Monday, June 15, 2015

Prognosis

Several people have asked recently about Carey’s prognosis and what lay ahead as far as treatment. For now, we don’t really know – either of those things.

When we first met with Carey’s oncologist back in August last year, he told us that based on statistics, the survival rate for metastatic Ewing’s sarcoma was somewhere around 30%. That means about 30% of people will live at least five years after their date of diagnosis with no evidence of disease. Those people are considered “cured” – even though there’s technically no actual cure (as of yet) for metastatic cancer. We didn’t focus on that number – we focused on Carey’s treatment.

When Carey was in the hospital this past April we had another sit down with his oncologist to talk about his prognosis at that point. There is no number he could give us – the 30% survival rate is based on patients who complete 17 rounds of chemo. The only thing he said was that Carey’s chance of survival had “significantly decreased” with his body not responding well to the treatment. He said he had no idea when the cancer would start to grow and spread – only that eventually it will.

We still have hope. I don’t think any of us can really live without hope. I don’t mean “live” as in you have a heartbeat and are breathing – but to really live – with meaning, and purpose, and love – to thrive. I’ve been thinking a lot about that lately. At first we put our hope in the treatment. It’s worked to an extent as it’s kept the cancer stable (no better or worse than when he was diagnosed), but it hasn’t cured the cancer as we had hoped. So what now? Where does our hope lay now? Simply more time? This is what we’ve spent the past couple of months trying to figure out, and the conclusion we’ve reached is this:

My hope is built on nothing less
Than Jesus’ blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus’ name.

When darkness veils His lovely face,
I rest on His unchanging grace;
In every high and stormy gale,
My anchor holds within the veil.

His oath, His covenant, His blood
Support me in the whelming flood;
When all around my soul gives way,
He then is all my hope and stay.

On Christ, the solid Rock, I stand;
All other ground is sinking sand.

These words express the hearts of Carey and I perfectly. They are lyrics from an old hymn, “My Hope is Built on Nothing Less” by Edward Mote. Every time I start to wonder if I have any hope left inside of me – God brings this song to my heart – every, single time. I hadn’t heard this hymn in several years so I had to look up the lyrics online. It’s amazing what God uses to speak to us.

Carey and I try to read the Bible together as much as possible because it’s another way that God comforts us and speaks to us. While reading through the book of John a phrase caught our attention. In both John 7:30 and John 8:20 it says, “his hour had not yet come” – speaking of Jesus’ appointed time to die on the cross. We all have an appointed time to die, and if you believe in God’s perfect plan than you can rest assured that appointed time will come no sooner or later that it’s supposed to.

No matter what any doctor says to us we fully believe that Carey’s “hour” will not come until it’s God’s appointed time for him. Same with me, and same with our boys. That’s simply our faith.

It’s not my intention to be preachy in any way, and I am far from having all the answers. A year ago today I probably wouldn’t have posted anything like this. But this experience has drawn Carey and I closer to each other, and built a faith in us that neither he nor I could have imagined. I would regret not sharing these things with you all.

So currently, Carey is being treated by a palliative care doctor who is helping him figure out how to manage pain and the after effects of treatment. His body took one heck of a beating and it’s going to take a while to recover – he struggles with fatigue and nausea. Only you momma’s out there will be able to relate, but his symptoms are very much like the first trimester of pregnancy! He will continue to get scanned every three months, and it will simply take some time for his body to recover.

In the last blog post I mentioned a possible different regimen of chemo or a clinical trial. Chemo, no matter the regimen, seems a bit unthinkable to us at this point, but nothing is ever off the table. It’s not in the near future though. Carey will qualify to enter into a clinical trial if/when the cancer starts to grow or spread. It would be really neat to see him be the recipient of a ground breaking cancer treatment, but we hope that is in the very distant future. “Stable” is what we want to continue to hear – and “miraculous healing” is still our fervent prayer!

And for a quick family update: Eli’s still loving school and is transitioning classrooms right now. We’re so proud of how he’s growing and learning. He’s faced so many challenges in the past year and it’s shown, but he’s made some remarkable strides forward in the past couple of months.

Carver is walking across the living room floor like it’s nothing! He’s a bundle of love, and his joy is an amazing gift to our family. And he loves cheese puffs.

Carey has completed his resume and will start a job search as soon as his symptoms start to subside. He’s looking forward to finding something along the lines of a Training Coordinator/Manager. I’m biased, but there’s no doubt he’ll excel in whatever position he lands in. It’s just what he does =)

And for the first time in a year and a half – we are going on vacation!!!! We are SOOO excited to get away and just enjoy ourselves! We get to spend time with family and friends, and best of all we get to celebrate the love of two of our favorite people! My sister is getting married to one awesome dude and we are over the moon happy for them =))

So cheers. Cheers to love, hope and summer time fun.