Resource Companion for the Cancer Parent’s Handbook

Chapter 1 – Through The Fire

Key Statistics for Childhood Cancer

Chapter 4 – Get Your Shit Together

Finding online support with other parents and families

  • Facebook. Searching Facebook Groups for terms such as “childhood cancer”, “pediatric oncology”, or “parents of kids with cancer”, for example, will return countless groups of various sizes with a host of different names. Maybe start with the larger groups, read the posts for a week, then quit the groups that aren’t your jam. These groups can be great for asking nuts and bolts questions about life with childhood cancer, or for simply unloading after a particularly challenging day. Cross check and fact check any advice regarding your child’s treatment or wellness with your medical team and on reputable websites like those listed below for Chapter 7.
  • Momcology, from the organization’s website: “Momcology has been building and maintaining responsible peer support communities for childhood cancer families since 2011. All Momcology online communities are peer moderated and conducted under support group guidelines to maintain an approachable, compassionate, and productive environment for parents seeking peer connections.”
  • Stupid Cancer, a community platform for teens and young adults dealing with diagnoses, treatment, and recovery. From the organization’s website: “We’re here to make it all suck a little less and help you get busy living.”

Finding in-person support locally

There are many local organizations that provide professional mental health support for kids and their families, along with peer groups, activities, and some financial assistance. Ask your social worker at the hospital for more info. In the meantime, some examples of what to look for:

Finding professionally moderated online support

Chapter 5 – Establishing Your New Normal

Notes
“Cleaning products emit hundreds of hazardous chemicals, new study finds”, Environmental Working Group (EWG), News Release, September 13, 2023.

Breathwork

Cecilia learned to calm herself for pokes by pretending to breathe like a whale – big slow breath in, hold for a couple seconds, then big slow blow out. We instructed the phlebotomist or nurse to poke on the big exhale. Worked great! Deep breathing can reduce anxiety and provide calm in any stressful situation.

Mindfulness and self-hypnosis are other techniques kids can learn to calm themselves and manage the pain of pokes or other sources of anxiety.

On Youtube, look up:

Chemicals in Your Home

Chapter 7 – Advocating For Your Child

Chapter 9 –The Hospital Party*

Arts & Crafts

  • Window painting kits (ask your hospital if they are allowed!)

Toys

  • Alex’s Lemonade Stand has a wealth of information and references
  • Coloring and sticker books and a box of markers and crayons
  • Color Forms®
  • Recycled butcher paper, masking tape, and markers for you and your child.
  • If they have a buddy visit, find some wall space and let them go wild with creativity!
  • Invest in a few build-your-own craft kids.
    • Etsy and Amazon have fabulous and inexpensive kits of all kinds for every type of child, from flowers to science, space to animals. Check them out for inspiration. Finished art can then be used as room décor, or your child can give them to a new friend on the ward. Make sure the kits do not require strong-smelling glue as that can be difficult to tolerate on chemo.
  • Nail polish kits (for both of you!)
    • Make sure that scents are okay with your roommate
  • Finger paint, dot markers, paint sticks
  • Stickers of all kinds and a stack of paper
  • Playdough®
  • Paper dolls
  • Toy cars. Small (quiet) remote control cars are fun in the lobby.
  • A wagon to pull around for fun!
  • Bubble blowers (maybe best in lobby, outdoors, or other public spaces)
  • Fold up Hot Wheels® set

Open Ended Play

  • Animal or doll sets. Look for a variety of characters your child can use for creating stories
  • Wooden trains and tracks
  • Felt Kids®
  • Playmobil®
  • Dress-up clothes. These can be as simple as a magic wand, hat, or wig, and are often fun to wear around the hospital when they feel up to moving around.
  • A road or other landscape play mat
  • Tea party items, blankets for forts, stuffed animals, or items for a family picnic
  • Imaginext® toys
  • Lego® or Duplo®
  • Puppets
  • Medical play set (you’d think they’d had enough of that, but Cecilia loved reenacting procedures and interactions with her medical team, often with a stuffie or little sis as the patient—great for their mental health!)

Classic Games

  • Jenga®
  • Apples to Apples® card game
  • Uno®
  • Candyland®
  • Battleship®
  • Monopoly®
  • Packs of kids’ card games like Go Fish!

Quiet Time

  • Books and audio books
  • Special movies (or ones saved for hospital parties)
  • Pokémon cards
  • Kinetic sand
  • Nintendo Switch®
  • Magnet tiles
  • Puzzles
  • I Spy® books
  • Word search puzzles or books
  • Wimmel® books
  • Where’s Waldo® books

*Thanks to the many fellow cancer parents who contributed ideas for this list!

Music for the Hospital Party

  • Music plays a big role in our family, and when songs came up on the radio in the car that spoke to us about our experience, we wrote them down. Eventually this became our playlist, Songs for the Journey, a mix of songs for getting fired up for a hospital party, or for when you just need to shout it out loud (see below)! Sharing a playlist on Spotify is a great way to connect with family and friends when they can’t be nearby.
  • Of course, before bedtime we changed the mood with music for relaxation, which you can find on countless Spotify playlists, Apple Music, Amazon Music, etc. Search playlists on your favorite streaming platform for things like “bedtime music for kids.”
  • As we settled in for bedtime, we always switched to a low, slow, ocean surf soundscape that remained on throughout the night, something we had always done at home since our kids were babies. Again, there are countless options for soundscapes on the music platforms. Let your child help pick one that’s comforting, or maybe one that reminds them of home.

Cecilia’s Songs for the Journey Playlist, below, can also be found on Spotify.

  • Under Pressure, Queen with David Bowie
  • Angel, Sarah McLachlan
  • Tubthumping, Chumbawamba
  • Fly Away, Lenny Kravitz
  • It’s Called Courage*, from the animated short, “Dazzle the Dinosaur”
  • Walkin’ on the Sun, Smashmouth
  • Start the Commotion, The Wiseguys
  • I’ve Seen Better Days, Barenaked Ladies
  • Lullabye, Shawn Mullins
  • Good Riddance, Green Day
  • Hakuna Matata, from “The Lion King”
  • All Star, Smashmouth
  • Jumper, Third Eye Blind
  • You’re Still the One, Shania Twain
  • Follow Me, Uncle Kracker
  • We Are One, from “The Lion King II: Simba’s Pride”
  • Don’t Look Back, Boston
  • Drive, Incubus
  • Your Life is Now, John Mellencamp
  • All I Really Need*, Raffi

*not available on Spotify

Chapter 10 – Thrive, Body and Soul – Tips for You as the Caregiver

Books

  • A New Earth: Awakening to Your Life’s Purpose, Eckhart Tolle, Penguin, 2005
  • Jesus Calling: Enjoying Peace in His Presence, Sarah Young, Thomas Nelson, 2011
  • Peace is Every Step, Thich Nhat Hanh, Random House, 1992
  • The Book of Joy: Lasting Happiness in a Changing World, Tenzin Gyatso, the 14th Dalai Lama and Desmond Tutu, Cornerstone, 2016

Simple Self-Care for Mental Health

Chapter 11 – Thrive, Body and Soul – Tips for Your Child

Books

  • Complementary Cancer Therapies: Combining Traditional and Alternative Approaches for the Best Possible Outcome, Dan Labriola ND, Prima Health, 2000

Supportive Complementary Therapy

  • Northwest Natural Health, Daniel Labriola ND and Lesley Morical ND, Northwest Natural Health has developed a line of supplements especially formulated for cancer patients called Safe and Sound®
    • In our experience, NNH is a unique organization, with naturopaths collaborating side-by-side with oncologists on the cancer wards in the hospitals of the greater Seattle area. Maybe there are similar clinics near you, though we received amazing care and attention from NNH over phone and video.
    • Never provide vitamins, herbal remedies, or dietary supplements to your child without consulting the team at NNH for recommendations or without the consent of your oncology team. The protocol of chemo, radiation, etc., prescribed by your medical team is your best bet for a cure, period. Complementary therapies help support the health and wellness of little bodies to better tolerate this assault and avoid secondary infections.
  • Massage. Numerous studies have established the many health benefits of massage for children at any age, including simple relaxation and reduction of stress. For our warrior kids, massage can help flush lingering toxins from treatment out of muscle tissue, ease stiff joints from chemo and bed rest, and promote healthy sleep. Remember to create quiet surroundings (maybe use headphones if in-patient), start gently, and follow your child’s lead for their comfort and patience. Be sure to encourage active hydration after massage to help tissues flush toxins.
  • Aromatherapy
  • Hydration, not only following massage, but especially during rounds of chemo, helps organs such as the liver and kidneys process the onslaught of toxins. Make a game of drinking an appropriate volume of water during infusion and/or immediately after, say during leucovorin rescue after methotrexate, with stickers on a sheet to mark each 20ml increment. If your child is prone to nausea and vomiting during chemo, it’s even more important to replace the fluids lost as soon as they feel up to it.
  • Take your child for a leisurely walk barefoot in the sand, soft dirt, or grass where it’s safe to do so. This is a concept called earthing (see above) that is restorative for your body. And it’s almost always therapeutic to just go outside for a walk.
  • Mouth sores from chemo are especially frustrating, as the pain can be a barrier to nutrition and hydration. Here are some great tips from The MD Anderson Cancer Center.
  • Hair loss. This is, of course, an emotional side effect, and addressing it depends greatly on your child’s age, gender, and individual temperament. Younger kids don’t necessarily understand the potentially awkward social implications of baldness the way school age kids or teens might. Their “normal” is whatever world you create for them, so don’t force hats and wigs on the little ones for your own comfort, for example so strangers won’t stare. There’s no need to make your child self-conscious about one more thing that’s outside their control. For older kids and teens, don’t assume they want to cover their scalp. Talk with them about how they feel, follow their lead, and support their choices with love and warmth. Some kids want to show off their shiny scalp as a badge of honor, and some fear going to school without a wig. Celebrate their individuality either way.
  • The MaxLove Project, Culinary Medicine for All
  • Beads of Courage
  • Earthing or Grounding, see links above for Chapter 10

Chapter 12 – Sunshine Therapy

For Parents – addressing impacts stress, anxiety, fear and PTSD

For Siblings – addressing impacts stress, anxiety, fear and PTSD

  • Note that many summer camps and cancer family support centers listed above offer programs just for siblings to address their unique mental and emotional health challenges.
  • University of Pennsylvania School of Nursing, an informative perspective regarding siblings’ mental well-being
  • Sanford Health, guidelines for caring for siblings’ mental well-being
  • Canadian Cancer Society, article similar to above

Chapter 13 – Looking Forward

Gratitude

Breathing

  • Cyclic, or Circular, Breathing, for an expert video guide from Stanford University Medicine, search “How cyclic breathing can relieve stress | 90 Seconds w/ Lisa Kim” on YouTube
  • “4-7-8 Breathing” is another simple and effective technique for reducing stress and anxiety

Giving Back

For us, giving back was a great way to help process the emotional cocktail that comes with being a cancer parent, a common experience whose effects are backed by science. We had our favorite places to channel this energy as discussed earlier, but there are many ways to give back. Find the one that resonates with you!

  • The American Cancer Society
  • Relay for Life
  • The Leukemia & Lymphoma Society
  • Make-A-Wish
    • For your child’s Wish, start with the MAW website, or ask the social worker or other staff at your hospital for help. A Wish Child needs to be recommended by their doctor or nurse practitioner. And remember, Wishes are not limited to kids with terminal diagnoses only, a common misconception.
    • Your local MAW chapter is always looking for volunteers in a wide variety of activities. You might also consider becoming a Wish Granter, which requires additional training and commitment.
  • Omar’s Dream Foundation enables hospitalized and medically supervised children to remotely attend school, allowing them to stay connected to their teachers and classmates.
  • The Deep C Podcast dives deep into childhood cancer, and is for families, caregivers, friends, and community who are supporting a child through a cancer diagnosis.
  • Your local cancer family support center is likely to be looking for more volunteer help, and many have annual fundraising activities you can participate in.
  • St. Baldrick’s Foundation, source of the original head- shaving fundraising event, now also includes other events as one of the U.S.’s biggest fundraising organizations helping support the search for cures.
  • The science of positive health effects from giving back, a few examples:

Chapter 14 – Survivorship Begins Now

Late and Long-Term Effects

Going Back to School

Getting back to school among friends, in a familiar (non-medical!) setting, and being engaged mentally and physically, are all positive goals for your child’s well-being; however, navigating school protocols and getting the resources your child needs can be a difficult task. But you’re now a cancer parent warrior, ready to take on the world for your kid! A few sources of help and guidelines to get you started:

Chapter 17 — Turning the Page

Going Back to School

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