Monthly Archives: September 2012

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.

┬áThe 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.

Of Sisters And School

Today, Darcy started first grade.

Bob and I couldn’t be with her, but I want to take a moment to acknowledge this amazing girl. In many ways, the recent changes in our family have hit her the hardest. All I can say is that she tirelessly adjusts SO WELL. Last week, I watched her follow Chase all over the house, carrying his IV bag over her shoulder so that he wouldn’t be hampered in his play.

Just today, as we talked on the phone after school, she heard Chase fussing and -rather than finish our discussion about her class- offered to have me put him on the phone so she could “settle him down”. (she did indeed settle him down…)

Our precious girl made an awesome decision to trust Christ as her Savior this past summer and has had to bravely face several significant things going into the school year.

For these, and so many other reasons, we are so blessed to have her in our lives.

Enjoying these precious moments …

Happy First Grade, Sissy!

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