Our son Leo told us he had a headache three days in a row upon waking up. My husband, a family practice physician, told me that children don’t have headaches and on day three, had Leo go for a CT scan. Our world turned around when we saw a tumor that was one-third the size of the back of his brain. It needed to be taken out immediately.
Sept. 2, 2009, was when our nightmare began. Leo underwent a seven-hour surgery. The surgeon came out after just a few hours to tell us that the frozen section of Leo’s tumor revealed that he had medulloblastoma. This type of brain tumor only affects 500 children per year. Our Leo had gone from a healthy boy starting school to a boy who could no longer turn over in bed due to weakness and lack of coordination caused by the tumor.
We found out within a few days that Leo’s tumor was metastatic, which put him in the high risk category. We were exhausted from getting terrible news each day. Leo was clinging to his life.
Leo now is near the end of his aggressive chemotherapy which requires four day hospitalizations every 28 days. His second and third MRI of his head and spine are negative for new tumor growth and his lumbar puncture is negative of tumor cells. His metastatic tumor in his low back has shrunk to half the size it was when chemotherapy started. Leo now is able to walk with his walker. To our dismay, he uses it to chase his sister around!
The physicians and medical team at Children’s Hospital of Wisconsin have saved my son’s life. Leo’s diagnosis has very grim statistics, but so far he is beating the odds. His neurosurgeons skillfully teased his tumor away from his brain stem, where any slip could have cased instant death. Because his tumor is so aggressive and a cure is not yet found, Leo’s oncology team enrolled him in research protocols. Through it all, they treat Leo as if he was their own son.
This is not just a job for the physicians and the oncology staff here at Children’s Hospital. You and your child are not a number. They know you by name, they know your diagnosis, but most importantly, they take the time to know you. This hospital is a blessing in a time of crisis.
~ Jen Montemurro, mother of Leo, guest blogger