“Life does not stop with cancer.” One family’s journey through pediatric cancer.

 

Guest Blogger, Scott Kramer from Dancing While Cancering

Life does not stop with cancer.

But as a parent, stepping onto a pediatric oncology floor for the first time, it sure feels like it does.

Our daughter, Maddie, was diagnosed with a rare form of cancer at just two-and-a-half years old.  No warnings.  No preparation.  No predisposition.  On diagnosis, Maddie’s world – and our world – was torpedoed from a world of preschool, playtime, and Peppa Pig into an unfamiliar hospital environment…and chemo…and cancer.

And for a brief moment, life felt like it came to a crashing stop.

But as we settled Maddie into what would be her new hospital home away from home, we eventually came to a realization.  Slowly but surely, with Maddie beginning a 52-week chemotherapy protocol, we derived the strength to give her what she deserved more than anything – the ability to continue to be a kid.  So day after day, hospital stay after hospital stay, we transformed our hospital room into a home.  Curtain hooks became holders for paper disco balls.  White hospital walls were replaced with bright streamers and decorations.  A window with nothing but a medical record holder was transformed into a home for window gel clings and greeting cards.  The window sill was now a bookshelf.  Empty spaces were now occupied by plastic Disney figurines.  And the beeping of machines was drowned out by the sound of music in the air.  Sure, the technical name for our hospital was “The Ann & Robert H. Lurie Children’s Hospital of Chicago.”  But that’s not where we were anymore.  We were at “Lurie’s Place.”  A magical and special environment that we were able to cultivate for Maddie with the help of our child life team.

That transformation would come to define our journey by Maddie’s side.  A journey of holding on to life and joy in the face of all the darkness that cancer brings.  And so while the darkness returned 8.5 months after Maddie’s initial diagnoses…and while Maddie ultimately left this physical world all too soon…we still stand strongly by the ultimate lesson that Maddie gifted us:

That life does not stop with cancer.

From the moment Maddie passed, our family made a commitment to ensure that Maddie’s life would be remembered as an inspiration.  To ensure that her life would forever remain a source of good to the world around her.  And that the dark world of cancer would continue to be filled with her brightness.

As of today, on the strength of Maddie’s love, that commitment has become a reality.  Every year, thousands of parents will step onto a pediatric oncology hospital floor for the first time.  They will see those bare white walls.  They will hear the stirring sounds of unfamiliar beeping machines.  They will have their playtime replaced with chemo.  But at least some of these special patients will receive a gentle reminder from Maddie.  Because every newly diagnosed pediatric cancer patient at 15 hospitals across the country receives a “Smile Pack” courtesy of Dancing While Cancering, a 501(c)(3) nonprofit formed in Maddie’s honor.  Inside the Smile Pack, families will find some familiar transformative tools such as streamers, paper disco balls, and a wireless speaker.  Delivered by our partners in joy, our cherished child life specialists.  Carrying a message from Maddie.  A message that she reminds us day in and day out.

That life does not stop with cancer.

If you’d like to learn more about Maddie’s inspirational journey, check out her memoir, Maddie’s Miracles, available on Amazon.  Written by Maddie’s dad, Maddie’s Miracles is also a source of light and love – with 100% of the royalties donated to cancer charities.

We will be giving away a copy of Maddie’s Miracles to one lucky winner.

Choose one or more ways to enter:

1. Sign up for email notifications at ChildLifeMommy.comand leave a comment below.

2. Facebook: Follow Child Life Mommyand tag a friend.

3. Facebook: Follow @Dancingwhilecancering and leave a comment about the giveaway.

4. Instagram: Follow @ChildLifeMommyand @Dancingwhilecancering, tag a friend in the post.

5. Twitter: Follow, Like and RT the post to @ChildLifeMommy and@DWC_BringJoy.

Good Luck, the winner will be chosen on 4/5/20.

Related Posts:

Podcast: Scott’s Story- A Daughter with a Rare Cancerous Tumor 

 

 

Kids at Home? Staying Sane Through the Power of Play

Guest Blogger, Deb Vilas. Originally posted at PediaPlay

School Closings

During this time of the coronavirus, school closings are causing tremendous stress for all parents, especially working parents whose child care options are limited or nonexistent. While your children are at home, providing a wide range of play activities will help ratchet down anxiety, promote healthy expression of feelings, and it might even be a unique opportunity to strengthen your relationship and attachment to one another. As a child life specialist, I have spent my career in hospitals helping children and families play as part of the family-centered care approach to healing. Today, I am going to share some ideas for keeping your children calm, happy, and occupied.

Loose Parts

Some of the best “toys” are what we call “loose parts”, stuff you have lying around the house or in your recycle bin. Kids love to create, and cardboard boxes, toilet paper rolls, string, wood, paper, popsicle sticks, cotton balls, yarn, chopsticks, tape, glue, cloth, q-tips, pipe cleaners, art materials, any recyclable item, shoe boxes ….etc. are all inventions waiting to be imagined. You can put out materials without any direction, or you can give your children prompts such as “Make your own 3-D version of a corona virus”, or “Build something that would make this world a better place, either reality-based or make believe.” Once they get started, projects may morph into other ideas.

Kids Need to Move Their Bodies

Kids need to move their bodies every day. If you are able to take them outside to run, climb, and jump, that is terrific. But if you are stuck inside, children can do jumping jacks, push ups against a wall, with feet or hands, and other exercises to release pent up energy. Make exercise a part of their daily routine, and everyone will be the better for it.

Playing with Grandparents

Many of you may be concerned about your parents, and checking in with them via video chat can be good for the whole family. Play maps (see article within this publication) are a great connecting activity to do via video chat that can spark many shared stories. All you need is plain paper, pens, pencils, crayons or markers, and your childhood memories. Draw a map of your indoor play space from childhood, and then your outdoor play space, filling in all the play activities you recall from your childhood years. Have your child do the same, and your parent too. Maybe play some favorite music in the background while you all draw. Then share all the stories behind your drawings. You might be surprised what you have in common, and what play activities you’ve never talked about. Consider video taping the activity to save these wonderful memories.

Indoor Forts

Kids love to build forts and hide in them. A bedsheet or table cloth can turn furniture into a fort. Children can have a picnic, read, play, and even sleep in their fort for a change in routine.

Medical Play

Kids young and old enjoy playing about things they are trying to understand or are worried about. If you have a medical play kit at home, bring it out with some dolls or stuffed animals, and encourage your children to create a doctor’s office or a vet clinic. If you can, add real life medical items, like gauze, pill bottles, syringes. Give them a pencil and pad to write down doctor notes on. This activity gives children the chance to ask questions about the coronavirus. Try your best to answer questions honestly and simply. Try not to direct or interrupt their play, as they know exactly what they need to play out.

Sensory Play

Sensory play is great for toddlers and preschoolers, but it is also soothing for older kids and adults. It can be as simple as a bin of soapy water with straws, Legos, and bath toys. Shaving cream, sand, making homemade play dough, and finger painting with pudding (and then eating it) are a few other examples of sensory play. Pinterest has many additional ideas and instructions.

Old Fashioned Games

Perhaps you will get some ideas from the play map activity from your parents. There are a ton of old fashioned games that children have played over the generations that don’t need props or toys. Hide and Seek, clapping games, pretend play, guessing games, and charades are some examples. If you play these games with your children, allow them to take the lead as much as possible. They may make up their own rules, which is great for their imagination.

String Games

All you need is some string or shoelaces, and you can teach your child some great string games and stories. There is a ton to learn on youtube, and maybe your parents have a few up their sleeves as well.

Worry Dolls

Use loose parts and art materials to create personal worry dolls. Children can tell these dolls their worries and the dolls will do the worrying while you child sleeps, so that s/he doesn’t have to. another activity to release worries involves making a playdough volcano, writing down worries on scraps of paper, placing them inside the volcano, and exploding it. There are plenty of volcano recipes on the internet.

Board Games

Many of us have great childhood memories of playing board games and card games. If you have a few decks of cards, your kids can use youtube to learn a new (old) game such as Spit, War, Canasta or Pinochle. Building upon the loose parts concept, consider having your kids create their own board game and then play it with one another. The cooperative spirit of making a game can bolster sibling connection.

Minimize Screen time

The last thought I want to leave with you is this. This time, although stressful, may have a silver lining. It may be the jumpstart your kids need to get off of their devices, and into their imaginations. Encourage healthy limits on the amount of screen time your youngsters partake in. Involve them in your daily chores of cooking and cleaning, and play, play, play!

When Your Parents Divorce A kid-to-kid guide to dealing with divorce

Guest Blogger, Kimberly King 

Divorce can be a traumatic experience for children, but parents can do a lot to help ease stress and uncertainty. When Your Parents Divorce is a useful tool that parents can use to help children with questions and concerns that arise during this challenging and stressful time. Told from a child’s perspective, using clear and kid-friendly language, When Your Parents Divorce will help you and your children adjust to divorce in a positive, cooperative, and supportive way. The book aims to ease discord and confusion in the family and prevent Parent Alienation. A must-read for parents and kids.

  • One of a kind, a unique book created for kids and shared in a kids voice. Told from a child’s perspective, based on a real-life kid story Full of real-life kid scenarios that your child encounter as they adjust to your divorce
  • Presented in kid language that provides comfort on a tough topic.
  • Bibliotherapy, helping kids talk about their feelings by using books, is an effective therapeutic way to help kids cope with difficult emotions

Using a simple, direct, comforting approach that doesn’t dumb down the issues involved, as well as an easy-to-use system to help kids engage in open conversations with parents. When Your Parents Divorce covers a variety of topics, including:

Clarification of the terms and definitions involved in separation and divorce.

  • Supportive talking points for parents and children
  • Helping kids realize each parent’s value and worth.
  • Teaches kids that they are not alone.
  • Kids learn to be aware and express their feelings.
  • Explains that divorce is never their fault.
  • The story encourages family collaboration and cooperation.
  • Identifies some everyday worries, problems, and issues kids may experience as they adjust to the new family situation.
  • Stresses the way families can get along in a positive way when they work together
About the Author: 

Kimberly King left her traditional job as a kindergarten teacher to write books for children on difficult and often emotional topics. Kimberly King is a child-development professional, certified early-childhood educator, and darkness2light.org sexual abuse prevention Stewards of Children facilitator. She holds a Bachelor of Science degree in early childhood development and family studies from the University of Maine and a Master of Science degree in early childhood education. She is the author of, I Said No!, the best-selling children’s book about sexual-abuse prevention. King is the author of three kid-to-kid guides:

King lives with her family in Connecticut and is available for media trainings, interviews, school visits, and author signings.