July 25, 2016 ~ We have a plan

So we have a treatment plan now. I will start by saying that we are NOT giving up on anything and we BELIEVE this can be cured and Cole will be healed.. To be honest, tears were rolling down my face as I started to type this, but then I got angry and the FIGHT in me prevailed and I started to type. We won't be defeated.

Our doctor came back with the reports from Harvard and the PPB registry. PPB is ruled out, and the other report is diagnosing his cancer as "undifferentiated sarcoma." His cells just don't match exactly with a more specific named cancer, so he falls in to the undifferentiated sarcoma bucket. There's other info, not groundbreaking or hugely significant, but honestly it's just so overwhelming right now and too much to try to explain.

With how aggressive his cancer is the doctor feels, and we agree, that he needs a VERY aggressive chemo plan (6 drugs) to try to combat this. I feel we are fortunate that she is so aggressive because many oncologists would have sat and waited for results and perhaps wouldn't dive in so aggressively as she is right now, and has been the past two weeks with starting chemo. She still plans to consult with the outside doctors, including St. Jude and Harvard, to discuss the very best plan, any medication adjustments moving forward, and more importantly, how to best locally treat the tumor.

Soo..treating the tumor locally. The biggest and scariest challenge. In addition to the chemo she is confident that Cole WILL need radiation at some point and surgery again. This doctor is honest and straight up with us, much like myself, so I like her a lot.. 🙂 She is nervous. But remains confident and optimistic. This nasty tumor is stuck, like glue, to just about everything in that part of his body. This is why the local control is SO crucial..we can't just have chemo. Next to pretty much his entire right lung and a little in the left, this bastard is attached to his ribs and...gulp..diaphragm. That is absolutely frightening. It just CANNOT travel below the diaphragm. We refuse to think about, or talk about, that right now. And she said we can't even talk about that right now. But it must remain in our minds as it is theirs, because this awful thing has been growing and spreading so terribly.

Another area that must be explored, but she doesn't want to right now, is his bone marrow. She said honestly she just doesn't want any more bad news right now, and regardless of if it's in his bones, it won't change his treatment right now. We'll have to have his bone marrow tested later no matter what. She feels it can wait because most importantly, she's not sure how well he'd handle sedation with his current respiratory situation, of course. Second, like just mentioned, it won't change his treatment now. We just have to pray and believe that it isn't in his bones. We have a few months before they'll likely test it. And it's possible he'll have to have it repeatedly tested. We're not there yet, so that's on the back burner. We have more pressing issues right now.

After the rough start to the morning today Cole started feeling better and hasn't gotten sick again and is just feeling "better." Probably the biggest event today (as far as he knows about), is the hair loss. So, we've sort of had quite a bit considering we just started. Not significant in any way that you can even tell on his head, but we've had to dust off pillows, sheets and his body some. And get small pinch-fulls out when rubbing his head sometimes. And he's pulled some out in his fingers just by rubbing his head. So I guess we jumped right in to that arena as we thought it would be just a few hairs to start (not like we'd know), but I don't think it will be much longer before it's more significant. We've discussed with him the idea about the barber coming in to shave his head so that maybe it's not as scary when it comes out, but understandably so, he needs more time to process and think about it. Daddy is ready to join him with the shaved head as soon as Cole gives the green light. I think a few others will be joining him too. 🙂

So when might we be able to blow this popsicle stand you ask? Not for a while.. 😔 We are looking at probably the end of August before we might be able to go home. Our dear friends and family.....our Cole is "sick." Very sick. We try to focus on the positives, but his body is not well. He's his doctor's sickest patient right now and always on her mind (and other doctors). His path is long and absolutely scary. He won't be able to start school with his friends next month, so we'll have to work with the social worker about home-bound schooling, etc. It's so crazy to even think about all this. We HOPE he'll be able to go home at the end of August...but that was just a rough estimate to start and we have to take this stuff a day at a time, not even a week at a time. And a lot can change between now and then. He has months of treatment ahead of him, and we will fight tooth and nail every step of the way. He'll get chemo weekly, unless his body gets to a point where he can't handle it and must take a break, but even if we get to go home he may have to come to the clinic/hospital more than once, maybe even 2-3 times/week depending. We'll either be here or traveling here a lot regardless.

So yeah, it's been a day...and it will be such a week. I am 100% scared to death right now, I've cried a lot, but we will not accept defeat. And we aren't at that point yet anyway. One thing remains strong...Cole is a FIGHTER. He's continued to amaze the doctors and nurses. I can't even express how proud we are of him. When he should be a lot worse than he is, he's sitting across the room right now watching a movie on his tablet and only on a half liter of oxygen. He hasn't spiked quite as many high fevers today so maybe we can keep that momentum. We definitely have ups and downs every single day, but it could always be worse. With this new chemo regimen, he'll start feeling worse, looking worse, and it will be harder to find those "ups" each day, but we will fight for them.

It's kids like Cole that can fight through this kind of cancer. We CANNOT, and will NOT, believe anything less. We will never give up and we will FIGHT through to the end..when our Cole is healed. And we will take a fabulous vacation to celebrate.

As always, your continued love and support has helped us through this and we are beyond blessed and grateful for each person that has been, and is, on this journey with us. You all are amazing 🌟

So yes, the moment we've all been waiting for....WE HAVE A PLAN.

SO LET'S GO, AND KICK CANCER'S ASS! 👊🏼

#TEAMCOLE🎗