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!!

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