In late April, Job started exhibiting unusual neurological symptoms. He was acting spacey, his eyes would become unfocused, and he started speaking slower. I called his pediatrician on May 2 when Job told me that he could see two of everything and he heard ringing in his ears whenever he laid down. The pediatrician told us we should go to the ER so they could perform any tests necessary to find the cause.
On May 3rd, Job had an MRI scan at Vanderbilt Children's Hospital that revealed a large and aggressive brain tumor called "DIPG".
DIPG is rare (200-300 cases in the US annually), incurable, has almost no known cause, and has a less than 1% survival rate for 5 years. The median survival time is 9 months from diagnosis.
The tumor is in a part of the brain (called the pons) that controls a lot of the body's essential bodily functions (such as heartbeat, breathing, swallowing, eye sight...). For this reason, the cancer is inoperable, and chemotherapy has no effect on the tumor.
Jobs treatment plan and symptoms:
The standard treatment across the world is steroids and radiation. With no treatment, Job was given about one month to live. With steroids and radiation, there are almost no side effects, it will improve his quality of life, and his life span will likely be stretched to an estimated 6-15 months.
Job started taking steroids on May 3rd to help shrink the tumor before radiation. This is a temporary measure to help reduce the inflammation of the tumor. The steroids are helping to relieve some of his symptoms, but they are also making him really hyper and hungry (he will probably gain weight and retain water for a couple of weeks).
On Tuesday (May 9th) he will begin radiation treatments 5 days a week for 6 weeks (30 treatments total). The radiation may cause the tumor to temporarily grow (which is why he is taking the steroids), but it will cause it to shrink significantly in the following weeks. There are almost no side effects to the radiation. Job has a PICC line in his arm, and he is sedated during the treatments, so he should not experience any pain or discomfort in the process.
The doctors are confident that the radiation will be able to shrink the tumor enough that Job will be able to temporarily live a very normal looking life. The cancer will not go away, but there will be a period of time when he will feel and act normal. Job's doctors are estimating that it will be anywhere from 6-15 months, but it is hard to predict. After this, the cancer will return and there are few further treatments that have shown any real promise.
While we welcome everyone to do their own research, we want to stress that our hope is NOT in a cure. Our hope in NOT in attempting to make Job's life as long as possible. Our hope is in the LORD. Our hope is that the LORD will use this trial for good and for His glory. While we fully believe and pray that God is able to heal our son's body, we pray more fervently that God would give him faith in Jesus. "The sufferings of this present time are not worth comparing to the glory that will be revealed to us." Romans 8. We have the hope of eternity with God.
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