On January 11, 2001 we took our then seven year-old son, Matthew, to the pediatrician because he was not using his right arm or hand. We had no idea what could be wrong. We just knew something was not right. After her examination, the pediatrician told us she wanted us to get a CAT scan immediately and that we should be very worried. By 5:00 pm that day we learned Matthew had a mass in his brain. I felt myself spiraling down into this deep, dark pit, feeling alone and full of despair.
Matthew had a MRI the following morning that confirmed he had a tumor located in his brainstem. The doctor told us Matthew had a diffuse pontine brainstem glioma and had 6-9 months to live. We were told a biopsy would be too risky and pointless and that all we could do was have Matthew get radiation treatments which would alleviate his symptoms…not cure him.
We had nowhere to turn but to God. We have been given a miracle and I cannot tell Matthew’s story without acknowledging what God has done for us. We were led to Johns Hopkins where, after reviewing Matthew’s scans, the doctors felt a biopsy should be done. Matthew had surgery on February 5, 2001 during which the surgeon was able to remove over half his tumor. After the final pathology report was in, the doctor came to Matthew’s room and told me, with tears in his eyes, that Matthew had a low-grade tumor, not an aggressive glioma. He told us Matthew would be able to celebrate many birthdays to come.
Matthew lived the next 4 years symptom free until June 21, 2005 when he underwent his second brain surgery to remove recurrent tumor. The operation was performed at Johns Hopkins by Dr. Ben Carson. That year Matthew underwent 2 more brain surgeries.
In the hopes of stopping fluid from being produced, Matthew underwent 30 radiation treatments from February-April 2006. Since ending radiation, Matthew has had his cyst drained several times. Matthew is slowly improving-walking without assistance and using his right arm and hand again.
We are truly thankful and blessed that Matthew is still alive and with us. We thank God for each day.
To read more about our journey visit our CaringBridge website.
To read about our fundraiser for brain tumor research visit www.matthewsmiles.org