Chase – Page 19 – CHASE AWAY CANCER

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.

We 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.

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).

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.

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

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

The Running Of Chase

This weekend, we’re trying a video blog! I’d introduce it, but our little movie does it all for me. 🙂

[Please excuse the poor editing! I am still learning!]

Have a wonderful weekend!

~MbM~

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”.

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

~MbM~

Of Donuts and Tacos…

On several occasions, I’ve referenced Chase’s central line, his weekly labs and his dressing changes, but today, I’ll be a little more specific. This morning, we took pictures of Chase’s dressing change. The hope is that he could see what’s happening from a different perspective and that it would help him overcome his anxiety.

I need to preface these images by saying that it is necessary to hold Chase down with very little mercy for his own protection. Despite months of talking, processing, and role playing, he becomes protectively enraged, and rightfully so, when anybody even gets close to his line and he must be still for a successful change. When the dressing is off, one can’t even breath in the direction of the line without risking contamination…hence the nurse’s mask and our heads turned away from the uncovered site.

As I debated whether posting these pictures serves a helpful, edifying purpose, I decided to write this piece and use the pictures because this is part of our every week and even if you must look away (and I wouldn’t blame you if you did!), I hope it will encourage you how to pray for Chase (and his family) in more specific ways.

After being restrained on a flat surface by no less than two people (but preferably three…or four), Chase’s old bandage is stripped off. This is without question the most tedious and the longest part of the entire procedure. This is an area that we hope and pray tubes in his ears will improve. When he’s screaming at the top of his lungs, he is unable to hear our assuring, calming words in what I can only imagine is a complete nightmare for him.

Here is a great and close view of his central line – and his poor and chapped skin, raw from months of bandages and tape. These moments after the bandage is stripped when the line is completely exposed (while being cleaned and dried) are some of the most scary to me. He struggles the hardest at this time and I find myself thinking that it would take so very little for him to pull it out – risking infection and embolism.

After the line site is cleaned and dried and the nurse changes her gloves (this is how seriously sterile the care is – the same gloves that strip and clean the old can’t lay the new), the re-dressing begins with this bio-patch: a medicated, padded piece that releases antibiotics to keep the line clear and safe. Chase calls this his “donut” for obvious reasons. In this picture, he was beautifully silent and calm for a breath. More often than not, he screams “Band-aid! Band-aid!” as he knows that the last step of the change is the bandage and he desperately wants to be done.

And then the bandage and tape are on and it’s done! It’s hard to explain the flood of relief as we sit him up, sobbing and laughing at the same time. Another week without mishap…thank you, Lord. The entire process takes less than 15 minutes or a couple decades…depending on which body part you’re restraining.

In our house, because it’s Chase, we reinforce the dressing with an ace wrap. The wrap, his “taco” (because of how it wraps around him like a burrito), is never off except for dressing changes. We learned this the hard way after losing a line in the Fall.

And then it’s five minutes later and the fight is a distant memory. He loves everybody again and he’s busy watching a Disney show on his iPad while Phyllis, his home healthcare nurse draws his labs. And by the time she leaves, he says “Bye, Miss Phyllis! Thanks for changing my donut!”

In closing, holding him down and watching him fight against this simple facet of care each week is extremely intense to me, but I am always so encouraged that this, this is the level of fight he brings to the cancer battle. Almost makes you feel sorry for any tumor willing to take him on, doesn’t it? 🙂

Moment by moment.