Journal

Journal entry by Erin Cimpl Nahorny

Sammy woke up this morning and told me, "Mom, I'm thankful that God always loves us." ❤️


My heart. I love this boy.


We are thankful for each of you, your prayers and support. We wish you a blessed and beautiful day filled with the people you love. Happy Thanksgiving!


Be Strong and Courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go. ~Joshua 1:9
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Journal entry by Erin Cimpl Nahorny

Said good-bye to our friends at Residence Inn by Marriott (Margie, Lyndsi, Donnie and Tristan are in this photo) and we are on our way home. They take such good care of us. ❤️


Sammy was officially accepted into the study this morning. This week's testing shows stable disease, with bone marrows at 5% and 2-3%. While we are so thankful for no progression, we continue of prayers for Sammy's miracle.


We start the trial drugs, Celebrex and DFMO on Monday and return to Chicago next weekend for Cyclophosphamide, Topotecan and several days of bloodwork. The week after that is Celebrex and DFMO at home again. Each cycle lasts 3 weeks and we will do two cycles and then do another work-up.


Thank you for praying us through yet another stressful week. ❤️💛💙

Journal entry by Erin Cimpl Nahorny



Sammy is doing awesome. He started 1st grade and has only missed about 4 days of school so far this year. He has lost both front teeth and is a bit of a toothless wonder right now!


He was able to play soccer this fall and was so proud to get his medal at his final game last weekend. He is feeling good and looks great. He is enjoying play dates with friends and is a good student. We are very proud of him.


We haven't had scans since June, which showed no change from the previous scans. His VMA/VHA urine markers are stable, so we will wait to do additional scans, biopsies, etc, until there is an opening in the clinical trial Dr. Cohn has suggested. We were recently told it will be at least 2 months, but Dr. Cohn and Dr. Coulter agree that this is the best treatment option for Sam. Of course, we trust them implicitly, so it's a no-brainer. Plus, we are really enjoying "normal" life.


We continue to feel extremely blessed that Sammy doesn't complain of pain and is generally a happy 6 year old. Thank you all for your continued support and prayers. This is a pic of Sammy wearing a new fighter's shirt, Troop Maxon. ❤️💛💙

Journal entry by Erin Cimpl Nahorny

We are so blessed by the support our hometown give to our mission to raise awareness and fund research for childhood cancer.


This weekend the Columbus Catholic Churches are encouraging parishioners to WEAR GOLD (including gold SS t-shirts) to masses in support of Childhood Cancer Awareness Month. The 2nd collection at all masses will be for childhood cancer research. Thank you all for your on-going and generous support.

Journal entry by Erin Cimpl Nahorny

Who knows what today is?? It's September 1st and the start of Childhood Cancer Awareness Month. Each day we can do something to help raise awareness of this dreaded disease, the #1 cause of death by disease in our children.

Day 1: CHANGE YOUR PROFILE PIC on social media sites and REGISTER for Glow Gold our 1st annual fundraiser at, www.sammyssuperheroes.org. If you live out of state and can't attend please consider a donation to childhood cancer research AND go to your local hardware store and buy yellow lightbulbs and CHANGE YOUR EXTERIOR LIGHTS to honor ALL children who have fought cancer. GOLD is the color for childhood cancer. Help us raise awareness this month!!


Journal entry by Erin Cimpl Nahorny

Sorry it's been so long since the update here! Sammy has been doing great his he had his stem cell rescue in June! The next week he got to throw out the first pitch at a Cubs game! It was an awesome weekend!

Journal entry by Erin Cimpl Nahorny

Stupid, stinkin cancer. The MIBG scans and CT reveal no change since the last scans before MIBG therapy. While we are thankful for no progression at this time, it is also frustrating and discouraging. 

From October 2013 to January 2014, there was slight progression, while he was receiving chemo. From January to April 2014, there was no change with no therapy during that time. And now, there is no change with high-dose whole-body radiation. It's a very helpless feeling. It doesn't seem to matter what we do, the cancer does what it wants to. 

While the therapy destroys his platelets and red blood cells, requiring weekly transfusions, it doesn't seem to destroy the cancer. Believe me, we are thankful for stable, but it's still hard. We are so desperate to hear NED, yet that feels so far away. How can our seemingly normal healthy 6 year old boy be so sick?? We will hear about the bone marrow biopsies next week. There are a few phase 1 clinical trials we could discuss, but we will definitely need some guidance about the next steps of treatment. 

Today, Sam once again needed both blood and platelet transfusions. We have decided to do a stem cell transplant/infusion next Wednesday, to try to rescue his marrow. Thank you for all your love, support and prayers. Please keep them coming as we make the next difficult decisions.

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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