We all have that special bedtime routine for our child. We may read a story, say a prayer, and tuck them in. We might even leave the light on in the closet to keep the “boogie man” away. There are always lots of hugs and kisses and deep in your soul you know there is no better way to end your day than to tuck your precious child in and watch them fall asleep. They are so innocent and beautiful when they sleep – your heart almost feels as though it skips a beat as you watch them. There is nothing more precious to see than your child sleeping peacefully after a long day of fun and activities. It is an amazing way to end an evening.
Now, consider for a moment doing all those things, feeling the depth of love you have for your child when suddenly you remember what the doctors have said and you are stopped in your tracks. You no more than close your child’s door when you are gripped by the fear that there is a time bomb underneath your child’s bed and there is nothing you can do. Doctors cannot tell you if it is ticking, they cannot tell you if it has a fuse, and if it does, how long the fuse is. What they can tell you is that one day, perhaps around age 11 your child could be diagnosed with cancer. This is the feeling Amanda has many nights when she puts her beloved son Drake to bed, because Drake has neurofibromatosis.
Drake was born in 2005. He was an apnea baby and wore a monitor for the first 2 years of life. He also has racing heart syndrome, a murmur and asthma. That’s a lot for any young child and his parents. Just being able to tuck Drake into bed without the apnea monitor was such a huge milestone. You can only imagine what it must have been like when Amanda and Drake went for a routine doctor visit at the age of 4, already having faced so much, only to be told they were referring him immediately to a pediatric oncologist (cancer specialist). Can you imagine going in for a regular check up with your 4-year-old and getting referred to an oncologist?
Drake had benign-appearing brown spots on his hand, foot and shoulder. Up to this point they had been considered nothing more than birthmarks. At the oncologist’s office they heard for the first time, “neurofibromatosis.”
There are 2 types of neurofibromatosis: Type 1 affects 1 in every 3000 people and the neurofibromas develop along the peripheral nerves (those outside the brain and spinal cord) under or on the skin and just outside the spinal cord. The second type affects 1 in every 40,000 people and it can cause tumors of the auditory nerve (ear) and sometimes tumors in and around the brain.
As in Drake’s case, NF1, the brown spots, otherwise known as café au lait spots, develop on the skin and can easily be mistaken for birthmarks. They may appear quite innocent, but between the ages of 10 and 15 these harmless spots can begin to grow.
Drake was also referred to an ophthalmologist to check his vision, as poor vision is often associated with type I NF. Sure enough, he has a lesion behind his retina as well.
Because Drake is only 5 the doctors can only monitor him. His family has been told to observe him routinely for bumps, knots, dizziness or other neurological impairments which could signal the disease is becoming active or progressing.
In part two of this feature on neurofibromatosis we will discuss more about the disease, the causes, and what, if any treatments are available. Just as in Drake’s case, what was originally thought of as a birthmark may be something more significant. If your child has areas of discoloration or brown spots, bumps or lumps under the skin, please make an appointment with your pediatrician or dermatologist. As with any disease, early detection offers the greatest possible outcome.
Each day is a gift. Just as in Drake’s story, and with Laurren’s story, battling another form of cancer, a simple visit to the doctor can turn your world upside down. Hug your child each chance you get. Never miss an opportunity to share a smile, and speak the 3 most important words there are to them – “I LOVE YOU!”
In the video that follows, you will learn more about NF1, but more importantly, you can appreciate through the words of a child how important it is to never take anything in life for granted. Be blessed!