Journal

Journal entry by Erin Cimpl Nahorny

Hello everyone, I'm sorry we haven't updated here in a while. We do most of our posting on "Sammy's Superheroes" page on Facebook. If you haven't checked it out yet, please do! 

We just got checked into our room for our 3rd round of Cyclophosphamide and Topotecan. It is a five day protocol and Sammy has tolerated it well so far. We are excited that Sissy gets to stay with us tonight since she's on break!

We will go back to Chicago for scans mid-January. Please pray that this is the combination that will kill the monster! Also, if you would like to support childhood cancer research you can purchase Sammy's Superheroes merchandise or make a monetary donation at www.sammyssuperheroes.org. We are incredibly thankful for your support. Together we will make a difference!! <3

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Journal entry by Erin Cimpl Nahorny

I'm sorry we haven't given more of a medical update lately. We met with our new doctor, Dr. Coulter last week. We decided that we would start chemo this week utilizing Cyclophosphamide and Topotecan. 

Then, on Friday, Dr.Cohn called and said there was a spot open in a clinical trial starting November 21st. We were surprised because we usually have to wait a few months for a spot. We had to decide right away, and it was a hard decision, but we decided to go ahead with the original chemo plan. 

The trial was a NANT study but Sam did have a response to the two chemo drugs cyclo/topo last fall, so we wanted to try those drugs again. We will do two rounds of this and then go back to Chicago for scans and also to have a G-button put in. 

The G-button will give us more options for future treatment because it is a direct line to his stomach, so meds he can't tolerate orally could be given through the G-button. Also, many trials have oral meds and pills as part of the protocol. 

We decided to start this round inpatient to hopefully stay ahead of Sammy's sick tummy, utilizing a lot of antiemetics. He will be taking Regalan, Zofran and Benadryl scheduled. We are hoping he will get through this round easier than the last! 

We were excited to hang out with Aunt Eileen today. We are lucky kids to have such a cool Auntie.  

Wish Sammy luck and please send prayers!!

www.sammyssuperheroes.org

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Journal entry by Erin Cimpl Nahorny

Sammy started throwing up this morning, so we are at the ER for labs and fluids. It is probably a virus, but because of his risk for dehydration we aren't taking any chances with getting any sicker! We also did get bone marrow biopsies back and they were 10% and 20%. Last time they were 2%. Dr. Cohn said that there is no way to truly quantify because unlike blood cancers, Neuroblastoma "clusters" in the bone marrow, so a true percentage is difficult to determine. The MIBG was unchanged from last time, so the good news is the disease is stable, the bad news is that the amount of disease hasn't lessened. We will be starting a new maintenance type of chemo using Cyclophosphamide and Topotecan and we will be getting on a waiting list for another clinical trial. Please continue to keep Sammy and our family in your prayers.

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Journal entry by Erin Cimpl Nahorny

Well, we don't have a lot of information yet, but we are getting lots of questions, so I will pass along what we know... The only results we have are from the CT scans, which show stable disease, meaning there appears to have been no change since the last round of scans. Specifically, the CT looks at soft tissue, so it shows the lymph nodes/tumor in his abdomen, by his spine and by his collar bone. The MIBG will "light up" areas of active disease, so we are waiting on that to see what lights up. This will also show any active area of disease in his bones. The bone marrow biopsies will take a few days to hear about. While of course we continue to hope for a positive change, stable is good. Based on the CT there does not appear to have been any growth in the tumors or new areas of disease. We have begun to discuss treatment options, but until all the testing is back, we won't make any final decisions.

As always, Sammy was a trooper. He is so comfortable with all the procedures. One of the nurses, Judy, even told us that he woke up in between procedures and asked if she could get him some pancakes. They all adore him. He is such a good and sweet patient! He cracks everyone up. I am just so thankful that he isn't scared and that he handles these things so well. It definitely makes it easier on us! 

Thank you for your prayers, Sammy's Superheroes 

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Journal entry by Erin Cimpl Nahorny

I know we've been in this room before, and honestly, when Sammy is feeling miserable, there is some comfort in being here. Anyway...Sam was re-admitted to the hospital Saturday afternoon. He was continuing to vomit, have diarrhea and his blood sugar was at 50. With no eating or drinking, this wasn't terribly surprising. He had not been feeling well at all and was a little warm last night, 99.8... 

This morning his temp was 101, so we needed to do blood cultures, both through his port and peripheral, by drawing from his arm. He has not thrown up today, but his diarrhea has gotten worse and still no eating or drinking.

Chris, Ella & Jacob came to Omaha yesterday afternoon and it was good to spend a few hours together! We watched Harry Potter, while Sammy slept. 

Also, three cheers for Aunt Megan! I'm so thankful she came to Omaha with me and Sam on Tuesday. She has been incredibly helpful and awesome company. She also stayed with Ella and Jacob at the hotel so Chris could stay at the hospital with me and Sam. 

Keep praying Sammy's Superheroes! <3

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Journal entry by Erin Cimpl Nahorny

Sorry I haven't updated sooner. We had an amazing and wonderful trip to Florida. Make-a-Wish, what a completely amazing organization. We had so much fun. We got home late Sunday night and started chemo up right away on Monday. Sammy has not tolerated this round well though and was inpatient for two of the days and we stayed in Omaha the rest of the time, just so we didn't have to put him in the car and drive to/from Columbus everyday since he is so nauseous.

Sammy is battling a sick tummy, but today marks the last day of chemo for this round. This is a picture of Sammy getting Zofran to hopefully help his nausea. We haven't found the 'perfect cocktail' that's been able to wipe out the nausea yet, but we're trying some new meds today. Thank you for all the prayers.

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Journal entry by Erin Cimpl Nahorny

Don't forget today is our GOLD OUT day for Childhood Cancer Awareness!!! Wear your gold Sammy shirt!! If you don't have one you can get them at HyVee, Columbus & Humphrey Physical Therapy, Dynamic Life & Wellness and Dickie Doodles. If you can't wear a Sammy shirt, wear any yellow/gold shirt. Please take this opportunity to tell someone about why you are wearing GOLD!! #spreadingawareness #GOGOLD!!

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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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