It's Not Over When It's Over

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Last Modified: November 1, 2001

How do I get my attention now?

As awful as chemotherapy treatment can be, and as much as children of all ages feel they CAN'T WAIT until it's over, there is often an unexpected void when treatment is completed due to the loss of attention. The teachers no longer make exceptions for you. No one asks how you are feeling any more, or tells you how brave and wonderful you are. You no longer get out of school and no one brings you special presents any more. You are now supposed to suddenly become an ordinary kid but you don't feel like one. Recently I received a call from a mother of a 7 year old girl who had just completed 3 years of chemotherapy. She was still in a state of shock after finding out she had been reported for child abuse. When I talked to her daughter, this angelic-faced child with long blond hair batted her baby blue eyes and told me that it was all a "story" she made up because it got her a lot of attention from her teacher and classmates in her new school. She said nobody knew she had leukemia there and no one cared any more. She also had to admit though that this "story" got her more attention than she cared to have at home!

What IS normal?

In attempting to sort out what are typical psychological, developmental and medical symptoms in a child who has completed treatment, as a parent, you often worry about either over-reacting or under-reacting. If you have over-reacted, you may get the dreaded, condescending tone from the medical staff with the statement that begins "Now mother..." (interpreted by you to mean "You are just another hysterical parent.") On the other hand, if you let a symptom slide, and finally go in to see the doctor, you may have to face the raised eyebrow and the statement "So, how long has he had these symptoms?" (Interpreted by you to mean "So, how long have you been a neglectful parent?") All kids get fevers. But if your child initially presented with a fever, your throat will get dry every time the thermometer reaches 99.5. Is doing poorly in math due to laziness or a learning disability caused by treatment? Do ALL 13 year old girls cry so easily? The answers are not usually black or white, so you sit and mull over the gray areas for hours or days before you swallow your pride, take a deep breath and pick up the phone.

The Dreaded Checkups

When treatment began, you thought the magic day when worries all dissipated was shortly after the last treatment. Why then are your hands sweating as you sit in Suite D, waiting for the routine checkup? The problem with cancer is that is is so SNEAKY. The symptoms are often vague, common symptoms for many run-of-the-mill childhood illnesses, which may have been discounted by both yourself and your local pediatrician. So, the only reassurance comes after a thorough checkup from the Heme/Onc staff. On the other hand, you also know that one visit in Suite D, Children's Hospital, can change your life forever. About a week before the big checkup, morbid thoughts flash through your head that you try to block out. Finally, by the night before the checkup, you just give up the pretense of a good night's sleep. Of course, when you come to clinic everyone expects you to be jovial because YOUR child is off treatment. So, you put on a fake smile and pretend you are reading the magazine you have in front of your face while the little bald-headed reminders of what has been, and still could be, play all around you.

What do I do now that you've taken away my "crutches"?

As much as you hated those weekly trips to the clinic for treatments and wondered why we had to use such a barbaric way to cure cancer, it is hard to trust doing nothing. When treatment was finally over for one child whose treatment had started at eight months, his mother said, only half joking, "Couldn't you give him just a little bit of chemotherapy for the rest of his life?" There are times when your child looks a little peaked that you would give anything to have the option of running down to Children's for a little blood test so you could sleep a little better that night. Then when you call the Heme/Onc office and they tell you "Why don't you just take him to your local pediatrician?" you realize your crutches have been knocked out from under you and you are going to have to learn to walk independently all over again.

It is past time to move back into your own bed.

When your child is first diagnosed and you are terrified over every cough and moan, many parents inadvertently get into the bad habit of sleeping with their child on treatment. Of course, then a young sibling may feel left out and crawl into bed with the other parent. About the time you look at each other longingly and promise yourself "Tonight's the night" to wean the kids back into their own bed, your child on treatment begins to run a low grade fever. So, you resolve that "Next week..." Besides, who has the energy for what sleeping in the same bed may lead to? By the time treatment gets easier or is completed, the emotional dependency problems are hard to break and you and your spouse are often separated by more than a bedroom door.

Do we still like each other?

Our society in many ways, sabotages parents' "alone" time together. Girl Scouts, baseball games, dancing lessons, school events and the non-ending household chores often have parents going in separate directions. Add to this list chemotherapy treatments, low count weeks, hospitalizations, and resentful siblings, and you'll meet parents who barely remember each other's names! During hospitalizations, often our parents are lucky to have 30 minutes together a day during the "changing of the guards". In this time, they must relay essential information such as "Don't forget to..." plus contend with bedpans and interruptions from staff. A candlelight dinner alone together becomes a dream from the past. By the time treatment is over, you may not even know if you want to spend time together. This person who was once your lover, confidant, and dancing partner, may now feel more like a business partner. It is time to ask yourselves a few questions: Did you even like each other BEFORE this all began? If the answer is yes, is there still a relationship left to nurture? Then, are you both willing to commit to the time needed to get to know each other again?

So, This is "Happily Ever After"?

When your child was diagnosed, you thought you would probably go crazy. Well, you didn't -- or at least not crazy enough for most people to notice. You all survived the seemingly unending months or years of treatment. The good times have arrived! Then why are the kids still fighting? Why is your spouse still complaining? Why is there still not enough money to go around? Worst of all, why does this child, who you were so terrified of losing, act so obnoxious at times that you don't even like being around him?

Once, when we were going through a crisis time, my husband said to me "Won't it be nice when we can start worrying about cleaning out our closets again?" The problem is, the day does come when you do start worrying about clean closets again, and other mundane things. When the nightmare of cancer begins, most parents pray "Dear God, just get us through this and I'll never complain again about..." Although such a significant life crisis does change us in positive ways, at some point our humanness creeps back in, in spite of ourselves. Don't worry. God is used to people making bargains they can't keep. You and your children will be partly enriched and partly damaged by this experience. You can nurture the enriched part and minimize the damaged part by accepting yourself, your spouse and your children, with all of the normal faults and feelings that accompany any family that deals with childhood cancer.