October 19, 2016 ~ Plan this week

Sharing our plan for this week..

We checked in to the hospital yesterday for the 2-day chemo that was initially scheduled for this week and more tests.

Our doctor called us Monday evening as she was still contacting others and working on a new plan. One of the partners mentioned, as a long shot, that maybe it would be worth exploring a possible infection through the eyes that could impact the brain. Again, a long shot but worth checking.

So they scheduled him for a spine MRI and spinal tap for yesterday indicating that there would likely be a correlation with the spine/brain regarding cancer/infection. The hope, of course, would be not to see any cancer spots on the spine. And if so, then that's likely what is indeed on the brain. In their discussions they felt that there would be no reason to hold off on the scheduled chemo while still exploring/consulting other opinions, etc. since this chemo has been working on things. And, at least 3 of his current medications are used for treating brain cancer. Recall, Cole is on a very aggressive chemo treatment plan which we are glad we chose that plan. This summer they shared the risks and that his body may not handle it, but with each round of this chemo he has gotten better. These past two weeks...have been amazing.

So we did the spine MRI and then his doctor did the spinal tap yesterday. He had an EKG last night and ECHO this morning which needed to happen before starting chemo this round because it's the heavy duty mack-daddy chemo that crushed him last time. The optometrist wasn't able to make it yesterday so he'll have his eye check today. However, we already pretty much know his eyes will be OK and there's likely not an infection... because....

We met with our doctor this morning, and as anticipated, he has cancer on his spine as well as in his bone marrow. F'ing dammit. So, we'll go ahead and do the eye evaluation to "officially" rule out infection, but we know it's not that. Still waiting for all final results of the spinal tap, but preliminary things show some abnormal cells so we expect to get bad news "officially." Some things initially resemble leukemia, but his other cancer cells don't have the leukemia markers.

Since he hadn't had an MRI on his spine or brain prior, we don't know if these have grown/spread since there is no comparison. We could scan again in a couple of months as 4 weeks would probably be too soon. So, technically, there is a chance there was something there that didn't show up on the last PET scan...and technically, these spots could be smaller. Or bigger and have spread. We don't know either way. There are just numerous spots on his brain..I can barely type it and can't even provide a number.

Cancer, especially sarcoma, is an evil, awful asshole. This disgusting beast has spread to places in such a way and didn't ever "mature or develop" enough to be called something other than undifferentiated sarcoma so there isn't an exact recipe. Everything that Cole has is so f'ing rare that it's making it so challenging to know how to cure. Yes, I'm saying the "F" word all the time..

Things are on their way to St. Jude, Boston Children's and MD Anderson and our doctor has been emailing and calling them all herself to discuss and try to expedite. We'll use whatever connections at those places people may have as well.  We've ordered copies of his medical records & scans so that we can send out as well. We've had people reach out to us that "know someone somewhere" and as I said in my previous post, we are open to any and everything. Our doctor is supportive of this as well and will continue helping us "filter" or explain things rather, as we ask about places/doctors. It's overwhelming to do it all on your own and she, like us, welcomes other opinions as she's done all along and is so very open and easy to talk to and supports us.

We've made it clear to her and we're on the same page as her, and will be clear to other facilities/doctors, that we are looking for CURATIVE OPTIONS, not just "slow things down" or "improve quality of life" options which is what many offer. Apparently you have to specifically say that you want curative options. WE WANT TO BE AGGRESSIVE. I don't know how anyone wouldn't, but apparently many families don't choose that option. Our doctor is on the same page as us, and feels this "aggressive approach" is exactly what she would do for her daughter. If there is ANY possible option for this sweet baby, we WILL pursue it. Period. He can handle this, he's stronger than anyone could imagine.

So chemo starts today for two days. This round includes the nasty one that crushed him and he had to be readmitted with the level 3 mucositis and such. So we have to be prepared for that again this time since each round gets worse. His last 5-day round went so well and we didn't have to come back..side effects were minimal. He hasn't had this tough medicine since his last 2-day chemo. Again, side effects typically take around 7ish days to start so we'll see how this week goes. If all goes well for these two days of chemo we'll hopefully go home Friday. Then see what happens from there.

We still do NOT plan on sharing this with Cole. We need his continued strength and courage and we don't want anything to detour that. We need him to keep fighting and we will keep fighting. We will NOT give up.   We can't.   We won't.    Miracles happen and we have to believe.

Thank you for your continued prayers and support. We appreciate you all.

#TeamCole🎗