“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 

 

 

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

Keeping Siblings Happy and Engaged During Tough Times.jpg

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.

 

Mesothelioma in Children: Childhood Cancer Awareness Month

Mesothelioma in Children: Childhood Cancer Awareness Month

Mesothelioma.net is a comprehensive source for information on mesothelioma.

September is Childhood Cancer Awareness Month and the facts are that just under 16,000 children and young adults are diagnosed with some type of cancer each year, and about a quarter of them do not recover. Mesothelioma is a very malignant, but rare cancer in adults, and it occurs even less often in children. This is generally because mesothelioma can take decades to fully develop and cause symptoms.

Causes of Mesothelioma in Young People

Asbestos exposure is almost always the root cause behind cases of mesothelioma. When adults are diagnosed with the disease, it’s usually because they had some exposure to it at an earlier point in their lives. Along with direct exposure, it’s also possible for families of asbestos-exposed workers to have secondhand exposure. This can occur when the worker comes home and has asbestos fibers on their clothes or in their hair. However, with children, it seems unlikely that asbestos exposure is the direct cause of mesothelioma. A study of 80 childhood mesothelioma cases revealed that only two children had previous asbestos exposure. Inhaled asbestos fibers typically do not cause any damage until many years down the road. Instead, researchers have found preliminary evidence that radiation exposure could be a risk factor in childhood mesothelioma cases. Other theories include the BAP1 gene and isoniazid exposure at the fetal stage.

Symptoms of Children with Mesothelioma

Some of the same symptoms that adults get with mesothelioma are also present in children. Appetite loss, weight loss, chest pain, difficulty breathing and fever are all typical symptoms. Unfortunately, these symptoms can easily represent another condition, which is one of the reasons why mesothelioma is often not diagnosed until it’s reached a critical stage. Such a diagnosis is less likely with children as it’s an even rarer disease in that age group.

Treatment of Children with Mesothelioma

Similar treatments are used for children with mesothelioma as for adults. Radiation and chemotherapy are the most common. Surgery can be more difficult on younger children especially. In cases of metastasized cancer, surgery is even less likely to be an option. Treatment is also just as difficult for children as for adults. In a review of seven childhood cases, only two of the children made it past five years after the initial diagnosis. The other cases saw no improvement after radiation and surgery. Chemotherapy allowed a few cases to stay in remission for over five years.

Mesothelioma is an appalling disease and it’s tragic for anyone to be diagnosed with it, much less a child. Research on the rare diagnosis continues to improve in hopes that future cases will be much better understood.