Tag Archives: radiation

Marking A Year Of Another Kind

Bob and Chase preparing for the MRI - Thursday, August 14, 2014

Bob and Chase preparing for the MRI – Thursday, August 14, 2014

We’re supposed to “throw back” on Thursdays and “flash back” on Fridays and today is yet another date to mark.  Recently, we’ve had an awful lot of “one year ago”, “two years ago”, and so on, but sometimes the days are really long, the years are short and stressful, and rehearsing our previous survivals and God’s goodness to us in them is the only way to keep breathing.  And so, we go back…again.

One year ago today, I stood in the barren kitchen of a newly bought house (a seeming symbol of a fresh start), staring out at the view that would be my new back yard, and listening to the voice on the other end of the phone as my stomach dropped: “His spine looks clear and overall, his brain looks amazing, but…”

Those words kicked off a season of deep shadow that has been some of the most difficult waiting since his initial diagnosis.  The every six week scans, the waiting for growth… 

But today, we are stopping to mark and remember that Chase has now lived for one year, one whole year with his tumor bed growths/radiation effects/whatever they are and he’s lived as fully and well as ever he can.  We’re so thankful.

It’s incredibly frightening to write these words -about how well Chase is doing and how long he’s gone without an issue- when he’s about 72 hours away from another MRI.  But no matter what happens in this next week, today is a good day and we’ll take it one breath at a time in the… moment by moment.  

Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you.” Deut. 31:8

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.

A Really Wonderful Moment

To all our family and friends who have prayed, encouraged and blessed above and beyond over these last 30+ days, we are profoundly thankful.
For all of you who couldn’t be with us – here is a small clip from Chase’s graduation.

Thank you for sharing in our celebration!

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.

 

Day Two

Radiation day #2 started at the radiation building, and then due to a fever, moved to the outpatient oncology office, and then to the local ER, and then to an inpatient room, and then discharged from the local hospital to the special transport team, and finally, taken “sirens and lights” to Chase’s hospital.

Waiting in the oncology office after radiation

My apologies for the run-on sentence.  It was a run-on day.  Because of the fever, radiation is currently suspended.

Posing with some members of his spectacular transport team …headed for “his hospital”

Stay tuned for Day #3…

Moment by moment.

Day One: A Reflection

With his backpack and IV bag preparing to leave in the early morning…

One day down, twenty-nine more to go…

I’ve mentioned before how very much I hate separating from Chase before a procedure and today was no exception.  I left my unconscious child in a full body mold in the middle of a huge radiation machine, turned my back, and walked away.  With this heavy on me, I cried the whole way back down the hall (much to the chagrin of the nurse escorting me, I’m sure…).

Snug on the ride home; sleeping off the anesthesia

This entire radiation decision feels like a step down the path of destruction.  The doctors (and we with them) must tear and ravage his body with everything there is in the hope of once and for all eradicating this terrible thing that is greater still than the near deathly salvation they’ll put him through.

And yet…

I thought again today about the words of Psalm 139 and realized, no, this is not a road to destruction, but to perfection!

I thought I had a healthy and perfect baby boy one December afternoon.  I still remember the first pink tinge of life effusing his skin as they laid him in my arms.  How beautiful he was.

And yet…

My mind cannot fully grasp this, yet my heart cries out that it is true: that December afternoon was but the beginning of a journey to perfection.  Chase is only now becoming who his loving Heavenly Father desires him to be!

We don’t know now.  But one day we will.

So we will endure that we may be complete.  Lacking in nothing. (James 1:2-4)

Moment by moment.

Rubbing lotion on his head and back to protect against burns

In The Dawn Once Again

It’s Monday morning and we are in the dawn once again.

Today, Chase begins radiation.

Though I cannot find the words to adequately describe how I feel about this, I know that God has been with us every step of the way and will not leave us now.

Chase, we’ll again see you on the other side.

From the first step on a new path…

Moment by moment.

Impossible Question

“There has been no success in curing this cancer without radiation, but we know that there are long term neural and even physical effects from this course of treatment. What do you, as Chase’s parents, think?”

The impossible scenario with the impossible question.

What do we think?

In that moment, I think I wish I’d never walked into the room and never heard of cancer, and brain tumors, and chemo, and…

The reality is that Chase (barring the miracle we never cease to hope for) will begin radiation in a few short weeks. He is an excellent candidate for proton radiation (a “better” type) and our preliminary meetings and planning sessions with the doctors have been very encouraging.

It’s taken me a long time to blog about this scenario and its because I have found it almost impossible to write through being in a room and discussing the crushing reality of your child’s impending mental and physical changes …all the while knowing that these changes are still a lesser damage to him than his cancer.

Then, we leave the room and he’s still our Chase. In many ways, we said goodbye to who and what Chase was the minute we drove into the ambulance bay on that epic Tuesday in July. And at the end of my every thought and emotion on this, I have to come back to this promise…

“For you [God] formed Chase’s inward parts; you knitted him together in his mother’s womb. I praise you, for he is fearfully and wonderfully made. Wonderful are your works; and my soul knows it very well. Chase’s frame was not hidden from you, when he was being made in secret, intricately woven in the depths of the earth. Your eyes saw his unformed substance; and in your book were written, every one of them, the days that were formed for him, when as yet there were none of them.” Psalm 139:13-16 ( personalization added)

Our decision is big, but Jesus is bigger.

Moment by moment…

The Other Shoe

What do you do when the thing you most feared is suddenly your reality?

Today we got the results of the pathology report, and it doesn’t look good.  Chase has an atypical teratoid/rhabdoid tumor (AT/RT), which is a very rare kind of cancer (rare = about 30 new cases per year).  Did we really think that Chase was anything other than rare?

The neurosurgeon noticed, on Chase’s original MRI scan, that there was some light-colored shading on his spinal column, which has now been interpreted as the tumor spreading.

It seems like the most likely course of action will be a 51-54 week regiment of chemotherapy and radiation, during which time he will have a treatment every 3 or so weeks in the hospital.

This is hard news to try to process.  Am I ready to watch my child go through this?  Do I trust that God is sovereign, even over an aggressive malignant tumor?  The words (and melody) of a song by Mark Altrogge has been going through my mind today:

Whatever my God ordains is right
In His love I am abiding
I will be still in all He does
And follow where He is guiding
He is my God, though dark my road
He holds me that I shall not fall
And so to Him I leave it all.

Here’s a clip of the song with this verse:

What this looks like, only God knows, but what we do know is that God IS sovereign, and while the tumor is a tragic physical manifestation of the fallenness of mankind, the child is a beautiful manifestation of the image of God, and in this child we have joy.