Tag: cancer

Of Spinal Fluid And Really Good Days

Heart in my throat, I looked at the doctor standing masked and gowned by the foot of Chase’s hospital bed. “Have you heard anything on the spinal fluid yet?”

Slowly, she lowered her mask and I could see her huge smile…“Yes. The fluid was negative.”

In shock, I asked her if she was sure it was Chase’s fluid as Bob laughed quietly from his place across the room.

Chase’s spinal fluid–this fluid that has been positive for cancerous, atypical and abnormal cells from day one–is weird cell FREE!

There is a cautious moment to this, as it does not mean that Chase is cancer free.  The true State of Chase is something that will be unknown for a while, hopefully only until his evaluation at the end of the month.

There is still a long road ahead for this little one. He’s only 14-16 weeks through a 51-54 week chemo protocol … Encouraging news to the little boy who burst into tears as he thought clear spinal fluid meant no more “fishy hospital.” (Oh, Chase…)

So, as I’ve written many times, we don’t know what’s ahead, but …
Today was a REALLY GOOD DAY.

Whatever may pass and whatever lies before me, let me be singing when the evening comes. Bless The Lord, O my soul!

Moment by moment.

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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…

12.12.12

This was my favorite moment of Chase being born and Chase’s favorite picture of his birth because it shows that I too have had an IV in my hand

As I sit here contemplating 12/12/12 and the third birthday I have, at some moments, thought I wouldn’t see, I am overcome and don’t feel like I can adequately summarize this moment in Chase’s life, so here is what I would (and probably will) say to him:

My Dearest Chase,
Today you are three years old and even if you aren’t cognizant of it, this is a big deal.  Your Daddy and I have often wondered if you would live to see this day – and that was even before your “baseball“.  Since your “baseball” and your “cancers“, there have been many more minutes that we have stood by your bed or talked with your doctors and wondered if we would get to celebrate this day with you.  …and here you are!  Not only with us, but finishing all your brave days in your “spaceship“.  As we often whisper in your ear before you take your nap with the doctor: “Be strong and of good courage, for the Lord your God is with you.” (Joshua 1:9)
Son, Daddy and I are so proud of you.  You’re our favorite, bravest Chasey Bear in the whole world!
Love,
Mommy

Happy 3rd Birthday, My Precious Chase!

Joy comes in the morning… (I have much more recent pictures, but this is my favorite – that first smile post-surgery is a perfect summary to this little one’s year)

[Chase’s dictionary of terms: “baseball” = the tumor site (with it’s baseball-like stitching), “spaceship” = the proton radiation room]