Monthly Archives: July 2013

One Year

Tuesday, July 31, 2012 – 4:00AM

“Dad, Chasey is crying in his bed and he won’t stop moving.”

With these words of a frightened child a year ago came the unheard sound of life forever changed.  A season of watchful anxiety with no answers silently became a parent’s worst nightmare as we were thrown into a path on which there is no escape, no turning back, and no foreseeable end in sight.

The path is dim and lined with shadows: of lost dreams and old lives, of malignancy and pain, of a terminal condition always a breath away.  And yet, God’s grace and goodness to us is woven into this tapestry of pain in ten thousand reasons for our heart to find.

Truly, there is no better sum for the year than this…

“I stand upon the mount of God with sunlight in my soul; I hear the storms and vales beneath, I hear the thunders role. But I am calm with Thee, my God, beneath these glorious skies; and to the height on which I stand, no storms, no clouds can rise. O, this is life! O this is joy, my God to find Thee so: Thy face to see, Thy voice to hear, and all Thy love to know.” Horatious Bonar

Thank you for walking this first year with us, moment by moment.

[As many of you know, Chase’s favorite song is Matt Redman’s “10,000 Reasons.”  I hope this very slight picture of the year blesses you as it does us.  Trace the faithfulness and joy with us… God is good.

Chase And The Red Devil

543144_10151327079430583_1155493022_n

There is a chemo called Doxorubicin.  When Doxorubicin is brought into a hospital room, it arrives covered in a dark, photosensitive bag because the light of day can harm it. When Doxorubicin is introduced to the human body in certain doses and suspensions, it requires a “rescue drug” to be given simultaneously to protect the heart.

Doxorubicin makes parents pray that their children escape with only small damages like hair loss, mouth sores, and nausea.

Because of Doxorubicin, cancer patients have heart tests at least once a year for the rest of their lives.

Its mixture of ruby hue and devastation earn Doxorubicin the fearful title “The Red Devil.

Do I make it sound like it terrorizes villages on dark nights? It might as well.  In fact, it is powerful enough that during Chase’s radiation treatment, he couldn’t have this chemo because it, coupled with radiation, would have been too much for his body.

For Chase, whose heart is, at the moment, in good condition, Doxorubicin has a common, but amazing (to us) effect.  He gets very neutropenic (which means that the chemo eats his white cells down to a small and critical number) and it always happens, on a bankable level, on the tenth day after his last chemo cycle started.  This is, in fact, so predictable that Bob and I can actually see the fevers coming on, pack our bags and be ready to call his doctors and drive to the hospital, all before we clock the first temperature spike… and it has been this way on every Doxorubicin cycle since August 16th, 2012.

Horrible.

Predictable.

The wretched routine becomes oddly comforting in its familiarity… the night of day #9, he cries out and sleeps badly; the morning of day #10, he lays on the couch, weak and white and his temperature hovers… and then it spikes and we are in the ER by the early afternoon at the very latest.  Every time.

Yet, as I should well know by now, the only thing predictable about Chase is that you can’t predict him.

Today is day #11.

No fevers.

As I write this, I’m tamping down the overwhelming urge to stalk him with a thermometer. He usually has fevers right now and I can’t help but feel that there’s a monster of a temp simmering right under the surface of his hairless little forehead just waiting to erupt at any moment and the slightest exertion is sure to turn him febrile and tachycardic.

(By the way, one of my many coping mechanisms is hiding behind medical words… hence, the talk of neutropenia and tachycardia)

As I thought about this all day today (and tried not to think about taking Chase’s temperature), I was struck by several things…

By how much a cancer parent hopes for the best and expects the worst
By how oddly stressful the breaking of a routine is… even a terrible routine…
By how much I resent not knowing what is going to happen from moment to moment…

As wonderful as it is to be out of the hospital, days with “The Red Devil” and unpredictable days like today remind me once again to pray for grace and take this life…  Moment by moment.

“The heart of man plans his way, but The Lord establishes his steps.” Proverbs 16:9

A Sweet And Bitter Providence

This is where we’re living tonight.  No particular reason…just because we never stop needing to think about life this way…

Life is a troubled and winding road…switchback after switchback…and the point of biblical stories is to help us feel in our bones, not just know in our heads that God is for us in all these strange turns. The life of the godly is not a straight line to glory. It’s more like a dark and seemingly unkown trail through the mountains.  There are rockslides, and slippery curves and hairpin turns that make you go backward in order to go forward, but along this hazardous, twisted road that doesn’t let you see very far ahead, and may even make you feel like you’ve been led to the edge of a cliff, God gives us encouragement and hope that all the perplexing turns of our lives are going somewhere good.  Often, when we think God is farthest from us or has even turned against us, the truth is that He is laying a foundation for greater happiness in our lives.  God is plotting for our joy.  He is plotting the course and managing the troubles with far reaching purposes for our good and for the glory of Jesus Christ.  That is a sweet and bitter providence. ~Piper

964435_194858410666871_220191608_o

Dates of Significance

July is a significant month with some very important dates and we’d greatly appreciate your prayers.

Tuesday, July 16th: Full brain and spine MRI checking on the progress of chemo and the presence of cancer.

Wednesday, July 17th: Meet with Chase’s neuro-surgeon (at which time, we hope his “squishy baseball” is decidedly less apparent)

Wednesday, July 31st: [gulp]…The one year anniversary of Chase’s diagnosis.   Great is His faithfulness to us.

Moment by moment.

Sir Chase and Lord Stanley

During Chase’s chemo stay this week, the Stanley Cup visited the hospital!

Two years ago, Coach Quenneville brought the Cup to the old hospital and vowed that he would bring it back again, and on Tuesday, he did just that.

It was an honor to be part of such a special promise-keeping as the coach and other significant members of the Blackhawks’ organization poured 219 small pieces of paper, for the 219 children staying in the hospital that day, into the Cup to make the kids part of the win.

We were allowed to have a picture with the Cup, but after a long night of chemo, Chase lay exhausted in his stroller.  Undaunted by the surgery scar, the white skin or the IVs protruding from his tiny body, Coach Q hoisted the cup and brought it down to Chase, all the while, talking kindly and softly to him and encouraging him that it was okay to touch the trophy.  Chase doesn’t always respond well to strangers and especially not in a crowd (and this crowd had a lot of flashing cameras too), but he responded to the Coach and touched the Cup…and then, even though he didn’t take his thumb out of his mouth, he gave a big smile.

[We later learned that Chase thought he had been going to view the “Piston Cup” from the Cars movie…which also explains some of his initial hesitation.]

As we thanked the Coach and moved to make room for the next family, he stopped us and asked how Chase was doing in his fight against cancer.  He absolutely didn’t have to do that, and yet, he took the time.  In that moment, we  caught a glimpse of the humble leader.  No wonder these guys brought the Cup home again.

Thank you, Chicago Blackhawks!

MbM

[for more pictures of Chase and the Stanley Cup’s visit to the hospital, please visit Chase Away Cancer, Chicago Blackhawks, or Ann and Robert H. Lurie Children’s Hospital of Chicago on Facebook]

Sir Chase meets Lord Stanley and Coach Q

Sir Chase meets Lord Stanley and Coach Q

Of Blood and Baseballs and Bubble Wrap

It’s been a while since I wrote!

Because of Chase’s second line infection, “the powers that be” decided to hold all chemo until the antibiotic finished, thereby giving Chase his largest break from chemo since March.  Almost four whole weeks in-between cycles!

We were able to do some fun things with him and we also had a new experience: his blood counts dropped significantly after he’d recovered from chemo.  They bumped back to “normal” after a transfusion, but it made us realize that our dream -that he will finish his chemo, grow his hair back, pink his skin up, and never again be in the hospital except for scans- may be slightly…okay, very flawed.  Having his counts drop was just a momentary reiteration that Chase is sick and he’s been through hell and back in treatments and that is not going to go away overnight…and possibly not ever.  God, give us strength to handle that time when we get there.

Playing with Grandma during the transfusion - before meeting "Girl"

Playing with Grandma during the transfusion – before meeting “Girl”

A comical sidenote from his transfusion:  I am becoming more and more convinced that central line pieces were not designed for active three-year olds.  In typical Chase fashion, he was so active as he was receiving his packed red blood cells that the pressure cap on the end of his line loosened, dousing his shirt, shorts, and the bed in bright red blood.  He saw it and started screaming “Blood! Blood!” which, of course, brought almost every nurse in the infusion center running into his room.  He was completely fine.  In fact, he went on to make friends with a little girl in the playroom who he named “Girl“, and when he was discharged, he went to find her, crossed his ankles, put his hands on his hips and said: “Girl? Girl! I have a problem. I have to go home now, but you will be alright. Okay?”  Just a couple of the many, many moments in which we find ourselves shrugging, smiling, and saying “It’s Chase” when we’re at the hospital.

Playing with his friend Lucas  (also on chemo for Leukemia) in the inpatient playroom

Playing with his friend Lucas (also on chemo for Leukemia) in the inpatient playroom

With his counts finally recovered and antibiotics complete, he restarted chemo on Monday and was in the hospital for three days, in which time, he managed to stay central line issue-free, but felt the need to allocate world-class neuro specialists for things other than cancer…like taking a header out of the hospital bed.  He was deemed “stable” enough to be brought home, but he has a large “squishy” section to his head (he calls it his “squishy baseball“) and we are to call his doctors immediately if there is the slightest change to his condition.  So, we watch, above and beyond, almost bordering on stalking him, and actively resist the urge to bubble wrap him as he attempts to play with his siblings in the backyard.

The "squishy baseball" - the view hardly does justice to his bruised cranium appearing to blow a large bubble, but it's the general idea

The “squishy baseball” – the view hardly does justice to his bruised cranium appearing to blow a large bubble, but it’s the general idea

At this moment, our hope and prayer is to get him through the weekend without needing to run to the ER for any reason.  And as these stories show, we often go from weeping to laughing to feeling overwhelmed and back again…sometimes all three at once, which is why we are taking the days…

Moment by moment.

 

 

Rockin’ With the Sox

Chase’s next chemo treatment has been delayed due to a staph infection (which he’s being treated for at home, and he feels fine), so his blood counts are GREAT, and he feels really good, so this break is allowing us to do some cool things, like GO TO A SOX GAME!

A few months back, someone called the White Sox and suggested that they might help our family out in some way, and the White Sox were SO generous to give us a suite in this last Saturday’s game against the Cleveland Indians.

Chase was so excited to go…

2013-06 Chase Sox

We had some church friends that were visiting from Delaware, so they were able to join us, too, as well as some other old (and new) friends who were at the game, too:

2013-06 Sox game_friends

Our family had a great time (and the kids got a cool hat and shirt, too)… thank you, White Sox!

2013-06 Family at the game