July 8, 2016

No update on the pending pathology reports so just sharing an update on how Cole is doing as so many of our wonderful supporters have been waiting to hear.  :-) 

To no surprise, Cole has continued to be a champion. It's not surprising, but yet it is still so amazing to see how incredibly strong he is. Overall, he has been doing pretty well with the exception of the pain he's been having. The epidural covers the surgery site, but his pain, like with the other procedures and chest tubes, seems to radiate to his shoulder.  He's had some stomach cramping as his intestines woke from surgery, the surgery itself, etc. so that and his shoulder have caused him the most trouble. However, we know once the epidural comes out he will start feeling some pain from the surgery since it was such a major surgery. Hopefully the new oral and IV pain meds will suffice.  Unfortunately, he has been spiking fevers again so he's had blood cultures drawn to explore further. With so many things going on they need to narrow it down. Fevers can come from post surgery, the PICC line, the epidural or just the tumor (which was the cause before). It is likely the tumor is causing them again as everything else looks prestine.  

Yesterday was an active day.. We got the chest tube out which was fantastic as it was earlier than expected. Also got the catheter out which he was very glad about so he can potty on his own. We still have the epidural in and he is transitioning off of that today so it will likely come out sometime soon.

At some point today we will move back to the HEMOC floor to begin our next phase. As previously shared, we have to work on nutrition so once back to that floor we'll await the plan for the NG tube for nutrition and then chemo. Again, his body HAS to get stronger before he can begin chemo. Also hoping to have some kind of pathology reports soon, at least internally at CMH, while the ones sent out are pending.

As for how the parents are doing...we're hanging in strong. I/we certainly have had our moments of breaking down, but not in front of Cole. I think we are just still numb about the whole thing and in such disbelief that we don't really know what to feel. We are 100% scared to death and heartbroken, but keeping our strong faith that they will be able to identify this cancer and he WILL BE CURED. We cannot believe anything else.

I can't even begin to explain what this feels like as a parent. Some of you may know this feeling or had a similar experience with a family member or friend, but it just breaks you down inside (and sometimes outside) as a parent to see your heart "walking" around outside your body battling something like this. Or in this case, see your heart laying in a bed with such pain, agony, tears and sadness. Sometimes he looks me straight in the eyes in a different way, where I can see deep in his eyes and see his thoughts, and I see such a sad, heartbroken face looking at me telling me to help and fix it, I know that's what his eyes are saying...and it stabs me in the heart. It's true, you hear about other people/kids having the "C" word, and you truly never ever think it will be your kid....until it is.  

I always wonder how he's doing mentally and can only imagine what he must be feeling. It amazes me how strong he still is and hasn't lost his will to fight. He's had so many things done to him, and will continue to, so his strength is incredible. He knows he has cancer, but he doesn't know what all that means except that people can die from it.  We don't focus on any of that and only talk about the things we need to do to fight this "stuff" in his body. That he understands. 

So we are ready for the next phase - FIGHT. We'll begin that journey soon, and feel more than blessed to have you all right next to us for this journey. Continued thoughts and prayers are appreciated more than you know.

Let's go Team Cole 👊🏼