The shadow has descended again and I’ve found myself unable to write because of it. Three whole months have passed like the snap of a finger and once again, we stand in front of the two doors: the next MRI is in less than 48 hours.
Technically, the shadow of relapse is always with us, but we feel it ever so strongly the week before the MRI. I wasn’t going to write because I’ve had no words -only fears and fighting fears- and I’ve wanted to be silent in my thoughts and prayers until after the results are known. However, today, I was reminded to open my hands. To relinquish again the dread of the unknown to the One who knows.
So, tonight, I finally sit and write. I still fear much and fight the fear, but today, I opened by hands – a thing I haven’t done in too long. I needed this reminder that Chase is not ours to keep. In fact, none of our precious littles are. They are our entrusted treasures and we are their stewards. We’ve gathered them around us in front of the two doors and we wait… with open hands.
Moment by moment.
The earth is the Lord’s, and everything in it, the world, and all who live in it. Psalm 24:1 [NIV]
Today is a big day for Chase! He has routine appointments at the hospital (not big), and he and Daddy are going by themselves!! (REALLY big!)
Bob is looking forward to some bonding time with Chase and I (laid up with a concussion at home – a story for another time) am trying not to call them every few minutes. 🙂
Two things to note…
1) Chase is a Chicago Bears fan and wanted me to point out that he’s wearing his Bears hat.
2) Look at Chase’s face! I know this picture isn’t the best, but he’s visibly filling out! I love it!
Brain…clear. Spine…clear. And the areas of fluid they’ve been watching? …smaller!
Chase’s doctor said that the images were perfect and exactly what they’d hoped for.
It’s official. Chase has finished his chemo therapy with no signs of cancer.
How I wish his scans would stay like this forever! They may, and they may not… but either way, they are clear right now and in that we have so much joy.
Last night, I wrote about a second day of testing. This has now been moved to next week due to some scheduling issues and the post-procedure counsel of the ENT.
We’d so appreciate continued prayer for Chase, especially tonight as it’s been a long day and the anesthesia was rough. He’s having significant ear pain – a common side effect of the procedure – which has him screaming at anything pitched over a whisper in the house right now. We have been told that it will pass in the next 24 hours and we pray that’s true.
Thank you for coming on this amazing journey with us. God is good.
Moment by moment.
Chase resting at home tonightI couldn’t resist adding this picture as well. It takes a pretty amazing dad to escort his child into the OR *and* rock the outfit while doing it. 🙂
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.
[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]
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
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).
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
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]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?
![Meeting Jonathan Toews. Note the basketball in hand. :) [photo courtesy of the Chicago Blackhawks Facebook page]](https://i0.wp.com/efamily.brevis.me/wp-content/uploads/2013/04/Toews.jpg)