July 5, 2016. Update 2

Well after kissing that sweet face about 82 times, we've settled in our room.. And NOT in the PICU! I guess the good and the bad..we are all too familiar with these rooms, the cafeteria, & navigating around the hospital so we settled in pretty easily.

I cannot recall the last day Cole didn't have any pain, and right now he is pain free. So wonderful to see. He has a continuous epidural plus a push-button pain pump so he should be covered. 👍🏼 He's on very minimal oxygen which he only has for comfort right now. This is so awesome considering we were prepared for him to be on a ventilator. His lungs are doing great right now!

Both the surgeon and anesthesiologist said that Cole is a fighter, and did GREAT in surgery. Not news to us because he is one of the strongest people we know; he truly is a fighter in all regards. He did need a blood transfusion during surgery, but only because he was losing blood and was anemic prior, his vitals remained great throughout the entire surgery. The transfusion should help his body recover and just help him feel better in general. He will have his chest tube in for 3-5 days for drainage of the blood, it's larger than the last two chest tubes due to prevention of blood clotting. But with the epidural (which will likely be for a couple of days), he doesn't feel the tube, or where he had surgery. Hallelujah for that

In true Cole fashion of wanting to know straight up what's going on, he woke up and immediately had questions.. Do I have a chest tube? Will I have pain? When can I eat? Did they get all that stuff out of me? Can I go back to sleep after they take my IV out (he had an IV in his hand in addition to his PICC line he already had in his arm). He is so strong that he handled those questions well. We haven't mentioned yet that he won't be able to pee since he has a catheter, we'll wait for that discussion.

He was awake for quite a while and again now and his biggest complaint was/is that he's hungry. Also wonderful to see. Unfortunately, he can't eat or drink anything at all until tomorrow sometime at the minimum. That is upsetting and "not fair because his tummy feels ok," which while we agree buddy, we'll deal with that complaint over having pain right now. :-) He is still having shoulder pain from the previous procedures so he is able to use the pain pump for that since the epidural covers below that so we're able to keep pain under control for now which is fantastic.

In my last post I shared the status of the surgery regarding removal of the tumor, and the plan for the next phase, treatment. As I shared, they weren't able to get as much out as planned, but we feel 100% confident about the decision to stop where they were. Anything more would have been too risky in many regards as I stated. It is reassuring to trust in the surgeon as we have/do, and we feel he made the best decision for Cole at this time. The largest tumor which they went after was huge. They got two cupfuls out and that was barely half of it. Because it was so large, that is probably what was causing his constant stomach pain. Freeing up space there so things can move back around should help with that. They did cut a small hole in the diaphragm to look beneath it and they said they didn't see tumors below it and the liver looked clean. Whew! So the lower tumor on the scan was connected to the larger one and was just pushing down on the diaphragm. Whew again! Again, they got as much as they possibly could, safely, today. The surgeon said it is unlikely he is finished with us, but the hope/plan is that chemo/treatment will help shrink what is left for surgery later.

Next step, diagnosing this beast and hitting it hard. His oncologist anticipated having some answers by week's end, but also knowing that other tests may still need to be sent out in addition (back to Harvard, St. Jude's, etc.) to get an exact diagnoses. But if she has enough to determine what family these tumors belong to, she can narrow down treatment and begin. With Cole's body being so small, weak and malnourished right now, we need to build him up as much as possible before beginning chemo of any kind. It's possible that he may begin treatment next week if they feel his body is ready. Like before, we can't lose any time because the reality is they only got part of the tumor, we need to fight what is left in his body so they don't continue to grow and spread. Long road ahead, but we are ready.

I haven't provided every detail possible, but enough to share with everyone where we are at with things and don't need to write a novel. :-) Again, still a long road ahead but we are ready, so LET'S GO 💪🏼👊🏼

We cannot begin to express how grateful and blessed we are to have such an amazing support system for Cole. The countless prayers for him from everyone made a difference. You all constantly lifted Cole, the medical professionals, and us, up in prayer. We will be forever grateful. Thank you isn't enough, but THANK YOU ALL.

While all was in His hands and part of His plan, He heard our prayers and held Cole and the medical professionals in His hand today. Praise Him 💫

Give thanks to the Lord, for he is good; his love endures forever. - Psalm 107:1