Posted 2016-07-15T17:04:36Z

July 15, 2016

Been a couple days so thought I would just provide an update going into the weekend..

We saw our doctor on Wednesday who confirmed that the PET & CT scans showed that the disease hasn't spread outside the lungs yet, but there were the few new spots on the left lung and unfortunately, the tumor in the right is bigger again since surgery last week. In just a week's time again, things grew and spread. So frustrating.. She said the right lung is pretty much gone which was extremely upsetting to hear since we were hoping the upper lobe was salvageable. Additionally, this tumor isn't such that they could go in and just pluck it out anyway because it's "stuck" to things in a sticky way, like stuck to the ribs and such. So trying to remove more than they did would mean possibly removing good tissue with it since it's so glued everywhere. Of course, we don't want to remove any good tissue so that was still the safest plan. Pathology sent out for the second opinions last Friday so perhaps we may hear something this coming week. Since pathology doesn't work on the weekends we anticipate it will be an entire week since they typically take 1-2 weeks or more to come back. There just HAS to be someone that can identify this rare cancer so that we can tackle it head on. We believe this.

We tolerated chemo from Tuesday pretty well, in true Cole fashion. He's only felt nauseous a few times but hasn't gotten sick. They've done a good job combatting that throughout. Unfortunately, we had increased pain yesterday so they had to increase his pain drip when ideally we'd be moving toward oral pain meds. We're still on oxygen as well so no advancement there. And the darn fevers are still with us which makes you feel crummy.. 👎🏼 We'll do another round of chemo (2 of the 3 medications) on Tuesday (it's weekly). The main, mega chemo medicine we'll do every 3 weeks unless pathology comes back and they're able to diagnose which may change the treatment plan. Until there is diagnoses they can't create a long-term treatment plan.

Our heart rate is still very, very high which is concerning. While the EKG and Echo were normal, they are still monitoring things closely as related to the heart. There was indication of blood flow moving a little differently from the heart, but the cardiologist doesn't believe there is anything concerning, but just with the tumor being so large, and near the heart, it's impacting the flow because it's pressing up against things and moving things.

We had an ultrasound yesterday to check fluid in the stomach because he's been a little distended and they saw what appears to be some fluid possibly in the lung so we'll do another ultrasound today on the chest. That's not great because we know how they remove fluid from the lung.. I don't even know how we deal with another procedure and/or chest tube right now, IF that would be the route. We'll see..

Our feeding tube has gone well and we're up to the full dose so fortunately his stomach has tolerated it well. We've had a sore throat yesterday and today from the feeding tube but hoping that gets better. The first few days went well. Trying to use throat spray to numb it but we're not a fan of that either.

Overall, we've all been working hard on keeping our spirits up and stay positive. It's challenging. With every day that passes we get closer to a week, which means things may have grown and spread again. It seems like days go by pretty fast at times, and all I want is for them to slow down because of the fear of what another week will bring. We may see some changes that would signify chemo is starting to work, such as decreased fevers, needing less or no oxygen, and heart rate going down. But generally speaking it takes days/weeks for chemo to work and we've had one treatment. Sometimes things can happen quicker and sometimes not. We can't do another CT scan for a few weeks because of the radiation. X-rays can show fluid and such, but the CT scan is what shows the tumor development. One CT scan is equivalent to about 1000 X-rays regarding radiation so that's why we can't do them often, although it would be great if they could every week to check progress.

As I've continued to tell people, it's so hard to explain what this is exactly like and how we're doing. People visiting or that we talk to only get a tiny glimpse and I know it's hard to even imagine what it's really like. I'm not sure I could ever exactly describe it, it's just too much to explain and just so unreal. We have been going through this for 8 weeks, but it seems like it was last week he was admitted. The doctor said we have a very, very long road ahead of us..we knew that, but hearing it is like a punch in the gut..and heart. Knowing how concerned she is with the growth of the disease is hard to get past, but we are pushing through.

We are exhausted, stressed on another level, scared to death, cautiously optimistic, but staying positive and keeping faith. It takes everything in us to remain positive and strong, but there is no other option. We have FAITH.

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Shanda Hayden 20 Comments

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Cole Hayden

July 15, 2016

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