Ellie

Cancer Days

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_first_inpatient_fever — 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_park — 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_chemo_20120910 — 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!

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.

Of Common Colds and Blood Transfusions

During the wee small hours, one of Chase’s tests came back positive for the common cold. Since that time, he has become an isolation case – which means limited people in and out of his room and those who do come in have to mask and gown up before they enter.
I promise not to bore you with the whys and wherefores of his lab levels, but I will say that they aren’t yet where they should be and so my son will most likely be receiving a blood transfusion today for the common cold.
That’s a crazy reality to live in, and yet, I’m so thankful that they can do something like this! …even that this reaction to chemo is “expected” and can be addressed appropriately.

Is it possible to be stressfully overwhelmed and peacefully amazed at the same time?

This entire season is an ongoing exercise in allowing and even embracing short term pain for a long term benefit, and in this, I know One who had gone before.

For your steadfast love is before my eyes, and I will walk in your faithfulness. Psalm 26:3