Journal

Journal entry by Erin Cimpl Nahorny

Today was a good day. Sammy felt so much better. He talked to everyone, ate breakfast and lunch and is eating pizza, an apple and chocolate milk as I type this. 

I had several different conversations today about advocating for your kiddo and pushing to find options that are in their best interest. All of the nurses were excited about now knowing this option to offer to families in our position. 

The best thing about today was that we were able to spend the day at the Infusion Center, not throwing up and sleeping, but visiting with our fellow FBI Junior Special Agent, Paul, and his parents. I had a "moment" when the nurse came in and gave them the results from Paul's scans today. I realized in that moment, that I was terrified for them. When I saw Claudia give them the thumbs up and saw the look on Paul's parents faces, I kind of broke down. Nothing totally embarrassing, just tears. 

I just love that kid. He is in 5th grade. He is incredibly sweet to Sammy. He is patient, funny and smart. Paul likes bugs and insects and he wants to be an Entomologist. (He and Chris looked that word up)  He is another example of the cruelty of childhood cancer. Watching this amazing family that we adore, wait in fear for results is so incredibly difficult. I am so thankful that his scans were clear. It's hard to explain the relief I felt to hear that news. 

While we wish everyday that Sammy wasn't sick, once again, I have to acknowledge that this has also been an opportunity for us to see the very best in people and to meet some of the most incredible kiddos and parents in the world. 

So, tonight, here's to Paul's clear scans, no NG tube, eating pizza, our St. Isidore's family's awesome cards, Fr. Joe visiting and singing "If I Were a Butterfly..." with Sammy in the middle of the Infusion Center and to all of you for continuing to be Sammy's Superheroes and helping us fight this war on childhood cancer.

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Journal entry by Erin Cimpl Nahorny

We started chemo back up today. Irinotecan and Temodar again, only they will be doing the same amount of the drugs over 5 days instead of 10. The biggest risk of that is diarrhea. Poor Sammy, of course he didn't want the NG tube again, so we let him try taking the oral medicine (Temodar) by crushing it up in easy cheese, then making a cracker sandwich. He almost ate the whole thing but then threw it all up. So we had to go to the NG tube anyway. He is such a brave boy. He tries so hard. He broke our hearts today when he kept repeating "Why do I have to do this? Why do I have to have cancer?" Sammy's experience today is what strengthens our resolve to change the world of childhood cancer. Why can't the medicines by more kid-friendly? Why can't it be liquid or flavored or IV?! It's frustrating. BUT, our boy did great and after the tube, he got the rest of his medicines and took a nap. It was a long day and we are anxious to get home! Please send Sammy "no puke" prayers again for this week! We love all of you, Sammy's Superheroes.

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Journal entry by Erin Cimpl Nahorny

We would love you all to join us today, the first day of Childhood Cancer Awareness Month, for

               "Sammy's Superheroes Day"

                Columbus Races, Ag Park

                                              2:00pm Post-time


We live in the most amazing and supportive community and we would love to come together today to celebrate all that we have accomplished this year. 

Wear your blue or gold shirt and come hang out with us! We will have merchandise available for purchase as well. 

We are excited to see you all there!

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Journal entry by Erin Cimpl Nahorny

So I know it has taken me forever to post, and a lot of you know this about me...when I don't get the news I want, I need a few days to process and come to terms with the next step. Unfortunately, not getting the news we are hoping for has become the norm. Somehow, we deal with it, make our decisions and keep moving forward. 

The scans show no change in Sam's disease following the MIBG with Vorinistat Clinical Trial. Many kiddos have a 30-40% reduction in disease with MIBG therapy, so we were really hopeful this would put a dent in the amount of disease Sam still has. Unfortunately, there were still several areas of active disease on the MIBG scan and the CT scan. They continue to show tumor in his abdomen, by his collar bone, in his bones - femurs, pelvis, spine, arms. Like I said, no real change. His bone marrow also remains about the same, with approximately 2% disease. 

We are thankful for no progression, but this isn't a disease that can just sit there forever, and we can't do chemo forever. So, we are continuing to ask for/beg for your continued prayers for Sammy's cure. 

Our plan for now is to go back to the chemo we were doing this spring/summer. The drugs are called Irinotecan and Temodar. We will start on September 9th. They have determined we will be able to do this over 5 days rather than 10, so we are thankful that it will be less disruptive to school than we thought it would be. We are hoping that he will have a response to this treatment and we will scan again in about two months after two rounds of this protocol. 

Thank you for your concern about our sweet boy. I have heard from several people wondering and praying about the outcome of the most recent testing. Right now, Sam is enjoying kindergarten. He is loving his new friends and Mrs. Spencer. And we are enjoying the normalcy of our lives for a few weeks. :)

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Journal entry by Erin Cimpl Nahorny

We are so excited to announce that we will kick-off Childhood Cancer Awareness Month on Sunday, September 1st, with Sammy's Superheroes Day at the Columbus Races!

Post time is at 2:00pm at Ag Park in Columbus. 

10% of concession sales that day will be donated to Sammy's Superheroes Foundation for Childhood Cancer Research. 

Bring your whole family and join us on Sunday for a great day full of fun and raising awareness and funds for Childhood Cancer. 

Sammy LOVES the races and is excited to see how many Sammy's Superheroes shirts we will see! If you don't have your gear yet, no problem, you can get it there!
 

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Journal entry by Erin Cimpl Nahorny

We need to send out a big, gigantic and super excited THANK YOU to the participants of the Cimpl Invitational Golf Tournament this year, who made a donation of $5,000 to the Sammy's Superheroes Foundation!!

This is on top of any merchandise that was purchased at the event. You guys are AWESOME!!!

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Journal entry by Erin Cimpl Nahorny

It's official! You can get your Sammy's Superheroes merchandise at these local businesses: Columbus Physical Therapy (Columbus & Humphrey) Dickie Doodles Dynamic Life & Wellness Hy-Vee We are so thankful for the support of these local businesses who are helping us spread awareness. GO GOLD in September!

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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

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