Cancer – Page 36 – CHASE AWAY CANCER

Deaccessed

Today was our second day of post-chemo follow up. Chase has made a lot of progress and today turned into a very big day when his neuro-oncologist suggested that Chase may have “weaned” far enough off of his IV nutrition (down to 10 hours) and may actually be eating enough to stop using the IV bag altogether.

So today, for the very first time ever, Chase was “deaccessed” (the needle and dressing were removed from the port in his chest) while in the hospital and he walked away a free man! He has not been without visible “hardware” in either his chest, arm, or hand since August of 2012 (other than a very brief 24 hours in July when he got to go swimming). This is a big step and he is very excited! Without the bag, he won’t have a needle taped to his chest and he will be able to swim, or take a bath, or go places without a “crash kit” on hand. Please pray for Chase as his body transitions back to sustaining itself without assistance. He will continue to have weekly labs taken to monitor his progress for at least the first few weeks. And so, we move forward…

Moment by moment.

A needle-free chest pockmarked with central line scars. Beautiful battle wounds.

Clear

Clear. Clear! The MRI was clear!!

Brain…clear. Spine…clear. And the areas of fluid they’ve been watching? …smaller!

Chase’s doctor said that the images were perfect and exactly what they’d hoped for.

It’s official. Chase has finished his chemo therapy with no signs of cancer.

How I wish his scans would stay like this forever! They may, and they may not… but either way, they are clear right now and in that we have so much joy.

Last night, I wrote about a second day of testing. This has now been moved to next week due to some scheduling issues and the post-procedure counsel of the ENT.

We’d so appreciate continued prayer for Chase, especially tonight as it’s been a long day and the anesthesia was rough. He’s having significant ear pain – a common side effect of the procedure – which has him screaming at anything pitched over a whisper in the house right now. We have been told that it will pass in the next 24 hours and we pray that’s true.

Thank you for coming on this amazing journey with us. God is good.

Moment by moment.

I couldn't resist adding this picture as well. It takes a pretty amazing dad to escort his child into the OR *and* rock the outfit while doing it. :) — I couldn’t resist adding this picture as well. It takes a pretty amazing dad to escort his child into the OR *and* rock the outfit while doing it. 🙂

Of Tests, Hot Chocolate, and Blessings

My apologies for the recent lack of blog updates. I will get to the last few weeks another time. For now I’d like to update on this week alone.

In the morning, Chase begins the first of two full days of tests and appointments with his doctors for post-chemo evaluation. We’d greatly appreciate prayer, especially in regards to the full brain and spine MRI and the potential ear surgery which will collectively have him under anesthesia for 2-3 hours tomorrow afternoon.

We consider ourselves incredibly blessed to have made it to this point… to even be discussing a “post chemo” life… what a gift!

Right now, the snow is falling outside and because many aspects of Chase’s traumatized brain are still breathtakingly sharp, he reminded me that I promised -last year- hot chocolate and “The Polar Express” when the first snow fell. So the siblings lie snuggled on couches in the dark, gleefully starting the holiday season too early. But really? Can one ever start too early? It’s the time that we set aside to be thankful…for Jesus, for love, for life. There is no time limit on those things. And while a hot drink and Christmas movie hardly seem focused on such great themes, the very opening sounds and smells threw me back in time a year and the radiation burns and the cancerous spinal taps and the crushing knowledge that the season of 2012 might be the last.

There will never not be apprehension about all the tests and what we’ll hear on days like tomorrow, but right now, in this moment, I’m reminded that we’re incredibly blessed.

Moment by moment.

In the dark, a bald head snuggles in front of "The Polar Express" — In the dark, a bald head snuggles in front of “The Polar Express”

Come With Us: The Last Spinal Tap

I’ve written many times about what it looks like to be with Chase as he goes into surgery, and now, come with us, if you will…

The pre-op and the conversations, the moment they take him away from us, the post-op exams and the deep, deep sleep… And through it all, Chase’s incredible bravery.

Come with us for the 16th and last spinal tap*…

Moment by moment.

[music: Sleeping at Last, “Next To Me“]

*took place, Monday, October 14, 2013

Fourteen Months

Once again, I sit, wrapped in blankets on the hospital couch, watching the darkness turn slowly to dawn over the city, thinking through the day ahead.

Just like the morning of the brain surgery…

Just like countless other mornings...

My thoughts are interrupted as Chase stirs and cries out; a small reminder that he’s under the chemo and today’s end is not really the end.

But I sit and pray that God would allow me to weigh this moment, this day and remember it always. Today, it will be finished.

Finished.

Fourteen months to the day, this grueling, “not advisable for small children“, “hardest thing you’ll do“, “best chance of survival” chemo therapy plan will be done.

As I’ve written over those fourteen months, there have been many times I’ve been next to the hospital bed. In those moments, we process and weep in our parent hearts…but it’s he, Chase, who has had to physically bear the weight of fighting for his life! And fight he has. The numbers alone speak of the battles…

The inpatient days, the days we were admitted number 129. This number does not include ER visits, MRI days, clinic days or all the other days spent in the infusion center of the hospital for chemo and blood. No, the number of days Chase lay his head down for the night alone in this place are 129. Were I to add the others, the number would close to double.
There have been 37 bags of platelets hung and 26 of red blood to date (there will be more…). There were 33 days of radiation and 15 central line placements, repairs or removals. There have been 9 different chemo therapy drugs, sometimes as many as 5 at a time and 16 spinal taps. And I could not count the sedations, labs, ECHO tests, audiology exams and all the other little things that accompany these numbers. There have been too many.

If I know anything of my son and this disease, this will not be the last time I sit here in the dawn, and many of the numbers I just wrote will continue to grow even after the official treatment stops, but for right now, I sit, and I pray that God allows me to remember this moment always because today, it will be finished.

God, we are in your hands and in that we rest!

Moment by moment.