Monthly Archives: January 2013

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 Very Special Day

Today we received news… news that we have on some level been anticipating since this all began.

The MRI scan was completed and the cancer cells in every area–the tumor site, the brain as a whole, and the spine–all appear to be clear.

We are cautiously joyful.  Joy-filled because we never expected to hear this news, yet cautious because this is a viscious cancer that doesn’t give in easily.

Despite what looks like a cancer-free body, Chase is only 16 weeks into his 54-week chemo protocol, so while we revel in this moment, we do not rest for long.

I’m wrestling as I write and erase, and write and erase again.  I don’t think I’ve ever written such exciting and positive news in such a tentative way.

This day is funny and strange, because happy news doesn’t erase Chase’s pain and suffering, even as it potentially extends his life.  There will still be fevers and transfusions and frequent hospital stays.

Many things ahead will be subject to constant change, but there are some things that will be as they have always been: God’s incredible grace to us, our complete need for Him to rescue us, and the never-ending necessity of living in a moment-by-moment existence.

As Bob and I prayerfully thanked God over Chase’s hospital bed in that first breath of knowledge, we were released from the cancer burden to exult.  And now, we turn towards what is yet to come, acknowledging that it is all–the good and the difficult–a precious gift.

Today was a very special day.

Moment by moment.

Our soul waits for The Lord; he is our help and our shield.  For our heart is glad in him, because we trust in his holy name.  Let your steadfast love, O Lord, be upon us, even as we hope in you.  Psalm 33:20-22

Pounding on the Door

Last week, I had lunch with a former professor of mine at Moody Bible Institute, and as we ate lunch, he would introduce me to people that came by our table.

One of the people that he introduced me to was a sweet woman from Ghana named Alice.

When Alice heard about our family’s struggle with cancer, she said, “I will keep you in my prayers.  We know the great Kingdom Healer!”

Then she said something that has stuck with me since then, as a great word picture of prayer:

“We’ll just keep pounding on His door!”

Everyone has been so gracious to keep our family in your prayers.  Please keep pounding on His door for us.

Dinosaur Poop And Life Lessons

This morning, a couple volunteers stopped by our room to check in. One volunteer brought blocks for the bed-bound, wiggly Chase, and the other volunteer brought a chunk of poop.
Yes, it’s true! This volunteer is a retired archeologist from The Field Museum who brought a chunk of fossilized dinosaur excrement for the kids to see and touch.
As I held the brownish rock in my hands, I turned it upside down to view the smooth, polished surface of a man-made cut. Imagine my surprise at seeing what looked like a beautiful crystal inside!
Given time and refining elements, something that was complete excrement is now a thing of beauty.
Call me crazy, but I suddenly felt like I was holding cancer in my hands… This life season that feels like nothing but poop, will in time, polished by the elements and circumstances, become beautiful.
I laugh at myself gathering deep insights from waste, but I am in awe of the timely reminder over the hospital bed.
Moment by moment.

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Days With No Answers

There are some days that I long for answers.

After being re-admitted to the hospital in Sunday’s early hours, Chase is driving me to that place. Why are the fevers so high when he still had white blood cells? Why is he so visibly ill when his tests are coming back negative? Why is his blood pressure so low ….does he need platelets …does he vomit even after anti-nausea drugs …why, why, why??

It’s days like today that I hear Tennyson in my head:

“Theirs not to reason why, theirs but to do and die…”

Is that the reality? To do and die?

Even as I question, I am reminded of the verse in Jeremiah:

“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)

If this life is full of God’s plans for me that give both a future and a hope, and I’d prefer not to face it like one of the six hundred riding silently to death, I ask myself…how should I respond to weary days with no answers?

Give thanks.

Give thanks even when it hurts. …when it aches …when there is no human reason for the pain and suffering.

“Give thanks in ALL things…” (1 Thess 5:18)

So this is my answer for today. I may not get the answers I crave for the child lying in the bed, but believing that whatever my God ordains is right and for His glory and my good can free my burdened heart for thankfulness.

Moment by moment.

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Of Spinal Fluid And Really Good Days

Heart in my throat, I looked at the doctor standing masked and gowned by the foot of Chase’s hospital bed. “Have you heard anything on the spinal fluid yet?”

Slowly, she lowered her mask and I could see her huge smile…“Yes. The fluid was negative.”

In shock, I asked her if she was sure it was Chase’s fluid as Bob laughed quietly from his place across the room.

Chase’s spinal fluid–this fluid that has been positive for cancerous, atypical and abnormal cells from day one–is weird cell FREE!

There is a cautious moment to this, as it does not mean that Chase is cancer free.  The true State of Chase is something that will be unknown for a while, hopefully only until his evaluation at the end of the month.

There is still a long road ahead for this little one. He’s only 14-16 weeks through a 51-54 week chemo protocol … Encouraging news to the little boy who burst into tears as he thought clear spinal fluid meant no more “fishy hospital.” (Oh, Chase…)

So, as I’ve written many times, we don’t know what’s ahead, but …
Today was a REALLY GOOD DAY.

Whatever may pass and whatever lies before me, let me be singing when the evening comes. Bless The Lord, O my soul!

Moment by moment.

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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.

The State Of Chase

“Yes, but how is Chase doing?”

We hear this question a lot.  A desire not to hear medical information, or how our family in general is doing, but a genuine concern for how Chase is doing – especially emotionally.  The more questions I’ve received, the more I’ve realized that I really should write about it.

From a physical aspect – I feel the need to address physical first as understanding who Chase is in the physical sense goes a long way to understanding how he’s doing otherwise – he’s lost all of his hair now.  The radiation finally took his eyebrows and eyelashes, so he squints a lot.  Something (it’s unclear if it’s the effect of the tumor, the residual cancer, radiation, or something that is yet unknown) has affected his speech and so it’s often garbled and interpretation is frequently needed.  The speech, and his walk (he suffers from some minor weakness) both become more pronounced the more tired he is.  …which is a lot these days.

The cumulative radiation effect is at it’s peak right now – even though he’s been done with treatment since December 12th – and he’s very tired.  …four hour naps, walking across the house winds him, stepping outside exhausts him kind of tired. (this is something to watch in a child who hasn’t sat still since he was born…if then)

In the last three months, Chase has in turn suffered from insomnia and somnolence (sleep and lack thereof)…which makes for interesting days and even more interesting nights as the first thing he does (even in his sleep) is reach for his central line (a fancy access system into an arterial vein which allows for IV fluids, nutrition, medication, and blood draws without constantly sticking him).  So, as you can well imagine, it’s hard to leave him alone…ever.

When we are home, Chase has labs twice a week and a dressing change on the central line once a week.  For the labs, he is as good as gold.  For the dressing change, he is still as good as gold, but it takes three people to hold him down.  Despite it’s weekly occurence (which you would think would have him used to it by now), he hates it more than his brain surgery.  It scares and enrages him whenever anybody even gets close to touching the line.

A side effect of the chemo is that Chase’s skin is very sensitive and depending on his frame of mind, he fights against being touched.  This can sometimes involve a war strategy worthy of the Pentagon just to change a diaper, yet other times, he lays perfectly still and talks to us as if nothing bothers him at all.

And now, put aside the screaming, the kicking, the central line, the loss and pain and tears and hear this… children are so resilient.  I wouldn’t believe it if I didn’t see it every day.  This life is Chase’s normal and he lives and loves in it to his full capacity.  He knows when the nurse is coming to the house and what she’s going to do and he helps hold lab supplies.  And he knows that a fever means going to his “fishy hospital” and he gets excited to go see his nurses and doctors.  And he is even used to the 2+ hours every evening of taking his oral medications and preparing/attaching his 16 hour IV bag…in fact, he looks forward to it because we snuggle on the couch and watch a movie while we work. 

Chase has no paradigm for words like “malignant” or “terminal” and the percentages they carry with them.  He is used to his cancer and is even (dare I say this) proud of it – as any small child revels in something they possess that their siblings do not.  More than once, we’ve heard him hold it over Aidan’s head: “No, Aidy, you can’t come to the hospital with us, because I have the cancers and you don’t!” There are days when the cancer means painful or uncomfortable medical procedures (for him, this could be anything from a needle prick to a blood pressure cuff) and then he dislikes it, but even then… There was one evening that as I apologized to him as I had to give him a medicine he didn’t want, he put his arms around my neck and said; “It’s okay, Mom. The cancer is here, but Jesus loves us. It’s okay.”

So how is Chase really doing?  He’s a breathtaking blend of cancer-produced maturity far beyond his barely three years and highly active, life-loving little boy.  He approaches life with a take no prisoners, no-holds-barred, hold no grudges attitude tnat allows him to hug and kiss the nurses that he (30 seconds earlier) kicked and screamed at. 

If I had to sum it all up, I’d be hard-pressed to find better words than those that Chase himself says…

“I’m so brave…”

Moment by moment.

[be sure to come back for part #2 of our 2013 update: “What’s Next?” posting later today]