Tag: Chase

Cancer Days

Lake Michigan

Most days, the fact of Chase’s cancer is recessed behind the reality of simply caring for him and the rest of my family. However, there are some days when the cancer is heavy on me. Days where no matter how I think, pray, reason, or verbalize, my heart and mind are unshakably heavy with the weight of this awful disease and it’s toll on the ones I love.

This last week, I had a bad cancer day. On Tuesday, we found out the results of Monday’s spinal tap – that there were still cancer cells in the fluid. We had not expected them to be gone, but we had hoped. There was no status change in Chase or his treatment, but that news put the cancer back on me.

The heaviness stayed with me for some time and when I was finally able to escape the room, I took a walk and sat by the cloudy, windy lake – which seemed to mirror my mood.

As I sat, I opened the Bible app in my phone to Psalm 27 and read verses 13 and 14…

“I believe that I shall look upon the goodness of the Lord in the land of the living! Wait for the Lord; be strong, and let your heart take courage. Wait for the Lord!”

What incredible words in a moment for which there was no explanation! Yes, I can wait…I WILL wait….why? Because I believe that I will see God’s goodness. Whether His goodness manifests in healing my son is for His mind alone at this time, but I know that He is good, and so I wait …

Moment by moment …

Being Ready To Go

Since I last wrote about Chase (a veritable age ago), he has been discharged from his sick visit, readmitted for his inpatient chemo, and re-discharged post-chemo again.

Chase in the midst of his first admission for a fever, with his NG tube in his nose.

 The five days in between our hospital stays were packed and precious with family times, in which we saw the truth of doctors words – “Just wait until you get him home.” Chase became a different child in those five days! His color improved, he started talking and interacting more, and even ate food! (Note: this is a big victory for an AT/RT patient as their protocol is so intense that many children stop eating altogether. Chase still needs IV nutrition on a daily basis, but just getting him to the table is a big deal.) The doctors also said that most parents mark the time by this – “When your child starts doing really well, that means it’s time for more chemo.” Check. Time for the big bags, long infusions, and constant monitoring that goes with his inpatient chemo stays.

Chase swinging on the swing with Daddy during one of the few days at home from “his hospital.”

It’s amazing and a little sick how quickly we adjusted to this “normal”. In fact, we are already forming a routine. This is a blessing, but I truly never thought there would be a day when medical staff hourly monitoring my child’s vitals around the clock would be expected. (Have I mentioned recently how incredible the medical staff is? I should. They are.)

At this moment, we are on the other side … Heading for the “nadir,” the low point. (Real talk: I had go look up “nadir” when I first heard it. In a word, it’s the opposite of “zenith”…ie: when Chase is going to feel absolutely awful). His color is not as good, he’s more tired and irritable, and he regularly complains that his “tummy hurts”. We can tell that his counts are dropping: he’s already clocked in with a couple low grade fevers and we know its only a matter of days before the fevers truly set in and we will be inpatient again.

Chase’s chemo day was switched to Mondays and so we will go back tomorrow for what should be an outpatient clinic day. …but we’ll pack our bags anyway, just in case.

Chase during his inpatient chemo this last week.

Becoming accustomed to living a life that could be dropped, switched, and hospitalized at any moment is a challenge. It’s hard not to be consumed with watching Chase for changes and stalking him with a thermometer in hand (it’s a funny picture, but I’m often tempted…), yet it’s just another facet of the “moment by moment” mindset we keep ever in front of us.

And so we continue on … Making memories, finding joy, and being ever ready to go.

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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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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