Welcome to Tipline Tuesday when we will share various tips on how to deal with Childhood Cancer, including dealing with the devastating news that your child has cancer, dealing with the different types of treatments and their side-effects, dealing with the physical, emotional and psychological effects of cancer on the child with caner as well as on the rest of the family, and much more…
No parent is ever prepared to hear that their child has a life-threatening illness, so for most parents the first few weeks are a blur. An immediate flood of emotion encompasses their thoughts as their brain puts up a wall to protect them from what they never imagined they would have to deal with. Questions override their thought process as fight or flight sets in. Is their child going to die? How will they tell the family? Will their child be in pain?
Dealing with the Diagnosis
Parents have a lot to manage after their child is diagnosed with cancer and the first few weeks can be overwhelming.
The first thing parents need to realise is that there are no right or wrong feelings when your child has just been diagnosed with cancer. Some parents have trouble believing that this is happening; others cry, while others focus on making treatment decisions. All of these reactions are normal.
Some of the most common reactions to hearing a child has cancer are:
- Disbelief and denial
- Feeling overwhelmed
As you are trying to process your child’s life-altering news, the doctor is usually giving vital information on the cancer itself, and what the next steps should be. Gathering as much knowledge as you can is crucial in the moments after the initial diagnosis phase, so it is wise to listen.
Below are some tips on a healthy approach to the unwelcome news
1. Breathe – Take a moment to let the information sink in. Ask the doctor to repeat the diagnosis and any essential details so you have time to comprehend the information fully.
2. Take Notes – As your brain attempts to handle the new diagnosis, you may not remember everything they tell you, including significant details on the disease and necessary steps to take in the near future. So be sure to write down key points of the discussion such as the name of the specific cancer type, and any additional information you receive from them at this time.
3. Bring a Support System – Ask a family member or a friend to be present. Two sets of ears are always better than one, especially in this circumstance. Your spouse, family member, or a friend may be able to remember specific details you can’t recall during this fuzzy period of shock, disbelief, and fear. It is also wise to have a support person who could be available during this difficult time.
4. Ask Questions – Don’t be afraid to ask as many questions as you can think of. The information may be limited at the initial time of diagnosis because of the need for future tests and insights from a specialist, but it never hurts to ask.
Examples of questions to ask include:
- What is the stage of cancer?
- What are the treatment options?
- How will the treatment affect my child’s future growth?
- What are the names of key members of my child’s future cancer care team?
- What is the next step?
The last question is the most important thing you must confirm. Before leaving the doctor’s office, make sure to have a clear understanding of what comes next, such as a follow-up appointment with the appropriate cancer specialist.
5. Gather More Information on the Type of Cancer – Knowledge is power, and this moment is no exception. Having accurate and credible data, including resources on your child’s diagnosis, can help you and your family better understand the disease, and what to expect in the future. It may also help to minimise fear and anxiety; the fear of the unknown will diminish with the more education you receive on the disease itself.
NB: Always make sure to use suitable resources and accredited websites for educational materials to ensure that the data are based on correct facts and the information is legitimate. See our Type of Childhood Cancer, Childhood Cancer Treatments and our Resources Page amongst others for more info.
6. Ask about Financial and Emotional Support Resources – Childhood cancer can be daunting for a child and for the family, with the potential to cause financial and emotional hardships on top of the physical and mental issues that arise when dealing with cancer. Access to financial and emotional support while the patient and caregivers deal with the disease and the effect it has on everyday life, can be indispensable.
Paediatric cancer is unique in that the child will have to manage long-term physical and emotional side effects of cancer and cancer treatment for the rest of his or her life. Always ask for these resources early on to ensure you get adequate and timely assistance. Examples of additional support services to ask for include available payment plan assistance programs and information about pediatric cancer support groups for children and caregivers, as well as the use of local and national organisations that fit your needs.
7. Seek Additional Help – It’s important that you and your child continuously understand the 5 “W’s”—Who, What, Where, When, and Why of dealing with cancer. Be sure to inquire about dedicated resources that may be available in the medical facility and within your community.
These resources can provide expertise and assist with things such as communication, education about the diagnosis and coordination of care, and coping with the trauma of a cancer diagnosis in a child, as well as provide insights into your child’s new normal.
By using these types of resources, you can make sure that you and your family don’t fall through the cracks of the complex world of cancer and understand exactly what steps to follow.
Creating a New Normal
As mentioned, hearing a cancer diagnosis, especially for your child, can be an overwhelming experience many of us are not equipped to handle without assistance. The toll that the disease takes on the child, the family, and the community gives a whole new meaning to the saying, “It takes a village.”
In the first few weeks after a child’s diagnosis, family schedules and routines get turned inside out. The first few weeks can feel like a movie of someone else’s life. Part of what helps children with cancer, their siblings, and other family members cope is finding ways to keep as many things the same as possible or creating new predictable routines around treatments schedules – in other word creating “a new normal”.
It can take a little while to get through the initial shock and learning about your child’s illness, but here are some things to think about and help you keep or create routines while your child is getting treatment:
- Talk with your employer about what is happening quickly after diagnosis to find out what programs and resources are available to help you take time off or keep working during your child’s treatment. There are different types of leave, including Family Medical/Compassionate Leave that may be available. You may also be able to work from home or from the hospital, depending on your job.
- If people in your community and family offer to help, think about things they can do to help that will help your family keep routines. They may be able to help drive siblings to school or to activities, with meals or in other ways to help keep your household running as smoothly as possible. Consider asking a friend or family member to be the contact person for managing and coordinating offers to help.
- Talk with the health care team about when and if your child may be able to return to school. It will help to know how and when school work can be part of your child’s life during treatment.
- Ask the health care team for a schedule of treatments for the first few weeks, including how long they think appointments and treatments will last so you have an idea of how the days and weeks flow.
- Talk with the health care team about what medicines your child will take at home and how they can be scheduled to match your family’s routines with meals and bedtimes.
- Know that it will take time to create new routines, but that your family will adjust.
How to Cope with Feelings and Stress
The challenges of a child’s cancer are particularly great for parents whose children are very young, because with a child who is not yet speaking, these parents have the additional responsibilities of interpreting their child’s moods and expressions for doctors and nurses.
Being your child’s number one advocate can be very draining, but it is an honour, and seeing small positive changes feels like a huge victory. Celebrate these victories with your child, but be aware that treatments can last several weeks, months, or even years, so figure out treats for the big victories and speak to your child’s health-care team about smaller ways to provide encouragement.
Some families find it helpful to create a Website, Facebook Page or WhatsApp Group to keep friends and family members up to date on their child’s journey.
Other parents of cancer patients can be a lifeline for you as you can share the stress and also learn from each other the things that your child’s medical team cannot always tell you. Talking to other parents can also provide a much-needed emotional release as you can find it helpful to say out loud the things you might be afraid to say outside of the cancer world, such as your fears or a recurring nightmare.
Find some time for yourself – take a walk in nature to re-energise or relax by taking a long bath; go for a cup of coffee or a meal with a friend; make sure you get sufficient sleep; above all, talk about your child’s cancer and your feelings… keeping it all in will do you untold harm.
Unfortunately, parents of chronically ill children are not always guaranteed that they will have another week with their child, so it is vital that you learn to “live in the moment.”