Celebrating the Holidays with a Child in Treatment
Monday December 7, 2020
The end of year Holidays are more important than ever when a child has cancer, but they can also bring extra burdens on top of intensive treatment. Child Life Specialist, Morgan Livingstone, offers advice on how to create a magical Holiday for the whole family when a child is in treatment, with self-care at the heart of thoughtful planning.
Morgan’s Covid-19 tree. Our family’s simple feather tree is about 100 years old. The baseball glove ornament is my son’s favourite, the mermaid is my daughter’s favourite, and the bacon is my husband’s favourite. We added several decorations to reflect this pandemic year – a wood decoration with the burning 2020 trash dumpster, a toilet roll and hand sanitizer.
Could your family decorate a tree to reflect events of your year, or represent things you are thankful for or that you’d like to let go of as you celebrate the Season and prepare to enter the New Year?
In most families, holidays and special occasions are times of excitement, tradition, and family togetherness. When a family must also face a young child’s cancer treatment during those times, the hectic but expected routine of these special days and occasions may well be challenged or changed. Special celebrations are extremely important to very young children, but they don’t have to be fancy or huge to make a child happy.
Four Key Needs During the Holidays
Even during a holiday or special occasion, children receiving treatment, their siblings, parents and the extended family all have varying needs and supports in relation to the cancer diagnosis and treatment.
- They need information about what is happening, including possible treatment days during the holidays, especially those requiring hospitalisation.
- They need an opportunity to express their concerns and feelings. For young children having treatment and their siblings, this would include regular access to open play opportunities that encourage expression of feelings.
- They need preparation for possible changes or differences in their family schedule through the holidays, even if you are not sure yet. Let children and siblings know that there might be changes, and you will update them about what those changes might be as soon as you know.
- They need boundaries and rules that help all children feel secure.
Make the Holiday a Positive Experience
Beyond these basics, there are some specific things you can do to help make your holiday or special occasion a positive one, in spite of cancer, surgery and chemotherapy. Here are some suggestions:
Sit down with the family and discuss which traditions matter the most to everyone that you would like to complete, and then discuss possible new ideas for celebrating. You may find some old traditions aren’t so essential and can be saved for another celebrations in the future.
This may be the year you limit material items and focus on love and togetherness, or it could be the opposite – you may want to give more than ever before to help boost everyone’s mood. No matter what, figure out as a family what you need and want from this holiday season.
Flexibility is Key
Sometimes, even the best made plans will have to change unexpectedly. Modifications and adjustments can be made and plans adapted to ensure you can celebrate, just a little bit differently.
You can create a simple “back up plan” for the major aspects of the holiday, so you won’t be caught off guard. For example, plan an alternate date for the BIG celebrations, should your child not feel/be well on the actual day due to infection, recent treatment or if recovering from a procedure.
COVID Safe Holidays
A new concern is the safety of gathering with extended family during this unprecedented pandemic. Speak with your medical team about their recommendations for your child regarding the safety of seeing people outside your immediate family home.
Adjust your expectations about seeing extended family members in-person. Plan fun and engaging virtual celebrations, or appropriately distanced visits in an outdoor area for a holiday scavenger hunt. Use COVID precautions such as wearing masks, frequent handwashing and airflow/ventilation if the area is covered, to reduce your risk.
This article helps share a wide range of ways families safely adapted their diverse holiday celebrations during the pandemic
Focus on What Matters
It might be good to consider saving your time and energy by not making the festive meal yourself. Consider ordering the special meal, or parts of it, so you can conserve your energy and remain focused on making positive memories with your child and family. By ordering the meal instead of making it, you will not be exhausted (or stressed) from trying to cook everything yourself.
Similarly, lowering your expectations about some aspects of the holiday can greatly help you focus on the tradition. For example, getting an artificial Christmas tree instead of a real tree will avoid you expending too much of your energy on getting a real tree and dealing with the clean up of falling needles through the holiday season.
Ask for Help/Accept Help
Make sure you open yourself to accepting help. Family and friends may offer it, or you can request help. Whether it’s help with cooking a special part of the holiday meal, decorating your home with festive décor, or simple things like the shopping or laundry, your friends and family won’t know you need help unless you ask or tell them.
Put together a simple list of different ways (BIG and small) that people can help out. You will likely be surprised at how quickly it all gets done. Visit the WE C Hope Family and Friends resource for ideas of many ways in which people can help, and consider signposting your support community to this resource too.
Location, Location, Location
For some people, the holidays are SO IMPORTANT, and for others not so much. If you love the holidays but not the stress that comes along with the planning, preparations, decorations and meals, consider whether another family member or close friend can (safely) host the festivities this year while your child is in active treatment. Being able to participate without the fuss and mess of doing it all at home might be just what the family needs to enjoy and celebrate.
Some families must celebrate important holidays during a hospital stay. The team at the hospital, including child life specialists/hospital play specialists, social work and more will help to provide a celebratory mood, often with food and gifts to honor the holiday.
Sometimes money is tight when a child is going through cancer treatment, and parents/caregivers need to be off work to provide support. No matter what the financial challenges are, friends and family members, as well as charities and community organizations can help you create a great holiday experience for your family.
Child life specialists/hospital play specialists and social workers are able to connect patients and families to these donations – some donate food/meals, gifts for the patient and the whole family, and access to so much more.
Watch this helpful video from the Dana-Farber Cancer Institute, in which they share tips for enjoying the holidays with more self-care during cancer treatment.
Childhood Cancer Holiday Support Options
Many charities, health organizations and local/regional groups that support children and families facing a childhood cancer diagnosis are available worldwide. If you need assistance, start by asking your medical team to direct you to the supportive groups in your immediate area. Browse WE C Hope’s list of organizations, where you will find charities providing psychological, practical and financial support in many different forms.
Here is a perfect example of a holiday that needed to be rescheduled for a young childhood cancer patient, and with the help of a major chancer charity, the outcome was spectacular!
Planning Your Holidays
Taking a little time to plan your holiday season in advance will help you avoid or reduce stress during the festivities. You can more easily identify where you may risk over-committing yourselves, make a note of your needs, brainstorm potential solutions, and quickly document follow up actions.
This simple Holiday Season Activity Tracker can be used throughout the year as a great planning tool for any family activity. Download the file as a PDF or an editable MS Word file.
Be Kind to Yourself! – Advice from a Parent
The biggest thing I would say to a family during this time of the year is, BE KIND TO YOURSELF!!! Your kids couldn’t care less what they ate on a certain day, or which family they saw or didn’t see. What they DO care about is being with you. Having your attention, laughing, and playing.
We have not traveled for the holidays in years due to kiddo being just off treatments. I have solid traditions from growing up, as does my husband. While I love the traditions of big meals, spending time decorating, baking and frosting cookies, over the last few years, I also had to acknowledge the stress they bring.
2020 has been stressful enough. BE KIND TO YOURSELF!!! Buy the Pillsbury refrigerated sugar cookie dough and cut out cookies from that. Frost them with canned frosting. I promise your kid really won’t care what they taste like. They will care that they spent time cutting them out, watching them bake in the oven, then using an entire jar of sprinkles on two cookies – all with YOU!! BONUS: you don’t have 15 dishes to wash, nor did you get frustrated that spoonfuls of flour ended up all over the kitchen floor.
Last year, we pressed the super easy button for US Thanksgiving. This year, I planned the same thing. Ordering our favorite take out. My goal last year was to enjoy the time everyone was home together, to not waste my precious time with my children by slaving away at a meal they would eat maybe ten bites of. So, we ordered Thai (the kids’ favorite) and sushi for mom and dad.
Make sure your favorite place is open on the holiday – our normal go to spot was closed when I went to order. Since I knew they wouldn’t be open on the day, I ordered the day before and warmed it up on Thanksgiving.
I do really love pumpkin pie, so I bought one instead of making it. Again, I’m putting time towards my family instead of making food. However, one homemade food I just “need” to have on Thanksgiving is my Grandma’s cranberry relish, so I did make that. I had three dishes to wash, and it took 10 minutes to make the relish, instead of doing the whole turkey spread that would take five+ hours, during which I’d run the full dishwasher twice.
We kept Christmas with just our nuclear family (the people who live in your house – my husband, myself, and two kids). Being the only ones to witness the joy of your kids’ faces as they see everything Santa has left, is truly a gift.
Please do not think this is a selfish thing to do. Having a kiddo with cancer is more than hard. It is ok to say “No” to loved ones. Many milestones are clouded by cancer, and others having to be around you. You need memories of just your family without having any outside pressure.
I know telling grandparents “No” is hard, and sometimes they don’t understand. In a case where someone may insist, I’d highlight the need to limit exposure to infection and protect health as a reason that someone shouldn’t visit. This year, really, we shouldn’t be traveling anyhow for the holidays. Hunker down, find some new games to play, and enjoy quiet, slow time with each other.
From left to right, Emily, Audrey, Brody, and Michael.
Games that my kids love:
- Don’t break the ice: A 1.5 year old can play this game easily with older siblings. 6th graders love this game too!
- ChickyBoom: Young 2s all the way up can play this one too.
- Ticket to Ride Jr: Great strategy game for 6+yrs.
- Dance party with disco light: Small Disco lights can be bought from Amazon for less than $15, and provide hours of fun.
- Let’s Go Fishing: So many versions of this classic wooden pole and magnetic fish game. Good for kids 2+ years. 2 year olds need some help, but it is a good one to play with older siblings.
- Build a Fort: Spend one of your holidays building a huge blanket fort. Get all the sheets out of the closet and build away! I promise this will remain in everyone’s memories for years and years. If you need center supports for sheet forts, a vacuum and kitchen chairs work well. Use piles of books or full laundry baskets to help hold down sides.
I hope some of these ideas help give you more peace this Holiday. The biggest thing again, BE KIND TO YOURSELF!!! The less stress, the better. I don’t have any regrets on how we did the holidays last year.
Be kind to yourself, and enjoy the gift of these holidays together as a family.
Mother to a retinoblastoma Angel
From left to right, Audrey, Michael, Emily, and Brody. Thanksgiving 2019.
Being in hospital during the Holidays means children and parents cannot join the usual festivities. But you can bring festive spirit and familiar traditions into your hospital space to delight and sustain you all. While cancer has no regard for Christmas, Rb Survivor, Abby White shares 10 ways to support your emotional wellbeing, and your child’s, and welcome festive cheer during a yuletide inpatient admission.
The family of a child with cancer needs much care and support at any time of year, but this often increases dramatically throughout the Holiday season. Real Festive Season spirit is found by sharing hope, peace and friendship. Read a mother’s memory, and tips to support families through the Holidays.
When a child has vision loss from retinoblastoma, highly visual aspects of this Holiday Season can be challenging, exclusionary and isolating. But a little thought and creative adaptation can completely change the experience. Bilateral Rb survivor Abby White shares 12 ways to include blind and visually impaired children in traditional Holiday activities.
About The Author
Morgan Livingstone is a Certified Child Life Specialist and Certified Infant Massage Instructor/Trainer. She is passionate about improved child life and psychosocial supports for children and families affected by retinoblastoma.
As the Child Life Officer of World Eye Cancer Hope, Morgan contributes to the website’s Child Life sections, and speaks globally about child life supports for children with retinoblastoma. Morgan provided enriched multi-day child life programming for children of all ages at both One Rb World in Washington, D.C. in October 2017 and the Canadian Retinoblastoma Research Advisory Board meeting in December 2017.
Morgan also writes and creates resources for children and adults, and participates in child life research studies. She won the inaugural Innovation Grant at Operation Smile for developing an APP that uses Virtual Reality to prepare children receiving cleft lip and palate surgery for their operation.
Download Morgan’s helpful parent manual for supporting children’s worries using Worry Eaters.