There are so many ways you can help make a difference in the lives of patients and families today.
This interactive story follows the story of Gabriel and his sister Alex, who is diagnosed with a pediatric brain tumour. Gabriel narrates the story, sharing his thoughts and feelings about his sister’s illness in a way that is both relatable and engaging for children. The story contains colourful illustrations and interactive elements for kids and parents to explore together.
The Sibling Support Project was created as a way to increase supports for siblings of children affected by brain tumours, and fulfill Brain Tumour Foundation of Canada’s mission to provide help to everyone affected by a brain tumour.
Click here for the narrated video version.
How do you explain a brain tumour to a brother or sister? How do you cope with the emotional stresses that a child feels? In this e-booklet, the Sibling Support Project provides a thorough guide for parents to help understand and navigate the unique challenges felt by siblings of brain tumour patients. Read it below or click to download for handy reference.
The Sibling Support Project (www.siblingsupportproject.com) was created by five students from McGill University’s Ingram School of Nursing. They developed these resources as a response to the need for more sibling supports. The team is:
Thomas Saikaley, Nilani Thuraisingham, Leah Tracey, Aviva Wang & Sydney Wasserman
For many of us, the longest relationship that we have in life is with our sibling. Whether you are the best of friends or the worst of enemies, your sibling will be there to celebrate life’s sweet moments and be there for the rough spots. For some people, this may include a brain tumour diagnosis. Now what?
After your brother or sister has been diagnosed, your view of the world may change. What you once thought could only happen to other people, has now happened to your family. As a result, you may feel a range of emotions that you have never felt before.
Sadly, Mackenzie lost her brother to a brain tumour. She explained her thoughts about their brain tumour journey on her YouTube video series entitled “The Feelings Lab” (see video). She was first sad her brother was in the hospital, then scared that he may die, and finally mad that most of the attention was on her brother and she was feeling left out.
These are just a few of the “big feelings” that are normal to experience when your sibling is diagnosed with a brain tumour. Parents and siblings should do their best to understand these feelings, as well as all the behaviours and emotions that go along with it. This will help make it easier to meet the needs of your family member.
It is easy for me to say that all you have to do is respond with empathy, love, and understanding and that everything will be fine, but I think that is a “tad” too general and I hope that the suggestions below will help.
Take steps to ensure that things stay simple and your daily routine stays ‘normal’ as much as possible. Organize a list, outline what is important to accomplish, and be sure to include activities that bring meaning and happiness to you. It’s hard to support your sibling throughout their journey if you are not first supporting yourself. This isn’t being selfish; it is making sure that you have what you need to get through the ‘tough times’.
Some siblings automatically go into “fix it” mode by starting to research online about various treatments and will show up at the patient’s door with kale smoothies. If this describes your recent behaviour please know that while your sibling might appreciate what you are doing…they might appreciate it more if you would stop. Sometimes you might need to just sit with your sibling and be a “silent witness” to the recent changes and events in their life. You would be amazed at what you can learn about a person you have known your entire life just by asking “hey…tell me how things are going”.
Try not to think about what you want to say next, or begin to speak at those “pauses” that happen naturally in a conversation; try instead to concentrate and comprehend what has been said. Respond with empathy and understanding. This way of “active listening” will allow the necessary space and time for your sibling to unload what they are feeling, as well as validate their innermost thoughts and experiences.
With all that being said, you still need to validate your own feelings and take care of yourself in the process. According to cancer.net, common feelings that younger siblings may experience are feelings of guilt for not being the ‘sick one’, being fearful of death, feelings of jealousy, sadness, and grief. It is a little different if you are older, but not much. You may live far away and as a result, may feel guilty for not feeling ‘disrupted’ from your siblings’ sickness. A sudden role change within the family may also happen, leaving you with new responsibilities. Not feeling in control or feeling overwhelmed is common; a brain tumour diagnosis affects everyone in the family but the effects will vary greatly by age and role.
An easy way to help manage these feelings is to acknowledge them for what they are and take special note that feeling this way does not make you a bad person. We are all human and will experience a range of emotions.
If you are still finding that you are feeling depressed, sad, or anxious, even after talking about it with close friends and family, give yourself permission to get help and seek the advice of a professional. No one needs to do “the journey” alone and having the support of a social worker or psychotherapist will allow you to explore these feelings in a safe environment.
Some simple things that you can do to help your sibling through a brain tumour diagnosis are to help manage medical appointments, find supportive family members and friends, and create a “circle of care” around your sibling so that they feel supported. Ask what can be done to make life a little easier. Meal plan and stock up the freezer with healthy home-cooked meals that can be easily warmed up and served. Join a support group and connect with others who may be experiencing the same difficulties. Share stories and encourage one another to talk about what you are feeling, live and enjoy life day-by-day.
Finally, don’t forget…the greatest gift your parents ever gave you was your siblings.
For more tools and resources to guide you through your child’s brain tumour diagnosis, explore the Pediatric and Family Support section of our website, or visit our Virtual Pediatric and Family Support section for more resources and family activities.