Speaking to Children About a Terminal Diagnosis
By Robyn Shani
Overview: Difficult conversations are always challenging especially when speaking to a child about a terminal diagnosis. Children need to hear the truth from adults, and it is best delivered with love and sensitivity.

Our daughter Elliet was diagnosed with EWING sarcoma, a very aggressive soft tissue cancer, and we were faced with the all too real possibility of what could be. The diagnosis was not good and the chances of Elliet living for 120 years was not likely. Hearing the diagnosis was a shock and at the same time at least now we knew what the issue was. Elliet had been in pain for months and had been misdiagnosed multiple times. Finally, we had clarity and a possible way forward toward healing. From the beginning Elliet was included in the discussions with her Drs, she was bright, intelligent, and fully aware of the pain she had been in for so long, it was very important that she was involved in the discussions. I have always been open and honest with our children. I believe that being able to discuss important matters with children is essential and that being truthful and direct with my children while being fully aware of their age and sensitivities is an essential aspect of healthy parenting.

We had many discussions about life, the purpose of life, and GD. We discussed treatments and options. Our discussions were real, sometimes heated, always truthful. We prayed we gave charity, we did acts of kindness, and we had shiurim in our home. We did everything we could.
Elliet had a great sense of humor and would often quote lines from movies. There is a scene in the 2011 version of Arthur when he is sitting with his nanny waiting to visit his mother, and he really doesn’t want to be there. Elliet would say the line to me in a British accent when we were in the waiting room at the hospital, “I don’t like it here Hobson, I want to go home.” To which I would reply in a British accent, “We will soon be finished and then we can go home and you can watch cartoons.” We would smile at each other and sometimes even giggle. It was moments like this that were helpful. Elliet could express herself and be heard.

Elliet was being treated at the Charlotte Maxeke Academic Hospital. The pediatric oncology unit there is one of the best in Southern Africa with a truly remarkable dedicated team of professors, Drs, nurses, and volunteers. The hospital is an interesting place where people from all over Southern Africa come to receive treatment. There are people of all cultures with different beliefs, traditions and community support systems. As different as many of us were, we all had something in common. We all had someone we loved deeply who was not well, and we all wanted a miracle. We all wanted to walk out of the hospital with a healthy child.

Many cultures, meant many ways to do things. On one occasion, around 3 pm a young girl was admitted, she was placed in the room next to us. With just a thin prefab wall between us, we could hear everything that was going on in their room. Truth be told, even if the wall was made of solid bricks, we still would have been able to hear the shouting and wailing which began in the early hours of the evening and continued throughout the night until lunchtime the following day. The young girl and her family belonged to a church that prayed in the form of repetitive, high-volume chanting. The chanting was almost deafening, they were pleading, screaming, and crying for their loved one to be well, it was in a foreign African language that I didn’t understand. I did however understand enough to realize that they were praying for a miracle. They were asking some power higher than them to intercede and save their loved one.

While in the hospital we saw it all; miraculous recoveries, incredible kindness, unthinkable pain, loss, fear, and uncertainty. We saw children who were cared for 24/7 and others who were abandoned. Mostly we saw people doing the best they could with what they had. Some parents and caregivers had a lot to give, they had wisdom, strength, courage, and clarity, and others just didn’t.

We were in a ward with several beds and the bed next to Elliet lay a young girl of about 7 years old. She wasn’t well and her time was very limited, she was extremely weak and in a lot of pain. Her mother was taking care of her, wiping her face with a damp cloth, soothing her as best she could. This mother was talking to her daughter in a calm soothing voice. She was explaining to her daughter that the time was coming for her to go to heaven.

“When?” asked the young girl. “I don’t know,” answered the mother, and then added, “GD is preparing your home for you in heaven and when it is ready, he will send angels to come fetch you.” It was remarkable to witness this wise mother comforting her daughter as best she could. Her daughter was in physical pain and emotional peace, she was going to be taken by angels to her home in heaven. This mother gave her daughter something she could hold onto that was helpful.

There was another mother who did not have the same ability to comfort her son when he asked her “Why is GD doing this to me?”.

Just a few weeks before her son was admitted to hospital he was an energetic 10-year-old who loved playing sports with his friends and wrestling with his uncles. His mother noticed bruises on him after a playful wrestling match. Something was not right; he shouldn’t have been so bruised. She took him to the Dr and he was diagnosed with an extremely aggressive leukemia that mutated at an alarming rate. Within just a few weeks, his condition deteriorated rapidly. Even though he was only 10 years old this young boy understood that he was not going to be leaving the hospital. His days of playing sports and laughing with his friends were over. He was lying in a hospital bed, bruised, weak, and in pain. He asked his mom “Why is GD doing this to me?” her answer was one of the most chilling replies she could have given him. “GD loves you, my son, GD would never do this to you.”

This poor woman was doing the best she could with what she had. She was depleted, emotionally stretched, and at a total loss on how to answer him. Her only child was in pain and about to leave this world. How could a loving GD be doing this? She couldn’t come to terms with it. She had a limited understanding of a loving GD. The problem with her limited understanding of GD is that it wasn’t helpful and it left her son in a predicament. He knew he was dying, and now he had just been told by his mother that GD wasn’t doing this to him. So, if GD isn’t doing this, then what power is? And what power is stronger than the will or love of GD?

One thing I am certain of is that the unknown is far scarier than the known. When parents are vague or untruthful in an attempt to protect their children, it generally backfires. When children ask questions, it is very important to give an answer that is age-appropriate and truthful. If we don’t know the answer, rather be honest say, “I don’t know.” as the first mother did when her daughter asked her when she would be leaving this world. Children can detect when we are not being truthful, when we hide issues, or are evasive.

Elliet was in remission and she was getting stronger; her hair was growing back and Baruch Hashem we were incredibly hopeful that she would live a good long life. After a routine checkup, we found out that she was no longer in remission. It was Friday and we had planned a special Shabbat all together with family from overseas. My husband and I decided that we would speak to Elliet on Monday, it didn’t make sense to tell her erev Shabbat. At least she would have a couple more days in “remission” and be able to enjoy some special time with the family. Shabbat morning Elliet called us into her room, “Something is wrong, I don’t feel good.” She knew intuitively that she was no longer in remission. We held each other and we cried.

Sometimes all we have is tears.

Elliet decided that she wanted to live to the best of her ability until the end, and she did.

On Sukkot we sat with our boys in the Sukkah and Elliet told her brothers that she was no longer in remission and her time was limited. It was a very emotional and powerful experience. I remember that evening with absolute clarity, and when I asked my boys and husband, they said that they did too. We were able to navigate the future as a family knowing every second is precious and a gift. We spent quality time together, had family holidays and outings, and had important conversations. A few months later Elliet was niftar, on 16th Shevat 5774.

Helpful tips when discussing a diagnosis with children.

• Rebbe Menachem Mendel Schneerson encourages using words in a conscious and positive form such as saying unwell instead of sick, and limited time instead of dying, in Hebrew use of Beit Refuah instead of Beit Cholim.

• Give from your overflow. When a parent is depleted, it is very challenging to be there for their child. Take the time and get support to ensure you fill up. You could go for a walk, a talk with a friend, a long soothing bath, a good scream into a pillow, exercise, or anything that will support you. Healthy meals and sufficient sleep are essential.

• Learn from others, people who have successfully navigated the road you are on, listen to podcasts or read books.

• Be truthful- share facts rather than opinions, when sharing an opinion state, it as such, “I think that…”

• Use age-appropriate language.

• Some children will want to talk. Asking open-ended curiosity questions is helpful and allows them to explore their thoughts with you. Examples of open-ended questions are: What do you think would be helpful for you? Is there anything you want to tell me? What would you like to hear from me? If your feelings had a shape or color, what would it be?

• Some children need silence, and you can hold space for them. (Holding space is being fully present with the other person, so your mind is not wondering. You are focused on the person and naturally, your energy will be with them.) One of my children needed this form of support, the thought of his sister not being around was just too much to comprehend, and he needed to be held in silence. I supported him this way for months, and just as I was thinking maybe it was not the right approach, I heard a story that gave me the strength to continue.

Story: There was a couple who had been trying for many years to have children, they had tried everything. Finally, there was a new treatment available and this couple was extremely hopeful that they would be blessed with a child. The excitement was palpable, yes! Baruch Hashem, they would be parents. The husband had been in therapy to support him through the journey. Unfortunately, the treatment was unsuccessful. The husband went to his therapy session, walked in, and sat down; he didn’t say a word. His therapist held space for 45 minutes, and the entire session was silent, when the session was over the man stood up to leave and said “Thank you so much for listening.”

After hearing this story and another few signs that this was the right method of support for my son I continued. Baruch Hashem, I was able to give him what he needed.

Speaking to anyone about serious issues takes courage, wisdom, and truthfulness and we can only give what we have. I believe you have what it takes to navigate this journey successfully.

Your sister in the journey
Robyn Elana

Robyn Shani
Robyn Shani is a qualified life coach with a particular interest in coaching women. She believes that when each of us shows up as the best version of ourselves, the experience of life will be absolute bliss. She loves being the catalyst that supports people to feel connected, held, and seen. Robyn runs workshops and coaches individuals and groups. Her daughter was diagnosed with EWING sarcoma, an aggressive soft tissue cancer in 2011 and Robyn was diagnosed with thyroid cancer in 2013. Robyn shares insights, challenges, tools, and stories that hopefully will support people who are going through challenging times.