Childhood Cancer

Childhood Brain and Spinal Cord Tumors

The role of family and friends

Family members and friends can be a wellspring of deep comfort and solace during grieving. Some people seem to know just when a hug is needed or when silence is most welcome. Unfortunately, in our society there are few guidelines for handling the social aspects of grief. Sometimes well-meaning people voice opinions concerning the time it is taking to “get over it” or question the parents’ decision to not give away their child’s clothing or other belongings. Others do not know what to say, so they are silent, pretending that life’s greatest catastrophe did not occur. Many friends never again mention the deceased child’s name, not knowing that this silence, as if the cherished child never existed, only adds to parents’ pain. Holidays can become uncomfortable, because they bring sadness as well as joy.

In an attempt to alleviate these difficulties, bereaved parents helped compile the following lists of what helps and what does not, in the hope that it may guide those family members and friends who deeply care, but just don’t know how to help. Parents or family members can copy these lists to share with people who want to help.

These suggestions are offered with the understanding that what works for one family may not work for another. Family members and friends should use their knowledge of the bereaved family to choose options that they think will be most helpful. If in doubt, they should ask the parents. As Mother Teresa said, “Kind words can be short and easy to say, but their echoes are truly endless.”

Things that help

The long lists of things that help from Chapter 16, Family and Friends (e.g., keeping the household running, feeding the family, and helping with bills), are still appropriate here. The following lists are specific suggestions for support with grieving.

Helpful things to say:

  • I am so sorry.
  • I cannot imagine the pain you are feeling, but I am thinking about you.
  • I really care about you.
  • You and your family are in our thoughts and prayers.
  • We would like to hold a memorial service at the school for your child if you think that it would be appropriate.
  • I will never forget John’s sunny smile.
  • I will never forget Jane’s gentle way with children and animals.

Parents also offer a list of helpful things to do:

  • Go to the funeral or memorial service.

We were overwhelmed and touched by all of the people who came to the funeral. Even people that I had not seen in years—like some of my college professors— attended. Her oncologist and nurse drove 100 miles to be there.

  • Show genuine concern and caring by listening.

What has helped me the most is for people to just listen. Finding time to remember and reminisce is sometimes very difficult and painful, yet other times I feel much pride and happiness. Friends whose children also have cancer have been the greatest help to me during my daughter’s illness and after her death.

  • Help the siblings.

We had friends just call and say, “We will pick up Nick on Saturday and take him to Water World, then to our house for dinner. We were hoping he could spend the night. Will that be all right?” They did this many times, and it not only was fun for him, but gave us a chance to be alone with each other and our grief.

  • Write the parents a note instead of sending a preprinted sympathy card with your signature. Include special things you remember about their child or your feelings about their child. Letters, poems, or drawings from classmates and friends allow children to share their feelings with the family of the deceased, as well as provide poignant testimonials that the family will cherish.
  • Talk about the child who has died. Parents forever carry cherished memories of their child and enjoy hearing others’ favorite recollections.

Months after the funeral, we gathered family members and some close friends to share memories on tape. We did a lot of laughing as well as shed a few tears. But I will always cherish those tapes.


I think most of all parents want their child to be remembered. It really comforts me to go to Greg’s grave and find flowers, notes, or toys left by others.

  • When parents express guilt over what they did or did not do, reassure them that they did everything they could. Remind them that they provided their child with the best medicine had to offer.
  • Remember anniversaries. Call or send a card or flowers on the anniversary of the child’s death.
  • Respect the family’s method of grieving.
  • Give donations in the child’s name to a favorite charity of the child or parents, for example, the child’s school library, the local children’s camp, or U.S. Children’s Hospice International.

Every year we still get a card saying that Caitlin’s occupational therapist donated money to Camp Goodtimes. It makes me feel good that she is remembered so fondly and that the money will help other kids with cancer and their brothers and sisters.

  • Commemorate the child’s life in some tangible way. Examples of this are planting trees, shrubs, or flowers; erecting a memorial or plaque; or displaying a picture of the child.

The spring after Matthew’s death, his school contacted me and said they wanted to do something special in his honor. They planted a little leaf linden tree in front of the building and built a wonderful seat around its base. They picked this particular tree because of its wonderful fragrance, and because the leaves were shaped like little hearts. A plaque beside the tree proclaims that this is Matthew’s Friendship Tree. In addition to his name and the date of his birth and death, it reads: “When you remember me, please have a smile and cherish the good times we shared. And in these memories I will live with you forever.”

  • Be patient. Acute grief from the loss of a child lasts a long, long time. Expectations of a rapid recovery are unrealistic and hurtful to parents.
  • Encourage follow-up from medical personnel.

What not to say

Caitlin had a very kind, very gentle radiation oncologist. I went back to see her after Caitlin died; she said, “We were so happy when we saw the progress that Caitlin made, from a stretcher to sitting to talking and walking again; and then our hearts broke when she relapsed. I wept.” It was so human and so wonderful for her to let me know that she cared.

Please do not say the following to grieving parents:

  • I know exactly how you feel.
  • It’s a blessing her suffering has ended.
  • Thank goodness you are young enough to have another child.
  • At least you have your other children.
  • Be brave.
  • Time will heal.
  • God doesn’t give anyone more than they can bear.
  • It was God’s will.
  • He’s in a better place now.

Every time someone approached me at the funeral home with the words, “He’s gone to a better place,” I felt as if I would scream. Matthew’s place was with me, his mother. Seven-year-old boys need their mother. It also really angered me when people repeatedly said, “Oh, with all he suffered, you wouldn’t wish him back if you could.” Well, yes, I would wish my child back! I would wish him back healthy and well. To this very day I would wish my child back, even if I could hold him for just a moment or hear the sound of his laughter one more time.

  • God must have needed another angel.
  • It’s lucky this happened to someone as strong as you.
  • Don’t worry, in time you’ll get over it.
  • Why did you decide to cremate him?
  • How is your marriage holding up?
  • You need to be strong for your other children.

Please do not say to the siblings:

  • You need to be strong for your mom and dad.
  • Don’t cry, it upsets your parents.
  • You’re the man of the house now.
  • How does it feel to be the big sister now?

Even if bereaved parents have deep religious faith, it is often tested by their child’s death. Parents are not comforted by well-meaning friends who assume faith is making the grief bearable; indeed, many parents find it to be infuriating. It’s better to just say “I’m sorry.”

In the months and years following the child’s death, any of the following are unlikely to be appreciated and may, in fact, be hurtful:

  • Don’t you think it’s time to get over it?
  • It’s been 6 months; it’s time to put the past behind you.
  • Life goes on.
  • You need to get on with your life.
  • You shouldn’t be feeling that way.
  • Don’t you think you should give away all her clothes?
  • Don’t cry.
  • Doesn’t it bother you to have his pictures around?
  • Please don’t talk about Johnnie, it just stirs up all those memories.
  • It’s not good to just sit around, you need to get out and have some fun.

Don’t let your own sense of helplessness keep you from reaching out, even if you are unsure about what to say or do. It hurts the grieving family members when others stay away or pretend nothing is wrong or avoid (or refuse) to talk about the child who has died.

What not to do

The following are suggestions from parents about what not to do:

  • Don’t remove anything that belonged to the child who died, unless specifically asked to by the parents.

One family member took my son’s toothbrush out of the bathroom and threw it away. I missed it immediately. She probably felt that she was doing me a favor, but it made me so angry. I needed to keep things. I have his hair from the second time it fell out, because he wanted to save it, and I’ve kept his teeth which had to be pulled during treatment. I just need to have those things, and I resent people who insist you must clear out a child’s things. Parents should be able to keep things or get rid of them— whichever is comfortable—regardless of others’ opinions.

  • Don’t offer advice.

Christie’s room is still her room. We still refer to it as Christie’s room. People just don’t have the right to say you shouldn’t leave that room empty: it’s not empty, it’s full of her life. I know that they are not trying to hurt us. It just bothers them to see that room. Sometimes it is just a reminder of death; yet, there are times when being in there and surrounded by all her things brings us closer to her and her time with us.

  • Don’t say anything that in any way suggests that the child’s medical care was inadequate.

I can’t tell you how many people said things like “If only you had gone to a different treatment facility,” or “If only you had used this or that treatment.” What people need most is support for what they are doing or did do.

  • Don’t look on the bright side or find silver linings.

I became unexpectedly pregnant the month after my daughter died. I can’t tell you how many people said things like “The circle of life is complete,” or “God is taking one and giving you another,” or “God is replacing her.” She can never be replaced. It was horrible to hear those things, and I felt it was unfair to both the unborn baby and to my daughter who died.

  • Don’t make comments about the parents’ strength.

People would say things to me like “You’re so strong,” or “I just couldn’t live through what you have.” It makes me want to scream. Do they mean I loved my child less than they love theirs because I have physically survived?