Isn't he beautiful? My 2-1/2 year-old nephew, Nathan. He's as sweet as he looks, too. A happy, loving, adorable child. I must admit, I've got a serious crush on him.
Tomorrow this beautiful boy is undergoing surgery to remove a tumor in his abdomen. Based on an illness that began nearly a year ago, the doctors are pretty certain that this tumor is a Neuroblastoma. He began having neurological difficulties in January of last year. The symptoms were subtle, and not apparent at first. It wasn't until spring that they finally came up with a diagnosis of OMS (opsoclonus myoclonus syndrome, possibly with neuroblastoma). This is a very rare disease (maybe 700 cases per year), and primarily a pediatric, early childhood disease.
Nathan, his parents, brother, and close family have been on this roller-coaster ride since then. At the time of his diagnosis Nathan had regressed from a walking toddler saying some of his first words, to a toddler that could barely sit up on his own. He had tremors, emotional issues, and was having a difficult time eating solid foods any longer. The doctors at Children's Hospital of Milwaukee made the diagnosis and began aggressive treatment. He had scan after scan looking for the tumor that usually precedes this condition. They found none. This was a relief.
They began chemotherapy and imunoglobulin therapy. They put him on a year or more regimen of steroids that cost over $30,000 per month. He has monthly transfusions. But, his progress was amazing. By the time he left the hospital he was walking again. Regaining some strength. Within months, by the time of his 2nd birthday party in July, he was running. Miracle of miracles. Makes me cry just thinking about it.
He has speech therapy, physical therapy, he still takes steroid injections, he has a transfusion each month. He's been lucky, he hasn't had many of the side effects that come with the steroids he's getting. He's energetic. He loves The Wiggles. He can jump up and down to music endlessly. He loves Richard Simmons' "Sweatin to the Oldies" and knows the routines.
Earlier in the fall of 2008 he had a check-up with a series of tests which turned up clean. No sign of the cells that belong to a Neuroblastoma. Or so we thought. When he had his 6-month MRI, shortly before Christmas, they found a growth above one of his kidneys. This was an incredible blow, since he had recently had such a great medical review. My sister and her husband were knocked out shocked. It took time to catch their breath. The hope was that Nathan's body had already fought off the Neuroblastoma, and that was the reason for his illness. But this time, the OMS was a precursor to the tumor. Because of that, and the regular MRI's, etc., they were able to catch it early.
All signs seem to show that this tumor is exclusive. That it hasn't spread. But until the tumor is removed, and the pathology known, and prognosis and any further treatment determined, we'll have to wait. I pray that the surgery tomorrow goes smoothly. That they are able to remove it all. There is no spread of the tumor. That he will recover without regression. That he will not be in too much pain. That he will soon be a very healthy, cancer-free boy.
What I'm asking for, dear readers, is a Calling of Angels. Whether you believe in God or not, whether you belong to a church or not, that doesn't matter. This is a request for prayer, good karma, good wishes, from you, dear readers. From anyone reading this post. From anyone who wants to share this post. Please, take a moment, say a prayer, make a wish, just send a warm thought, a warm virtual hug to a small child, out through the cosmos and back again.
Life is a beautiful thing. I already know that Nathan's life is a loving one. I pray that it's also a very long one.
Thank you....Kimberly
That curly hair, dappled with sunshine. Photos from a summer day not so long ago. A miracle in action, many months into treatment for OMS. That is Nathan. A bundle of laughter, and personality. A ball of energy. A delight.
