Chase’s counts are finally recovering from his last round of chemo! Yesterday evening, we received word from the hospital that he has been cleared to come in on Monday. His levels aren’t exactly where they should be, but are very close. It is our hope that his Monday labs will reveal he’s fully recovered and that he can be admitted for the week. We don’t hope this because we love chemo, but because Chase only has two chemo cycles left! …and then he’s done!!
We would so appreciate your prayers as these last rounds are, in many ways, the most difficult. The protocol doesn’t change, but his body is exhausted and each round seems to take it’s toll quicker and more painfully than the last.
Monday
With a long but encouraging clinic day behind us, I gently lifted Chase onto his hospital bed. We had just finished several rounds through the halls on the tricycle and he was finally ready to rest. After chasing him with a rolling IV poll and protecting/pleading for caution with his central line, I was also ready to rest. As I lifted him, his face contorted in pain and he let out a warning scream -I’d seen it a hundred times at home- the line was pulled tight and the IV tubing stretched from the pole to his chest. I quickly gave it slack and laid him down. He’s an active boy – this happens all the time.
Then he contorted and grabbed his chest, still screaming and crying – this did not happen all the time. With an all too familiar feeling of dread, I raised his shirt to see dampness around his central line dressing. Not again, please, not again.
The doctors and nurses confirmed what we feared. The line had been partially pulled from his chest when the IV tubing caught on the pole. With his new central line -a port- this wasn’t the same problem it would have been, say, two weeks ago – just remove the damaged needle and put in another one. The main features of the access are protected under the skin. It would have been so easy but for the chemo. There was chemo infusing when the needle moved and a particularly vicious one at that. Known for harming tissue and muscle; there was a small but very real chance that instead of going into the vein, the damaged needle had spewed this poison into the muscle around it.
For several hours, there was an intense spiral: immediately discontinue use of the port….apply ice…had we heard about the antidote?…IVs needed in his hands to keep him hydrated…surgery for a temporary line in the morning…and on it went. The door to our room was a constant portal to more poking, prodding, and bad news. Please God, no more…
In the early afternoon of Tuesday, for the second time in about 24 hours, Chase was taken into surgery to place a temporary line. Moments before he went into the operating room, I received a text saying that a friend of our dear friend would be the nurse on duty in the room. I can hardly explain the encouragement it is to send your child into that cold, dark, unconscious place with a familiar face and friend at their side. A blessed moment in the chaos.
Despite the completed access surgery, there will still be more unfolding consequences of that malfunctioned needle. His hands are bruised and scarred from all the IVs, both failed and successful. He shows signs of the broken trust that comes from hours of people touching and hurting as they’re trying to save your life – anytime someone enters the room and greets him, he screams “No!”. The port must be left alone for at least a week -maybe two- to guard against the chemo damage, and when he leaves here, with his temporary line (in his upper arm…again), we will have to vigilantly continue to watch for the signs of that wretched drug doing its harm.
The irony of these last two days is that when you’re first given your child’s diagnosis, you expect that horrifying knowledge to be the all-encompassing stress and grief. In this moment, I can assure you that -at least in our case- it’s the little things, the daily, the back-and-forth, the multiple procedures. Those are the things that kick you when you’re already down.
But…
In this moment, he’s laying on the bed sleeping peacefully. …snoring, actually. His punctured, bandaged and tubed arm propped on pillows. His mouth relaxed from its pained expression. Peace.
“He leads me beside still waters. He restores my soul.” Psalm 23:2b
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
Radiation day #2 started at the radiation building, and then due to a fever, moved to the outpatient oncology office, and then to the local ER, and then to an inpatient room, and then discharged from the local hospital to the special transport team, and finally, taken “sirens and lights” to Chase’s hospital.
Waiting in the oncology office after radiation
My apologies for the run-on sentence. It was a run-on day. Because of the fever, radiation is currently suspended.
Posing with some members of his spectacular transport team …headed for “his hospital”
Since I last wrote about Chase (a veritable age ago), he has been discharged from his sick visit, readmitted for his inpatient chemo, and re-discharged post-chemo again.
Chase in the midst of his first admission for a fever, with his NG tube in his nose.
The five days in between our hospital stays were packed and precious with family times, in which we saw the truth of doctors words – “Just wait until you get him home.” Chase became a different child in those five days! His color improved, he started talking and interacting more, and even ate food! (Note: this is a big victory for an AT/RT patient as their protocol is so intense that many children stop eating altogether. Chase still needs IV nutrition on a daily basis, but just getting him to the table is a big deal.) The doctors also said that most parents mark the time by this – “When your child starts doing really well, that means it’s time for more chemo.”Check. Time for the big bags, long infusions, and constant monitoring that goes with his inpatient chemo stays.
Chase swinging on the swing with Daddy during one of the few days at home from “his hospital.”
It’s amazing and a little sick how quickly we adjusted to this “normal”. In fact, we are already forming a routine. This is a blessing, but I truly never thought there would be a day when medical staff hourly monitoring my child’s vitals around the clock would be expected. (Have I mentioned recently how incredible the medical staff is? I should. They are.)
At this moment, we are on the other side … Heading for the “nadir,” the low point. (Real talk: I had go look up “nadir” when I first heard it. In a word, it’s the opposite of “zenith”…ie: when Chase is going to feel absolutely awful). His color is not as good, he’s more tired and irritable, and he regularly complains that his “tummy hurts”. We can tell that his counts are dropping: he’s already clocked in with a couple low grade fevers and we know its only a matter of days before the fevers truly set in and we will be inpatient again.
Chase’s chemo day was switched to Mondays and so we will go back tomorrow for what should be an outpatient clinic day. …but we’ll pack our bags anyway, just in case.
Chase during his inpatient chemo this last week.
Becoming accustomed to living a life that could be dropped, switched, and hospitalized at any moment is a challenge. It’s hard not to be consumed with watching Chase for changes and stalking him with a thermometer in hand (it’s a funny picture, but I’m often tempted…), yet it’s just another facet of the “moment by moment” mindset we keep ever in front of us.
And so we continue on … Making memories, finding joy, and being ever ready to go.
