Monthly Archives: March 2014

EEG Update

We received a call yesterday about the EEG results.  In almost eight hours of monitoring, they weren’t able to capture a single seizure.  This is a HUGE praise!

Despite this really great piece of news, Chase’s EEG is still “abnormal”.  The person I spoke with said that some of that is to be expected as parts of Chase’s brain were removed in surgery – because of this, his brain will always read “abnormal” these types of tests.  However, there may be an aspect of the results that cannot be attributed to previous brain trauma.  This is the part that was unclear.  We have been told that this will be something to discuss in further detail with the specialist at our meeting in about three weeks.

We are so thrilled that there were no seizures, but I spent a good part of yesterday afternoon just working through the word “abnormal“.  As I’ve recently written, this concept of “normal, but not“, has been a difficult paradigm to optimize.  Hearing the word “abnormal” yesterday afternoon just brought back all the questions and many of the frustrations.

We look forward with hope to this meeting in a few weeks and acknowledge that there is never a time that we’re not in desperate need of moment by moment grace.

And Chase is always and forever Chase – about once a day, he turns to us and says “Hey! Remember the stickers on my head? I did that the other day and I was so, so, so brave!”

~MbM~

Chase and Aidan after walking with St. Baldrick's in Saturday's parade

Chase and Aidan after walking with St. Baldrick’s in Saturday’s parade

The Gift

The setting Fall sun cast a shadow across the dashboard of the car as I sat in silence with the phone to my ear.  “I don’t know if you’re familiar with them, but this is what they’d like to do…”  The words of the financial planner rang in my ear as I tried to absorb the information she went on to lay out before me.

A GIFT.

The professional athlete and his wife had heard of Chase and his treatment and they wanted to help.  They knew what God had asked them to do and they did it.

Stunned, I called Bob and imparted the information I’d heard.  We sat in staggered silence on the phone.  This gift would change the course of our lives and our legacy forever.  I have to go.  I was late.  He agreed.  We’d talk later.

I had been in the car on the way to a dinner at the pastor’s house and as I walked to the house, I encountered the pastor walking a child in from soccer practice.  Immediately, unable to contain it, I blurted the news of the gift.  What do we do?  What do we say?   Mere words don’t do this gift justice.  And then he proceeded to smile and tell me to stop for a moment and see it for what it was – a tangible picture of God’s grace.  A gift so big, so undeserved, so beyond the ability to describe that it changes the course of our lives and legacy forever.

That day was a Fall ago now.  Time has passed, Chase is still with us, and we’ve met the givers and found great encouragement in our common faith, and the pastor was absolutely right.  As we move through life, changed because of the gift, freed because of it, given great ability because of it, the gift stands as an always reminder of grace in our hearts and minds.  And it has changed our lives forever.

These words have taken me a full 16 months to write because words still elude me.  Every attempt still falls short in light of the incredible blessing.  All I can say is this:

Oh, the depth of the riches and wisdom and knowledge of God!  How unsearchable are his judgments and how inscrutable his ways!  “For who has known the mind of the Lord, or who has been his counselor?”  “Or who has given a gift to him that he might be repaid?”  For from him and through him and to him are all things.  To him be glory forever.  Amen. Romans 11:33ff

Moment by moment.

~Dedicated to the givers of the gift~

 photo copy 2

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. 

 

Finding Purpose: The Normal, Not-Normal Life

Broken beauty

Broken beauty

For some time now, these words have refused to come out.  The unknown, undefined place we’ve inhabited post-treatment has been crippling to my writing because I haven’t known what I’m writing about any more.  I was reminded this week that life is a journey and my heart is to honestly chronicle my way through it – whatever it may bring.   With that reminder, the words finally came and I could write out the struggle.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.  Jeremiah 29:11


“His counts are in normal range”; “You can return to normal activities”; “You should treat him like a normal boy”; “Not being in this hospital is good…it’s normal”… Normal, normal, normal

We keep hearing this word; they keep using this word; but to quote the great Inigo Montoya: “You keep using this word.  I do not think it means what you think it means.”

I look at Chase – at the scar, at the hair that’s trying to grow past radiated skin.  I watch him – how he struggles to hear a whisper even when we speak directly in his ear, how his mood swings, how his words jumble and garble.  Excuse me for sounding skeptical, but this is normal?  Do normal children have to have medical clearance from teams of specialists just to get their teeth cleaned?  (a true story of how several hours in my week went down)

I remember clear as day – sitting on the couch in his PICU room in the dawn before brain surgery and wishing for normal.  I confronted that wish and had to put it aside.  “There is no normal.  There is only Christ.”  And now normal is being handed back to us…and it’s terrifying.

My brain whispers that Chase could have been dead.  He could have been unable to walk, unable to speak, unable to do a hundred other things.  My thoughts turn to all that could have been and all the cancer children who have stopped breathing since Chase was diagnosed and I can hardly breathe myself.  The anger and frustration flares… How dare I ask where we are and where we’re going?  How dare I?  What right have we to wonder?  Is it not enough that we’re the ones who still breathe?

But we do wonder.  It feels thankless and rude, but we do.  We are beings created for a purpose and we chafe and fight against this normal not-normal life that at times feels so purposeless.  We no longer belong to the world we inhabited pre-diagnosis.  Those people have been ripped apart and rebuilt time and again with new eyes, hearts and focus.  But we no longer belong to the world we inhabited during treatment.  How do we use our changed lives?  Where do we belong?

The truth is that I don’t know.  I believe that the answer is something that is still unfolding.  And while it unfolds and we wait with hope… this:

For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.  Ephesians 2:10

We were made by God for good things.  Good things that He planned for us to do long before we ever breathed.  He planned them for us, so we can’t miss them or mess them up.  He planned them.

Breathe.

There is a plan.  It won’t be normal, but it will be good.

And we’ll take it moment by moment.

 

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

 

Throw Back

Throw back…to the days when this covered his face and screwed his sleeping head to a radiation table.  Throw back…to the 33 days when “X” marked the tumor spot and he’d whisper “I’m so brave” with a sigh as he sank into oblivion every morning.  The mask has no earthly use now, but I keep it because I can still see the outline of his precious little face and every time I look at it, I’m reminded of what an incredible, awful, and somehow amazing season that was.  … #tbt

photo copy 3

 

-MbM-