Journal entry by Erin Cimpl Nahorny

Another VERY long day! We are so tired!! 

We started the day with an ultrasound. This is a long story that I am going to try to make short… We talked with Dr. Cohn a few weeks ago about doing a biopsy of the mass by Sammy's clavicle to recheck his ALK status. In discussion with the surgeon and radiologist, Dr. Cohn told us that they wanted to re-evaluate that mass by ultrasound. The reason for this is that they had another patient who went into surgery to try to remove a "tumor" from a similar location and found out that it was actually an enlarged thymus gland and not a tumor. Because of this recent experience, they wanted to look more closely at this spot of Sammy's. Final decision from the team of doctors is this: there is no tumor by his clavicle, he too, has an enlarged thymus gland. This is awesome news, because this is the spot that had increased in size during our last round of testing. The doctors are submitting a case study regarding this, because, both Sammy and the other child almost underwent unnecessary treatment because of this gland! Most doctors don't think of this, because the thymus gland is rarely seen in children his age. 

While we are so happy for this news, Sammy still has quite a bit of disease. It does give us hope though, that we can still decrease his disease through other treatments. 

We did the stem cell harvest today and will continue that tomorrow. It went well, other than Sammy being quite uncomfortable with the pheresis catheter in his neck. We do not have any numbers yet to know how successful the collection was. We should know more in the morning. As always, Sammy was a trooper and basically didn't move from 10:30am until almost 8:00pm. We were sad that Chris went home today, but happy that Grammy and Grandpa came to stay and will drive home with us whenever we are discharged.

Near the end of today's collection, Sammy did have a slight fever (that resolved on it's own), but, because he has had so much "activity" with his lines, they are drawing cultures to make sure he doesn't have an infection in one of his lines. We got to end our day with a great visit from Aunt Lori and cousins Will and Ben. There was an awesome magician who came to visit and it was a great distraction for Sammy, we all know how much he loves magic!! 

Thank you for your prayers. You are amazing. We love Sammy's Superheroes.
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