Posted 2014-03-03T04:18:08Z

On February 27, 2014, we found out Edward has cancer.

This week we found out that our youngest son, Edward, has cancer. Now let me explain how that sounds worse than it actually is and how the Lord is demonstrating His incredible goodness in this situation.

Until just a few weeks ago Edward could do all the normal 16-month-old things. He could sit up and eat in his highchair chair by himself, crawl speedily around the house, stand up on his own, and walk confidently holding just one finger of a grown-up’s hand. About two weeks ago, however, Emilie noticed he had a slight tremor, and less than a week later he could no longer crawl or even sit up without falling over.

At the first signs of Edward’s tremor, his doctor ordered a brain MRI which showed nothing abnormal, leading him to believe it was likely a condition typically related to viral infections that usually gets better on its own. By our follow-up appointment a few days later, however, his symptoms had intensified and now included jerky, rolling eye movements. As this particular combination of symptoms (technically called “Opsoclonus-Myoclonus Ataxia”) is often an indicator of a certain type of cancer called neuroblastoma, the pediatric neurologist ordered more extensive testing be done right away. Thus, Edward was admitted to the Helen DeVos Children’s Hospital in Grand Rapids on Tuesday.

This is a good time to mention that the particular diagnostic procedure used to discover Edward’s tumor is only available in a very few places in the United States: Houston, Texas; Burlington, Vermont; New York City; and Grand Rapids, Michigan. It seems the Lord brought us here at exactly the right time!

On Thursday, those tests revealed that Edward has a small tumor (a little smaller than your pinky nail) just above his left lung, slightly below his collar bone. This is good news for several reasons:

First of all, there’s now a clear reason for Edward's ataxia: his immune system is fighting the tumor so enthusiastically that it’s accidentally fighting his own nervous tissue as well.
Secondly, the tumor’s location makes it relatively easy to access and, by God’s grace, remove surgically.
Thirdly, there is no evidence that the cancer has spread (metastasized) to any other part of his body, a fact that classifies it as a “stage-1” neuroblastoma. If this is confirmed by further testing and the surgeons are able to remove all or most of the mass, chemotherapy will not be needed.
Finally, there is no evidence that successfully treated stage-1 neuroblastoma ever recurs or in any way contributes to development of other cancers later in life.

There’s a chance that merely removing the tumor will completely relieve Edward’s symptoms. Of course, it’s also possible that he will still need treatment for the symptoms for a while. Though we don’t know exactly how Edward’s body will respond, there is no indication that he will suffer permanent damage from this process.

While we ask for your prayers for Edward’s continued care, we also ask that you remember to praise the Lord for the great things He has already done and will continue to do!

Interesting Facts:

Neuroblastoma is quite rare, affecting only about 650 people a year in the U.S.
Of neuroblastoma cases, nearly half are children younger than 2 years old.
About 2% to 3% of those with neuroblastoma also have Opsoclonus-Myoclonus Ataxia. This means that the number of people in the U.S. with Edward’s diagnosis and accompanying symptoms is only a dozen or so.
Opsoclonus-Myoclonus Ataxia is itself an extremely rare condition, affecting only about 1 in every 10 million people worldwide.

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Emilie DeVasher 29 Comments

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On February 27, 2014, we found out Edward has cancer.

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