Tips from The National Children’s Cancer Society: Keeping Siblings Happy and Engaged During Tough Times

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This is a guest post written by The National Children’s Cancer Society (NCCS). The NCCS is a not-for-profit organization providing support to families making their way through the daunting world of childhood cancer and survivorship.

When a family is going through a tough time, such as when a child is sick, a large amount of attention is focused on that child. This family focus can leave their healthy siblings feeling angry, guilty, isolated, sad and anxious.

However, research from the Journal of Pediatric Oncology reveals that when children possess a positive personal outlook on life, they’re likely to remain optimistic and have an easier time coping. Parents can help build this positivity through hands-on activities that give their healthy children a chance to process feelings and connect with their families during an emotional time.

With more than 30 years of experience serving nearly 43,000 children facing childhood cancer, the NCCS would like to share age-specific tips and activities to help keep healthy siblings happy and engaged during trying times. While these tips and activities may be designed for families with children that have cancer, many can be applied to families facing other hardships such as a death in the family or parental illness.

Birth to 3 years old:

  • Technology can help you feel connected while apart, use Facetime or record stories and lullabies to soothe the baby while he/she is with a babysitter or in a new environment.
  • Since transitions can take some time, it’s best not to attempt toilet training or major developmental tasks until there is a consistent routine in place.
  • Suggested activity:
    • Play with playdough – Kneading dough is an opportunity to talk while playing, work out tensions and have fun with the baby. Scented playdough can enhance relaxation.

3-5 years old:

  • Even if toddlers revert to behaviors they have grown out of, including having accidents or throwing tantrums, continue implementing standards and discipline as before to provide a sense of security and routine.
  • Give concise explanations of what their sibling or family member is going through to allow them to feel informed and connected to what’s going on.
  • Suggested activity:
    • Pop cancer bubbles – Have children blow bubbles and pretend to be a chemo shark or radiation monster who pops bubbles to kill cancer cells. This will give them relief while developing a small understanding of treatments.

6-12 years old:

  • If possible, let children decide for themselves who will be helping care for them when parents are traveling or absent overnight.
  • Explain that all feelings experienced are okay and reassure them that even their tough feelings are alright too.
  • Suggested activity:
    • Make colorful paper chains – Help children write feeling words on strips of construction paper and discuss what they mean, such as love, life, hope and courage. Let kids decide what order they want their strips in and where they want to hang their finished product.

13-18 years old:

  • Arrange a tour of the hospital or clinic with their brother/sister and encourage them to ask questions of the medical team.
  • Give teens abundant permission to talk about themselves, as they’re probably receiving a lot of questions about their siblings.
  • Suggested activity:
    • Trade something special – When away or busy, trade something personal or special with each other. This will help teens feel supported and connected to their family members through hard times.

About The National Children’s Cancer Society (NCCS)

The National Children’s Cancer Society (NCCS), headquartered in St. Louis, Missouri, is a not-for-profit organization providing support to families making their way through the daunting world of childhood cancer and survivorship. With over 30 years of experience serving nearly 43,000 children, the NCCS is able to take a “no matter what” approach to help families stay strong, stay positive and stay together. The NCCS has been recognized as a Better Business Bureau Accredited Charity and earned a GuideStar Platinum Seal of Transparency. For more information call 314-241-1600, visit theNCCS.org, or on Facebook and Twitter.

 

What It’s Like When Someone You Love Has Terminal Cancer

Guest Blogger, Kimberly Kow, originally published on Scary Mommy

What is it like when someone you love has terminal cancer?

It is one big mindfuck.

The slow agonizing pain of anticipatory grief can chip away at one’s soul and wear you down like waves churning rocks into sand. Anticipatory grief is the thief that steals joy from the present. It is hard to shake this thief. Seemingly happy moments shift reluctantly and without warning into a bittersweet mess of emotions.

You want to spend every day living for each moment. But instead, you spend most days gripped in fear, panic, helplessness, and all the emotions in between. Remaining grateful for what you do have helps. But it doesn’t take away from the fact that you are straddling the unknown and about to barrel toward a place you do not want to be. The longing for more of these moments, for time, is fierce and unrelenting.

I’m a child life specialist. My job is to help other families through trauma and loss. I have sat across from hundreds of parents and siblings and helped to deliver bad news. Offering encouragement and helping families find peace is what I’m trained to do. But it does not make my reality any easier.

In some ways, it makes it harder because I know what to expect. I know that the depth of my pain hasn’t been reached yet. The thing is, it’s really hard to live when you are dying. This is as true for the caretaker as it is for the patient. Because truly living in the moment requires you to acknowledge that there may not be another moment and that you can’t get this time back.

But that is a lot of pressure to squeeze beauty out of every moment when all your loved one wants is for things to stay normal and to pretend that this fucked up thing that is cancer doesn’t exist. But it does. And there’s no hiding it when you want to make plans but you can’t predict how your loved one will feel that day.

On a good day, you want to shoot for the moon and live it up. On a bad day, the littlest things become seemingly impossible. And then comes the mental scolding of why did we get so ahead of ourselves. We “should have known everything can change on a dime.” We kick ourselves for planning too far in advance.

But how can we not when we need things to look forward to? We need that goalpost to be set as high as possible because those are the moments that keep us going. Those are the memories we crave and long for. We risk utter disappointment for the chance of a brief reprieve from reality.

Imagine all the things we want to do in life suddenly having to be pushed up on to an accelerated timeline. Now or never.

Some people romanticize the idea of living for the moment, but there is nothing romantic about it when you are 37 years old with metastatic breast cancer and have no other choice. I want to give my sister the world. I want to cram a lifetime of memories into months. But the constraints of every day responsibilities and realities make this an uphill battle. It doesn’t mean I’ll stop trying. But it does mean there are limits. And that is just one of the many major frustrations of living on borrowed time.

Another is the guilt. It feels selfish taking these trips together and hoarding all these memories when other family members deserve this time too. But I can’t plan for everyone else. The pressure to pretend to feel good when she doesn’t is exhausting. I try to make it clear to my sister that with me she doesn’t have to pretend. She still does so out of her own stubbornness and attempt to protect me. But to a lesser extent.

There are no words that need to be said when she is not feeling well. I always know, and I’m strong enough to hold that information. I don’t need things sugarcoated because I know too much already about what this beast is doing to her body. Sugarcoating things makes me angry. It’s okay for her to say she feels like shit. It should be acknowledged. She should be allowed to live truthfully and to say what we are all thinking. This just fucking sucks.

People often refer to metastatic cancer as mets. But mets sounds cute and sweet. Metastatic is anything but that. It’s a fucking cowardly beast that would be invisible if not for the giant tumor. I want to wrestle it out of my sister. Strangle it to the ground. But I can’t. I keep going back to the same thought of why can’t she just take half of my liver? Like a lizard tail, the liver is supposed to regenerate. I know it’s not that easy, but I wish it were as simple as me just giving part of my body to make hers better.

I have googled article after article trying desperately to find some obscure cure her doctor may not have heard of. Hours looking into that one Facebook video of the study with cancer cells that shrunk in hours! I have bought all the teas and expensive mushrooms I can find on the Internet. You know you’re desperate when you have a $50 bag of dried mushrooms in your Amazon cart.

For now, I know my sister will rally like she always does and face the next day with a bravery that is unworldly and usually only seen in movies. Random acts of kindness from friends and strangers will continue to surprise us and keep us afloat as she fights to navigate the unimaginable. And the almost daily certainty of the absurd will make us laugh. People who say the absolutely wrong thing. A comedy of errors with insurance, scans, a flurry of disability paperwork, medical records, and a wide spectrum of well-meaning people to complete assholes.

It would almost be funny if it weren’t so sad.

Related Articles:

You’re Not Alone; Sisters Fighting Breast Cancer Together 

My Family Is Stronger Today Because Of Our Journey With Cancer

My Family Is Stronger Today Because Of Our Journey With Cancer

Guest Blogger, Nat Miller

Sunday, June 3 is National Cancer Survivors Day, a day of celebration for cancer survivors and a day of hope for those currently fighting cancer, like my daughter Hazel. In honor of National Cancer Survivors Day, I’m inspired to share my family’s story with you. I hope that my words provide some solace to families hurting, hope to those who are afraid and light to those who are trapped in the midst of darkness.

I have started this narrative numerous times, each an attempt to say what I felt needed to be said about my family’s journey with cancer. All of those attempts before now focused on the “cancer part,” the hospital visits, the medications, the ups and downs of testing, side effects, traveling, and mainly despair.

Wrongly, I felt that to give my perspective as a father, I had to walk my readers through the everyday heartache that is dealing with cancer. But then I realized that by doing so, I would be giving cancer too much power, too much credit for what it is. Instead of telling a story about cancer, today I want to tell a story about people, love, and support.

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Hazel is the youngest of my four children and was 2 years old when diagnosed with Acute Lymphoblastic Leukemia. She is now 3 years old and has entered the “Maintenance Phase” of her treatment which will last until she turns 5 years old in 2020. The past year has been tough, the toughest of my life in fact. Since that fateful day in April 2017 when Hazel was diagnosed, I have shed many tears; mourning the pain and heartache that Hazel has been forced to endure in such a short time on this earth. In the days following diagnosis, I lamented that it should be me and not her. I was so angry that my youngest, most vulnerable child was being attacked by an invisible villain that I had no control over, that I could not kill.

I would love to say that I dealt with the events of this past year with some sort of grace, a type of dignity, but alas, I do not feel that was the case. It was hard, so excruciatingly hard, that we simply got through it however we could. My family of six was often split up, some of us attending chemo visits in the hospital two hours away, some of us trying to maintain a normal life in our hometown of Marietta, Ohio. Events were missed, vacations foregone, and birthdays moved. This experience changed our life in almost every way possible, but it never broke us, never destroyed our bond.

My family is stronger today because of our journey with cancer, and here is why: people. The people that we have met during this process have been unforeseen blessings, providing comfort, support, love, and respect at every turn. We have met people from all walks of life that helped provide the stilts to prop my family up as we struggled to manage our situation. We have never been made to feel needy when we asked for help, nor weak when we stumbled.

Some of those most cherished people have been representatives from The National Children’s Cancer Society (NCCS). During the early days of Hazel’s treatment, as time off work stretched longer and hospital stays were more prevalent, the NCCS stepped in to provide financial support to meet a specific, direct need for my family. As we progressed through treatment, the NCCS followed up with us, providing informational resources as we transitioned into new treatment phases. Finally, as we continue to walk this uncertain path into the future, the NCCS has been quick to provide emotional and ongoing support for all of our family members.

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The story that I want to be told today is not about cancer or even about my family specifically, but is about the people that fight cancer, and the people that help others fight cancer. They are as courageous as the patients themselves, waking up each day with a goal to help families in certain peril. These individuals understand all of the toughest aspects of dealing with cancer and use their resources to help keep families like mine afloat in the tumultuous sea of life. The impact the NCCS has had on my family has been profound and will shape our life from now until we leave this earth. For them, we are eternally grateful and forever in debt.

– Nat Miller, father of Hazel Miller

Click here to learn more about the support from The National Children’s Cancer Society