September 3, 2016 🔹 Weekend update

Our nights at home went pretty well this week..we did our medicine around the clock and battled through nausea & vomiting. All things considered, the days weren't too bad.

We got a fever Wednesday evening but didn't have to go to the ER fortunately. Went to clinic on Friday for labs and evaluation. Our ANC is extremely low, as expected, so he's neutropenic..again, as expected. Cole got a platelet transfusion Friday as well.

Unfortunately, last night he spiked a fever so when we called the on-call doctor said to just come in, not to the ER but straight to the floor where they would have a room waiting for him. Soo..we spent the night in the hospital. 👎🏼 His hemoglobin dropped again so he got a blood transfusion last night (we anticipated getting one this coming week anyway).

The standard with fevers and cultures is to monitor for 48 hours to see if anything grows. However, Cole is a special case so the standard protocols don't always apply to him. We all know that he gets fevers. Different kids have different ways they react/battle things, and Cole gets fevers. So while disappointing, fevers are his "norm." In 3.5 months he's never had a positive culture so while we certainly know things could always change and he could get an infection, it's typically pretty safe to assume his fevers are from being neutropenic and also how his body combats things.

We of course appreciate that they want to be precautionary, but if we have to come in every time he's neutropenic and/or spikes a fever, then we're not sure we should have left as we'll be here all the time outside of the scheduled treatment days. He got another fever this morning so until his counts go up and his body bounces back from the mega chemo, he's more than likely going to continue getting fevers.

We'll see what the team says when they come by today..but we're hopeful that we'll get to go home today and maybe still have Cole attend the football game this evening. We'll see! OF COURSE, Cole's well being is top priority so we would never take him home if the doctors didn't feel it was safe. We just want to make sure we're not staying here for "protocol" at this point but rather stay if they feel there are other reasons. We just hope they can make a "protocol" for Cole that we can use here or away.

We'll see how the day goes, but we look forward to being able to go home sometime soon!

Thank you as always for the continued support!

#TeamCole🎗