Monthly Archives: August 2012

A Good Moment

Early this morning, Chase had a fever that broke on it’s own!

This is a huge blessing as he has been struggling with higher fevers broken only with medicine since Saturday.

Also, his lab work came back showing improvement to the level that he won’t need any blood products transfused today.

And here’s the best part… Last night, he reached across the bed, patted my arm, and smiled. He’s been so sad and pained for so long this week that I’d forgotten how much I’ve missed his good moods until that smile broke through.

Rejoice with us! This is a good moment.

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Of Common Colds and Blood Transfusions

During the wee small hours, one of Chase’s tests came back positive for the common cold. Since that time, he has become an isolation case – which means limited people in and out of his room and those who do come in have to mask and gown up before they enter.
I promise not to bore you with the whys and wherefores of his lab levels, but I will say that they aren’t yet where they should be and so my son will most likely be receiving a blood transfusion today for the common cold.
That’s a crazy reality to live in, and yet, I’m so thankful that they can do something like this! …even that this reaction to chemo is “expected” and can be addressed appropriately.

Is it possible to be stressfully overwhelmed and peacefully amazed at the same time?

This entire season is an ongoing exercise in allowing and even embracing short term pain for a long term benefit, and in this, I know One who had gone before.

For your steadfast love is before my eyes, and I will walk in your faithfulness. Psalm 26:3

What To Expect When You’re Expecting the Unexpected

Chillin’ through infusions and transfusions…

Our trip to the hospital this weekend was unscheduled, but it wasn’t completely unexpected.

Up until now–as we’ve made our decisions about Chase’s treatment plan/location–we haven’t said too much about AT/RT, but if you read “The Other Shoe” and googled that specific cancer, you probably already have an idea about what this looks like.

The truth is that AT/RT is very aggressive and doesn’t have a great prognosis (I won’t share the exact percentage here because Chase is either 100% with us, or he isn’t and that’s all that really matters). Regardless of statistics, Chase is a fighter, and the cancer’s aggressive nature requires an aggressive response.

Treatment of AT/RT is a little like a Looney Tunes-style destruction of cancer cells: they’re going to punch it, and then kick it off a cliff, and then half-way down the cliff, catch it and put it in a cannon and shoot it to the moon… then let it fall to earth to explode in a fiery ball of death in the side of a mountain (I’m picturing Wile E. Coyote in my head right now).

What this looks like in real life is: getting to know the hospital REALLY well. Chase’s treatment protocol is front-loaded to try and force a remission and so for almost the entire first half of the year-long period, he is scheduled to receive chemo every week (yes, every week).

Because of this, he is going to be in a pretty continual state of low immunity, which means he’s prone to every infection and will get fevers very easily.  Because of this, he will probably have a lot of unscheduled hospital visits (like this weekend) for antibiotics, transfusions, and extra monitoring.  Chase’s oncology team had been verbally preparing us for this from the first day. It doesn’t save us from seeing him in obvious pain in a hospital bed with a fever of 104, but it definitely helps prepare us to expect it.

Does it sound crazy? Yes, probably, but our son’s life is the answer to that question, so how could we ever NOT pursue this treatment.

I do not know how this year will end or what the long term effects will be on our family.

Here’s what I do know… We are going to get through it (let’s all say it together) …

Moment by moment through GRACE

The heart of man plans his way, but the LORD establishes his steps. –Proverbs 16:9

Another Average Week

I meant to write all week and the time completely escaped me.

Here is a brief (“brief”? A bit of levity there…) update from our week.

Monday: Chase went back into surgery to have his infected central line removed and a PICC line placed (in his arm).

Some things never change. Chase, before his central line removal, explores the cupboard.

Tuesday: We finally got to go home!!  …in time to meet Grandpa and Grandma’s flight.  (Early bedtime? Say what?)

Wednesday:  Bob and I checked Aidan into outpatient surgery at our local hospital – to have his tonsils and adenoids removed.  Surgery was successful.

Having to show up for surgery at 6:00 A.M…. Well, we may recover some day.  Aidan was a pro and he was genuinely excited about all the little things like monitoring vitals, the beds and the ID bracelets because he was getting to be just like Chase.  Watching them compare their hospital ID bracelets was both heart-breaking and a little hilarious.

Big brother joins the surgery club…

Thursday: Thursday is our scheduled chemo day. Anytime you think of us on a Thursday, we’d so appreciate your prayers.  This day meant rising early to get back to “Chase’s Hospital” (he really does call it his hospital) for his labs, chemo, and another lumbar puncture (injecting chemo into his spine).  This day was INCREDIBLY encouraging to us because Chase had been able to come home for a day (something never to be taken for granted on this chemo protocol), his counts had dropped – but not as low as they’d expected (so he could come back home instead of being admitted), and despite eating almost nothing, his body was doing well on the IV nutrition and he hadn’t lost any weight since his discharge on Tuesday!

Chase, Thursday, post-op recovery

Friday: The first day in SO many days that we didn’t have to be in either a hospital or a doctor’s office.  Ahhh…  We ended the day with a small celebration…cuddling up on the couch in our pajamas and watching the “Apple Dumpling Gang.”  Silly and perfect and all together for a moment.

Saturday: Chase had a rough night and a slight fever in the morning.  The fever got higher as the morning passed and we brought him back to the hospital early in the afternoon. (fevers in a chemo patient are really important as they are usually indicative of a system issue that the body can’t fight due to it’s lack of white blood cells).

Sunday morning: I’m writing this blog post from an inpatient room in “Chase’s hospital.”  Chase will be here until he completes a course of antibiotics, the fever is under control, and his blood counts start going back up.

Even though it’s hard to be back in the hospital, we have so much to be thrilled about this week… two kids through two surgical procedures in two hospitals with no complications, Chase doing far better than expected, for longer than expected after his chemo clinic, and getting a special family evening to relax in the middle of the chaos.

Moment by moment

An Unusual Complication

Tuesday, 3:30am…

The first round of chemo is done!

Chase was supposed to have been released from the hospital this morning… But it looks like his brand new central line (placed on Thursday) is infected. So, unless there is a miracle in the next few hours, Chase will go back into the OR to have the line removed.

What exactly this means for his next chemo or his ability to fight infection (as his white count is already rapidly dropping), the medical team doesn’t know. We have been told that this is the surgeon’s “call” in the next few hours.

In this moment, I have many unanswered questions about what the next few days will hold. I also miss my family and am frustrated to miss that small window to be together again. Along with this feeling there is a thankfulness and relief that they caught the issue while we were still here and that they’re carefully monitoring him.

I’ve been told that I have “every right” to be upset by this unusual “complication.” Really? Just this one? I don’t mean to be facetious, but in my mind, on some level, it’s all been a giant, graphic complication from the moment the local ER doctor walked into the room and said, “It doesn’t look good. The CT shows a large mass in his head.”

Where do we go from here?

Stay tuned …

How will we handle it?
Moment by moment

“Whatever may pass, and whatever lies before me, let me be singing when the evening comes … You’re rich in love, and You’re slow to anger, Your name is great, and Your heart is kind. For all Your goodness I will keep on singing… Ten thousand reasons for my heart to find…”10,000 Reasons (Bless the Lord), Matt Redman

Day Five

Today is day five of Chase’s first treatment. Every time they’ve hung another bag or started a new infusion, I find myself tensely thinking “Wait for it, this is the one that is going to make him code…”. (sidenote: a chemo treatment room is a great incubator for illogical fear)

Each day has brought new information and and sometimes overwhelming experiences…

Reality: this chemo is so powerful that we can’t even change his diapers without wearing gloves.

Reality: my son has a surgically-placed double hose into his chest (which will remain with him for the duration of his chemo) that I need to learn how to clean and care for.

Reality: he hasn’t eaten almost anything in over 48 hours and is on a constant IV for his nutrition.

Reality: one of the chemos is making his jaw hurt to the point where he cries out anytime he opens his mouth…even in his sleep.

I want to keep writing “reality” and listing all the other things that are bothering me or that make our life sound very extreme and dramatic, but just now, I need a reality check, and since you happen to be reading this, you are coming along with me.

Reality: my son is in the final day of his first round of six chemos and he hasn’t coded over any of them, in fact, his nausea is mostly managed by a couple anti-nausea meds and the nursing staff said he is doing incredibly well given his difficult protocol.

Reality: we live close to one of the top treatment hospitals in the nation in an age when they know what AT/RT is and can treat it (even as little as five years ago, this cancer was still fairly unknown)

Reality: “God is always doing a thousand things when he does anything. And we see but a fraction.” John Piper

Moment by moment…

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Cancer and Laundry

Have IV, will travel…

Two weeks ago now, my third child was diagnosed with a very rare, very aggressive malignant cancer.

Do you know what I spent this morning doing? The same thing I have spent so many mornings doing since he came into this world…tracking Chase, keeping him out of disastrous trouble, and praying silently for control over my impatient frustration that is almost always right under the surface with my high maintenance (but adorable and precious) child.

Real talk.

Teams of doctors literally surround us with prognoses and numbers and yet it’s scarily like every other day…only he has a central line and IV fluids and we are in a hospital, not our home.

How shockingly fast our circumstances become mundane. There is nothing mundane about this situation, and yet, already, I feel my mind and emotions coming around to it in a sort of attempt to deal with our new reality.

Playing with Grandma Judy (the mask is because we left the oncology floor of the hospital)

I guess what I’m trying to get at is this…my moment by moment grace today is in asking the Lord to keep the swift and fleeting nature of our lives in front of me. …never in an overwhelming sense, but rather in the sense that every second is meaningful, precious, and an opportunity to point ourselves and our children to the cross.

Because it is all too easy to consider a terminal illness on one day and be thinking about the laundry on the next. Trust me. I know.

“Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.” Hebrews 12:1-2 (ESV)

Truth, Grace, Perspective, and Chemo

I don’t want to write tonight, but there is much to share.
Yesterday, we had a full schedule of appointments at the hospital – Chase was cleared post-op by his neurosurgeon and was cleared pre-chemo by the oncology team.  Oh, and in the middle of all the scheduled visits we had a series of UNscheduled visits when his father and I (please, keep in mind that we are parents of four, and in this moment, we only had ONE to watch) ignored that one wiggle that sent him backwards off his cafeteria chair and onto the floor…on his baseball head.  Oh my.  He’s completely fine.  Someday, Bob and I will recover too.

Coloring to pass the time in pre-op

After all our meetings yesterday, we got to go home for a few hours and then came back very early this morning for Chase’s second trip into the OR in 2 weeks – this time for a central line, spinal tap, and first spinal injection of chemo.

Daddy prepping to assist the medical staff until Chase stopped kicking them :)

As I write this, we are back in one of our lovely lake view rooms on the oncology floor.  For this first chemo visit, he stays for several days, incredibly vigilant monitoring, and lots and lots of chemo drugs.

Our new life

Oh, the drugs!  In some ways, this is harder to handle than his surgery.  I hate the thought of what these life-saving drugs are going to do to him.  Each infusion makes this more real…or at the very least, keep us from ever forgetting where we are and why.  I find myself pondering again and again the strange and sober mercy that allows such suffering in the now for the benefit of long term.  (always pondering it…never questioning it)
Today has really been a good day and Chase is doing incredibly well given the circumstances.  So why didn’t I want to write?  Because today is a struggle for me.  Not a high-level freak out… Just a low level wishing things were other than what they are.  I feel very weak in the “bigness” of this disease and it’s implications.

With Chase immediately post-op as he was coming out of the anesthesia

In this moment, I know that I need to be reminded of Truth.

“Have you not known? Have you not heard?  The Lord is the everlasting God, the Creator of the ends of the earth.  He does not faint or grow weary; his understanding is unsearchable.  He gives power to the faint, and to him who has no might he increases strength.   Even youths shall faint and be weary, and young men shall fall exhausted;  but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.”  Isaiah 40:28-31 (ESV)

Though I am weary, God is not.  Though I am weak, God is not.  Though I am very intimidated by my son’s chemo protocol, God is not.  Though I have no idea what our future holds … GOD KNOWS.  In fact, He more than knows…He has perfectly crafted and designed these events in a symphony of praise and glory beyond our wildest and most beautiful imaginings.
Moment by moment perspective.
Moment by moment grace.

Sleeping peacefully at the end of a long day (Isaiah 26:13)

 

Imagine the Grace

Photo courtesy of Jessicafm

“You know it’s okay to say this really stinks, right?”

Bob and I have heard variations on this question many, many times in the last two weeks.  Yes, we really, really do know that this stinks.  We weep and are often overwhelmed, but we marvel ourselves at the peace we feel.

I was recently made aware of a wonderful thought from Elisabeth Elliot that perfectly describes our feeling.  She (our Chase Stratton Elliot’s great-great aunt) wrote this after losing her second husband to cancer.  I read it in this moment not as pertaining to the loss of Chase, but as the loss of what could have been for Chase:

“It often happens that those whose loss is greatest receive the greatest share of grace, mercy, and peace. This does not mean that they never cry, of course. But they do not collapse. Those who only watch and pray and try to put themselves in the place of the bereaved find it almost unendurable. Sometimes they weep uncontrollably, for their imaginations never include the grace.” (The Path of Loneliness)

Oh dear ones, when you think of us, imagine the grace!  It is beyond your (and even our) wildest imaginations.

As of today, we know that Chase is scheduled to begin treatment by the end of the week.  Please pray for us to continue in a moment-by-moment walk with Jesus.

“But safety, as the Cross shows, does not exclude suffering…trust in those strong arms means that even our suffering is under control. We are not doomed to meaninglessness. A loving Purpose is behind it all, a great tenderness even in the fierceness.”  (The Path of Loneliness)

“I wait for the Lord, my soul waits, and in his word I hope; my soul waits for the Lord more than watchmen for the morning…”  Psalm 130:5-6 (ESV)

 

Weekend Update

A tiny slice of the efamily weekend in pictures…

A quality man, who can find?  He can simultaneously hold a baby and play frisbee with the other kids … like a pro.

 Darcy Girl…my baby is setting up to be in first grade! 

My firstborn tent, er, son, Aidan…who insisted on “wearing” the castle tent and chasing Chase with almost no visual.  Ah, those college scholarships…

I wish I could explain the bowl scraper, but I just can’t, so I won’t even try.  It’s Chase …

“What’s with this green carpet?”

There might have been some maternal manipulation in play here.  What can I say?  I’m an absolute sucker for a good bowl scraper.

And the winning weekend image award goes to … Grandpa and his rampant misuse of the nerf guns!

Hope your weekend was as colorful as ours!