Family & Patient Support

As a teen, managing mental health while balancing school, friends, family, and relationships can feel like an impossible task. Add in the stress of a cancer diagnosis and things can feel like they are spiraling out of control quickly. With the right tools, though, we can strengthen our emotional well-being and bonds with others, even in times of high stress or critical need.

When we don’t feel well, get sick, or get injured, our doctors formulate and follow treatment plans to help us manage our pain and heal our bodies. Similarly, when we create and maintain a toolkit specifically designed to support our mental health, we can proactively protect our emotional needs and help safeguard against bigger issues from arising in the future.

Just like a first aid kit, there are lots of essential items that you’ll want to include to ensure you’re prepared for anything.

• First and foremost, will be a short note detailing key mental health information:
  What are some of your go-to coping skills and strategies? (Examples may include deep breathing, muscle relaxation, thought stopping, yoga, dance, music, art, etc.)
• Who are your primary support people? (Your list may include friends, family, counselors, spiritual advisors, etc.)
• What emergency phone numbers may you want or need in moments of high mental or emotional stress? (i.e. Georgia Crisis & Access Line: 800-715-4225; Suicide and Crisis Lifeline: 988)

Once you’ve created your letter to yourself, it’s time to fill up the rest of your kit. As you select what items to add, it can be helpful to think about each of your senses and what appeals to them.

Sight: pictures of special places, people, and pets in your life; fun magazine clippings; a list of comfort books, videos, or TV shows/movies; favorite poems, quotes, or affirmations
Sound: favorite CDs or Vinyl; links to songs or artists that you enjoy; a seashell (to listen to the waves); a windchime
Touch: stress balls; fidgets; silly putty or slime; kinetic sand; fabrics or textures you enjoy; stuffed animals; weighted blanket
Smell: small bottle of perfume or cologne; essential oils; candles; wax melts; scented markers
Taste: chocolate (preferably dark chocolate, due to its proven mental health benefits); fruit snacks; bottled water; favorite candy or snacks; mints; chewing gum; favorite tea flavors or water enhancers

Once you have items supporting each of your senses, you will also want to include some mindfulness or grounding activities…anything that can help your brain focus on the present moment and not the tornado of thoughts, feelings, or fears swirling around in your head! Some options for this might be a small craft, a puzzle, coloring or doodling pages, sensory tubes, yoga pose cards, printed or audio-guided meditations, a finger labyrinth, or even a snow globe (to shake up and then watch as the snow settles back to the bottom).

Many of the items in your toolkit may already be around your home and simply need to be collected in one location, but others may take a bit more effort. The dollar store can be a great place to find affordable sensory items and activities, but if going to the store is too much to manage, then there are tons of resources and toolkit necessities available online.

https://www.strong4life.com/en/emotional-wellness/coping/healthy-coping-strategies-for-kids
https://www.nih.gov/health-information/emotional-wellness-toolkit
https://mentalhealthcenterkids.com/blogs/articles/coping-skills-for-teens

Finally, it is important to make your toolkit easily seen and accessible, by placing it in a readily available spot in your home and decorating it with positive statements, stickers, paint, or even a fun fabric cover. Start getting into the habit of looking through and using your toolkit on a regular basis, so that when you need it, your mind and body will already know just what to do!

If you or your sibling has been diagnosed with cancer, CURE can help through our Counseling Program. To learn more, visit curechildhoodcancer.org/family-support/counseling/ or contact Chelsea Key at [email protected].

Rachel Raven is a Licensed Clinical Social Worker focused on helping clients of all ages on their journey towards growth and happiness.

By Alice D. Hoag, EdD

Caring for a child with cancer is one of the most challenging experiences any parent can face.  The emotional toll on caregivers is immense, often leading to feelings of burnout and strain on marital relationships.

It’s crucial for both partners to stay aligned in their approach to caregiving.  Even though they each have their own unique relationship with the child, they may have different outlooks on life and different emotional-regulation styles.  It’s vital for partners to stay connected as a couple, despite possibly having different love languages or expressions of their affection for each other.

Here are some tips:

• Respect Differences

Acknowledge that each partner may cope differently with this stress and trauma.  One may be more hands-on with medical care, while the other provides emotional support.  One may need to take a leave of absence while the other increases their work responsibilities to make ends meet.  One may need greater physical/sexual intimacy during this season of distress. One of the most important things you can do is respect and value these differences and figure out a way to honor each person’s needs.

• Avoid Blame

Cancer is no one’s fault.  Blaming oneself or one’s partner is a futile expression of anger, a waste of energy.  It won’t take the cancer away, and it won’t make it easier to navigate; it only creates division and exhaustion.

• Unified Front

Let love and respect for each other be the strongest elements in your relationship with one another.  Present to your child that you are a unified team of love and safety for them, that both of you love your child in your own unique way, both of you are determined to keep your child safe, and both of you are working tirelessly toward your child’s healing.

• Regular Check-Ins

While time together is scarce at best, especially during the early stages of diagnosis and treatment, making time to stay connected with each other is essential.  You are partners on this journey, not just co-workers.  Schedule regular check-ins to discuss your child’s care, your feelings, thoughts and concerns, and how to juggle all the other responsibilities. This helps ensure that both partners are informed and involved.

• Communicate, communicate, communicate

In case you missed it with that last point, communicating with each other is an absolute necessity!  Communicating proactively and intentionally can be difficult when you’re both stressed, scared, and have no time. Give yourself and your partner permission to miss something important because you/they were multi-tasking and simply weren’t able to pay attention.  Ask the other to repeat what was just said or offer to repeat what you just said without irritation, gently and with compassion.  You are both most likely doing the very best you know how at this moment.

• Set Boundaries

Establish boundaries to protect your relationship. For example, designate certain times as “couple time” where you focus on each other and not on caregiving duties or on the heaviness of cancer.

• Delegate

Lean on your support network.  It is not uncommon for friends and family to express a desire to come alongside to help.  Since most have probably never experienced the devastation and overwhelm of caring for a child with cancer, this help is often so vague that it feels more like an obligation than a help.  (“Let me know how I can help.”)  I often hear from clients that they have no bandwidth to come up with ways people can help, so they end up not utilizing the help being offered.  Try to keep a list on your phone of small to large things people can help you with: making meals for those at home; running errands for things you or your partner may want at the hospital; taking care of your pet(s); babysitting your other children; play dates, or parties; providing lawn care, etc.

• Seek Support and Professional Help

CURE Childhood Cancer is a rich resource of support for those on this journey; take advantage of all the services and support they offer. Many of my clients tell me they appreciate talking with a counselor rather than their friends/family because they “don’t want to burden them” with their painful journey all the time and would prefer keeping these relationships as distractions from the heaviness of cancer. Counselors are unbiased third parties who are trained to handle trauma and challenging emotions.

If you or your family needs support during your cancer journey, please contact Chelsea Key at [email protected].

Parents and caregivers of children with cancer often feel the weight of the world on their shoulders. There are clinic days, hospital stays, dinners to be made, laundry piling up, and work deadlines to manage, not to mention the background fear, worry, and isolation you may feel.

May is Mental Health Awareness Month and it’s a great time to look at ways to boost your own mental well-being and resilience. Though a spa day would be nice, there are other subtler and smaller ways to boost your wellness.

• As you sit and read this, notice your posture. Are your shoulders hunched and your torso curled forward? If so, breathe in through your nose and pull your shoulders down and away from your ears. Slowly breathe out as you lengthen your spine. Repeat a few times until you feel your body relaxing. Deep breathing is a powerful and effective way to help ground us in the moment, and it can be done at any time and place.
• Try to catch a few “weak ties.” Weak ties is a term used to describe the people we interact with who are not friends or acquaintances, and research shows that weak ties are powerful mood boosters because they offer a sense of novelty with social engagement. Maybe there’s a friendly cashier at the hospital cafe, or a crossing guard at your child’s school who would benefit from seeing you smile and say thank you. Trying to find a few weak ties may brighten your (and their) day.
• Give yourself permission to rest. Friends and family may want to show their support by visiting, but it’s more than okay to say that you really need some downtime and a nap instead.
• Keep your eyes out for stray moments of joy and connection each day, like the nurse who can make your child laugh, or the warm hug from a friend who cares about you. These little moments add up, and they might be enough to buoy you through the day with a growing sense of wellness, even during the most challenging times.

In addition to these tips for boosting your own sense of wellness, here are some tools you can use with your child to help them manage feelings of anxiety. Having older kids draw or list out the things that make them feel anxious is often eye-opening for adults. Children with cancer are often more concerned about the logistics of medical procedures than the outcome of their diagnosis. Older kids and teens may be worried about procedures in addition to long-term outcomes and the effect cancer will have on their school life, friendships, and extracurricular activities. Doing the Inner Sirens activity, whether spoken out loud or drawn on paper, will help your child externalize their worries. (CLICK HERE to download an Inner Sirens sheet you can print.)

The Tips for Managing Medical Anxiety contains just a few of the tried and true methods for helping children get through difficult procedures. It’s always a good idea to prepare children for procedures using age-appropriate language, providing enough information to answer their questions without overwhelming them, and using resources like child life specialists and other professionals to help prepare your child. Young children will benefit from having devices and procedures shown to them and explained using stuffed animals, dolls, and sample medical equipment. (CLICK HERE to download Tips for Managing Medical Anxiety.)

Though childhood cancer is a painful journey, parents and caregivers are not alone. You can reach out to your doctor or CURE representative for help finding the support you need. If you would like to learn more about CURE’s Counseling Program, please CLICK HERE.

Written by Mary-Beth Archer from Art It Out.

Mary-Beth Archer is a licensed master social worker who provides play-based and expressive arts therapy at Art It Out. She is passionate about connecting with children and adolescents through developmentally appropriate play-based techniques. Her goal is to honor the individuality of each child and to help them develop the resilience they need to thrive. She has worked as an international children and families social worker and as a children’s trauma therapist. She has four children of her own and deeply understands the joys and challenges of parenting. Mary-Beth has additional training in Trauma-focused Cognitive Behavioral Therapy, Grief Counseling, and Sand Tray Expressive Arts

By Mariah Dantzler, MS

It is important to understand that it may be inconvenient or nearly impossible to keep a routine while a family member is undergoing cancer treatment. But we know that rhythm and routine create feelings of safety and security. The following tips may help your efforts to create a routine within your family during this time.

When a child is first diagnosed with cancer, the parents’ focus is inevitably on getting their child the care and treatment they need. This focus continues through treatment and can last months or even years. Parents also do everything they can to ensure the rest of the family is cared for. However, due to doctor’s visits, hospital stays, and inevitable emergencies, things that had been normal in family life may fall to the wayside as the child in treatment needs to take priority. In order to acknowledge the shift in priorities while protecting the rhythm of the family, consider the following:

• • Identify 3-5 lifelines. Lifelines can be close friends, family, or members within your community who will rally around you and take on any task thrown their way. These are people who will help with transportation needs, laundry, lawn care, or whatever needs to be done.

• • Create a family mission statement, crest, or logo. You can often refer to this with your family in times of stress or hurt to bond together.

• • Try to keep siblings on their schedules as much as possible. For instance, keep them on their sports teams, in their favorite activities, and allow them to continue to have play dates. Rely on your lifelines to work out logistics.

• • Dedicate a time each month to have uninterrupted family fun time.

• • Keep bedtimes the same.

• • Make a chart of things that may change during this time, also noting what will still stay the same. This allows children to anticipate and prepare for inevitable change – but still feel confident they can rely on some things to remain the same.

• • Try to honor choices and individual preferences for children in the family in the areas they can control. Allowing them to choose such things as the clothes they wear, the snack they eat, or the television show they watch increases their feelings of having some healthy control of their lives.

• • Play with your children whenever you can. Younger children rarely discuss their problems openly, but they tend to show you how they are feeling through play and activity.

• • Encourage your kids to still have fun when they can. They need to know it is still okay to experience joy even during this challenging situation.

Coping with cancer is never an easy task, especially when a child is the one who is suffering. Just remember, your whole family is in this together, and all of your children need your attention more than anything else. Cleaning and laundry can wait! Love on them, spend time with them, and give all of them hugs just because.

Mariah Dantzler, MS is an Associate Professional Counselor who works with children and their families at the Summit Counseling Center, located in Johns Creek, Georgia.

The loss of a child is so unnatural in our society that many parents feel utterly alone in their grief. Since it is such a rare occurrence, most people have no idea how to help or even engage with a bereaved parent. As part of our commitment to support families devastated by childhood cancer, CURE brings these parents together every year at our Weekend of Hope and Healing. During this weekend, families celebrate the lives of their children while attending presentations and workshops designed to assist them in their grief process.

But it is so much more than that. Each year, we hear of new ways lives have been touched as parents of different races, religion, income levels, and ages come together and realize they are not alone. Last month, parents of 51 precious children gathered together to move forward in their grief. Here is just a taste of what they discovered.

Jonathan Day lost his son, Owen, in September of 2017 and found peace during the weekend.

“Whenever I am in a normal group of people, I can stop a conversation or destroy the mood by just talking honestly about my children,” he explained. “But here, I sat in a room with people who know exactly what I went through. I got to talk about Owen without making anyone feel uncomfortable. I found that soul-settling.”

Jonathan also took comfort in hearing that other men share many of the same feelings with which he has struggled.

“The rational side of me understands that cancer was out of my control,” he said. “But the emotional part of me still holds onto the feeling that I failed as a father. My principle job was to protect Owen and I didn’t. It was very powerful to hear that there are other men dealing with that same feeling. I didn’t feel isolated when I was in that room.”

Also in attendance was Trish McKay, who lost her nine year old daughter, Kate in April of last year. She found meeting the parents and learning about their children particularly meaningful.

“I got to make some new friends, share our stories, and learn all about their children,” she said. “And that was the best part, getting to know some of Kate’s new neighbors! I am always wondering about the new things she is doing now in heaven, and for once, I know a little bit of who she is probably hanging out with! They are really cool kids. Morgan, the sassy three-year-old who loves glitter and purple. Alyssa, the sweet fourteen-year-old who danced at her school. Anna-Charles, the six-year-old fashionista who sang Meghan Trainor songs for the nurses. Kian, the two-year-old who charmed the nurses and had an afro bigger than his head.”

We recognize that everyone grieves differently and there is nothing we could ever do to completely alleviate a parent’s grief. Grief is a process and we hope the weekend helps to move people forward wherever they are in that process. When we hear comments like those of Benji Hollis, we are assured that the weekend was meaningful.

“Our daughter, Anna Charles, passed away 4 months ago after a bout with Acute Myeloid Leukemia,” Benji relayed. “Our emotions were, and still are, too raw and we weren’t quite sure if we were ready to attend Hope and Healing. But attending was the best decision we’ve made. It was helpful to meet other parents who could relate to the pain and suffering that we are enduring. It didn’t make our pain go away, but it was comforting to know that we aren’t alone. We got the chance to really get to know some of the other parents, and we look forward to staying in touch with them, as well as seeing them next year. There was definitely a healing factor to the event that we didn’t have before we arrived. We showed up with hope and left with even more.”

If you’ve experienced loss, please note the common theme running through all three parents: community. There is something significant about sharing your pain with other people who understand. Whether online or in person, we urge you to seek out others whose similar experiences can help you move forward in your grief. There is hope after loss.