Of all the thoughts, feelings, and emotions that run through a parent’s head once they hear the diagnosis that their child has cancer, this one always plagues us: “What do I tell my child(ren)?” Fearful that telling our children might upset them more or make it worse for our kids, we withhold telling them. Truth be told, even at a young age, children can pick up on emotions and the feeling that something is wrong. If not told the truth, they might think things are much worse than they really are and not know how to express their own emotions causing fear, worry, and anxiety in the child.
My husband and I believe that it is very important to nurture the mental, emotional, and physically well-being of our children. We talk to them about “hard” topics, encourage them to ask us questions, provide age-appropriate honest answers related to the topic at bay. By talking with your children honestly and helping them express their emotions, you make it easier for them to feel safe and secure. As their parent, you are the best judge of how to talk to your children.
Leading up to the day our son was diagnosed with cancer, my older son (4.5 years old) came with us to get his blood drawn for labs. We explained to him that Lukas was not feeling very well, and we needed to find out some answers. He asked me if Lukas was sick. I told him that he might be sick, but that is why we have doctors and hospitals, to help sick kids get better to live a healthy life.
The First Conversation
The day Lukas was diagnosed with acute lymphoblastic leukemia (ALL), my husband and I looked at each other knowing we needed to tell Jakob immediately. Jakob is an emotional little man; he loves hard, worries deeply, and gives his everything. Sitting him down to have this conversation with him was excruciatingly painful. Telling him that his best friend, his brother, has cancer was a like a gut punch to the stomach. With a little bit of advice from our social worker, child life specialist, and the internet, we were ready to explain to Jakob what was wrong with his brother.
With Jakob being only 4 years old, we made sure to describe leukemia in a way that would make sense to him. We were intentional about using words he knew, and taking time to explain words he didn’t fully understand. We described to Jakob that Lukas had cancer and there were many different types. Also, we made it clear to him that you cannot “catch” cancer from him as his type of cancer was leukemia, which is a sickness in your blood. We told him that he has some bad blood in his body that has been making him sick. He was going to have to stay at the hospital for a bit. We explained how the doctors are going to do tests and give him lots of medicine called chemotherapy to make all the bad blood go away so his body can make the good blood again to get him healthy. We explained how we were going to have to go to the hospital a lot so Lukas could have treatments at the clinic and that Lukas needed him there as his older brother for support and love.
Jakob listened… he asked if all the bad blood will go away, if Lukas was going to die, if the doctors will be able to fix him, and if we can pray to God for him at night. We answered all his questions, and his fears seemed to fade away as he ran away to play trains. Since that first time we spoke to him about cancer and Lukas, there have been many nights where he cries in bed worried about Lukas and asks many questions about heaven and healing or if he will have cancer, too. I do my best to reassure him, but these are the fears that concern Jakob. By being open and honest with Jakob, along with allowing him to join Lukas at clinic, teaches Jakob that we can talk about cancer openly, be empathetic, and helps him cope with his brother’s illness.
Helpful Tips to Foster a Healthy, Open Environment
Pediatric cancer affects the whole family. The new diagnosis of cancer may cause parents to focus only on their ill child, forgetting that their other children need help coping with the new family “normal” brought on by cancer. These changes can be extra painful on siblings. Noticing their changes is critical in helping them cope with the change in the family and with their sibling. Recognizing the emotions and behaviors that are associated with the change will better help you meet the needs of your other children and help them manage their own stress with the cancer diagnoses in a positive and healthy manner.
These three tips can help you and your family navigate the unknown difficulties that a cancer diagnoses, treatment and recovery will throw at you.
1. Notice the different types of emotions of your healthy children are portraying. Siblings of a child with cancer will have a lot of emotions, it’s only natural. Here are a few emotions I have witnessed from my son:
Sadness: Brothers and sisters will be sad that they have to watch their sibling fight for their life. If the siblings played together, they might be sad that they cannot do the same things they once did before being diagnosed with cancer. Losing their playmate is hard on them. They may feel sad that the family dynamic has changed where they are always doing something for the “sick” child.
Feeling Left Out: Include the siblings in the hospital trips. Make them a part of the fight to beat cancer. The child with cancer will be receiving lots of gifts and donations, siblings can feel left out that they are not getting anything. Don’t let them miss out on time with their friends, they need that outlet.
Anger/Jealousy: Healthy siblings can get angry with parents if they are worrying or spending too much time with the child that has cancer. This can make the siblings angry towards the child with cancer, too. My son frequently says, “You don’t need me anymore, you don’t want me here, or you don’t like me anymore — you just want Lukey!”
Fear/Anxiety: Older sibling might fear that their sibling will die or younger ones might wonder if they can “catch” cancer. They might think that anyone around them who gets sick will have cancer too. Jakob asks all the time if Lukas is going to die, it is one of his biggest fears. He is so afraid that Lukas will forget about him being his brother.
2. Recognize changes in behaviors from healthy siblings. Children are still learning and working on how to express their feelings and emotions in a positive or healthy way. They might not know how to express or have the words to describe the feelings above to an adult to make them feel better. The way children know how to express their feelings is through different actions they may exhibit. All children are different, but these can be some changed behavior you might notice from your healthy children:
Being extremely grumpy.
Temper tantrums, fighting with parents or siblings.
Crying a lot.
Increased anxiety and asking LOTS of questions.
Not doing well in school or having a hard time focusing on homework.
Acting out in class – class clown (looking for attention).
Challenging behaviors (disobedient, aggressiveness, phobias, and swearing).
Having physical symptoms, such as throwing up, headaches, stomachaches, or bedwetting.
Withdrawing from the family or wanting to be alone (in a room or corner).
Having trouble sleeping and/or nightmares.
New behaviors that they never have done before such as pinching themselves, or trying to hit themselves.
3. Ways to help the healthy siblings cope with their feelings and emotions: There’s no way to rectify every fear or emotion your healthy children are feeling, but you can help alleviate the intensity of emotions and feelings they might have about their sibling. Hopefully now you might be able to recognize some of the emotions and behaviors of your healthy children and you can get them the resources or use these strategies to better help them cope with the stress and emotions that a cancer diagnosis brings. Here’s how:
Be open and honest about cancer — don’t hide things. Give healthy siblings honest information, that is relative to their age and development stage. Talking with your children honestly will make them feel safe and secure with you (the parents) and other adults they come in contact with. Encourage your children to continue to ask questions and provide frequent updates on their sibling. This will help the healthy siblings feel less anxious about the situation. Make cancer an everyday topic where you talk about milestones and hurdles that you are going through.
Be consistent. Make sure to maintain a sense of normalcy in a time that is hectic and messy. Keep your kids on their normal schedule. This will make them feel secure. Keep your discipline fair and the same at home. This will help all children stay in routine. Siblings should keep up with their school, activities, sports, or interests during this cancer experience. Letting them go about their normal activities will make them feel like cancer isn’t changing their life — it’s just another aspect that needs to be fit into the routine.
Assure them that they’re loved the same. Before bed each night, I make sure to let Jakob know how much I love him. He picks a number and then I tell him that many attributes that I love about him like: I love how you figured out that problem today, I love how you took turns with your brother on the slide, I love that you cleaned up for dinner without me telling you to do that, I love that you have a huge heart and care about people’s feelings so much, etc. This makes him feel so proud and loved. I would explain to them that if they were sick, you’d be just as concerned on helping them get better. Let them know how happy you are that they’re healthy.
Get them involved with the journey. Actively involve the siblings in the pediatric patient’s treatment process because it helps maintain the connection between the siblings and helps to increase the sense of family and family time. It shows the siblings that we are all in this fight together. This is also a great way a sibling can keep up to date with what is happening and not have to wonder. My boys hardly ever wear hats, but we know Lukas is going to be losing his hair soon. We explained to Jakob that from all the medicine Lukas is going to be taking, his hair is going to fall out. We all went hat shopping together and each picked out a special hat that they can wear together. Lukas still has his hair, but they both put on their hats before we get in the car.
Get help outside of the home. If you feel like you are not giving your healthy children the help that they need, seek outside help like a social worker or a child life specialist to help your struggling children. Many hospitals have someone you can talk to or have a sibling program they can be involved in. Jakob has been having some issues dealing with his emotions, we have made sure that he spends a little extra quality time with the child-life specialist during clinic visits so they can talk about their feelings together. It has made a world of difference. There is a local organization called The Wellness House in Hinsdale, Illinois that has free resources for the whole family.
Recognize their feelings and worries. Comfort them by telling them that their feelings are normal and OK. Let them know how you feel too. Tell them that you are scared, worried, sad, or angry. Share with them how you manage your feelings like they are having. If you journal, show them how to write their feelings down. If you exercise, include them in your workout to help relieve their stress. Showing them positive ways to manage stress and worry will carry over into adulthood.
Spend one-on-one time with each child. If you can, a parent should spend some time with the healthy children every day. Family time isn’t about a family party or gathering. It can be as simple as playing trains or cars, a game together, watching a TV show together, running an errand, or just hanging out talking. Quality one-on-one time together will show them how important they are to you. If you can’t be there because of a hospital stay, call them, text them, or video chat them and tell them how much you miss them when you can’t be there.
Let them make decisions that affect their lives. Healthy siblings might feel like their life is out of control. Let siblings make choices about things that affect them, such as what they would like for dinner, something they would like to do for fun, or if they have to stay somewhere else during an inpatient hospital stay, which house they’d like to go to feel most comfortable.
Take care of yourself. The only way that you can best help your children is to make sure that you are taking care of yourself first. Give yourself time for just “me time” where you can de-stress and recharge. Make sure you are meeting your own needs to stay healthy, strong, and in control. If you feel like you are struggling, reach out to your oncologist team, they will have resources for you too. Cancer is mentally, emotional, and physically draining. Get the help you need too! Your family needs you!
There are going to be major ups and downs throughout cancer treatment, but typically children respond to a sibling with cancer with compassion, love, and support. As a parent, you might even see some positive changes in your other children (depending on age) like empathy, closer relationships with siblings and parents, and feeling like they are helping with their siblings journey to beat cancer, maturity, pride in their accomplishments or their siblings accomplishments, and increased sense of independence. Good communication with your children helps everyone in the family cope with whatever changes lie ahead.