Tag Archives: tests

To Channel The Fight

Some time ago, I wrote about a very painful, very personal aspect of Chase’s post-diagnosis life: his aggression.  At the time, it mixed with low blood counts, treatment pain, and seemed to be a general side effect of being a small person thrown into a world of superhuman tasks.  But then the treatment went away, and the counts went up, and he grows stronger and healthier all the time, and the aggression stays.  In fact, it’s intensified as his strength has grown.

Chase has always been a strong fighter.  If I’ve said this once, I’ve said it a hundred times.  This, we know.  But, at times, there seems to be something other than personality fueling this fight.  We watch him completely, violently lose his temper and then start crying because he knows he was wrong…only to lose it again a moment later and start weeping all over again saying, “I don’t want to be angry anymore! I’m so sorry!”

Our search to help Chase has led to the discovery that his anti-seizure medication is known for causing outbursts and aggression as potential side effects.  In the months following chemo, we’ve spoken many times with many sources about his behavior and after having diligently pursued natural and behavioral options, have finally come to the point of doing an EEG.

So, on Monday, Chase will be going to the hospital for 4-6 hours of continuous EEG monitoring.  The goal is to see how his brain is doing and to determine if switching his anti-seizure medication – or weaning him off of it entirely – is a possibility.

A very real concern is that Chase’s brain -which has never not been protected by an anti-seizure drug- would, if weaned, react to the trauma it went through almost two years ago (and the scar tissue around the tumor site) and that such a status change could actually cause seizures and more brain trauma.

We’d greatly appreciate prayer for wisdom and discernment – for us as Chase’s parents, as well as his doctor to know what is just Chase’s personality, what is a side effect of brain trauma, what is this medicine, and how much, if any of it, can be fixed.

Chase was born to fight.  Our desire as his parents is to optimize his life on this planet and provide an atmosphere in which he’s able to channel the fight.

God, give us grace to accept whatever is ahead on this particular road…

Moment by moment.

The last continuous EEG - July 31, 2012

The last continuous EEG – July 31, 2012

 

Do You Hear What I Hear?

Wires in his ears

Wires in his ears

I’ve written about Chase’s lack of hearing before.

The tiny room…

The sounds I can hear that he doesn’t…

The frustration in our home as he calls and calls desperately across the house, never once hearing us answer…

Since his doctors surgically cleaned out his ears, the intense frustration has seemed to improve a little.  Now, he seems to be able to hear a voice from across the room, but perhaps that’s just wishful thinking on our parts.  After all, we know the collateral damage we signed on for when we started this journey.

Stimulating his hearing through his skull - fearful and wonderful

Stimulating his hearing through his skull – fearful and wonderful

And yet…

Today, as we wrapped up the audiology exam, she sat down and smiled: “I don’t usually get to tell people this, as it often goes in the other direction, but…his hearing has actually improved!”  The procedure performed in November (when he was under anesthesia for his MRI) was successful and his hearing is within normal ranges in several areas.  His high frequency hearing is still classified as “poor“, but even that has improved from the “unresponsive” conclusion on his last test.

Even as we both celebrate these results and wonder about the results in six months time, I am reminded again of these words…

Chase doesn’t need perfect hearing to hear the voice of God.

Thankful.

Moment by moment.

He feared the giant headphones and we told him that he looked like an airplane pilot :)

He feared the giant headphones and we told him that he looked like an airplane pilot :)

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.