Tag: Chase

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

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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)

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)

 

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.

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