That Time We Went To The Hospital…

These last two weeks have seemed a little like a single long day that wouldn’t quit!  As parents of a child with cancer, we have been carefully prepared to be ready at a moments’ notice to pack and run…and pack and run again, but this has been extraordinary even for us.  When I think through “moment by moment“, I never expect each new moment to be totally different from the last, but that’s exactly what this two-week day seemed to hold.

It all started as we commuted to the hospital for five straight days of all-day chemo infusions [insert comments and mutterings about traffic here] .  We were mercifully able to be home on Saturday, but on Sunday, our best layed plans for “normal” and “rest” were blown to smithereens as soon as I heard the words “Come quick! Chase is bleeding!” and realized that one lumen on his central line had torn.  …so, back to the hospital we went.

A lumen repair kit...aka: needle salvation
A lumen repair kit…aka: needle salvation

Sidenote: we often tell hospital staff “It’s Chase.”…as in “Yes, we know this rarely ever happens, but….it’s Chase.”

Back to the story… in true “It’s Chase” form, Chase’s line tear was in an area for which they had no repair parts, so after hours in the ER and the vascular access team weaving what can only be described as a sterile burrito (comprised of alcohol wipes, gauze and tegaderms) around the line -to protect from the errant bacteria-, we were discharged.  Until Tuesday.  When we went back in for blood and platelet transfusions and the line repair.  We left that same night and managed to stay out until…Wednesday night.  A whole 24 hours.  At which point, Chase hit his chemo nadir (when the chemo is at it’s strongest point), spiked a fever, and after sitting in the ER until 2:30AM, were re-admitted to the hospital.

We were hoping to go home fever-free sometime on Thursday when the newly repaired central line malfunctioned (see: more blood everywhere) and so we didn’t leave until Friday night.  I should also note that we’ve become very close with the vascular access team.  On Friday night, the stability of the line was still somewhat in question, but with nobody finding anything decisively wrong, Thursday’s blood experience was chalked up to a freakish incident of nature and we were discharged with the niggling thought that the line would only ever show it’s cards once we left the hospital…and got home…and tried to rest.  …which did indeed turn out to be the case.

The malfunctioning repair
The malfunctioning repair

On Saturday night, about an hour into Chase’s infusion, I realized his IV fluids were running down the front of his shirt, so after a brief moment of parental freak-out, I calmly put my eyeballs back into their sockets and we went back to the hospital.  Triage in the emergency room lasted so long that by the time the doctors came to look at the line, they declared everything dry and in need of testing.  After an hour or more of testing, it turned out that the line was leaking, so around our favorite admitting hour (2:30am, for those of you just joining us), we were again given a room with the promise of surgery consults in the morning.

Without a doubt, the worst part of the loss of a central line is the need for peripheral IVs (the kind they stick in your hand or arm).  For Chase, that usually means three to five people holding him down and the collapse of at least one vein from his terrifying struggle to escape the needle.  If you were questioning why we’d put up with a central line and all it’s drama in the first place, don’t miss this… The reason we put up with and even love the central line is because it saves Chase from needles.  Medical staff can draw blood and administer any medication or chemo through this line – without ever touching his body.

Proudly displaying his IV - "You should see the other guy!"
Proudly displaying his IV – “You should see the other guys!”

It took four people and two tries, but they finally got an IV in Chase’s hand.  And that concludes the events that led to Chase going into surgery on Sunday afternoon and getting a new central line.

Which summarily ended our two-week long day.

You can’t make this stuff up.

Moment by ever-changing moment.

The heart of man plans his ways, but the Lord establishes his steps. Proverbs 16:9

Sleeping peacefully in pre-op moments before he was taken back to the OR
Sleeping peacefully in pre-op moments before he was taken back to the OR

Catching Up On Perspective

As I break my non-blogging streak and think about the last several weeks, I find myself reflecting on perspective.  I will get to that in a minute…

On March 25, Chase had his ear surgery.  We don’t yet know how successful it was (he will have a follow-up hearing test at the end of May), but as we sat in post-op, he turned to me and said “Mom! I can hear!”  I cried.  His expressing this was all the more amazing because we had prepared him for putting tubes in his ears, but we didn’t set him up for any results.

That moment in post-op
That moment in post-op

PoisonWe finished four days of chemo on Thursday of that same week and just as we were so close to discharge that we could practically taste it (if hospital discharge orders were something you could eat), Chase spiked a fever and we had to stay for several more hours until the staff could better understand the cause of the fever.  Such are the hazards of having a central line.  We were finally discharged late that evening.  Chemo

Because we had spent those extra hours getting blood cultures and antibiotics started, when Chase spiked another fever around 3:00AM on Friday morning, it resulted in a simple phone conversation with the (incredibly gracious) oncologist on-call and not a summons to the emergency room.

That Saturday (the day before Easter), Chase again spiked a fever and by this time, his Thursday cultures needed to be redone and so we were sent to a local emergency room for blood work and more antibiotics.  A small part of me wondered why he never seems to get fevers in the middle of the morning.

Chase was mercifully discharged from the local ER around 12:30AM and we all got some sleep and were fever-free enough to go to church together on Easter Sunday morning.  One word: glorious…and refreshing…and encouraging (Okay, more than one word…because it really was that precious).

Happy Easter
Happy Easter

As we drove home from church, I glanced at my phone’s call log and saw the (way too) familiar area code…I had just missed a call from the hospital.  “There was a bacteria found in the culture from last night.  It’s in both lines and it’s growing fast.  I’m not saying you have to drop everything in this moment, but we need you to get Chase here sooner than later…and make sure to pack…you’ll be here overnight.”  …and just that quickly, the holiday was over.  We’d managed to stay out of a hospital for a whole twelve hours.  As we pulled out of our driveway minutes later -still in our Easter finery with our hastily packed bags- and we waved goodbye, I felt a weight descend…it shouldn’t be like this.

In the ER on Easter
In the ER on Easter

Chase cleared his infection (the origin of which was never completely known) and we were discharged within a couple days as he had no more fevers.  In fact, he was the only one in our family who stayed healthy as all the other kids went down with a high fever virus that lasted for several days.

During the same period, Chase’s counts dropped from the chemo and we were back in the day hospital for transfusions.  Chase was in isolation, but did have the privilege of meeting Chicago Blackhawks captain, Jonathan Toews.  Chase tried to offer him a basketball.  To Toews’ credit, the professional hockey player was very gracious.  That same day, the son of a dear friend was in surgery at the hospital.  Putting aside a long story for another blog full of interventions and orchestrations; if we hadn’t been there for transfusions, we would have missed a great moment to serve and encourage our friends.

Meeting Jonathan Toews. Note the basketball in hand. :) [photo courtesy of the Chicago Blackhawks Facebook page]
Meeting Jonathan Toews. Note the basketball in hand. 🙂 [photo courtesy of the Chicago Blackhawks Facebook page]
Transfusions complete, we waited for days…just waiting for Chase to get hit with the virus that all the other kids had.  Then, we got a call from his nurse saying that they were all surprised to find out that he’d recovered from the chemo much sooner than expected and he didn’t need any more transfusions.  Translated: we could stay home and rest.  The worst of the cycle was over.

We rested all week and then returned this past Tuesday for the big, under-anesthesia, check-the-whole-brain-and-spine MRI.  After three months, was the cancer still staying at bay?  Would there be a recurrence seen in the pictures?  No.  We have yet to discuss the scans in detail (we will see the pictures on Monday in clinic), but the bottom line was this: things look good.  Chase’s attending neuro-oncologist said that this is what is hoped for and desired.  Another clear scan.

…and to this day, Chase still hasn’t gotten sick.  The doctors believe that the antibiotic he was on for his line infection protected him from all the germs in our house.

So, if we hadn’t had the fever before we left the hospital, we wouldn’t have been able to stay home on Friday, and if we hadn’t gone in on Saturday night, we wouldn’t have been able to be in church on Sunday morning, and if Chase hadn’t had the line infection (which caused us to miss part of our Easter holiday) at all, he would never have been protected from the flu and pneumonia in the house.  …and if he hadn’t needed transfusions, we never would have been  there for our friends and been able to connect with some really cool Blackhawk fans.  Some correlations are more obvious than others and for some things (like the scan) there is little correlation at all; just joy.  But for the rest: perspective.  This season continually reveals to me that what seems sad and wrong often leads to visible grace and beauty.

As I look back on these weeks, how will I choose to remember them?

“All around

hope is springing up from this old ground

Out of chaos life is being found in You.

You make beautiful things.”  -Gungor

Moment by moment.

Free From The Sting

photo-2

As a Christian, Easter is one of the most important times of my year. It’s the season I set aside to celebrate what Jesus did for me, but this year is more precious as I consider how the events of Easter fit into our cancer world.

I believe with all my heart that Jesus is the son of God, that the Bible is true, and that the promises it contains are real and this is why I so often include verses in my blog posts–to remind myself of what I know to be true when my circumstances are overwhelming (which they often are). In those moments, I literally have the physical sensation of drowning.  Believing as I do doesn’t change the pain of cancer or anything else in this life, but it can and does change how I face the drowning moments.

Often, like the thief on the cross next to Jesus–not the mocker, but the other–the weight of life and pain (some self-inflicted, some not) closes in and I cry out.  And then comes the reply,

“Truly, I say to you, today you will be with me in Paradise.”

That’s it! This is the answer to the agony. The pain and suffering is only a season, because death is swallowed up in Jesus’ glorious victory and its sting is gone. One day soon I will be with Jesus in Paradise!

Because I know God made me, and I will be in Heaven with Him forever when this weary life is over, I am freed from the drowning to feel joy in sorrow and peace in chaos. Death may be sad, but it need not sting because this life is not the end, but the beginning.

In the midst of this cancer world, there can be incredible, inexplicable peace because my ultimate struggle has already been resolved. My sin was taken care of on the cross by God Himself! All that happens in my life is what He lovingly allows for His pleasure and glory. Someday I will be complete and lacking in nothing and with Him forever in fullness of joy.

This is my cancer foundation. This is my life foundation.

Moment by moment.

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Revelations 21:4

Labs And Colors

Usually, I would only post this on Chase’s Facebook page (and it’s actually up there too – apologies for the double time), but he was just so cute, I had to share on the blog as well.  Chase loves the White Sox and makes a point of taking his special baseball (and as much gear as I’ll let him take) everwhere he goes…even into the MRI machine!  Every Thursday is a lab day and this morning, Chase refused to do his labs until he was properly suited up with his “gear”.

Chase shows his colors
Chase shows his colors

[note: that large monstrosity in the foreground is Chase’s 20+ pound, 16 hour IV bag]

~MbM~