We are sitting in the surgery waiting room and I wanted to give a quick update on Chase’s procedure…
We got to clinic early this morning (where we meet with his neuro-oncology team) and were told that in discussing the anesthesia issue further, it would be best to put a new needle in the port before Chase went downstairs for his procedure. They know Chase and knew that his fear of a dressing change/new needle is nothing compared to an anesthesia mask.
I should note that he was able to be without a needle in his chest for close to an hour and he spent that time dominating the clinic floor, running back and forth in his gray camo pants and no shirt, proudly displaying his “no tubie” chest to any and all who would look at it.
In this moment, we are so thankful for a team who sincerely considers Chase’s best interests.
Because he had the needle placed, he was able to have the IV Versed (forgetting medicine) and as I walked alongside his bed to the OR doors, he said “It’s okay, Mom. You can go now. I’m going to take my nap.”
Moment by moment.
[picture: that first moment when the needle came out]
Chase’s doctor once told us that most parents know it’s time for more chemo when they see their child looking better, eating more, and having more energy. Proving this theory, Chase’s Thursday lab results were really encouraging which means we are scheduled to go back to the hospital on Monday. It’s time. This particular round of chemo includes several days of being admitted to the hospital as well as a spinal tap under anesthesia.
You may remember that I wrote at one time about Chase’s vivid anesthesia memories. Since that time, we have had really good experiences because he has been given a “forgetting” medicine in pre=op -while still with us- that relaxes him and saves him the memory of a sterile operating room and a mask over his face all without the comfort of mom or dad.
Because of some aspects of his new central line, Chase’s nurse will be removing the needle from his chest a couple of hours before he is scheduled for the spinal tap. It’s a little tragic as there will be no shower or swimming pool to jump in and celebrate [children with the type of central lines he’s had until now can’t really bathe or swim], but mostly awesome as he has never officially been without his “tubie”. However, there is a direct impact on the procedure. The lack of needle in his chest means that there is no good way to administer medicine in pre-op, which means that Chase will go into the operating room by himself and be put under anesthesia while fully concious.
We have been talking about it every day. How he will be a brave boy, and how he will take a deep breath and fall asleep, and even how -if he can be still- the doctors won’t have to hold him while they put the mask on his face. He dialogues with us, and understands what he needs to do, but he is still very frightened.
Please pray for Chase on Monday, that he would be anxious for nothing and that God’s perfect peace would surpass and even confound all of our understanding about how Chase would most likely respond in that operating room. (Philippians 4:6-7)
This will be a big step for him and for all of us…but our God is much bigger.
This video is a small introduction to Chase’s attending neuro-oncologist, Dr. Rishi Lulla. We have been and are being so blessed by this amazing, compassionate, and dedicated doctor who exemplifies the phrase “above and beyond”.
Make sure to watch this…you might even recognize some people! 🙂
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
Sidenote: we often tell hospital staff “It’s Chase.”…as in “Yes, we know this rarely ever happens, but….it’sChase.”
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
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 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
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)