Kids Cancer Resources

Mesothelioma

Lexi Robertson — Mon, 20 Nov 2023 21:29:44 +0000

Mesothelioma is a cancer that can affect children, although rarely. Out of the 12345 people affected, only 240 of those patients were under 40. While it’s mostly associated with exposure to asbestos, with young people, there is often not a clear connections to it. Things for parents to watch out for is lead exposure in sport fields, homes or schools made before the 1980’s. Symptoms include breathing issues and pain in the chest for cancer forming around the lungs. There is pain in the abdomen and digestive issues for cancer growing in the abdominal region. Please read more information about this. https://www.asbestos.com/mesothelioma/children-young-adults/

Even though this cancer is rare in children, being aware that it does occur is important to know, just in case. My son was diagnosed with a cancer that affects less than one in a million. You never know who you may help!

Find more resources for learning about childhood cancer at our blog, Information about Childhood Cancer.

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Best Ways Parents Help Childhood Cancer

Lexi Robertson — Sat, 14 Oct 2023 16:38:39 +0000

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.

4. Engage your child in age-appropriate conversations about their diagnosis and treatment.
Children are incredibly smart and can pick up on what is going on. If they perceive the adults
around them are not being forthright, they often assume what’s happening is EVEN WORSE than
it actually is. Utilize your oncologist and child life team to keep them informed. Additionally,
children are often very insightful and can, from a fairly early age, contribute to decisions about
their health in ways that can be wonderful and surprising.

5. Don’t threaten your child with medical interventions – don’t say things like “If you don’t behave,
you’ll get an extra shot/poke/medicine, etc.” There are medically necessary things that we have
to do to your child. Turning the unpleasant parts of treatment into a punishment makes them
both physically and emotionally painful and decreases your child’s trust in their medical team.

6. Try to make life in the hospital as normal as possible – lights on during the day with the blinds
up, continue with schoolwork or other routines, normal bedtime. This improves mood and
sleep and decreases delirium. Establish a routine for procedures, pokes, scans. Bring the same toy or blanket, watch the same shows/listen to the same music, get milkshakes after every scan – whatever feels right. It helps children to have a routine and be able to know what to expect.

7. Engage with the school liaison at the hospital and your child’s school to continue their
education. Keeping up with their peers as they are able is not only important academically but
psychologically as well. It helps maintain normalcy and a sense of progress in something other
than cancer treatment.

8. Allow your child to continue to engage with their friends. As long as their friends aren’t sick,
they can visit and play with your child. This too is important to maintain normalcy and

happiness. Additionally, it can also be traumatic to finish cancer treatment and realize all your
friends have moved on and made new relationships – some of this is inevitable but allowing
them to continue to socialize can help.

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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SuperSibs Sibling Support Program

Lexi Robertson — Fri, 14 Apr 2023 15:33:45 +0000

SuperSibs is a program with Alex’s Lemonade Stand that provides sibling support for brothers or sisters of kids with cancer. We specifically signed up for the Grief and Loss mailings after my son, Cayden, had already passed away. I found this and when I was looking online for help for my other children. So far, we have received positive notes, a magnet frame we can use on our fridge, a craft item and a really cool one where each boy had a book to fill out addressing their feelings as well as slime/putty. I am not aware of any other programs that send out items for sibling support after a loss. Cayden’s Care Packages is the only other one I know of that send items to siblings of kids with cancer.

These packages come out about every two months (3 months for grief mailings). I called about our packages because it took about 4-6 months for us to get our first one. We hadn’t gotten fully in the system. It was really easy to get someone on the phone and she reached out to whomever was needed and got us a package sent out. We are really appreciative of the care they show by thinking of our boys! I don’t know if they realize how special and unique this program is, but I do and it makes me happy too. A really cool part for the boys is just receiving a piece of mail with their name on it and getting to open it up. They look through everything with a smile.

Our family enjoys this program and yours might too! I would definitely recommend signing up or signing a friend up for this program. It lasts for two years!

Photo by cottonbro studio

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For Teens with Cancer – Free Kicks!

Lexi Robertson — Sun, 12 Mar 2023 05:54:00 +0000

Amazingly, there is an organization that provides shoes for teens who need encouragement. Chase the Victory is a non-profit organization created by a family out of love for their son Chase who started giving shoes to others while he fought cancer. Tragically, he is no longer with us so his family continues his legacy of delivering stylish sneakers and encouragement to others.

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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Expert Advice: What Are Clinical Trials?

Lexi Robertson — Thu, 16 Feb 2023 14:43:42 +0000

What is important to know about clinical trials

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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Expert Advice: What Is The Process For Being On A Clinical Trial?

Lexi Robertson — Wed, 15 Feb 2023 17:33:02 +0000

What Is The Process For Being on Clinical Trials?

Article by: Katie Sutton, Md – Pediatric Oncologist

Screening: In order to be enrolled on a clinical trial, your child’s healthcare team will do a thorough evaluation of their cancer (may be with images, labs, or biopsies – taking a sample of the tumor) as well as an evaluation of their current health overall. If they meet the criteria for study participation and your healthcare team believes the study is an appropriate option for your child, the study will be discussed with you.

Consent: All parts of the study should be thoroughly explained to you, and you should feel like you have plenty of time to ask questions. It’s your healthcare team’s job to make sure you understand everything about your child’s cancer and the study. You should understand your child’s diagnosis and prognosis. You should know what procedures are part of the study. You should be told that participation is voluntary and what alternative treatments exist. If you choose to participate (more on that later), you’ll sign a consent document – sometimes these are very long! You should always be provided with a copy. Even if you consent, you always have the right to withdraw from participation.

Enrollment: Your child will then be enrolled in the study. If it is a treatment clinical trial, there will usually be labs and other tests that have to happen when they start the therapy and then at set times throughout the study. In order for doctors to really answer the questions about whether a treatment is safe and effective, the study procedures and treatment must be given in a specific way and obtained at specific times. It may feel rigid, but it’s the only way to make sure the data is accurate and understandable. If you’re worried you might not be able to stick to the schedule, it’s important to tell your child’s healthcare team.

How to decide whether to participate in a study or clinical trial?

The decision to participate in research including clinical trials is a very personal one. Things one might consider:

How do you feel about research in general? As a doctor, I believe that research studies are how we’ve made such great progress in treating childhood cancer over the past 50 years, but sometimes due to past personal experiences or experiences of loved ones, families are uncomfortable with participation in research and THAT IS OK! Your healthcare team will support you.
Can you stick to the treatment plan and schedule of the study?
What other options exist for your child?
How common is your child’s cancer type? Is there a “standard of care?” Some cancers are so rare that we aren’t certain how to best treat them.
How is your child’s underlying health? How might the study impact their quality of life?
What Phase is the trial? A Phase 3 study of a medicine that has been already tested for safety and signs of efficacy (working) has a reasonable chance to directly impact your child and their cancer. It will be largely unknown whether a drug in a phase 1 study will work to treat your child’s cancer, but it may help other children in the future.

No Right or Wrong Way

Different families have different experiences, values, and hopes. For some, it is important to feel they have tried everything available to cure their child’s cancer. For others, their child’s quality of life is most important and so they want to pick a treatment that minimizes side effects or allows them to stay at home or avoid medicines. For some, knowing they are helping the “greater good” or kids in the future gives meaning to their child’s experience. There is no “right” or “wrong” way to approach the decision. Your child’s healthcare team should help you understand all of the options and how they align with your priorities for your child.

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Books about Childhood Cancer

Lexi Robertson — Thu, 05 Jan 2023 04:37:34 +0000

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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Sleep Chart for Kids

Lexi Robertson — Mon, 05 Dec 2022 05:11:12 +0000

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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Information about Childhood Cancer

Lexi Robertson — Wed, 09 Nov 2022 16:45:28 +0000

I know I was a parent who wanted to understand as much as I could about what was going on in my son’s body. More than anything, I wanted to know how to help him! I’ve met many parents who want to know how to support their child at home. Here is a list of YouTube channels, podcasts, and websites that can help you find information about childhood cancer.

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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Monthly Family Trips

Lexi Robertson — Wed, 02 Nov 2022 22:04:23 +0000

A Kid Again is a non-profit that has locations in all fifty states that provide fun, monthly family trips. Any family with a child affected by a life-threatening illness can apply. They are very responsive and excited to help your family make memories on the awesome “adventures”. Kentucky Kingdom, the Colts Fashion Show, and zoo tickets are just some of the family trips they provided Jamacia during her stay at a home away from home in Indianapolis. They have a monthly newsletter to keep you up to date with all the latest available adventures and special events. The staff is super friendly and helpful as well. The only downside is that if you live far away from the adventures, there is no assistance with hotels or transportation…yet! We heard that they are working on making it more accessible for everyone! Really, Jamacia couldn’t say enough about how wonderful they are and they definitely are one of our favorite resources! To find more resources, check out our social media!

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