July 20, 2016

It's hard to ever say a day is "good or great" without the asterisk of "*all things considered" but I think people know that's understood.

I haven't posted an update in a while which I know may concern people so I thought I would post one today since we have such amazing support from people that want to know how Cole is doing. In general, there's just always something going on so it's hard to summarize sometimes or I'd end up writing a novel. :-)

We had a weekend full of visitors and quite a busy week so far as well. The weekend went well overall, but we had hoped to see improvement by now on fevers and oxygen. The small, but important, victories we need to see are LOWER heart rate, decreased/zero fevers, less/no need for oxygen, less/no need for pain medication. We are still having fevers and still needing oxygen unfortunately. We've progressed where pain management is concerned and are weaning off/transitioning. We've gradually been lowering the continuous pain drip, added a new IV pain medication that he'll transition to after the continuous stops completely, and then after that he'll transition to oral pain meds - all with the goal of no pain medication by August 1.

We've had to adjust things along the way, take several blood draws here and there, add in various medications for various things such as blood pressure, protein for the blood, and other things, all too much to type out. The past few nights and during deep sleep naps he's struggled more with breathing so they've had to increase his oxygen during those times. It's hard to see him struggling to breath.. He's also having nightmares quite a bit and sometimes we have to wake him up. It's tough to see, but on the positive side he's sleeping deep enough that he's getting good rest.

Yesterday and today Cole was "up and moving" more..not extensive, but it's great to see and great for his lungs. He walked more today which was great. In general, today has been a good day so far (no jinxing!).

So, the medical updates.. Yep, that's what you've really been waiting for and yep, I made you wait until the end of the post. I gotta keep you all on your toes ya know.. 😉

We do NOT have pathology results back and do NOT have a diagnoses yet. Yeah, it stinks. Yeah, we're frustrated. Yeah, can you believe things take this long?? But, we didn't really anticipate anything back yet. After all, pathology doesn't work on the weekends, and the second opinions that were sent out take a few weeks to come back and it's only been a week. And remember, stains and tests take time to grow and analyze. We anticipate getting the one from Harvard back first, maybe this week, but St. Jude's takes 2-4 weeks AND they are 3-4 weeks behind. Yeah, ugh 😣. They also sent things to the Pleuropulmonary Blastoma (PPB) cancer registry as well. This was their way of roundabout finding out if it could be that in that if the registry says it doesn't match, then we can rule that cancer out. But it could be that.

With the slight increase in difficulty breathing, the fevers, and just making sure there isn't infection or such, the team ordered a CT scan today. Of course this made me very nervous because we knew we wouldn't have one of those for several weeks, and it's only been one week. So why so soon?? They said they just wanted to check things out to make sure there isn't anything they need to address right now while waiting for the other results to come back. Cole's had a rash/infection-type looking area on his side so he's been getting antibiotic. So all things considered, they just wanted to scan.

The CT showed some sort of stuff in the right upper lobe, but it could be infection/pnemonia of some kind or could be more tumor - they can't tell right now. The "good" news with the scan is that while the tumors in the left lung are bigger (bad news there), there aren't any NEW tumors in the left that they could see. They said the left tumors were around a millimeter bigger, but that's good in that it doesn't appear as of now that they've grown substantially or spread which was our big concern.

Chemo went well yesterday, we just had one of the medications. Chemo takes time to work so there isn't a way to see if this particular recipe is working yet or the right one. But we have to keep trying something and this was a good place to start. He's only felt nauseous a few times the past few days but hasn't gotten sick which is good. Otherwise his body has handled things well with the chemo, feeding tube, IV meds, etc. He is a CHAMP 💪🏼

This week we will have to have the conversations with him about the other side effects..physical appearance. We may see some of those things..yeah, the hair loss thing, start as early as next week. It will likely be gradual, but it's anticipated within the next week or two it will start happening. This will be VERY hard for Cole, so we will all do our best to help him understand and learn to adjust as best he/we can. I think being here with other kids "similar" to him will be helpful in the beginning before he has to go back to school.

So in a nutshell, things are pretty decent right now..all things considered of course. He looks better and is moving around better which is great. We have to pray that things are getting better on the inside too as only time will tell. We BELIEVE we WILL have the time, and that things will get better. In the meantime, while we pray for the diagnoses and treatment plan, we need to pray for the smaller victories: lower heart rate, fewer/no fevers, less/no need for pain medication, and less/no need for supplemental oxygen.

THANK YOU FOR THE CONTINUED SUPPORT!