The Past, The Present, And A Virus

Chase is not known for sleeping.  Since the time the tumor first started growing when he was two, he often struggles to fall asleep at night and wakes long before the sun. From the moment his feet hit the floor, he’s going, doing, and often messing around.  

When he got off the bus on Tuesday afternoon, he didn’t ask to play outside, but came in quietly, telling me he loved me and missed me.  Don’t get me wrong – a docile, loving Chase is wonderful, but it’s also unusual.  Most often, he walks to the door fighting to stay outside with a verbal list of all the things he wants and needs to do as he hits the front stairs.  That night, as we sat down for family reading time, he laid his head on my lap and fell asleep . . .and then he slept ’til 6:30 in the morning.  When he woke, he did not speak much, but went back to his room almost immediately, laying curled in a blanket on the end of the bed. Within minutes, he was asleep again.

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My philosophy in a household of small children (read: boys) is “Fear The Silence” because it usually brings no good, and for Chase, this holds ten times as true.  He is never still unless something is wrong.  This child who sat at the breakfast table next to siblings without eating or talking – for twenty whole minutes – he looked like my child (only more pale), but I couldn’t find the pulse of his personality and that was terrifying.

Is there an increase in pressure within his skull?

Is something growing?

Is his speech changed?

Is he unsteady on his feet?

Does he seem cognizant of his surroundings and memories?

Could his hemoglobin have dropped?

Is he having any muscle tremors or signs of seizures?

Does his head hurt?

These are just a few of the well-worn panic paths my brain circles as I move into the routine of checking his forehead, looking down his throat, and asking where it hurts.  

It’s quite likely that Chase was just under a hint of a virus.  That’s another part of who he is.  The other kids get crabby or possibly lose their appetite when they get sick, but Chase . . . Chase gets “neuro”. His speech and sleep patterns change and he often grows even less tolerant than normal – all over something as simple as a runny nose.  

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And me? I worry.  That is my damage. I may stand still and breathe deep, but in my mind, I’m all-out sprinting across nightmare trails.  The years old sentence: “There’s a large mass” opened the gates wide to every conceivable worry – and often with good reason.  So once again, I ripped into the past to justify my present and by 9:00 in the morning, I was mentally on the ground, gasping for a saving thought or grace.

“Be anxious for nothing” – Yes, it’s in the Bible and sometimes I don’t know why because sometimes it feels unmercifully impossible.  But like every other word in there, it has purpose and it cheers me greatly to think that God put it in there because He knew we’d struggle.  And how I struggle.    

This morning, Chase beat the sun by a good half hour and was back to his doing, going, and messing self, boarding the bus with a smile.  It was most likely just a little virus.  

And for me, there’s the quiet, hard knowledge that there is no end in sight. At this point, the only best cure for cancer and worry is heaven. I’ll probably go back to his diagnosis every single time something is even slightly off and I’ll worry myself up until I’m panicking on the ground again and hate myself for it.

And then I’ll need to hand it over once again, give it up to God who knows and loves, and wait in the grace of the . . .Moment by moment.

“Surely your goodness and unfailing love will pursue me all the days of my life.” Psalm 23:6a

To Channel The Fight: Follow Up

The brothers eat gummies and pick late night movies to help keep Chase awake
The brothers eat gummies and pick late night movies to help keep Chase awake

Yesterday’s EEG -a test we were told would take 4-6 hours- lasted a full 8 hours.

This face. For an easily over-stimulated child, the wet/cold electrodes all over his head were very difficult at first.
This face. For an easily over-stimulated child, the wet/cold electrodes all over his head were very difficult at first.

For Chase, who was being video-monitored (in addition to the electrodes covering his head), this meant about a 2 foot range of motion on the bed…for 8 full hours.

Chase.  Being still.  For 8 hours.  Ha.

Sleeping peacefully. An answer to prayer as sleep is an important component of the test.
Sleeping peacefully. An answer to prayer as sleep is an important component of the test.

Actually, he did incredibly well considering the circumstances.  It was a grueling day for him and he managed it with a great attitude.

There are few things that a lollipop and coloring time won't make better...even a head full of electrodes. :)
There are few things that a lollipop and coloring time won’t make better…even a head full of electrodes. 🙂

We haven’t done this test since the initial days of his diagnosis – haven’t kept him up late into the night since two days before we found out he had a tumor and I was amazed how going through the ritual again brought back the memories of those sleep deprived, scared hours when we first felt the dread of some unknown thing being very wrong with our little boy.  And then the memories passed and we had a great sense of peace and even joy in the middle of the long night and day.

We hope to hear some results within the week and will be able to discuss a plan of action with the epilepsy specialist in early April.  Thank you for your prayers.

Moment by moment. 

 

Facing A Fear

Chase’s doctor once told us that most parents know it’s time for more chemo when they see their child looking better, eating more, and having more energy.  Proving this theory, Chase’s Thursday lab results were really encouraging which means we are scheduled to go back to the hospital on Monday.  It’s time.  This particular round of chemo includes several days of being admitted to the hospital as well as a spinal tap under anesthesia.

You may remember that I wrote at one time about Chase’s vivid anesthesia memories.  Since that time, we have had really good experiences because he has been given a “forgetting” medicine in pre=op -while still with us- that relaxes him and saves him the memory of a sterile operating room and a mask over his face all without the comfort of mom or dad.

Because of some aspects of his new central line, Chase’s nurse will be removing the needle from his chest a couple of hours before he is scheduled for the spinal tap.  It’s a little tragic as there will be no shower or swimming pool to jump in and celebrate [children with the type of central lines he’s had until now can’t really bathe or swim], but mostly awesome as he has never officially been without his “tubie”.  However, there is a direct impact on the procedure.  The lack of needle in his chest means that there is no good way to administer medicine in pre-op, which means that Chase will go into the operating room by himself and be put under anesthesia while fully concious.

We have been talking about it every day.  How he will be a brave boy, and how he will take a deep breath and fall asleep, and even how -if he can be still- the doctors won’t have to hold him while they put the mask on his face.  He dialogues with us, and understands what he needs to do, but he is still very frightened.

Please pray for Chase on Monday, that he would be anxious for nothing and that God’s perfect peace would surpass and even confound all of our understanding about how Chase would most likely respond in that operating room. (Philippians 4:6-7)

This will be a big step for him and for all of us…but our God is much bigger.

Learning to let go… Moment by moment.

Free From The Sting

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As a Christian, Easter is one of the most important times of my year. It’s the season I set aside to celebrate what Jesus did for me, but this year is more precious as I consider how the events of Easter fit into our cancer world.

I believe with all my heart that Jesus is the son of God, that the Bible is true, and that the promises it contains are real and this is why I so often include verses in my blog posts–to remind myself of what I know to be true when my circumstances are overwhelming (which they often are). In those moments, I literally have the physical sensation of drowning.  Believing as I do doesn’t change the pain of cancer or anything else in this life, but it can and does change how I face the drowning moments.

Often, like the thief on the cross next to Jesus–not the mocker, but the other–the weight of life and pain (some self-inflicted, some not) closes in and I cry out.  And then comes the reply,

“Truly, I say to you, today you will be with me in Paradise.”

That’s it! This is the answer to the agony. The pain and suffering is only a season, because death is swallowed up in Jesus’ glorious victory and its sting is gone. One day soon I will be with Jesus in Paradise!

Because I know God made me, and I will be in Heaven with Him forever when this weary life is over, I am freed from the drowning to feel joy in sorrow and peace in chaos. Death may be sad, but it need not sting because this life is not the end, but the beginning.

In the midst of this cancer world, there can be incredible, inexplicable peace because my ultimate struggle has already been resolved. My sin was taken care of on the cross by God Himself! All that happens in my life is what He lovingly allows for His pleasure and glory. Someday I will be complete and lacking in nothing and with Him forever in fullness of joy.

This is my cancer foundation. This is my life foundation.

Moment by moment.

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Revelations 21:4

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…