Category: Chase

Impossible Question

“There has been no success in curing this cancer without radiation, but we know that there are long term neural and even physical effects from this course of treatment. What do you, as Chase’s parents, think?”

The impossible scenario with the impossible question.

What do we think?

In that moment, I think I wish I’d never walked into the room and never heard of cancer, and brain tumors, and chemo, and…

The reality is that Chase (barring the miracle we never cease to hope for) will begin radiation in a few short weeks. He is an excellent candidate for proton radiation (a “better” type) and our preliminary meetings and planning sessions with the doctors have been very encouraging.

It’s taken me a long time to blog about this scenario and its because I have found it almost impossible to write through being in a room and discussing the crushing reality of your child’s impending mental and physical changes …all the while knowing that these changes are still a lesser damage to him than his cancer.

Then, we leave the room and he’s still our Chase. In many ways, we said goodbye to who and what Chase was the minute we drove into the ambulance bay on that epic Tuesday in July. And at the end of my every thought and emotion on this, I have to come back to this promise…

“For you [God] formed Chase’s inward parts; you knitted him together in his mother’s womb. I praise you, for he is fearfully and wonderfully made. Wonderful are your works; and my soul knows it very well. Chase’s frame was not hidden from you, when he was being made in secret, intricately woven in the depths of the earth. Your eyes saw his unformed substance; and in your book were written, every one of them, the days that were formed for him, when as yet there were none of them.” Psalm 139:13-16 ( personalization added)

Our decision is big, but Jesus is bigger.

Moment by moment…

Chemo Duck

Tonight I realized that it was probably time to introduce “Chemo Duck” to EFAMILY.
Yes, I said “Chemo Duck”…

The “Chemo Duck” is a stuffed duck whose name is “Duck” (a little like Chase’s panda bear named “Panda Bear”), and he’s Chase’s new friend.

He was given to Chase by the hospital as a “role play” toy. He (the duck, not Chase) comes complete with a central access port that can be flushed so that Chase can do to “Duck” what we do to Chase. Although, come to think of it, Chase currently comes with an access port too…

He is a fuzzy yellow number (again, the duck, not Chase) with striped pajamas and a scarf to cover his head… a nod to the common chemo symptom of hair loss. At what point ducks ever had hair to lose is currently still a mystery to me…

Picture my sitting on the floor next to Chase, sterile and gloved, trying to perilously clean and “flush” (inject) medicines into small plastic tubes surgically inserted into his arm… all while he sits perfectly still and neither of us do anything to break the sterility of the environment (you know, like, dropping things on the floor). Did I use the word “sterile” a lot? That was intentional.

Enter “Duck”: who is regularly instructed to “sit still” and “be quiet” because “Jesus loves him” (Sometimes I really wish I knew what was going on in Chase’s head).

Presently, Chasey and his “Duck” are sleeping… all sterilized, flushed, and ready for another day.

Here’s hoping all the people and water fowl get plenty of sleep tonight.

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Six Week Joy

Chase’s cancer treatment calls for a sixth week evaluation.

It’s hard to wrap my head around having had six straight weeks of chemo already.
We spoke with the research fellow on Chase’s team yesterday and the preliminary look at his 6 week MRI showed no new cancer growth (a very real concern with an aggressive, malignant cancer) and the existing areas of cancer to be slightly decreased.

JOY.

We won’t know the full impact of these findings until after they are reviewed (probably next week) by all the relevant specialties (oncology, radiology, neurology, etc), but we are so encouraged even by what we have already heard… The chemo is working.

JOY.

I often close my thoughts with this, as it never ceases to be less true to us:

We don’t know what lies ahead, but we continue as we have…

MOMENT BY MOMENT.

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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.

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