Raising Awareness Month: Pediatric Cancer Awareness

I love what the ice bucket challenge did. I love that it brought so much awareness to a disease that has brought so much heartache to so many people. I did the challenge, but here is my challenge to all of you. Choose a disease or disorder every month to learn more about and even potentially donate to for the next year. If we all chose to do this, I think we would be a lot more aware and hopefully financially we as a whole could propel medicine and research along faster.

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We live in a world that is full of brokenness, hurt, and trials. 1 in 285 children before the age of 20 will be diagnosed with cancer (1). While less children than adults are diagnosed with cancer on average a child loses 71 years of life compared to an adult who loses 17 years of life (1). Worldwide on average each day 720 children are diagnosed with cancer and 250 die from cancer EACH day (2). In the U.S. childhood cancers is the leading cause of death by disease in those under the age of 15.. the LEADING cause (2). The average age of death for those kids who do die of cancer is EIGHT years old (3). And for those 80% that do survive, 2/3 of them will have chronic conditions related to treatment as a result (2). Chemo sucks. I know I give it 5 days a week and I help patients manage through symptoms 5 days a week.

So friends, let us ban together to help fund research. To help fund support for these children going through treatment. To help find better treatments that cause less side effects and work even better. Let’s work together to find treatment so less kids are doing early. Let’s fight for these kids and their parents. Let’s be aware of what far too many little ones and their families are dealing with on a daily basis. Because it isn’t just about survival statistics, but it is about quality of life and longevity after the 5 year survival mark. Together we can make a difference. Together we can help take back some of those years being lost by a war against cancer

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Resources:

1. http://curechildhoodcancer.ning.com/page/facts-1

2. http://www.alexslemonade.org/childhood-cancer-facts

3. http://www.kidsvcancer.org/facts/

Why childhood cancer awareness month matters…

This month is Childhood Cancer Awareness month. It’s a cause that hits really close to home to me because it hit my home as a first time new mom. I wrote about our experiences last September. At that point we were just 2 months into our son, Charlie’s, treatment. If you’d like feel free to read my blog post from last year, but I will briefly summarize our son’s diagnosis.

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My son was born May 5, 2013 – healthy, normal, happy baby boy. At 6 weeks old I started noticing a strange glow in his eye in certain lighting. It was just a flash, and very hard to replicate. We also noticed a strange glow in his eye while taking pictures of him with the flash on. It glowed white instead of the normal red. Call it mother’s intuition, the prodding of the Holy Spirit (I think both), but we made an appointment with a specialist at Riley Children’s hospital. July 19th, 2013 was the day our world was turned upside down. We were told that our 11 week old baby had Retinoblastoma (a rare eye cancer… read more about by clicking). A level D tumor in his right eye (second to the largest). Typically they would have removed his eye, but they felt he was too young. Our only other option was chemo. Hearing the news, and wondering what the next few months would hold for our son was the most gut-wrenching pain I’ve ever experienced. The next week was filled with an MRI, an eye exam under anesthesia, central line placement, and two days of chemo. We were also given a crash course on central line care which was incredibly intense, especially for two people with no medical background. If a central line is not cared for properly, it could cause a fatal infection for someone especially with virtually no immune system. So, that’s where my last post left off. We were new to this cancer parent club, but beginning to get our feet under us.

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At the end of September, Charlie had his first exam under anesthesia since beginning treatment. At our last visit we were told Charlie had a 0% chance of keeping his eye, his retina had fully detached, and therefore he wouldn’t ever have vision in that eye. We were just buying time to keep the cancer at bay until he was old enough to have his eye removed. Well, the exam in September told a much different story. His tumor had shrunk dramatically and his retina spontaneously reattached!!! This was an amazing miracle! There is no medical explanation for retina reattachment. The only explanation I have is God. This was incredible news, but we still had a long road ahead of us.

Our next hurdle was genetic testing. There are two kinds of retinoblastoma: unilateral (one eye/typically not genetic) and bilateral (both eyes/genetic/more aggressive/possibility of sarcoma type cancers in the future). We had the genetic testing done, and it came back that he does not carry the RB1 gene! Such another amazing praise and another huge sigh of relief!

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The next few months brought a total of 6 rounds of chemo, 11 blood/platelet transfusions, and 73 – three hour long infusions pumped through his central line at home. Amazingly Charlie never had any fevers, infections or colds. That is pretty much unheard of when someone is receiving chemo. Charlie also had very minimal side-effects of from the chemo, just threw up a handful of times. God was really protecting this little guy. The time went by fairly fast even though we were homebound. Scott, my husband, would still go to work and the grocery store for us, but that was it except for Dr.’s appointments. Charlie and I never left the house for 6 months. People have asked, “How could you do that?” “That must have been so hard”. It was, but it wasn’t. When you are faced with the alternative that your son could be admitted to the hospital with a life-threatening infection or cold, suddenly Target runs become less important. It was worth it to protect him. I also can say for the most part, our time was joyful. We did have moments of tears, anxieties, frustrations, and self-pity, but I can honestly say it was very minimal. Again, the only explanation I have is God. How could one be joyful in a time so dark as this?

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We finished our last day of chemo December 11th – what a great Christmas gift! In January we had our baseline follow-up with another exam under anesthesia, and everything looked great. We were given the green light to start patching his good eye in order to see what kind of vision, if any, was in his bad eye. You see, even though his retina reattached, his tumor was so large that based on what the Dr. saw he thought it still could have damaged his vision. I had high hopes that he would see to of that eye immediately, and things would be great. This unfortunately was not the case. It was very difficult to watch Charlie’s happy demeanor change to nothingness every time we patched him. He would hang his head, and sometimes fall asleep. He would not respond at all to Scott or I visually and that was pretty heartbreaking. It seemed cruel to me to be putting him through this, but we knew we had to stay with it. We began to pray. Jesus healed the blind in the Bible, right? God has brought Charlie this far, so why wouldn’t he continue to work in his little life? So we continued to patch, but I needed an attitude adjustment with it. Patching was something I dreaded because Charlie didn’t enjoy it, and it’s unbelievably difficult to keep an eight month old engaged for a couple hours a day when he can’t see. I tried new things everyday to stimulate his other senses, but I was definitely running out of ideas. I was reading one morning in my devotional, “Jesus Calling” (highly recommend!) and it challenged me to thank God for the very things that were troubling me. Patching immediately came to mind! It hit me that I really should be thankful for the very opportunity to patch Charlie’s eye – just 6 months ago we were given a 0% chance of saving his eye. Six months ago the idea and patching and the possibility of having vision let alone an eye were out of the question. How sad that I quickly forgot how far God has brought us. This “light-bulb” from God changed my perspective, even though patching still was a challenge. A few days later while patched Charlie smiled at Scott’s silent silly faces! He then reached for a remote! This was another complete miracle! For over two weeks Charlie was blind in that eye, and now he could see! To this day we still patch, and I can’t say it’s an enjoyable experience. Charlie now can rip the patch off in less than a second, so he requires a very close eye while patching. However, he will “play” golf while patched! It’s truly, truly a miracle, and we are indescribably grateful!


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February brought another eye exam under anesthesia, but this time a new small tumor popped up. Thankfully, the tumor was small enough that the Dr. could take care of it with cryotherapy, but this was a discouraging set back. You see the last day of Charlie’s chemo back in December I kind of thought cancer was now in the past – not something that we were still fighting. How naive. He had an eye exam in March and May which both came back clear, and another one in July which came back with another tumor in the peripheral. Once again it was small enough to have cryotherapy done, but still discouraging. We went back on September 2nd for another exam and it was clear! We were so relieved and grateful for the good news. We will go back yet again in November, and be praying for clear results!

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So, as you can see from our story that while it has been a really difficult time, we also have SO much to be grateful for. You see retinoblastoma has the highest survival rate (95-99%) of all pediatric cancers. A lot of kids lose their eye(s), but most survive. While at times I worried about whether or not Charlie would survive this – we had hope, a lot of it. When our Dr. diagnosed Charlie he told us he would survive. I can’t say I believed him 100%, but it was hope – something that a lot of other parents of children with cancer don’t have. Also, even though we’ve had two new tumors pop up, we’ve been so fortunate that they have all been in the peripheral so they have not effected his vision. Almost all of a persons vision comes from a small central focal point in the eye. If a tumor would have popped up there with cryotherapy the vision that he does have in that eye would have been destroyed. So while we have received bad news along the way, it’s always been the best of the bad.

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Like I said, a lot of kids and families are not as fortunate as we are. A lot of other children’s stories don’t sound like Charlie’s. Their treatments are a lot more aggressive and a lot longer. Yes, a lot of kids survive childhood cancer, but a lot don’t. I’ve seen it first hand. There was a little 7 year old girl that we have seen, and got the honor of meeting at several pediatric cancer events. The latest event I saw her at was at a camp for kids with cancer (Camp Watcha Wanna Do). She was in a wheelchair, incredibly frail, bald, and had hearing aides (some chemo drugs can permanently damage hearing). It was an 80 degree day and she was bundled up in a quilt. She was sweet and definitely enjoying herself at camp.

Two weeks after camp I got word that she had passed. During this time I learned that this sweet girl had been battling cancer for 6 years-her whole life. A short while later I called our pediatric oncology unit in Fort Wayne to let them know of Charlie’s newest tumor. While speaking to the nurse, we both sobbed on the phone. They as an office had 2 patients of theirs that had died that month and the nurse said she didn’t know how much longer she’d be able to continue working there, and trust me this nurse has a gift! She was angry – understandably. So was I. These kids deserve better – they deserve to be kids. And yes, like I said, a lot of kids survive, but not without battle wounds – a lot of retinoblastoma kids lose one or both eyes. I’ve gotten to know a little 7 year old Amish boy who lost part of his leg due to a bone infection while he was receiving treatment for Leukemia, which by the way for boys is 3 years long! And that is just the physical effects (which there are many more) not to mention the emotional and intellectual effects that these harsh treatments that will last the rest of their lives. This is why supporting/funding research for pediatric cancer is so important. It matters. For example, just a few years ago neuroblastoma was a death sentence. Now, kids are surviving, and it’s because of research. I admit I was ignorant to childhood cancer prior to Charlie’s diagnosis. I would turn the channel when a St. Jude’s commercials came on because it made me too sad. But their sadness is reality, and they need people to come along side of them and fight because they can’t do it alone. Below are some links for donating if you feel led to do so. Thanks for reading our story, and we welcome prayers for our little hero.

Alex’s Lemonade Stand

Tough Conversations; Through the eyes of an oncology nurse

I’m an oncology nurse. I knew when I signed up for the job that it was a tough one and that tough conversations was part of it. But some weeks the tough conversations are never ending. And sometimes the tough conversations rip my heart to shreds. And sometimes I want to hop in my car and drive for miles. Or put on my running shoes and run until it makes sense. But here is the thing; it won’t make sense. Cancer doesn’t make sense.

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Some weeks cancer pisses me off more than other weeks and this week was one of those. On Friday I opened my e-mail and had two e-mails of bad news from patient’s loved ones. I’ve said it often, but I think we need a punching bag in our office. A place for both employees and patients to take out some anger. And let me tell you, this Friday morning I needed it. 

Why? I sat there and asked… why? But here is the thing, I’m the nurse. I’m the supporter. And I had to get myself together and call these loved ones. I knew the status of one of these patients from the e-mail, but called to get the plan of care. The news kept being worse, but this patient’s loved one was so gracious. They were in shock and upset, but they graciously took the news and were taking the bull by the horns and ready to fight. And at the end of the conversation you want to know what this patient’s loved one said to me? Thank you. In the middle of their battle when all I can be is the communicator and the emotional support; when I have nothing else left that I can do at that moment and they are facing a huge new unexpected battle she stops and thanks ME. 

After this phone call I went back to speak with the PA. I told her I wasn’t ready to make the next phone call. After the news of the first two patients I was spent. I went to make the phone call anyways, because it needed to be done. My heart broke. It isn’t the first time and won’t be the last time that a patient’s loved one asks me to tell them what is really going on. What they really need to prepare for. But every time I have these conversations it hurts the same. 

I had this conversation twice that day with two different loved ones. And here is the thing that struck me yet again… both of them stopped and thanked me. After the phone calls were concluded and the rest of my day was wrapped up I got in my car and I sat stunned. It was a tough week and a really tough day, but yet again I was reminded why I do my job. Because even when I have very little I can do for patients and their families and even when I have to be the truth bearer, they teach me so many things.

The tough conversations will continue to come throughout my career. The days of needing a punching bag will continue. The days of wanting to run as fast and hard as I can until something makes sense will still occur. But this is what I was created to do at this time in my life. And those “thank yous” make it worth it. 

So to my patients and their loved ones. Thank you. Thank you for all you teach me through the tough conversations. Thank you for your thank yous. 

As we step into pediatric cancer awareness month let us all learn more about the tough conversations so many families are going through. And let us learn how we can help them as they walk through these tough battles. 

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! 🙂  




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!

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