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…

Cancer and Laundry

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.

Chase and Grandma Russell — 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.

IMAG0390 — 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.

IMAG0394 — 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.

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.

IMAG0090 — 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.

IMAG0396 — Sleeping peacefully at the end of a long day (Isaiah 26:13)

Imagine the Grace

header_crop2 — 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)

Of Steroids And Washclothes

Summer 028 — Chase flaunting both his cool scar and the awesome view

A quick catch up (and by “quick”, I mean “probably not“) …

Chase is home!

Discharge — Chase leaving the hospital in the wagon

Well, home after a fashion … We have moved into my parents house for the first week (read: pray for my parents) so that we can have around the clock, one on one care for Chase. Why? Because he’s an active 2 year old boy on steroids, with 40+ stitches in his head, weak muscle coordination, and no center of gravity. Good times.

On that same subject, Chase had his final steroid yesterday…(audible sigh of relief)

We had a wonderful (albeit long) meeting with the oncology team today. Without gushing and going into a lot of cancer jargon, let me just say…we are very glad to be working with them.

We were also informed today that Chase’s kidneys are clear for now. This is the thing with AT/RT: it usually just hits the brain and spinal area (yes, I said “just“), but there is the chance that it can attack the kidneys too…which happens most often in the genetic version of the disease. (yes, I said “genetic“…so yes, our other children could get this). Therefore, as you can imagine, clear kidneys are a huge praise! The tumor will now be flown to Philadelphia where it gets to meet the only person in the world who studies the genetic component of AT/RT.

Summer 039 — First post-op steps with the nurse

As soon as Chase gets cleared post-surgery, he will begin a very aggressive eradication process, the name of which sounds like a great title for the newest spy action movie.

Chase is doing so well! His wound had now healed to the “itch” level and it’s driving him nuts. However, in his brain, covering it with a washcloth helps. So we are hearing the phrase “I nee uh washclaf” a hundred times a day and he spends most of his waking (and sleeping) hours with a dry washcloth draped over his cranium.

Dear ones, please know this … As you may read this lighter and even joking tone to some of what I say here: cancer is deadly serious. I am not joking about cancer. Bob and I are finding joy in our son and his rarities on this long (and what will often be dark) journey.

I think this wraps up all the information I’ve been meaning to share with you.

As always, thank you so much for all your love, encouragement and prayers. They mean so much to us.

Category: Chase