Journal

Journal entry by Erin Cimpl Nahorny

Precious boy, done with testing. He handled it like a trooper, of course. He needed a bit of morphine when he woke up from sedation, because the bone marrow biopsies can be somewhat painful. As you can see he's resting peacefully now. :) Thank you for your prayers. Dr. Cohn will be in touch as soon as she hears from Radiology about the scans. Bone marrow biopsies will take a few days for results.

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Journal entry by Erin Cimpl Nahorny

Parade was a huge success yesterday! We had several families whose children are in treatment or post-treatment wear their own shirts and walk with Sammy's Superheroes in the parade. You can see lots of pics on our Facebook page! We are in Chicago this week for scans, bone marrow biopsies and generally re-staging. Please pray for great results and that Sammy body is continuing to respond to treatment.

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Journal entry by Erin Cimpl Nahorny

Parade was a huge success yesterday! We had several families whose children are in treatment or post-treatment wear their own shirts and walk with Sammy's Superheroes in the parade. You can see lots of pics on our Facebook page! We are in Chicago this week for scans, bone marrow biopsies and generally re-staging. Please pray for great results and that Sammy body is continuing to respond to treatment.

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Journal entry by Erin Cimpl Nahorny

Check out Binkeez for Comfort's newest inspiration... The Sam Blanket!! 

This is an amazing organization we became aware of in Boston. You can request a blanket for someone who is fighting a big battle or you can purchase one at their online boutique. Each blanket you purchase funds 4 blankets that are donated to children in need of comfort and love. What a beautiful mission.

We are so honored that they asked for Sammy to be an inspiration for one of their blankets. 

www.binkeezforcomfort.org

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Journal entry by Erin Cimpl Nahorny

Calling ALL Sammy's Superheroes!!!

We will be walking in the Columbus Days parade on August 18th at 3:00pm. We would love to have as many of you as possible walk with us!!

Wear your blue or gold Sammy's Superheroes t-shirt, bring some candy to hand out and meet us in the NPPD parking lot at 2:30! 

We would like a count of how many will be walking, so please email us how many will be attending, erin@sammyssuperheroes.org.

We are so excited to share with you all, that we will have several of Sammy's fighter friends, who are in the process of treatment or post-treatment for cancer, who will be riding on the float with our Sammy.

We believe this will be a great opportunity to raise awareness of childhood cancer and continue to encourage our community to "GO GOLD" for Childhood Cancer Awareness Month in September!

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Journal entry by Erin Cimpl Nahorny

Check out the great article from the Columbus Telegram about our blood drive yesterday. We had an awesome day. Nearly 60 blood donations were collected. We had a very successful kick-off to our "GO GOLD" campaign for September, Childhood Cancer Awareness Month. 

Thank you to the Columbus Telegram, blood donors, sponsors, volunteers, supporters and especially our friends and family for making this such a success.

With your help, we are turning the world GOLD in September in honor of childhood cancer!! To order your GOLD yard sign and gold exterior lights, or gold awareness t-shirts, go to www.sammyssuperheroes.org.

Sammy's Superheroes are making a difference.

http://columbustelegram.com/news/local/young-cancer-patient-inspires-sammy-s-superheroes/article_00d...

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Journal entry by Erin Cimpl Nahorny

Cancerversary.

What a stupid word.

Just the thought of it makes me mad.

Most days we’re good. We go about our days, plan our activities and appointments, just like everyone else, except that we go to the doctor more often, and the doctor happens to be a pediatric oncologist. Most days I don’t sit around and reflect on the fact that my sweet almost-kindergartener has cancer. Most days I’m not angry and bitter and frustrated that the people around me have healthy children.

But today, the weight of the last year is heavy. The memory of that day and the days following makes me feel like I might vomit. I know there are worse things, but I still can’t believe that that day happened. It’s almost like a dream. That couldn’t have actually happened, right?! We didn’t actually go to daycare and work like it was a normal day, did we??? Up until noon, on July 30th, 2012, we were normal.

After that, hmmm… I don’t know. I remember google-ing “Neuroblastoma” for the first time that night. I must have been in a daze, because I couldn’t figure out what “received their angel wings on (date)” meant. I thought for a bit that it must be some type of courage award or something hospitals give to kiddos fighting cancer. I remember slamming my computer shut when I figured it out, and sobbing in the shower, because I didn’t want anyone else to hear me. I honestly thought after that that there was no way he could survive this. Apparently, kids don’t survive cancer.

Well, we’ve learned a lot since then, about cancer, about fighters and their families, about not giving up in the face of the scariest news ever, about taking it one day at a time and one step at a time, about the power of an army of supporters, about the love of a family and the strength and perseverance of friends, about the power of prayer, about the gift of laughter and hope in the midst of fear, about the resilience and spirit of the most amazing 5-year-old boy we know.

So, here we are, one year later. We really don’t care about odds and prognosis right now. We care about the fact that our Sammy feels good, played t-ball and started soccer. We are excited about shopping for Kindergarten school supplies and enrolling in gymnastics, just like Sissy. We laugh about teaching Jacob new words and bribe him with treats to do what we want him to. So, I guess life is sort of normal again… our new normal, anyway.

What strikes me the most is the horrible reality of the childhood cancer world that we’ve come to know all too well in the last year. It is the craziest reality, that parents of children with cancer are the primary fundraisers for childhood cancer research. Yes, us desperate parents,who would do anything to save our children, are out there begging for money to try to find cures, while we are begging God to save our children. 

Really, this is crazy, right?? 

I mean this is 2013 and we live in the United States of America, right? 

If your child had another illness, can you imagine, trying to raise funds for research into cures? 

To have had only one drug approved for use on children in 20 years?

Anyway, so what I am most proud of this year is a little organization called Sammy’s Superheroes. Not that it was my idea, no, my amazing friends came up with this one. Not only has it provided a means for our loved ones to show and send us support, it has become a means for us to do something big. We will make a difference. We will continue to work towards raising awareness and funds for research. We will ensure that someday, parents who need to focus on their children’s treatment are able to do that, without worrying about fundraising for pediatric cancer research. We WILL accomplish our mission.

So, on our “Cancerversary” we are going to eat ice cream and stay up late. We are going to celebrate the love that we feel surrounding us all the time and we are going to squeeze the heck out of our favorite Superhero. Please keep us in your prayers. :)

 www.sammyssuperheroes.org

 

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Journal entry by Jenna Clark

I'm not sure how to begin a post like this. Does one just lay it out there, exposing all of the details with no emotion? Or does one lay it out there with all the emotions that come with a diagnosis like this? I don't have an answer for that. All I can do is send out a message on Chris and Erin's behalf, hoping that prayers will bring healing to their sweet, sweet boy. So please bear with me as I navigate this post.... Today Chris and Erin had to hear the words no parent should ever have to endure. Sammy was diagnosed with neuroblastoma. For those of you who would like a better understanding, here is a definition: Neuroblastoma is a type of cancer that begins in the nerve tissues (neuroblasts) of a child's abdomen, pelvis, neck, spinal cord or adrenal glands, located above the kidneys. Neuroblastoma commonly affects children age 5 or younger. Here is what I know to the best of my knowledge/memory: The tests showed a large, calcified tumor resting on top of his kidney. The sympathetic nervous system is involved, though we don't know to what extent. There are also lymph nodes affected in his lungs. Both the pain in Sammy's stomach and in his legs could be symptomatic of this diagnosis but they will learn more in the following days. They are taking Sammy to Children's Hospital tomorrow morning and will be meeting with Dr. Elizabeth Thompson. They will be discussing the prognosis and treatment options. At this point that is all I am able to relay. Chris and Erin are asking for your prayers and understanding of their need for family time right now. They know they have wonderful friends and family ready and willing to do whatever is needed and they will let us know when they do.... but for right now they need our prayers. Please don't expect phone calls to be answered in the following days as they just need to focus on their family and finding rest. We will continue to update this when information is available.

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Sammy’s Story

Site created on July 30, 2012

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

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