The world of childhood brain tumors has no “Welcome” sign leading into it. No matter what anyone says to minimize the situation, this statement is the most painful sentence a human can hear. The combination of fear, shock and pain can be too much to bear.
“To see such innocence, so roughly shaken by this terrible trial, at such a young age, is nothing short of incomprehensible.” I still hear this sentence, uttered by a visibly shaken parent. Instead of becoming more routine and distant, the visceral terror that it engendered in me (the supposed all-knowing physician/advisor), my delivery of such information has grown more and more difficult, even personal. I watch my own small children grow and develop. As a physician, one realizes that more than ever, there is no place for impersonal behavior when caring for the children who are afflicted by a brain tumor, benign or otherwise, and for their families as well. No amount of experience or training can help one to ease or minimize the situation.
When we discuss special areas such as:
- Outcome: Does “excellent long-term results” mean a ten-year survival for a 3-year old– your child living long enough to be frustrated by death at the age of thirteen? We parents think only of 50 and 60 year plans. Five- and ten-year plans are unacceptable. We want to know that our grandchildren will not live to see their parents die at a young age.
- Quality of life: Does that mean that a 5-year old child will have no hair, be skinny and slow to walk and play with his friends and classmates? How can we parents bear to live through the process of trying to give our child a childhood instead of a world of I.V. tubes, doctors who speak of life-and-death, hospital corridors and toys that our children will never play with?
- Doctors: Who are they? Can we do anything to keep them human, warm, and caring for our child? How do we deal with our own resentment for the fearful news, difficult therapies and their human frailty? How do we keep our child happy to see them? Most children cringe at the mere mention of visiting a doctor-with-a-shot-to-give, or a visit to the dentist with his drills and instruments.
- Hospitals: How do we keep these innocents away from such large and frightening monoliths?
- We parents: How can we possibly bear all of this without frightening our little, loving child?
- Hope: Yes, there IS hope! God and goodness are your guide. Your child is truly a precious gift. No matter what cards we are dealt, a child’s joy and innocence are somehow never lost. In the worst of times, a child’s pain often becomes the parent’s teacher. And when we expect the best for our children, we often get it despite all odds.
Surgery:- In some cases the definitive treatment is surgery. In most, however, surgery serves as a temporizing measure that will keep a child out of trouble for long enough to get through definitive therapy that will hopefully eliminate of the tumor. Brain surgery is usually the easiest part of a child’s treatment.
Shunting:- Quite often (e.g. medulloblastomas) childhood tumors present the blockage of the fluid spaces of the brain, (obstructive hydrocephalus). In shunting, a thin silastic tube (the shunt) is placed into the fluid spaces of the brain and passed under the skin into the child’s abdomen where the fluid is absorbed.
Chemotherapy:- Unfortunately, chemotherapy is the hard part of brain tumor treatment. It is only required for more aggressive tumors. As a rule, chemotherapy should be even more aggressive than the tumor itself. The trials which are imposed both on the child and parents are many. Bravery and an unremitting attitude of hope are required by all involved.
Radiation:- Because the developing brain of a child is so very sensitive to radiation therapy, it is deliberately limited. The irony of effective radiation therapy is that when it works well, the brain damage it causes might exceed that done by the original tumor. More often than not, your doctor will recommend that if any radiation is to be given, it should be held off until the child has grown older and the brain has sufficiently matured.
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- The treatment of these tumors usually include a combination of approaches, each tailored to deal with the problems that children are presented with:
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