October 12, 2016 🔹 Preliminary scan results

Wanted to provide a brief preliminary update on our scans today. The scans went well and of course we've just been waiting patiently, on pins and needles, to hear something. The only PEt scan we've had was in July and his last CT scan was in August.  

Cole was absolutely perfect for his scans today and held still the entire time for his full body PET scan and CT scan. They were so impressed as most kids need sedated. Not our Cole, you tell him one time what he needs to do and like always, he does it, exactly as instructed!

As anticipated, our doctor did not wait for the final report on things and phoned us a bit ago with preliminary findings so far. We were counting on this! She will show us the scans next week and discuss further but here's where we are.

The masses look smaller, yay! There is nothing in the belly (liver, etc.), yahoo!!

There's still some jelly stuff there too and such (like before), but overall the tumors have shrunk. She wouldn't have expected the jelly stuff to just go away like some had hoped, and said it will hopefully come out with surgery. There are fewer tumors in the left lung than before and the right lung that was full looks much better. The spots that previously lit up on his backbone look better so that's very positive as well. She did not have measurements and such yet so can't tell us a percentage of shrinkage yet, but again, things are smaller so she wanted to let us know asap.

There was an area that lit up on the back of his brain, so she wants an MRI of his brain Monday morning. She is optimistic that it's not something, but she wants to be safe. Sometimes areas can light up that have metabolic activity so she does not assume it's the cancer. Again, the MRI Monday will show us more but we are all optimistic and staying positive that it's nothing. Since he'll be there for the MRI they plan to go ahead and admit him for his 2-day chemo that was initially scheduled for next weekend. She wants him to go ahead and get it early this week which is just fine. His counts are ready so let's go!

Cole will continue chemo while surgeons elsewhere evaluate which can take a few weeks. She's sending the scans to St. Jude again for that physician to review and review with their surgeons, but most likely they want us to use one of the best known surgeons for adult lung cancer who is in Houston. About a week or so ago our doctor had presented Cole's case to the tumor board and has continued consulting with the physicians elsewhere. They (collectively) were looking at a few surgeons at KU Med and the one from Houston. We feel good that this evaluation/decision is a group effort with several doctors/surgeons evaluating and assessing what the best plan is.

He'll most likely have surgery before starting radiation as well because they felt his masses were too large to radiate right now, they really want to radiate as small of area as possible, for obvious reasons. So radiation is on hold for now, and will most likely occur post surgery, whenever that will be.

This stay at home is the longest we've had..tonight will be TEN nights at home! His counts crashed this past weekend but they're up now. We don't really take his temperature so we don't technically know if he's had a fever like he usually does. They had said not to obsess over the temperature...if he looks and feels good he's probably good. But, still pay attention to the temp and his body. So, we've felt he's "looked and felt good" so we have stayed clear of the thermometer!

He got some transfusions of platelets and blood yesterday and today his counts are good. Overall, Cole has felt pretty darn "good" this past week and this week..it has been so wonderful to see him smile and feel good. We didn't know what to expect this week as it's around 7'ish days post-chemo when side effects start, which was this week. We're riding this out as long as we can! Cole attended the KU football game this past Saturday which was awesome! He made it until halftime and was there for 4 hours which was fantastic. It was a beautiful day and it was so beautiful seeing him feel well enough to go to the game. We've seen so many more glimpses of the Cole we know, and it has been so heartwarming. His smiles, giving us a hard time, playing some games, and just....more engaged. Melts our hearts!

So....right now we are celebrating these victories! Cole is feeling pretty well as long as we keep all his meds on board, we got good news today with these scans so far, and we're continuing to stay positive and optimistic that we'll continue attacking and BEATING this evil monster. This kid is such a champ I can't even explain to you!

Thank YOU ALL for the continued thoughts, prayers and well wishes. We firmly believe that our Lord his held Cole in His hand and has carried him this far. We believe in our hearts He will continue carrying him and we will BEAT this thing once and for all!!

We love you all, thank you for all you do!

#TeamCole🎗