grace – Page 5 – CHASE AWAY CANCER

What’s Next?

We have had the most wonderful break over the holidays! In truth, the longest break Chase has had since being diagnosed. We’ve completed 14-16 cycles of chemo and 30 days of radiation.

So, now what …?

At the end of January, there will be an official evaluation to determine whether this treatment is working. Right now, Chase’s brain is still too swollen from radiation to be able to get a good “read” on how things look. However, we will have a small preview of the direction things are headed…

On Monday, Chase will be admitted to the hospital for three days of chemo which get started with a spinal tap and interthecal chemo (they inject it into his spine). When they inject the chemo into the spine, they also remove a small amount of his spinal fluid and test it for abnormal or cancerous cells. So, even before the big scans and tests at the end of the month, we will probably have an idea of what’s worked based on the content of the spinal fluid.

These evaluation sessions are …I can’t even think of an appropriate word to describe them… important to say the least. These are the times where we will sit down and talk through all of this working…if we will continue on with the 54 week chemo protocol, or try something else. These are the times that we will confront this ugly and stubborn cancer in the face and begin to know who is going to win. As you can imagine, these are the times we simultaneously hasten and dread with the question of which is worse – the knowing or the not knowing?

“I wait for the Lord, my soul waits, and in his word I hope.” Psalm 130:5

And so, we wait with hope…

Moment by moment.

2012: In Our Own Words…

Christmas 2012

Looking back at all that has happened this last year, I asked everyone in my family to do a little summing up – Here is my family in their own words on 2012…

Karsten (1): [grunted and walked away]

Chase (3) [thinking he’s writing an e-mail to his hospital, which he’s never done and is unlikely to do anytime soon]: “The cancer is still running away from me because it wants to hurt me, but I am very brave. (breaks into song) God is near me, God is near me, all the time, all the time!”

Aidan (4): “I like when Christmas comes…and I like Uncle Trevor…and I get sad when Chasey hits me…but then we make it right and that makes me happy again…and Mom, when are you going to get out of my room?”

Darcy (6): “Some days I really want to go to my home and be back with my family when Mommy and Daddy don’t have to go to the hospital anymore and be on the phone with doctors all the time, but I’m very happy that I can be off school this week and that we can be together as a family.”

Bob: “If I could use one word to sum up this year, it would be ‘DIFFERENT‘. In many ways, I worked, traveled, wrote and read as in other years, yet this year was profoundly different with the cancer diagnosis. It’s ironic how the normal and the very abnormal go hand in hand.”

Ellie: I think if I also had to find one word, I’d choose ‘BLESSED‘. Never have I been so aware of all that I have and all the amazing people around me.

On that same subject, I’d like to take a moment to say thanks. The simplicity of these words can’t possibly encompass what we feel, but on behalf of Chase and our entire family: thank you. Some of you I know personally and some of you I may never meet, but I so wish that I could have the chance to sit down with each of you face-to-face and tell you how much all of the prayers, encouragement, gifts and service have meant to us. We are so blessed by you in ways you cannot even imagine. THANK YOU.

Truly He taught us to love one another; His law is love and His gospel is peace; chains shall He break, for the slave is our brother, and in His name all oppression shall cease.
Sweet hymns of joy in grateful chorus raise we,
Let all within us praise His holy name;
Christ is the Lord, Oh, praise His name forever!
His powr and glory evermore proclaim!

Knowing The One who heals all and frees all is our true and constant comfort in this season and always.

Moment by moment…

In The Dawn Once Again

It’s Monday morning and we are in the dawn once again.

Today, Chase begins radiation.

Though I cannot find the words to adequately describe how I feel about this, I know that God has been with us every step of the way and will not leave us now.

Chase, we’ll again see you on the other side.

From the first step on a new path…

Moment by moment.

First Year

Happy first year to our precocious, unflappable boy. We love your smile and your cackle-laugh. We love your rambling toddles and your grunting attempts to speak.

We are so excited to see who and what you become as you grow, and we are so thankful that you came into our lives. Happy Birthday, Karsten!

Day Five

Today is day five of Chase’s first treatment. Every time they’ve hung another bag or started a new infusion, I find myself tensely thinking “Wait for it, this is the one that is going to make him code…”. (sidenote: a chemo treatment room is a great incubator for illogical fear)

Each day has brought new information and and sometimes overwhelming experiences…

Reality: this chemo is so powerful that we can’t even change his diapers without wearing gloves.

Reality: my son has a surgically-placed double hose into his chest (which will remain with him for the duration of his chemo) that I need to learn how to clean and care for.

Reality: he hasn’t eaten almost anything in over 48 hours and is on a constant IV for his nutrition.

Reality: one of the chemos is making his jaw hurt to the point where he cries out anytime he opens his mouth…even in his sleep.

I want to keep writing “reality” and listing all the other things that are bothering me or that make our life sound very extreme and dramatic, but just now, I need a reality check, and since you happen to be reading this, you are coming along with me.

Reality: my son is in the final day of his first round of six chemos and he hasn’t coded over any of them, in fact, his nausea is mostly managed by a couple anti-nausea meds and the nursing staff said he is doing incredibly well given his difficult protocol.

Reality: we live close to one of the top treatment hospitals in the nation in an age when they know what AT/RT is and can treat it (even as little as five years ago, this cancer was still fairly unknown)

Reality: “God is always doing a thousand things when he does anything. And we see but a fraction.” John Piper