Tag Archives: chemo

Abundant In Power

One year ago tonight, I sat on the side of our home church sanctuary, watching Darcy and Aidan finish their Awana year.  In my arms lay a limp and sometimes whimpering Chase.  It was the tenth day since his last chemo cycle and his counts were obviously plummeting; but masked, attached to his IV, too weak to stand and in strong discomfort, he refused to leave until he’d heard Darcy and Aidan’s names read for their awards.

When Darcy’s name was called at long last (as Aidan’s had been called several minutes earlier), he sighed, fussed, and begged to go home – his little body starting to burn with fever.  Within an hour, we’d be one our way to the hospital and late this night a year ago, he’d be admitted for many days to fight infection and the chemo toll.

I’ve been thinking of those year ago moments with him in my arms all day today.  And now, one year later, THIS…

Great is our Lord and abundant in power. Psalm 147:5

Abundant indeed that he who should have no memory can stand and speak, having memorized these words.  I stand in awe

Moment by moment.

 

One More: The Last…

Poison

This afternoon, I received the call I’m always waiting for – the first of the twice weekly lab results.

This afternoon, I received news I’ve been waiting to hear for 14 months – “Chase’s counts are coming back, and quickly.  We’ll repeat labs on Thursday, but barring anything really crazy, he should be ready to restart chemo on Monday. This is it!

This is it.  The last chemo.  The last spinal tap.  The last

A small part of me is choking as I’m writing “the last“.  The part of my brain that reads and absorbs cancer research is screaming “The last?  You know better than that! This cancer is never over!”

But tonight, for now, for next week, it’s the last.

Joy.

I can’t believe we’re actually at this point.  And for all the rest that we have yet to walk, we’ll take it as it comes…

Moment by moment.

It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

Two More

Chase’s counts are finally recovering from his last round of chemo!  Yesterday evening, we received word from the hospital that he has been cleared to come in on Monday.  His levels aren’t exactly where they should be, but are very close.  It is our hope that his Monday labs will reveal he’s fully recovered and that he can be admitted for the week.  We don’t hope this because we love chemo, but because Chase only has two chemo cycles left!  …and then he’s done!!

We would so appreciate your prayers as these last rounds are, in many ways, the most difficult.  The protocol doesn’t change, but his body is exhausted and each round seems to take it’s toll quicker and more painfully than the last.

Moment by moment.

My darling Chase

My darling Chase

 

Looking For Still Waters

Monday
With a long but encouraging clinic day behind us, I gently lifted Chase onto his hospital bed. We had just finished several rounds through the halls on the tricycle and he was finally ready to rest. After chasing him with a rolling IV poll and protecting/pleading for caution with his central line, I was also ready to rest. As I lifted him, his face contorted in pain and he let out a warning scream -I’d seen it a hundred times at home- the line was pulled tight and the IV tubing stretched from the pole to his chest. I quickly gave it slack and laid him down. He’s an active boy – this happens all the time.
Then he contorted and grabbed his chest, still screaming and crying – this did not happen all the time. With an all too familiar feeling of dread, I raised his shirt to see dampness around his central line dressing. Not again, please, not again.
The doctors and nurses confirmed what we feared. The line had been partially pulled from his chest when the IV tubing caught on the pole. With his new central line -a port- this wasn’t the same problem it would have been, say, two weeks ago – just remove the damaged needle and put in another one. The main features of the access are protected under the skin. It would have been so easy but for the chemo. There was chemo infusing when the needle moved and a particularly vicious one at that. Known for harming tissue and muscle; there was a small but very real chance that instead of going into the vein, the damaged needle had spewed this poison into the muscle around it.
For several hours, there was an intense spiral: immediately discontinue use of the port….apply ice…had we heard about the antidote?…IVs needed in his hands to keep him hydrated…surgery for a temporary line in the morning…and on it went. The door to our room was a constant portal to more poking, prodding, and bad news. Please God, no more
In the early afternoon of Tuesday, for the second time in about 24 hours, Chase was taken into surgery to place a temporary line. Moments before he went into the operating room, I received a text saying that a friend of our dear friend would be the nurse on duty in the room. I can hardly explain the encouragement it is to send your child into that cold, dark, unconscious place with a familiar face and friend at their side. A blessed moment in the chaos.
Despite the completed access surgery, there will still be more unfolding consequences of that malfunctioned needle. His hands are bruised and scarred from all the IVs, both failed and successful. He shows signs of the broken trust that comes from hours of people touching and hurting as they’re trying to save your life – anytime someone enters the room and greets him, he screams “No!”. The port must be left alone for at least a week -maybe two- to guard against the chemo damage, and when he leaves here, with his temporary line (in his upper arm…again), we will have to vigilantly continue to watch for the signs of that wretched drug doing its harm.
The irony of these last two days is that when you’re first given your child’s diagnosis, you expect that horrifying knowledge to be the all-encompassing stress and grief. In this moment, I can assure you that -at least in our case- it’s the little things, the daily, the back-and-forth, the multiple procedures. Those are the things that kick you when you’re already down.
But…
In this moment, he’s laying on the bed sleeping peacefully. …snoring, actually. His punctured, bandaged and tubed arm propped on pillows. His mouth relaxed from its pained expression.
Peace.

“He leads me beside still waters. He restores my soul.” Psalm 23:2b

Moment by moment.

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Catching Up On Perspective

As I break my non-blogging streak and think about the last several weeks, I find myself reflecting on perspective.  I will get to that in a minute…

On March 25, Chase had his ear surgery.  We don’t yet know how successful it was (he will have a follow-up hearing test at the end of May), but as we sat in post-op, he turned to me and said “Mom! I can hear!”  I cried.  His expressing this was all the more amazing because we had prepared him for putting tubes in his ears, but we didn’t set him up for any results.

That moment in post-op

That moment in post-op

PoisonWe finished four days of chemo on Thursday of that same week and just as we were so close to discharge that we could practically taste it (if hospital discharge orders were something you could eat), Chase spiked a fever and we had to stay for several more hours until the staff could better understand the cause of the fever.  Such are the hazards of having a central line.  We were finally discharged late that evening.  Chemo

Because we had spent those extra hours getting blood cultures and antibiotics started, when Chase spiked another fever around 3:00AM on Friday morning, it resulted in a simple phone conversation with the (incredibly gracious) oncologist on-call and not a summons to the emergency room.

That Saturday (the day before Easter), Chase again spiked a fever and by this time, his Thursday cultures needed to be redone and so we were sent to a local emergency room for blood work and more antibiotics.  A small part of me wondered why he never seems to get fevers in the middle of the morning.

Chase was mercifully discharged from the local ER around 12:30AM and we all got some sleep and were fever-free enough to go to church together on Easter Sunday morning.  One word: glorious…and refreshing…and encouraging (Okay, more than one word…because it really was that precious).

Happy Easter

Happy Easter

As we drove home from church, I glanced at my phone’s call log and saw the (way too) familiar area code…I had just missed a call from the hospital.  “There was a bacteria found in the culture from last night.  It’s in both lines and it’s growing fast.  I’m not saying you have to drop everything in this moment, but we need you to get Chase here sooner than later…and make sure to pack…you’ll be here overnight.”  …and just that quickly, the holiday was over.  We’d managed to stay out of a hospital for a whole twelve hours.  As we pulled out of our driveway minutes later -still in our Easter finery with our hastily packed bags- and we waved goodbye, I felt a weight descend…it shouldn’t be like this.

In the ER on Easter

In the ER on Easter

Chase cleared his infection (the origin of which was never completely known) and we were discharged within a couple days as he had no more fevers.  In fact, he was the only one in our family who stayed healthy as all the other kids went down with a high fever virus that lasted for several days.

During the same period, Chase’s counts dropped from the chemo and we were back in the day hospital for transfusions.  Chase was in isolation, but did have the privilege of meeting Chicago Blackhawks captain, Jonathan Toews.  Chase tried to offer him a basketball.  To Toews’ credit, the professional hockey player was very gracious.  That same day, the son of a dear friend was in surgery at the hospital.  Putting aside a long story for another blog full of interventions and orchestrations; if we hadn’t been there for transfusions, we would have missed a great moment to serve and encourage our friends.

Meeting Jonathan Toews. Note the basketball in hand. :) [photo courtesy of the Chicago Blackhawks Facebook page]

Meeting Jonathan Toews. Note the basketball in hand. :) [photo courtesy of the Chicago Blackhawks Facebook page]

Transfusions complete, we waited for days…just waiting for Chase to get hit with the virus that all the other kids had.  Then, we got a call from his nurse saying that they were all surprised to find out that he’d recovered from the chemo much sooner than expected and he didn’t need any more transfusions.  Translated: we could stay home and rest.  The worst of the cycle was over.

We rested all week and then returned this past Tuesday for the big, under-anesthesia, check-the-whole-brain-and-spine MRI.  After three months, was the cancer still staying at bay?  Would there be a recurrence seen in the pictures?  No.  We have yet to discuss the scans in detail (we will see the pictures on Monday in clinic), but the bottom line was this: things look good.  Chase’s attending neuro-oncologist said that this is what is hoped for and desired.  Another clear scan.

…and to this day, Chase still hasn’t gotten sick.  The doctors believe that the antibiotic he was on for his line infection protected him from all the germs in our house.

So, if we hadn’t had the fever before we left the hospital, we wouldn’t have been able to stay home on Friday, and if we hadn’t gone in on Saturday night, we wouldn’t have been able to be in church on Sunday morning, and if Chase hadn’t had the line infection (which caused us to miss part of our Easter holiday) at all, he would never have been protected from the flu and pneumonia in the house.  …and if he hadn’t needed transfusions, we never would have been  there for our friends and been able to connect with some really cool Blackhawk fans.  Some correlations are more obvious than others and for some things (like the scan) there is little correlation at all; just joy.  But for the rest: perspective.  This season continually reveals to me that what seems sad and wrong often leads to visible grace and beauty.

As I look back on these weeks, how will I choose to remember them?

“All around

hope is springing up from this old ground

Out of chaos life is being found in You.

You make beautiful things.”  -Gungor

Moment by moment.

Healing In The Tears

The last couple weeks have been such a blessed break in many ways.  Although Chase had chemo, it was so light that he didn’t need a single transfusion!  These more “normal” days with no hospital are full of nothing and everything.  I find myself actively being a wife and mother, nurturer and teacher in a way that I haven’t in months, but I’m also finding myself often in last summer.
I’m so thankful that I was cautioned by another cancer parent or this preoccupation would have taken me completely by surprise.  The first days and months with cancer have been so intense and involve the daily fight to live and breathe on such a level that its only when I stop that I have the luxury to reflect…and feel.  The misleading thing in all of this is that I truly believe that I have felt and thought and processed as we’ve lived each second, but it’s somehow different…even more traumatic at times.  Flashes of memory often tear into my daily moments…

…that summer moment in our front entry way when I first saw Chase’s hand tremble uncontrollably

…the change in the brash ER doctor as he (with tears in his eyes) said “It isn’t good. There’s a very large mass.”

…watching the city street disappear out the door window of the ambulance as we pulled into the bay at the children’s hospital and thinking “I’m on the inside now…never on the outside of this life again”

…Bob calling me from the EEG room: “Chase is seizing almost constantly. They’re moving us to ICU. Somebody is coming to get you.”

…drawing my knees up and wanting to curl into a ball in the tiny, dim conference room as the neurosurgeon ripped our breath away with words like “malignant” and “tumor cells everywhere

…seeing my baby again for the first time after surgery and hurting for him as he -bloodied, swollen and covered in monitors- rose to his knees in the bed and angrily screamed “I want my Mommy! I want my Daddy!” and the doctors and nurses sighed in relief that he could move and speak and know and I swallowed the guilt of not knowing how to touch him and comfort him with bloody stitches covering the head I had kissed every day…

Hours after surgery

Hours after surgery

These and many others are the litany of pictures and sounds and feelings in my brain that I believe will smooth and gentle with years, but know will remain imprinted until I draw my last breath in this broken world.

This is my daily battle: to acknowledge what has been while breathing in whatever normal is now, and still entrusting to God that which is yet to come.

I will never be able to leave these traumas, but I can control how they shape what is ahead…

“I wonder too…if the rent in the canvas of our life backdrop, the losses that puncture our world, our own emptiness, might actually become places to see. To see through to God. That which tears open our souls, those holes that splatter our sight, may actually become the thing, open places to see through the mess of this place to the heart-aching beauty beyond. To Him. To the God whom we endlessly crave.” Anne Voskamp, One Thousand Gifts

Yes.

This.

My hurt memories push at it, but my soul cries for that Grace and Peace that is the only answer in all the broken.  This that I see even in the pain…at times more clearly in the pain.

And so, I move forward…

Moment by moment.

The night before surgery: monitoring the seizures

The night before surgery: monitoring the seizures

Of Blood and Hearts and Snowflakes

In the hours following Chase’s surgery, scans showed that there were some areas of fluid around his brains – pockets, if you will. I regularly flash back to those uncertain hours and the sick, tight feeling in my stomach as we waited and wondered if he would need to go back into surgery.
Those hours resolved in the same day with a second scan that showed no change and it was determined that the fluid could be watched and waited on as Chase moved forward in stable condition.
Chase -as we well know- continues in stable condition, but the January scans (when we received such good news) revealed that these pockets of fluid have changed: now, there is blood in them.
I won’t even begin to write on a technical level about things like “hematoma” that I don’t even completely understand, but I will reiterate this: Chase is stable. If there was an immediate or emergent quality to this issue, we would see marked changes in him.
Chase will, however, be having a repeat scan in a couple of weeks and will be meeting with his neurosurgeon to determine a plan of action. …a plan that I pray will in no way involve booking an operating room.
The wondering and the waiting. The watching anxiously and exchanging worried looks over his head any time he slurs a word or loses his balance. All of it tempts me to despair and curse the cancer…to throw up my hands and scream “This will never be done! This will never be better! There is no end to this awful disease!”
And yet…
In the middle of this past week, we learned that a little girl who shares our hospital lost her battle with cancer. Her name is Anna. She was 11. Somewhere, her family sits forever changed – doubtlessly reliving the awful moments when they were told that the chemo had done irreparable damage and the very hours were numbered.
I grieve for Anna’s family, yet I am truly thankful for her life’s reminder that I still hold a living and breathing child in my arms and that each second of life is a precious gift.
The day Anna died, I stood looking out the window over the bleak landscape and as I stood, snow began to fall. As I watched the flakes in the air, I was reminded that there is a sovereign God who crafted and knows each design of each flake that touches the earth and he knows Anna’s heart and Chase’s brain and all the whys and wherefores that I don’t and may never know or understand.
I want to tie this all together neatly… The blood pockets in a damaged brain, the chemo-ridden heart that stopped a too short life, the snow that fell and the insight with it. I don’t believe there is a neat or tidy way to wrap these hideous and beautiful things, but this …

“Oh, how great are God’s riches and wisdom and knowledge! How impossible it is for us to understand his decisions and his ways! For who can know the Lord’s thoughts? Who knows enough to give him advice? And who has given him so much that he needs to pay it back? For everything comes from him and exists by his power and is intended for his glory. All glory to him forever! Amen.” Romans 11:33-36 (New Living Translation)

Moment by moment.

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Answering Questions

Since Chase’s most recent evaluation, we have received quite a few inquiries which have led us to compile a list of frequently asked questions.  Feel free to tack on other questions in the comment section at the end of this post.  Our hope is that this assists in both the understanding of Chase’s treatment and gives a small window into the life of a pediatric cancer patient (a world in which Chase is one of way too many).

1. Why does Chase still need chemo if the cancer is gone?
This is probably the question we hear most often, and here’s the answer.  The scans showed that the tumor deposits are gone and while they don’t see any more tumor or cancer cells, he isn’t considered “cancer free” because there could be more cancer cells free-floating that just haven’t manifested themselves at this time.  And even if his body was completely cancer-free at the moment, this is a vicious, virulent cancer known to recur in the first 18-20 weeks after diagnosis.  Think of it like a weed in your garden or yard: not only would you pull out the weed that you see, but you would also desire to make the ground (via a weed killer or the like) as inhospitable an environment as possible for the growth of any further weeds.  Think of this stage of chemo as both an errant weed killer and a future weed deterrent.

2. How much more chemo does Chase need?
The chemo schedule (or “protocol“) that Chase is on calls for a total of 51-54 weeks of chemo.  At this point, he has completed 17 weeks or cycles (it’s actually been closer to 20 actual weeks that have passed as his earlier chemo dates were often slightly delayed by his fevers and low counts).  He will probably complete his chemo regimen around the first anniversary of his surgery and diagnosis.

3. Why does Chase still get fevers and need blood and platelets if the cancer is potentially gone?
Chase still gets fevers and needs transfusions because those are side effects from the chemo, not the cancer.  And yes, it is harsh… but dying of brain cancer would be more harsh.

4. Can this kind of cancer spread?
In a manner of speaking, yes.  For more technical information on this, I’d highly recommend checking Wikipedia’s AT/RT link.  In laymen’s terms, I can tell you that AT/RT has rarely been seen to spread beyond the brain and spine.  On occasion, it does move to the kidneys, but that usually only occurs with the genetic form of the disease.  Hence our flying Chase’s tumor to Boston to be studied by a geneticist and having his kidneys checked (it was concluded that Chase does NOT have the genetic form of AT/RT).  Could he possibly be at a heightened risk for more cancer and other cancers in his lifetime because of his AT/RT?  Very probably.  But it’s not happening today, so we’re not going there today.

5. Chemotherapy vs. Radiation?
In Chase’s case, he needed both.  His protocol calls for a chemo induction, then a reduced chemo schedule during radiation, and pending a good evaluation, a slightly reduced chemo schedule for the duration of the 51-54 weeks.  Evidence suggests that they have not had success curing AT/RT without some form of radiation.

6. Does Chase understand cancer and his diagnosis?
Chase understands that he doesn’t feel well and that there are all sorts of things that have to happen to him, but he has no paradigm for words like “terminal” and “malignant.”  Not only is he just three, but he’s probably suffered some memory damage, so it’s actually a little unclear on how much of his life he even recalls before his diagnosis.  To him, being in and out of hospitals is just a way of life.  In fact, he loves his hospital because he’s a bit of a big deal. :)

7. What does Chase eat?
Nothing.  Many of the chemo drugs give him nausea and a couple of them give him painful sores that can go anywhere from his mouth to his esophagus and even intestines.  Early on in his treatment, Chase was put on an IV nutrition system to ensure that his body maintained nutrition, weight, electrolytes, sugars… all the essentials needed to survive.  As of today, Chase is attached to a bag for 16 hours of every day.  He does at times put a bite of food in his mouth, but usually spits it back out. 

**Sidenote: Chase “attaches” to the bag through his central line – what is basically a surgically inserted tube into an arterial vein in his chest.  The tube splits on the outside of his skin so that there are two lumen (or small hoses) through which he can be “accessed.”  When he is not accessed (meaning the tubes are not in use), they fold up neatly into an ace wrap that covers his chest.  This is the site that needs the dressing change every week.  Because of this, Chase is at increased risk for things like infection and pulmonary embolism.  However, the benefit is that he is virtually “needle free.”  All labs, chemo infusions, and most medications can be administered in his line which is such a blessing!  For this, we are more than happy to figure out the no swimming, no bathing, “carry a crash kit everywhere you go” lifestyle of a small child with (in his own word) “tubies.

8. Does Chase sleep?
The answer to this question is multi-faceted and best-answered “at times.”  The chemo and (especially) radiation have highly affected his sleep patterns so he suffers from disturbed sleep.  Every night is not created equal.  Some nights, he’s up only a couple of times, and others, it’s every 20-30 minutes all night long.  For now, there are two things we know about this issue: it’s almost guaranteed to happen every night and, per a word with his attending oncologist, doctors have seen sleep improve greatly when chemo is done. 

9. What are the long-term effects of this cancer and the treatment on Chase?
This is a question we don’t have verbalized to us very often, but I think it’s one that everybody considers, so I’d like to try and address it a little even though it’s hard to define at this particular moment.  We know that due to the tumor placement and size, there was most likely some brain damage, especially in his memory center.  Not so much like amnesia; more as in damage that will cause him to struggle to make memories in the future.  We also know that a couple of the chemo drugs Chase is taking could likely damage his heart and his hearing.  This is why he gets (and will get for the rest of his life) scheduled EKGs and hearing tests.  In fact, we have already seen small evidences that his hearing is changing.  Lastly, we know that the radiation (even proton radiation) is known to cause brain damage and stunted spinal growth (not in all cases, but Chase had his whole brain and whole spine radiated).  This is at times hard to discuss because many of these potential difficulties to overcome are based on our treatment decisions and are (at this moment) hypothetical.  What we know right now regarding Chase’s future is what we’ve always known to be true: our hope and joy come from God alone.  I so love the phrase coined by the mother of another brain cancer patient: “Defined by God, not by cancer.”  So we will meet and undertake each new facet of Chase as it becomes apparent… moment by moment.

I believe that it is very easy to get overwhelmed by all these definitions and descriptions.  In fact, I get a tightness in my chest every time I list all these things we do in a single day and all the life-time implications they hold.  With this in mind, let me end these questions and answers with a reminder–to myself and to any and all who read: Chase was designed this way by God.  God has–in His all-knowing, perfect and loving mind–designated cancer as the awful yet awesome refining for Chase and, by extension, our family.  We will consider it joy then, because we will someday see Jesus, and be perfect and complete (James 1).  And in whatever life God has for Chase, we see promise because we know that he has been fearfully and wonderfully created by a God who loves him more than we can fathom (Psalm 139).

Moment by moment.

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.

How To Fry Cancer: A Typical Radiation Day

At the time I started writing this post, Chase had completed 17 of his 30 radiation treatments.  He has now completed 22!  These radiation days can be pretty intense and it’s not unusual to start the day in one location (usually home) and end the day in a completely different location (the hospital).  So as you can imagine, these days are never, ever dull.  [sidenote: “Chase” and “dull” are rarely in the same sentence]

Here’s what a normal radiation day looks like … no wait, scratch that.  Here’s what a radiation day last week looked like (we reserve the word “normal” for the days we don’t arrive in an ambulance).

Chase arrives for radiation on the hospital transport. The mask is to hopefully minimize the germs…when he remembers to hold it in front of his face.

There is a beautiful built-in fireplace which runs the length of the waiting room wall (picture a lovely five start hotel lobby) and Chase loves it.  In fact, he refers to the radiation center as his “fire hospital” – not to be confused with his “fishy hospital” (a name derived from the aquarium in the lobby of his primary care hospital).

First, Chase gets his vitals done (blood pressure, oxygen saturation, etc) – which he hates – and then he gets to put a sticker on his sticker chart – which he loves.  The radiation center staff kindly provided a sticker chart tailored to each child so that they can “check off” the days and see the progress they’re making.  Chase’s chart was presented to him with Cars characters on it.  Do they know him or what?

Here’s the sticker chart from around Day #6…

Chasey with his radiation nurse, Roshena. He loves his “Miss Roshena” and I believe he’s actually proposing to her with a plastic ring he found in the sticker box. So classy.

After he’s “cleared” for radiation, we walk to the room he calls his “spaceship“.  This is the time when he’s usually clutching the iPod and listening to/singing with 10,000 Reasons.  I wish I had better pictures of this room.  One of the most striking things is his mask lying by the table.  I can actually see his profile in the contours of the mask and I find myself staring at it every time we go in.

The radiation mask

In the “Spaceship” – the anesthesiologist administers the drug as Chase falls asleep on my shoulder (sorry about the blurry quality – this was as good as we could get)

Almost every day, as Chase falls asleep, he says “I’m so brave, I’m so brave...” over and over to himself.  It took me almost two weeks of this to get to the point where I wasn’t crying as I walked out of the room.

After Chase is asleep, I leave him in the “spaceship” and wait in the lobby.  On this particular day, I had a particularly wonderful “Good Samaritan” who brought me a particularly needed drink.  In other words, my dad brought me coffee.

Thanks, Dad!

After radiation is complete, the nurses allow Chase to sleep off the anesthesia for a little while, at which time, I join him in recovery and once they’re sure he’s stable and alert, we are free to go.  Sidenote: for Chase, “alert” usually means “ninja“.  A side affect of anesthesia for him is crabbiness – which means it takes three people to get him dressed on many days.  A sidenote on my sidenote: when you read that last sentence, please don’t shake your head or cry at the thought of adults struggling with a small boy.  Picture with a small, wry smile on my face as I type because I love his fight and although it is at times overwhelming, his stubborn, ninja-fighting, never-say-die attitude is a perfect God-given match for his cancer.

This day (that I took most of the pictures), we finished it as we’d started: on an ambulance.  Once he got back to the hospital, he was given a little more chemo and then we were able to be discharged!

Back in the ambulance bay and sleeping off the morning – head shining with post-radiation lotion.

…and that is one of our more average radiation days!  (ambulance and chemo not included)

Moment by moment.