shades of grey, part 2

Soren had his follow-up scan yesterday, as many of you know. We appreciate how intently many of you are following his progress and have been awaiting news.

We remain, officially, in a holding pattern as the details of the scan are being considered by the team, and we’ll know more later next week. The news appears to be good:  the overall picture of his liver was improved, with no new spots anywhere.  However, some remain. A biopsy remains part of the conversation, although these are often negative or inconclusive. So there’s a reasonable possibility that we are done for now, save for frequent monitoring.

As parents, learning to live with the uncertainty of remission is one of the greatest challenges. We have to reorient ourselves to the conviction of hope. Unfortunately, guidelines for this process are one of the few things missing from the thick reference binder provided by Dana-Farber.

Most importantly, Soren is doing great even as he recovers from his last cycle. This week at swim practice, Soren’s group was doing underwater kicking drills with fins. We couldn’t believe as he did repeat after repeat of nearly 20 yards underwater, enjoying each one. All with barely more than half of his red blood cells! We are so proud.

shades of grey, part 2

Mile 20

When we were getting ready to leave Boston Children’s hospital on Thursday evening, one of the nurses who has come to know Soren well took me aside and asked if we would like a celebration for Soren completing his scheduled chemotherapy. I said, “thank you very much, but no.” From my expression and tone, she understood why, and politely and efficiently helped us on our way.

The 20-mile marker of the marathon is well known by runners to be a daunting threshold: many say the race begins at this point. Energy levels fade, gaits change to compensate for the fatigue. Great races erode for many at this point, but a rare few rise to the occasion and finish strongly. Add a 2.4 mile swim and 112 mile bike as prelude to that marathon, and the mile 20 marker blurs amidst a haze of accumulated weariness, but remains momentous.

We feel like we’re at this very marker, like here, on the Queen K highway returning to Kailua-Kona.

It’s a long and mostly barren 10K home from here

Each time I’ve been there, I’ve noted the 20 mile marker, thought “only 10k to go,” looked at my watch and thought than any of countless 10k’s in training would get me home respectably. It always takes longer and much more out of me from this point on: you have to really want it and dig deep to hold it together. The fact that Ironman is a family investment makes this challenge both bearable and incredibly meaningful.

For Erika, the closest analogy might be overtime in a championship water polo match (something that we recall vividly 10 years ago this month). You get 5 minutes to regroup, and then you and your teammates go out to resume two more 3-minute periods to decide the fate of your season. Again, a complete team effort required, nothing less.

In our figurative 10k or overtime ahead, we have the immediate post-treatment nausea, low blood counts, and assorted symptoms to handle. For Soren, this has been fairly trivial. Below is how he spent his morning before a bad headache sent him home a bit early for a nap and more medicine:

Much more daunting is his next scan this coming Thursday, where we now recognize that we will almost certainly be dealing with shades of grey (literally for the images), several days of consideration and consultation by the teams at Dana-Farber, and a delayed decision that could span a range of outcomes. We could be done (!), declared in remission and assigned to regular monitoring. This is the fleet-footed route to the finish line. Or, Soren could face a biopsy when his counts rebound, followed by a subsequent week or more of uncertainty. This is the workmanlike, more painful approach. Or we could face a much, much longer road of more chemotherapy. I’m not sure what the analogy is, but I think I’ve seen what it looks like, both in races and on the pediatric oncology floor.

Mile 20 is both grounds for immense hope (so close!) and heavy foreboding (so far!). Thanks to all of you who are part of our team.

Mile 20

home stretch

Like any great competitor (yes, as proud dad I can say this), Soren is finishing this last of the planned cycles strong. Even I, who has grown accustomed to Soren’s ability to duck many of the side effects that are ever-present here on the pediatric oncology wing at Boston Children’s, am amazed. By sticking to a regular regimen of anti-nausea meds and keeping Soren active, he has generally been in great form. Hall-ball, Wii baseball and Mario Kart, math, writing and reading exercises, art, legos: he is exactly what you’d hope from a 6-yr old cooped up in a hospital.

Below, a portfolio of the last several days with a bit of commentary. Thank you to all for your concern and support.

a rough snapshot of the first treatment. note the chartreuse color on the one line

After a few up-and-down days over the weekend for Soren, the whole family came down to visit and share the day, plus a bonus visit from buddy Jos:

Captain Underpants for Soren, green popsicle for Harlan. Good times!

Soren continued his Lego creativity and was happy to entertain the staff:

I remain Stash-Tastic!

Today, we had a huge day working on our vehicle assignment for the 1st grade class at Berwick. We won’t share Soren’s work just yet, but it inspired all of us here. Let’s just say it’s amazing what you can do with medical supplies when you’re feeling craft-y.

Still, we won’t presume that we’re out of the woods. Tomorrow is another spinal procedure, which often brings challenges. And we will hope that the lingering abnormalities aren’t the match of the rest of super-Soren, but rather weakened mutants of his irrepressible self. So we hope for HOME tomorrow evening, and then another fateful scan the following week.

 

home stretch

once more into the breach

We’ve heard from other cancer survivors that at some point your experience simplifies and you hope for little more than a magical ANC (absolute neutrophil count) value over 1000, so that you can move on. When we got word from the clinic that Soren’s numerous monocytes in Tuesday’s sample gave birth to many happy neutrophils today, we were actually happy. Yeah! Soren’s blood counts actually caught up with his energy and spirit.

But then the reality of what this number earned us started to sink in, and we found ourselves making analogies to existential absurdity, or to races or practices we finished painfully, wondering why we had started them in the first place. At the very least, Soren’s team has convinced us that what Soren needs is another cycle, regardless of that ambiguous scan, and so we head back down early tomorrow morning.

For some reason every time I see the nurses in protective clothing and heavy gloves hook up a scary-looking bag of a chemotherapy drug (WARNING: CYTOTOXIC!), I always think that we’re crossing another Rubicon. At least this time (like last time), there will be no shocking red color of doxirubicin to match that of the Rubicon river, so rich with iron ore. Instead, it will be another continuous 5days of Ara-C (with my favorite sugar, arabinose, present and essential), plus spinal therapies on either end.

Soren says “I just want to get this over with.” Amen to that. He’s stronger and readier than we are, for sure. Below are some pictures of how Soren and I took advantage of our unexpected freedom this Tuesday afternoon: skipping stones in the Little Bay on Dover Point. Good looking sidearm, my boy!

once more into the breach

robot part on the fritz

After too many blood draws to count, and on the day when Soren actually reminded us to apply his lidocaine cream 45 minutes early, Soren’s “robot part” (his name for his access port in his chest) prevented a good sample. Of course: to remind, his white count dictates whether we resume chemo tomorrow or wait still longer.

So we’ll head down to Children’s tomorrow and cross our fingers that the team can reboot the robot part, that Soren’s weekend naps and renewed cheer is matched by his blood values, and resume the good fight.

(and maybe a solo room or great roommate? please?)

Whoop ’em Buckeye style (for Bubba) on Apple Harvest Day
robot part on the fritz

rollercoaster

I’d prefer to write about the ups and downs of the Kancamagus highway and the Franconia Notch bike path, which was my therapy yesterday, but I’m afraid we need to share our latest treatment rollercoaster.


In our last post we shared the ambiguity of Soren’s scans, which showed vast reduction of his tumors that disappeared except for several small spots on his liver. His team at Dana Farber emphasized that this was a great response, and that the spots on CT may actually reflect scars rather than active disease because his PET scan was negative. Yet for a few days, the path forward was unclear to all of us. We found ourselves challenged to focus on anything positive, instead dwelling on the uncertainty: stay the planned chemo course? Biopsy (minor or major)? Switch to a much more aggressive chemotherapy regime?

However following several conferences of increasing size and combined experience, Soren’s team decided that proceeding with what they knew was working, the original chemotherapy plan that is scheduled to end after this upcoming cycle, was preferable to more invasive surgery or treatment with uncertain benefit or outcome. As a quantitative, statistically minded couple, Erika and I understand this and are/were resting more easily with this decision. But the nature and future of these spots still gnaw at us. Regardless, there will be another scan in a few weeks.

However, to resume chemotherapy, a patient’s white blood cell count must rise above a certain threshold (ANC=1000 if you want details). On Monday, Soren’s dangerously low hemoglobin/hematocrit was beginning to rise (must have been those laps of cycling at the PMC ride!), but his white count was below threshold. We figured that he’d bounce back by today (Wednesday) but no such luck: instead, he is now lower than ever. We can likely chalk this up to two things: first, his protocol no longer includes these injections of Neupogen/filgrastim to stimulate granulocyte production, and second, he’s a 6-yr old back in school, so he’s obviously seeing all sorts of new viruses. In fact Soren has had a runny nose and cough since late August, so it’s probably not surprising. As for why no injections, well, this is the irrationality of chemotherapy protocols that frustrates me on a different level.

(Reading above I can tell that I’ve been back doing a bit of science again. This sounds like a script from Grey’s Anatomy.)

So this latest set of twists and turns leaves us heading back to the clinic tomorrow for another blood test and an evaluation of why he’s neutropenic. But then likely we’ll head home to rest, await another test, and find the earliest day he can resume his — hopefully — final cycle of chemotherapy, just like the last one.

We have to close by emphasizing how much our “Soaring for Soren” bands, yummy meals, thoughtful cards and gifts mean to us. And above all, how inspiring Soren is. It was easy for me to ignore my cranky hamstring while “Cranking the Kanc” with just a simple thought of him leading a fast break in soccer or racing his buddies in the pool, blissfully ignorant to his physical challenges. I’ve heard the same from many of you, either in the pool or on land.

PS: Stay away from our son when he turns 16. Following his go-kart experience, he drives like a hybrid of my sister and Ayrton Senna.

rollercoaster