Chase’s cancer treatment calls for a sixth week evaluation.
It’s hard to wrap my head around having had six straight weeks of chemo already.
We spoke with the research fellow on Chase’s team yesterday and the preliminary look at his 6 week MRI showed no new cancer growth (a very real concern with an aggressive, malignant cancer) and the existing areas of cancer to be slightly decreased.
JOY.
We won’t know the full impact of these findings until after they are reviewed (probably next week) by all the relevant specialties (oncology, radiology, neurology, etc), but we are so encouraged even by what we have already heard… The chemo is working.
JOY.
I often close my thoughts with this, as it never ceases to be less true to us:
We don’t know what lies ahead, but we continue as we have…
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.
Our trip to the hospital this weekend was unscheduled, but it wasn’t completely unexpected.
Up until now–as we’ve made our decisions about Chase’s treatment plan/location–we haven’t said too much about AT/RT, but if you read “The Other Shoe” and googled that specific cancer, you probably already have an idea about what this looks like.
The truth is that AT/RT is very aggressive and doesn’t have a great prognosis (I won’t share the exact percentage here because Chase is either 100% with us, or he isn’t and that’s all that really matters). Regardless of statistics, Chase is a fighter, and the cancer’s aggressive nature requires an aggressive response.
Treatment of AT/RT is a little like a Looney Tunes-style destruction of cancer cells: they’re going to punch it, and then kick it off a cliff, and then half-way down the cliff, catch it and put it in a cannon and shoot it to the moon… then let it fall to earth to explode in a fiery ball of death in the side of a mountain (I’m picturing Wile E. Coyote in my head right now).
What this looks like in real life is: getting to know the hospital REALLY well. Chase’s treatment protocol is front-loaded to try and force a remission and so for almost the entire first half of the year-long period, he is scheduled to receive chemo every week (yes, every week).
Because of this, he is going to be in a pretty continual state of low immunity, which means he’s prone to every infection and will get fevers very easily. Because of this, he will probably have a lot of unscheduled hospital visits (like this weekend) for antibiotics, transfusions, and extra monitoring. Chase’s oncology team had been verbally preparing us for this from the first day. It doesn’t save us from seeing him in obvious pain in a hospital bed with a fever of 104, but it definitely helps prepare us to expect it.
Does it sound crazy? Yes, probably, but our son’s life is the answer to that question, so how could we ever NOT pursue this treatment.
I do not know how this year will end or what the long term effects will be on our family.
Here’s what I do know… We are going to get through it (let’s all say it together) …
Moment by moment through GRACE
The heart of man plans his way, but the LORD establishes his steps. –Proverbs 16:9
I meant to write all week and the time completely escaped me.
Here is a brief (“brief”? A bit of levity there…) update from our week.
Monday: Chase went back into surgery to have his infected central line removed and a PICC line placed (in his arm).
Some things never change. Chase, before his central line removal, explores the cupboard.
Tuesday: We finally got to go home!! …in time to meet Grandpa and Grandma’s flight. (Early bedtime? Say what?)
Wednesday: Bob and I checked Aidan into outpatient surgery at our local hospital – to have his tonsils and adenoids removed. Surgery was successful.
Having to show up for surgery at 6:00 A.M…. Well, we may recover some day. Aidan was a pro and he was genuinely excited about all the little things like monitoring vitals, the beds and the ID bracelets because he was getting to be just like Chase. Watching them compare their hospital ID bracelets was both heart-breaking and a little hilarious.
Big brother joins the surgery club…
Thursday: Thursday is our scheduled chemo day. Anytime you think of us on a Thursday, we’d so appreciate your prayers. This day meant rising early to get back to “Chase’s Hospital” (he really does call it his hospital) for his labs, chemo, and another lumbar puncture (injecting chemo into his spine). This day was INCREDIBLY encouraging to us because Chase had been able to come home for a day (something never to be taken for granted on this chemo protocol), his counts had dropped – but not as low as they’d expected (so he could come back home instead of being admitted), and despite eating almost nothing, his body was doing well on the IV nutrition and he hadn’t lost any weight since his discharge on Tuesday!
Chase, Thursday, post-op recovery
Friday: The first day in SO many days that we didn’t have to be in either a hospital or a doctor’s office. Ahhh… We ended the day with a small celebration…cuddling up on the couch in our pajamas and watching the “Apple Dumpling Gang.” Silly and perfect and all together for a moment.
Saturday: Chase had a rough night and a slight fever in the morning. The fever got higher as the morning passed and we brought him back to the hospital early in the afternoon. (fevers in a chemo patient are really important as they are usually indicative of a system issue that the body can’t fight due to it’s lack of white blood cells).
Sunday morning: I’m writing this blog post from an inpatient room in “Chase’s hospital.” Chase will be here until he completes a course of antibiotics, the fever is under control, and his blood counts start going back up.
Even though it’s hard to be back in the hospital, we have so much to be thrilled about this week… two kids through two surgical procedures in two hospitals with no complications, Chase doing far better than expected, for longer than expected after his chemo clinic, and getting a special family evening to relax in the middle of the chaos.
Today is day five of Chase’s first treatment. Every time they’ve hung another bag or started a new infusion, I find myself tensely thinking “Wait for it, this is the one that is going to make him code…”. (sidenote: a chemo treatment room is a great incubator for illogical fear)
Each day has brought new information and and sometimes overwhelming experiences…
Reality: this chemo is so powerful that we can’t even change his diapers without wearing gloves.
Reality: my son has a surgically-placed double hose into his chest (which will remain with him for the duration of his chemo) that I need to learn how to clean and care for.
Reality: he hasn’t eaten almost anything in over 48 hours and is on a constant IV for his nutrition.
Reality: one of the chemos is making his jaw hurt to the point where he cries out anytime he opens his mouth…even in his sleep.
I want to keep writing “reality” and listing all the other things that are bothering me or that make our life sound very extreme and dramatic, but just now, I need a reality check, and since you happen to be reading this, you are coming along with me.
Reality: my son is in the final day of his first round of six chemos and he hasn’t coded over any of them, in fact, his nausea is mostly managed by a couple anti-nausea meds and the nursing staff said he is doing incredibly well given his difficult protocol.
Reality: we live close to one of the top treatment hospitals in the nation in an age when they know what AT/RT is and can treat it (even as little as five years ago, this cancer was still fairly unknown)
Reality: “God is always doing a thousand things when he does anything. And we see but a fraction.” John Piper
