Even Kids with Cancer Just Wanna Have Fun

We all know that cancer sucks. There isn’t any better way to put it – it sucks. It’s ugly, it’s painful and it’s terrifying. It’s even worse when a child is suffering from cancer. Whether you’re a family member, a friend or a neighbor, everyone is impacted in some way when a community member is suffering.

One of my favorite things about children is their unstoppable enthusiasm. No matter their circumstances in life, they’re always optimistic and excited for any opportunity to have fun.

When children are going through treatment, they experience a wide range of physical and emotional levels of fatigue. It’s important to keep physical limitations in mind when living with cancer patients, but I would argue that it is even MORE important to make sure everyone is living their life to the fullest. 

Even Kids with Cancer Just Wanna Have Fun 

Depending on level of treatment or degree of progress, the following suggestions are things you can do as a family/community to make sure the children in your life – fighting for theirs – never lose sight of fun and excitement.

Get Active 

Countless studies have shown that physical activity brightens mood. Even more, physical activity promotes general health and wellness. You can share with a fighter (child beating/fighting cancer) that not only are they getting healthy, you’re getting healthy with them. Consider some of the following activities:

• Long family walks – preferably with a dog!
• Bike rides and the occasional bike race (friendly, of course!)
• Go to the playground/park
• Play tag in the front/back yard
• Play catch
• Soccer, anyone?

There are countless physical things you can do as a family. Find what you’re interested in and what you can participate in with your fighter.

Get Adventurous 

There’s nothing better than a good adventure to take your mind off of the mundane. Children have a special gift of imagination, rendering “adventure” as something that doesn’t have to go far. Try some of the following:

• A family boating trip
• Theme park vacation – there’s nothing like the thrill of a rollercoaster
• Camping/hiking – everyone kid like sleeping in a ten
• Road trip to “weird” places
• Backyard treasure hunts
• Day trips to the beach

Get Creative 

Children are endlessly creative – fighters ever the more so in many ways. Using imagination takes everyone out of their current circumstances (often circumstances we’d rather not think about) and into a world where anything is possible. To aid your journey to this world, try some of the following:

• Build a fort- better yet, a fort colony
• Pull out your old costumes (and maybe wardrobe) and imagine yourselves as something completely different
• Have a craft day – anything is possible with a little glue, glitter and paint
• Redecorate rooms – make your world a space adventure or an underwater oasis 

There are countless things you can do with your fighter as a family to help them still live the life of a child who isn’t suffering from cancer. This list isn’t by any  means exhaustive, and I encourage you all to share some of your favorite children’s activities. If you think hard enough you’ll notice that these aren’t things that are cancer specific – they’re child specific. Children with cancer are children first.

If you’d like to learn more about how you can become involved with cancer research or fundraising, check out some of the following sites:

St. Jude Marathon

Rally Foundation for Childhood Cancer Research

St. Baldrick’s Foundation

Alex’s Lemonade Stand

Children’s Cancer Research Fund

Pediatric Cancer Research Foundation

Kids vs. Cancer

But this only happens to other people...

My name is Christa Thieme, and I've been asked to be a guest writer, and share my story because this month is National Childhood Cancer Awareness month. Spoiler alert: my child has cancer (still strange to write). So, here is our story.

It seems to me in my short experience with motherhood that there is a strange paradox that at least goes on in my head, and somehow I think I'm not alone. As a mom, I worry about EVERYTHING! Since my son, Charlie, was born in May, everyday when my husband came home from work, I had a new "fear of the day". Whether it was tummy times, feedings, diapers, SIDS, the fears never ended. Most of my fears were incredibly irrational, but what happens when a seemingly irrational fear is right?  So, here is where the paradox occurs...you have all these fears about what could happen to your child, but when the fear actually does comes true, you think, "This only happens to other people's children" "My child can't possibly have a rare cancer".

When Charlie was 6 weeks old, I started noticing a strange yellowish glow in his right eye under certain lighting and in certain angles. After I saw the "glow" the third time, I realized this probably wasn't normal. Something (I believe God) prompted me to look at pictures I had previously taken of Charlie. Every picture taken of him with the flash on, his right eye glowed white, while his left eye glowed the typical red.

The white glow is the tumor

Being a concerned mom, I started googling what it could be, and all signs pointed to retinoblastoma. We took Charlie to his Dr. the very next day. The Dr. said his eyes looked perfect, and he would see Charlie again when he was 6 months old. The Dr. also said he saw the "red eye reflex" in both eyes, so, there was no need to worry. Scott and I left the appointment feeling somewhat reassured, but still wanted and explanation for what we were seeing. We decided to get a second opinion. My sister in law gave us the great advice, "if you are going to get a second opinion, make it count." Over the weekend, I researched Dr.'s at Riley Children's Hospital in Indianapolis, and found Dr. Plager - the Medical Director of Pediatric Ophthalmology, and a specialist in retinoblastoma. I called the following Monday, and amazingly we were able to get into their office on July 19th, just a 3 week wait time. At that appointment is when our worst fears were realized. Charlie had a fairly large mass in his right eye called retinoblastoma. Retinoblastoma is a cancerous tumor in the eye that is caused by a cell that is responsible for developing the eye that goes haywire, and never "turns off". While retinoblastoma only effects 300 children under 5 years of age every year in the U.S. and Canada, since Charlie has been diagnosed, there have been several people that our friends or family have known that have had children with the disease. The best news we received is that Charlie will survive this cancer. It is the most curable of all of the pediatric cancers, and the earlier it is caught the better the chance of saving the eye and vision. Despite the positive news of his survival, it was still a hard pill to swallow. I just remember crying while holding my 11 week old baby, and just feeling outside of my body, like this was just a really, really bad dream nightmare. This could not possibly be happening to my precious Charlie. Every time I heard my husband deliver the news to a family member on our two hour drive home, it was like another punch to the gut. We got the news on a Friday, and following week was filled with an MRI, exam under anesthesia, surgery for his central line, and round 1 of chemo.


A few lessons I've learned in my short time of being a mom:

1. Trust your gut and God's leading. If you sense something not right with your child, act on it. I would rather look foolish to my Dr. and be wrong, then not act on something, and be right.

2. Don't be afraid to get a second opinion, and make it count!

3. During well baby check-ups, when your child's Dr. is looking in their eyes with that light, they are looking for the red eye reflex. In order to truly identify the red eye reflex, the room needs to be dark, and your child's pupil large. Insist that the lights are off and blinds are drawn. When our Dr. was looking at Charlie's eyes, the room was bright, and that is probably how he missed the tumor.

4. True joy can be found in the midst of heartache. It's possible to grieve and rejoice all at the same time. I never imagined this road of suffering could offer joy, but it does. Unexplainable joy only given as a gift from God, at a time when it's need most.

Here is the latest update on our precious Charlie. Last Tuesday the 17th, we had a eye exam under anesthesia. This was the first one since he's been diagnosed, and started chemo. After our ophthalmologist examined Charlie's eyes, he came back to report his progress to us. He was stunned, and said that Charlie's tumor has shrunk significantly, and his retina has reattached. We were previously given a 0% of Charlie ever having vision in that eye or even saving the eye, and his retina was almost completely detached. We were just buying time by doing chemotherapy treatments until he was old enough to have his eye removed. Since Charlie now has a promise of saving that eye, and even vision, there is another treatment that is more of a localized chemotherapy that we will be exploring in Philadelphia in the next few weeks. We are just so thankful for all the prayers, and for God's healing hand on our Charlie. Retinas do not just "reattach" on their own, and we know it is Our Great Physician who has worked a miracle in our boy.

I pray that this would never happen to any young children that you all may know, but if it does I hope this helps to bring awareness to the disease.

This is the "glow" of the tumor that we could see in certain lighting/angles.

Bring them Joy!

I love to sew things for my family and friends but I am also always on the lookout for ways that I can help others with my talents. So far, I have yet to decide upon a charity/organization that I want to commit to long term (there are so many out there that it makes it hard form me to choose!) However, I have come across a few that look promising, both of which focus on children.

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Project Linus is an organization that makes blankets for children. They don't have to be sick, just in need of some comfort. The organization focuses on giving children any type of  homemade blanket; crocheted, knitted, fleece tied, or quilted etc. This being the case, it opens the door for many talents which is awesome! If you are interested, there are chapters all over the U.S. that you can join- definitely check out their website! Listed below are a few simple tutorials for blankets that would definitely work for this organization if you are a beginner sewer but would like to help out.


Fleece Tie Blanket
Beginning Quilting
Simple Crochet Blanket

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Another organization geared toward cheering sick kids is Conkerr Cancer. This organization started when the founders son was in the hospital with cancer and she decided to make him a pillowcase to bring something fun into his hospital room. Last year they delivered 168,730 homemade pillowcases to sick children!! That's a lot! As with Project Linus, this organization has many chapters throughout the country that you can deliver pillowcases to. I've gathered a few more tutorials for ya to check out! :)  

Burrito Pillowcase

Simple Pillowcase

Hopefully our posts this week will inspire you to bring some smiles to a sick child by sending them a handcrafted blanket or pillowcase! Just knowing that someone cares enough to make them something will brighten their day :) 

~Ruth

Little Warriors-Pediatric Cancer Awareness

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My goal as nurse has always included pediatric oncology. While I have not worked with anyone younger than 18 with cancer, pediatric cancer is still a strong passion of mine. September marks the time for pediatric cancer awareness. This week I'm so excited to focus on educating each of you about pediatric cancer. There are many ways to support research for pediatric cancer and support those children and their families who are walking through this battle.  Below is a video that outlines the basics of pediatric cancer facts and figures currently.

Very little progress has been made in research and proper treatment.  Statistics don't tell the whole story.  We have such a long way to go and I'm hoping through the blogs this week, each of you will be made more aware of how deep the need is in the pediatric cancer world.  Cancer is the leading disease cause of death in children ages 1-14.

Alex's Lemonade Stand is one of the ways you can start to make a difference.  Continue to read the blogs this week and videos posted to educate yourselves.

Let's fight for our little warriors together!