When a child is diagnosed with cancer, everything changes for the entire family. It’s an emotional role no parent ever expects or can plan for. Life can get turned upside almost overnight. Suddenly, a parent’s focus is on caring for their sick child, and normal routines and responsibilities get pushed aside.  

Caring for a sick child with cancer may be one of the hardest things families encounter. Rallying together support can be challenging, or other people may drop everything to be there to support in whatever capacity they can. This article will highlight the different caring roles many of our parents, siblings, grandparents or extended family and friends might experience.  

Below are just a few examples of what families may experience, but not necessarily all families. Each family is unique in their own individual way and we want to acknowledge the amazing caring roles you provide all the time and during Carer Awareness Week 13-19 October 2024.  

Roles Can Shift 

Parents might need to take extended leave or resign from their job to focus on the care needs of their child. This might include: 

• Getting them to treatment and appointments 
• Looking after them when they are sick 
• Monitoring side effects 
• Needing to stay in hospital to care for and advocate for their child’s best interests 
• Keeping up with treatment plans and medications 

Other family roles might shift so that someone else, like a partner, family member or friend, can step in to help with the siblings while a parent is at the hospital with the sick child. This could look like: 

• Family routines like mealtimes and school activities 
• Managing the household responsibilities 
• Emotional support to the other children who are learning to adjust to this shift 
• Communication how everyone is managing while the parent is in hospital with the sick child 

During these busy and emotionally filled moments, it is important to look after yourself and your own wellbeing. Finding even a few minutes to sit in the sun, sip on a hot beverage, talk to a friend or another parent may be the kindness you need for yourself.  

Give yourself a break, “remember that you are not superhuman and you can’t do everything and you don’t have to do it right now. You can always put it on a list for later.” Parent 

Bring your hobby or work to hospital, “waiting is easier if you have something to fill the time like reading, writing emails, craft, cards, board games, or even sorting through all the photos on your computer.” Parent 

Stress on Family Roles and Relationships 

All of this can be tough on family relationships. Partners may not see each other often, since one parent is usually at the hospital while the other is at home with the rest of the family. Single parent families might be getting support from other family members or a friend to care for their other children. It can be challenging to find the time and energy to communicate with one another during these very stressful times. There can also be a higher risk of misunderstandings and fatigue. Being aware of these risks can help you take steps to avoid them. These steps might include:    

• Being gentle with each other and keeping expectations realistic   
• Understand each other’s coping styles  
• Asking for tangible support around the home so it doesn’t become overwhelming for both parents     
• Talking regularly, whether it’s on the phone or in person, keeping lines of communication open 
• Taking breaks, even for a short amount of time can help to recharge and rest   

Asking family and friends to help with your children so you can have a break and spend some quality time with your partner or a close friend. 

“Ensure both parents take a break together and have a dinner or go see a movie together or something else.” Parent 

The Whole Family Become Carers 

While one parent usually becomes the primary carer, other family members often take on new responsibilities as well: 

• Older siblings might become “young carers,” helping with household tasks or caring for younger siblings 
• This can be challenging for them, as they may feel like their own needs are being overlooked while still trying to make sense of the changes to their family 
• Grandparents can also take on the carer role  
• They may experience “double grief,” worrying about both their unwell grandchild and their adult child who is navigating this new normal in how to manage the demands that come with the stress of having a child with cancer.  

We acknowledge the ongoing ripple effect childhood cancer can cause. This can be some of the hardest times a family will experience. Creating space and time to check in with each other and acknowledging the caring roles you all have to support each other shows the care, compassion and understanding during this journey you are walking together.  

The Unseen Burden 

Despite all this extra responsibility, many parents don’t think of themselves as “carers” or “unpaid carers.” They see it as just doing what they need to do for their child and their family. However, caring for a child with cancer goes far beyond what parents normally do. It is physically, emotionally, and financially exhausting. If you are feeling the emotional and financial impacts, we would like to encourage you if you haven’t to reach out to Redkite about their counselling and financial assistance program. Otherwise if you need further financial support, have a look at the tips provided from Tips to help families ease financial stress while facing childhood cancer.

Finding time for yourself 

As a parent or carer of a child with cancer, we often hear, ‘I don’t have time to think about my own self-care because my focus is solely on my child’s health which could change from one day to the next.’ Some of our Redkite families have provided some quick easy self-care tips:  

Caring for a child with cancer changes family life in numerous ways, and the challenges are often unseen by others. It’s a job no one asks for, but one that parents and families take on with all the love and strength they can muster, despite the huge difficulties they face.