Tag Archives: Parent-to-Parent Guide

A Pathway for Parents, from Parents: Part IV

Posted on by

This month we will continue to discuss the different chapters from our digital Parent-to-Parent Guide. Following the Support Plan featured in last month’s e-newsletter is the Home Plan.

Home life can be difficult to maintain and regulate after your child has been diagnosed. Having a home plan that you and your family can implement on a daily basis can make your life feel a little less complicated.

To start, it’s important to have a medical home plan. Keep useful phone numbers, your child’s latest blood counts and medication lists on hand for when you need them. This can make emergency calls less stressful when calling the hospital or doctor. We recommend you laminate the Emergency Numbers sheet attached to the end of the Home Plan PDF so you can write on and wipe off weekly blood counts.

Although it may seem impossible, try to keep life at home as regular as possible. Encourage your child to go to school and have play dates as long as they are well enough. This goes for siblings too.

It is an unfortunate reality of childhood cancer, but typically the entire family is affected. Try to keep their lives as normal as possible as well. Ask for help from friends and family to make sure that everyone can continue with their after school activities and sports. Try to make sure that everyone knows what the weekly schedule will be – children thrive on routine. Below are ways that siblings can live a somewhat normal life.

Team up: If you are a two-parent team, make sure that the same parent isn’t always at the hospital. It’s important that siblings spend time with you to minimize feelings of neglect.

Educate the family about basic cancer facts: When every family member is well educated about cancer and cancer treatment, talking about feelings can be easier. Feelings can be confusing for siblings and it’s more difficult for them to cope at times. Be sure to stress to everyone in your family that cancer is not contagious and that nobody caused your child to have cancer. Most importantly, explain that this is nobody’s fault.

Everyone needs a role: Give siblings a role in taking care of their sick brother or sister. Whether it’s being in charge of “cheering up” the unwell sibling or making cards during hospital days, it’s important that everyone feels they are needed have defined roles.

Catch your children doing something good: Recognize, acknowledge and thank your children when they make an effort to raise their sibling’s spirits. Celebrate small victories and occasions together as a family.

Talk about feelings: Encourage your children to express their feelings, even those of jealousy or resentment toward their sick brother or sister. Explain that although it is normal to experience those feelings, their actions toward the sick sibling need to be considerate and thoughtful. The more time adults take to understand the difficulties the children are facing, the better.

Another important aspect of an effective Home Plan is nutrition. It’s likely that your child’s appetite will change during treatment. Drastic changes in cravings and appetite are normal. Your doctor may encourage you to allow your child to eat whatever appeals them. “Most of all, try not to stress too much. If all they want to eat is Pringles or Cheetos, give it to them and remember that this too shall pass,” said Natalie, parent of a pediatric cancer patient. Try not to worry too much, if your child’s weight begins to drop slightly. Your doctor will suggest different options to supplement their diet. You can help your child by encouraging them to eat when they feel like it, and slipping calories into food when they don’t!

There are so many stressors for families after a child has been diagnosed. Hopefully these tips, your Chemo Duck companion and the Home Plan document will help as you navigate through this journey.

A Pathway for Parents, from Parents: Part II

Posted on by

As promised, we are continuing to explore different chapters from our digital Parent-to-Parent Guide. Following the Communication Plan featured in last month’s e-newsletter is the Education Plan.

When educating yourself about your child’s cancer, it can be tempting to search the internet for hours on end, trying to gather every piece of information possible. It’s important to remember that the Internet can often be misleading and unreliable.

“I utilized the Internet a lot to find information but would caution parents to be careful to filter what they read. Being a nurse, I was able to do that some, but still found some information to be not entirely accurate and certainly not helpful in terms of trying to find answers for Lauren’s diagnosis,” said Tammy.

Doctors will usually provide a packet of basic information along with your child’s treatment plan. If you want to find more information about your child’s illness, ask your doctor about the websites he or she recommends. This will ensure the information you find is reliable and correct.

If there is any information that you have trouble understanding, ask questions. It’s extremely important to understand your child’s cancer and your doctor and support staff is there to answer any of your questions.

Educating your children the correct way is crucial. This is the cornerstone to helping your child through their cancer journey. Child life staff and psychologists are well-trained professionals who can help you express to your child what to expect from his or her cancer treatment. With resources such as books, toys and DVDs, your child can learn about specific cancer issues appropriately.

“As you know we were very honest with Sarah, and didn’t keep any of the “facts” from her. With the help of the child life specialists, we explained things on her level as they came. It helps to take it a piece at a time as it comes. You have to be truthful so that they will trust you,” said Dianne.

Chemo Duck is a great instrument for educating children on their own level. The following are steps outlined in the Education Plan:

  • Talk to the child life specialists
  • Take it a piece at a time from the beginning
  • Keep it age appropriate
  • Tell the truth or be as honest as you can
  • Use all of the resources available

It’s important to talk to hospital support staff about contacting your child’s school. They can assist you with paperwork to set up and develop an education plan that is specific to your child’s needs. Your child life specialist should be able to provide useful information and guidebooks for educating children with cancer.

A Pathway for Parents, from Parents

Posted on by

When you’ve found yourself in a situation that no parent or caregiver ever imagined themselves in, you may feel shocked and unable to fully comprehend the situation. The next steps to re-organizing your life may seem impossible. 

The next few monthly e-newsletters will feature different chapters from our digital Parent-to-Parent Guide.

This guide was created from a combination of experiences of many families who have faced childhood cancer. Each family has a different set of needs, emotions and circumstances. The document gives parents and caregivers the knowledge and insight into creating a pathway that best fits their personal situations.

“When we started working on the Parent-to-Parent Guide we wanted to have something that was created by many parents so that it wasn’t just one person’s opinions and experiences. The guide was a group effort,” said Lu Sipos, founder of Gabe’s Chemo Duck Program. “The goal was to create a document that would be as useful as possible to as many people as possible.”

The first three sections of the guide serve as a tool to help you digest and understand your child’s diagnosis and come to terms with your new ‘reality’. We hope you take time to digest these heartfelt notes from our own experience.

Following these sections is a Communication Plan. This plan provides insight that families can use as a guide to provide effective communication to family members and friends.

The communication plan provides information on multiple methods to communicate information and updates including phone calls, journaling, blogging and more.

Stay tuned to our monthly e-newsletters as we continue to explore the guide — and encourage others to sign up to our list who may benefit from this information!