Childhood Cancer

Childhood Brain and Spinal Cord Tumors

Common behavioral changes in parents

It’s impossible to talk about children’s behavior without discussing parental behavior. Your child’s development does not occur in a vacuum; it occurs within the context of your family, and you set the tone for your home’s atmosphere. At different times during their child’s treatment, parents may be under enormous physical, emotional, financial, and existential stress. The crisis can cause parents to behave in ways of which they are not always proud—ways in which they would not behave under normal circumstances. Some of the common problem behaviors mentioned by parents follow.


As stated earlier, children feel safe when their parents are honest with them. If parents start to keep secrets from a child to protect her from distressing news, she may feel isolated and fearful. She might think, “If mom and dad won’t tell me, it must be really bad,” or, “Mom won’t talk about it. I guess there’s nobody I can talk with about how scared I am.”

Denial is a type of unconscious dishonesty. This occurs when parents say things to children such as, “Everything will be just fine,” or, “It won’t hurt a bit.” This type of pretending just increases the distance between child and parent, leaving the child with no support. However horrible the truth, it seldom is as terrifying to a child as a half-truth upon which his imagination builds.


I try so hard to be honest with my 5-year-old son, but blood draws, which he thinks of as “shots,” are just so hard for him. Every doctor’s visit, that’s his first question, “I’m going to get a shot?” and I just want to say no. My husband’s the one who started saying, “It’ll be fine,” but the anxiety that came up later at the appointment was so much worse that I put an end to that pretty quickly. Now I say, “Yes, but just once,” because if I say, “I don’t know,” it just makes him worry.

Parents of children with cancer often feel sad or depressed. If you are consistently experiencing any of the following symptoms, it is often helpful to get professional help:

  • Changes in sleeping patterns (sleeping too much, waking up frequently during the night, early morning awakening),
  • Appetite disturbances (eating too little or too much)
  • Loss of sex drive
  • Fatigue
  • Panic attacks
  • Inability to experience pleasure
  • Feelings of sadness and despair
  • Poor concentration
  • Social withdrawal
  • Feelings of worthlessness
  • Suicidal thoughts
  • Drug or alcohol abuse

Depression is extremely common and very treatable, and it should be dealt with early.

Find a counselor you click with. Stick with that person until you truly feel some peace about your experiences and strength for dealing with the ongoing stress of treatment or whatever else might come up. I regret that I toughed it out and didn’t recognize the depression I was experiencing for such a long time. I think finding sources of support in a variety of ways at the earliest moment possible can greatly mitigate long-term difficulties in coping.


Losing your temper excessively

It was 2 years after my son finished treatment that my depression became severe enough that I recognized it. I actually had a lot of suicidal thoughts and my husband urged me to see a doctor. He started me on Zoloft® and it has helped me tremendously.

All parents lose their temper sometimes. They lose their tempers with spouses, healthy children, pets, and even strangers. But it is especially painful for parents, the sick child, and siblings when the target of the anger is a very sick child or a brother or sister.

Abuse of children and spouses increases at times when either or both spouses feel incompetent and powerless. If you find yourself unable to manage your temper, seek professional counseling immediately.

I had my share of temper tantrums. The worst was when he was having his radiation. I tried to make him eat because it would be so many hours before he could have any more food. He always threw up all over himself and me, several times, every morning. It seemed like we changed clothing at least three times before we even got out of the house each day. I remember one day just screaming at him, “Can’t you even learn how to throw up? Can’t you just bend over to barf?” I really flunked mother of the year that day. I can’t believe that I was screaming at this sick little kid, who I love so much.


Unequal application of household rules

I had always taught my children that feeling anger was okay, but we had to make good choices about what to do with it. Hitting other people or breaking things was a bad choice; hitting pillows, running around outside, or punching pillows were good choices. But, as with everything else, they learned the most from watching how I handled my anger, and during the hard months of treatment my temper was short. When I found myself thinking of hitting them, I’d say, in a very loud voice, “I’m afraid I’m going to hurt somebody so I’m going in my room for a time-out.” If my husband was home, I’d take a warm shower to calm down; if he wasn’t, I’d just sit on the bed and take as many deep breaths as it took to calm down.

You will guarantee family problems if the ill child enjoys favored status while the siblings must do extra chores. Granted, it is hard to know the right time to insist that your ill child resume making his bed or setting the table, but it must be done. Siblings need to know from the beginning that any child in the family, if sick, will be excused from chores, but that this child will have do them again as soon as she is physically able.

I spoiled my sick daughter and tried to enforce the rules for my son. That didn’t work, so I gave up on him and spoiled them both. He was really acting out at school. What he needed was structure and more attention, but what he got was more and more things. They both ended up thinking the whole world revolved around them, and it was my fault.

A child life specialist commented:

Overindulgence of the ill child

It’s hard for parents to learn that saying “No” is okay, especially when there is only one child. One mom told me the other day that it’s easier for her because there are two kids, and if it was just the child undergoing treatment, he’d get away with a lot more, but the sister has to do ‘X, Y, and Z’ and so her brother does, too. But it’s hard to learn to say, “No, you don’t get everything you want when we go to the grocery store,” or “No, you don’t get a new toy every single time you leave clinic.”

Overindulgence is a very common behavior of parents of children with cancer.

I bought my daughter everything I saw that was pretty and lovely. I kept thinking that if she died she would die happy because she’d be surrounded by all these beautiful things. Even when I couldn’t really afford it, I kept buying. I realize now that I was doing it to make me feel better, not her. She needed cuddling and loving, not clothes and dolls.


Four days into Selah’s diagnosis, we were doing anything to keep her happy. Our sweet little 4 year old had turned into a demon child in that short time. Luckily, my very dear friend took me outside into the hallway, pushed me against the wall, and demanded to know exactly what I was doing. I just looked at her and said, “I have no idea.” I just didn’t want my daughter to die and that was my only focus. She then told me I was giving my daughter no boundaries, no behavior expectations, and she had no respect for anyone who walked into the room. She was so right, and I couldn’t see it for fear that Selah would die. Through my tears and our hugs, she assured me that the way we were going, if she didn’t die from cancer, we were going to want to kill her because of the monster we were creating. I am still so grateful that she wasn’t afraid to tell me what I needed to hear.

One aspect of overindulgence that is quite common is parents’ reluctance to teach life skills to sick children. After years of dealing with a physically weak and sometimes emotionally demanding child, parents may forget to expect age-appropriate behaviors.

Overprotection of a sick child

I realized that I had formed a habit of treating my child as if she were still young and sick. I was still treating her like a 3 year old, and she was 7. One day, when I was pouring her juice, I thought, “Why am I doing this? She’s 7. She needs to learn to make her own sandwiches and pour her own drinks. She needs to be encouraged to grow up.” Boy, it has been hard. But I’ve stuck to my guns, and made other extended family members do it, too. I want her to grow up to be an independent adult, not a demanding, overgrown kid.

For a child to feel normal, he needs to be treated as if he is normal. Ask the doctor what changes in physical activity are necessary for safety, and do not impose any additional restrictions on your child. Let your child be involved in sports or neighborhood play. And even though it is hard, stop yourself from constantly reminding your child to be careful.

Life seemed to be finally returning to “normal”: surgery to remove tumor regrowth went great, all visible tumor removed. Only slight peripheral vision deficit, off all the meds, physically growing like crazy. Life was great!

Then, Michael (now 16) goes off snowboarding with some adult friends a couple of hours away from home. Sent that insurance card along, just in case. Hardly an hour or two goes by and the phone rings. Michael has “wiped out” and is on the way to the hospital in an ambulance! (My stomach does one of those nosedives again, the kind I thought we could leave behind, at least for a while). He doesn’t remember why he wiped out and of course the first aid attendants flipped out when they removed his helmet and saw that nice big scar. After an hour ride to the hospital and several hours sitting in waiting rooms (hasn’t this poor boy done his lifetime’s worth of doctor visits yet?), a CT scan reveals no problems—ruled out a concussion and sent back to the slopes—too late to do any more snowboarding. But I am devastated. Here come the sleepless nights again. I will start worrying why he wiped out—was it a focal seizure? It’s almost PMS (pre-MRI syndrome) time anyways; scan to be done at the end of the month. Perhaps we ditched the Dilanti® too soon. Michael hates to be on it, so he pushes the doctor to get him off as soon as possible.

Can’t life ever be normal for this family again? And Michael! The one time he gets a chance to leave the doctors and the tests and the waiting rooms and the crazy, nervous mom behind and now his special day is ruined.


My 6-year-old son finished his radiation and is still on chemo for his medulloblastoma. I feel like I have to lighten up in order for life to go on. So I just let the nanny take all four kids on a 4-hour drive to spend 8 hours at Six Flags®. It just about drove us nuts with worry, but they all came home safe and sound. They felt like they had a normal sibling outing.


Not spending enough time with the sibling(s)

Alissa (age 8) has metal rods to support her spine following multiple operations for spinal astrocytoma. She uses a wheelchair right now. We don’t protect Alissa like she’s going to break. On Fourth of July, she sat in the middle of the stands with all her friends for the fireworks, and then she cruised the field later like everybody else. The mayor of our city gave her an award for being the first and only person in a wheelchair to perform the pledge of allegiance at the city council meeting (she went with her Brownie troop), and she will be participating in a fashion show with her Brownie troop to raise funds for our neurological institute.

While acknowledging that there are only so many hours in a day, parents interviewed for this book felt the most guilt about the effect that diagnosis and treatment had on the siblings. They wished they had asked family and friends to stay with the sick child more often, allowing them to spend more of their precious time with the siblings. Many expressed pain that they didn’t know how severely affected the siblings had been.

Using substances to cope

I try to find some time in each holiday, weekend, or whenever it is just for Christopher and me. No matter how ill Michael is, someone else can cope with it for an hour or two, and nothing is allowed to interfere with that. We still go out, even if it is only Christopher and me at McDonald’s®.

Bottom line is that all mothers have to accept that along with the baby is delivered a large package of guilt, and whatever we do for one we will wish we had done for the other.

But I don’t think you can put one child on hold for the duration of the other’s illness, because the year that Christopher has lost while Michael has been ill won’t ever come again. He’ll only be 11 once, just as surely as Michael will only be 14 once (or possibly forever), and we owe it to our healthy kids to allow them to be just that.

Some parents find themselves turning to alcohol or drugs to help them cope. Some parents use illegal drugs, and some overuse prescription medications or over-the-counter sleeping pills. If you find yourself drinking so much that your behavior is affected, or using drugs to get through the day or night, seek professional help.


Many parents find unexpected reserves of strength and are able to ask for help from friends and family when they need it. They realize that different needs arise when there is a great stress to the family, and they alter their expectations and parenting accordingly. These families usually had strong and effective communication prior to the illness and pull together as a unit to deal with it.

The majority of families, however, have periods of calm alternating with times when nerves are frayed and tempers are short. In the end, most families survive intact and are often strengthened by the years of dealing with cancer.

After 12 years living with Jen’s glioma, I have made my own peace with the fact that I may not be able to prevent or choose what Jen has to deal with. I can, however, make a difference in how we go through it so she finds peace and comfort.

We have been truly blessed by most of the care Jen has received. We have felt the compassion of those who have been willing to recognize the feelings of this process as a part of the medicine and were willing to communicate and acknowledge that to Jen and to us. For her that makes a tremendous difference in how she responds.