' from our vocabulary for this specific tumor. It was explained that this is a slowly growing chronic condition that will undergo weekly chemo treatments for the next year, then get tested regularly (MRI's). The goal is not to remove the tumor, though chemotherapy may shrink it. He will have follow-up MRI's to keeps track of it throughout his life. If it does grow, he will then undergo another round of chemotherapy. The chemotherapy used for this type of tumor is typically fairly well tolerated. He may or may not have nausea. He may or may not have some hair-loss.
Ethan will also begin monthly Lupron injections to pause the early puberty caused by the tumor. Lupron suppresses the hormones causing the early puberty. Because he is 3 years from expected start of puberty, he is expected to be on the Lupron for 3 years.
The bottom line is we have every reason to believe Ethan will be okay. He will stay in school, we will get to go on vacations, he will give Tyler hugs every morning, etc. It won't be the easiest road over the next year...but we are in really good hands.