Article by: Katie Sutton M.D. - Pediatric Oncologist

One of my favorite parts of being a pediatrician, and a pediatric oncologist specifically, is the
opportunity to care for my patients AND their entire families. While all families support their child in
their own ways, there are certainly common threads among families who do this incredibly well. After
more than 10 years practicing pediatric oncology (and with some sage input from my solid tumor
colleagues – Drs. Stokes and Wasilewski and Melissa Martin, NP), here are some things we have found
to be incredibly helpful in this unbelievably challenging time.

Best Ways Parents Can Help in Childhood Cancer

1. “Put on your own oxygen mask before helping others.”  It can be tempting for families to pour their hearts and souls into caring for their ill child and neglect their personal care. Maintaining your own physical and mental health is essential to be able to provide the best care for your child.

2.“Humor is the best medicine.” Although cliché, this is incredibly true. Of course, there is nothing funny about a diagnosis of childhood cancer, but if you’re willing to watch for it, there is often humor in so many situations. Maintaining perspective, giving yourself grace, and being able to see the lighter side of things will not only help you stay sane, but also bring a sense of joy and brightness to your interactions with your child. Children are incredibly perceptive and feed off the stress of their parents, seeing the humor where there is some can lighten their load.   

3. Children continue to go through stages of development despite a cancer diagnosis.       They will continue to naturally mature and test boundaries, especially if they are toddlers or teens. Although it often seems natural to give in to all their requests when they are ill, maintaining some semblance of discipline is actually incredibly important for their long-term development and behavior. Of course, we want to do things to make them more comfortable, but children benefit from routine and reasonable rules. This is how they learn how to self-regulate and be successful in the present and as adults.

Talk with your child

Keep their age in mind while sharing information. Try to keep life as normal as possible.

Family Is Important

 

9. Name a family member or friend to help coordinate the multitude of community members who
will want to help you – folks will want to bring meals, gifts, etc. and while well-meaning, it can
easily become overwhelming. Similarly, it’s OK to set boundaries and let folks know when you
need some space.

10. Work hard to maintain the other relationships within the family. Your relationship with your
spouse and especially your relationships with your other children remain just as important, if
not even more important, than before your child’s diagnosis. Save time and space for them too.
Most importantly, know that you ARE ENOUGH. Be with your child, love on them, engage with
them. At the end of the day, you are exactly what they need.

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I’m talking name brand! My son loved his new pair of shoes. It really warmed my heart as well for him to receive this gift of love straight from Chase’s vision and heart, continued by his family. It was really inspiring as well to pass on the love as much as we can. It’s really hard to capture in words how meaningful this was to our family.

Chase the Victory is based in Georgia and they have done personal deliveries. I am not sure how far they deliver but it is worth finding out. They do even more than this for families that have lost a child but I will share more about that in another blog. A great organization to support for all of the support it gives others!

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Article by: Katie Sutton, M.D. – Pediatric Oncologist

Research studies and clinical trials are how doctors learn about cancers and how to treat them.  Some studies simply collect information without guiding treatment.  For example, for many cancers there are “biology studies” or registries.  These studies allow us to learn about cancer.  Some things we might learn from this type of study include:

• How often a type of cancer occurs
• What type of patients are most commonly affected (infants vs teenagers, boys vs girls, patients of a specific race or ethnicity?)
• Information about the cancer such as what the cells look like under the microscope, common genetic changes, and common laboratory findings
• How often the tumor spreads to other sites

If your child participates in this type of study, information about them and their cancer will be collected.  For some studies, a blood or urine sample or a small leftover piece of tumor tissue may be saved or used in the laboratory.  You and your child’s healthcare team may or may not receive any information back from the researchers in this type of study.  This will be explained before you decide to participate.

What are the different stages of clinical trials?

Clinical trials help us understand how to treat cancers.  They are research studies that test new medicines or combinations of medicines.  There are different types of treatment studies called Phase 1, Phase 2, and Phase 3.  Each type of study has a different purpose.  Often before a medicine is tested in kids it goes through these steps in adults first.

Phase 1

• These are the very earliest studies for a new drug.  They involve a small number of patients.  The goal is to test the drug’s safety and to find the best dose of the medicine (usually the highest dose with acceptable side effects).  The investigators will be watching for signs that the medicine is working (“efficacy”), but this type of study is not designed to test how well the treatment works.  If the medicine is tolerable and safe it can move to Phase 2.

Phase 2

• These studies usually include more patients, although they are still small.  They use the dose of the medicine from the Phase 1 study and begin to evaluate if the medicine works.  The researchers will continue to monitor the safety of the treatment and what side effects patients have.  If the treatment is promising, it will move on to Phase 3.  

Phase 3

• These studies include the largest number of patients and are trying to prove the new medicine works to treat the cancer.  A Phase 3 study often compares the new medicine to the best known therapy (“standard of care”).  If the new medicine is found to be better, it will become the new standard of care moving forward.  Researchers continue to monitor for safety and side effects.

All phases of trials may also be trying to answer additional questions.  For example, studies may evaluate a patient’s quality of life or may test whether certain blood tests are helpful during treatment.  These will always be explained to you

For tips on how to talk with your child’s doctor about this and other issues, you can check out this blog for tips!

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It’s hard not knowing how to help or explain things to children. One of the first things I asked for were books about childhood cancer to help my kids. I developed “My Coping Skills Coloring Book for Cancer Kids and Families” to share the feelings my family experienced and what we did about to feel better. This coloring book shares how kids may feel during a cancer journey. There are detailed pictures to color. It also shares different ways to cope with negative feelings and encourages creativity. It’s also available for free by clicking the link!

Here are a few other books about childhood cancer we were given from the hospital that help siblings understand more about cancer. They gave us a way to explain to our older boys why their baby brother was in the hospital. I really liked how I Have a Question About Cancer by Arlen Gaines answered questions about the body. It’s so helpful for curious minds because it describes the in and outs of the disease, including what happens to the cells. Hi, My Name is Jack by Christina Beall-Sullivan is a book about how you feel when your brother or sister is going through cancer. It especially takes a look at negative feelings. Jamie’s Journey by Sharon Wonzy is written more like a story, describing the cancer journey. Jamie is the sister of Jordan who has cancer and is sharing her thoughts. At the end, it has room to journal your own thoughts and feelings.

What’s one of your favorite books for childhood cancer? Let me know at lexi@cancerkidsresources.com

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chedules and routines tend to go out the window after a childhood cancer diagnosis. Everyone has to find a new normal in between hospital visits, family separations, and relying on community support. Our kids feel this disruption whether they are in treatment or a sibling. For us, after losing our little Cayden, the whole family went through a whirlwind of emotions and changes that left everyone out of balance. After a while, I felt something was needed to help with falling asleep and staying asleep at night so I created this sleep chart for kids. It can (and was) used as a chore chart as well!

This sleep chart for kids works because it adds an incentive for your child to do the desired task. First, teach how to do what you are asking (deep breathing, imagination, etc). After you are confident they know what to do, but they are not motivated to do it, bring in the chart. In this case, they track how fast they fall asleep. They write down the points they earned. At the end of the week, you decide how to reward them! I used one quarter per point. You can also use dimes, free time minutes or candy. I also used this as a chore chart. It was extremely motivating for my kids! I saw them do a complete turn around immediately after starting this chart. Every day for the month wasn’t perfect and I was happy that they were honest about their points. Overall, we saw dramatic improvement! This was maintained even after the month (and my piggy bank) ran dry.

Try Sleep Chart for Kids!

If you would like a copy of the sleep chart for kids or a chore chart, please fill out the form. I will send a copy to your email. If fear is holding your child back from sleeping, or anything else, try the The Calm Down Kit from My Brave Guide. I used this to go over strategies to relax before sharing the chart. I also referred to them during nights that were tougher. The chart, combined with specific instruction and tips, worked wonders!

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Video Information about Childhood Cancer

Two YouTube channels that have great general information come from the National Cancer Institute and Icon Cancer Centre. The National Cancer Institute has a playlist called “When a Child Has Cancer” and it has information on how to keep notes when the doctor comes in, how to talk to your child and how to support your child at home. With the Icon Cancer Centre has some general information available in different languages such as Vietnamese and Bahasa. YouTube is also great for searching up specific side effects or conditions your child may have. I found this very helpful and used the information to ask my doctor questions.

Podcast Information

A great podcast if you are interested in the nitty gritty science behind childhood cancer treatments, protocols and side effects, is Understanding Childhood Cancer with Dr. Geoff. It is potentially overwhelming because it does include medical terminology. The talks can be hard to follow for a long time with many uncommon terms. It does have great answers and information if you are quick to pick things up or are willing to take the time to google terms or concepts that are not familiar. The Lighthouse Podcast shares stories from families who have gone on a cancer journey and has some informational episodes. It’s great because it’s parent to parent. It is easy to relate to and hearing about trials or resources other families tried is helpful.

Blog Information about Childhood Cancer

We at Cancer Kids Resources provide information on that is helps children and families cope on a cancer journey. We have blogs that share about resources we have experience with and have used. There is also information on how communities can provide support for people they know who have a child with cancer. Alex’s Lemonade Stand has a blog that shares information on research ideas. They also share facts about different types of cancer.

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ancer treatments can bring delays or setbacks in children’s development. Side effects will depend on what type of cancer your child has, what treatment they are on and how they respond to it. Many families report delays in cognitive and physical growth. I noticed speech was developing much slower for my toddler with cancer than it had with my older sons. He also stopped walking independently when chemotherapy began. His physical body seemed to shrink rather than grow taller and stronger.

Set a Foundation for Learning

Emotional and physical trauma (like from battling cancer) can make it hard for a child to want to learn academically. Don’t expect things to carry on exactly as if nothing is happening because something huge is. However, cushioning the blows is possible with a lot of effort and support to help remain on the track. Fred Rogers from Mr. Roger’s Neighborhood discussed six “necessities” required to be ready to learn. These include foundations such as a sense of self-worth, curiosity and daily time alone. Read more about these important foundations here to help your child grow. This is for siblings too, who may not be growing as much when so much of your energy is being poured out already. Similar to Montessori learning, this sets the stage for them to grow and you don’t have to be as hands on as you would think for them to thrive.

Get Professional Assistance

Ask about any physical, occupational or speech therapy your child may be able to receive. Doctors don’t always suggest this, but you can. I used to think my son would just re-learn these skills one day but once he started occupational and physical therapy, he made much faster progress. They can show you the cayse of the delays and tell you what to do to help those specific weaknesses. No need to work on these items just once a week either. See if you can get similar resources to use at home to keep practicing what was learned throughout the week.

Set Aside Time to Build Skills

Language was something we worked on everyday. Learning sign language was actually a huge help with building vocabulary for us. We then knew when he wanted water or was hungry, which was absolutely critical for a cancer patient. It doesn’t just teach hand signs either. By teaching sign language, we also slowed down and intentionally taught verbal language at the same time. My son used verbal words and sign at the same time after we started this.

The Treeschool Preschool and Kid Songs You Tube channel is amazing for teaching a variety of sign words from foods (we loved using this one) to scientific concepts like photosynthesis and they do it all through song! Kids get to watch other kids sign and they will love watching it over and over again until they learn it. I preferred Tree school to other signing videos because the repetition, music and images helps with learning and the videos were grouped into useful topics like foods, feelings and health. For older kids or teens looking for helpful phrases, Signed with Heart has great lessons on Instagram.

Final Takeaway

Whatever you notice is helping your children grow, try to make a habit of doing it at the same time every day or every week to really see them progress. Even during a very difficult time, your children can still grow developmentally and emotionally by setting the stage for success and then following through regularly. What helped delays during treatment for you? Share a comment or join in the daily conversations in our Cancer Kids Resources group

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