smoke clouds and silver linings

In endurance sport and in just about all of life’s challenges, the best-laid plans often go awry.

In late summer I joined Team in Training, the athletic charitable program for the Leukemia and Lymphoma society, to fundraise in Soren’s honor while preparing to race my 20^th Ironman triathlon at Ironman Lake Tahoe, on September 21st.  I did so know knowing 1) my fitness was suspect, my time was short, and I had even considered retiring 2) I’d never raised money for anything as an athlete and 3) Lake Tahoe involved major logistical challenges. But Team in Training was the signature charity of the Tahoe race, and the exceptional difficulty of the course somehow made the “representative suffering” that we do that much more significant.

Training went well, and fundraising went even better, shockingly so. It was relatively easy, thanks to you, your creativity, and your well-wishes. The logistics of getting to Tahoe presented some hurdles, first with a cancelled flight and an extra night in Phoenix en route, and next, much more worrisome, with unpredictably hazardous air quality in the area because of the King Fire. When I checked in Friday afternoon it was beautiful, and so too was Saturday through midday. But the wind shifted Saturday afternoon, and then all of Squaw Valley and the north Lake Tahoe area filled with smoke.

Race morning, all 2500+ athletes were ready to start on the shoreline. We were all anxious about the challenges of the course but race weather looked to be great. But as we stood at the starting line (and I on the front line), the first-ever announcement to cancel an Ironman race was made. It was a stunner:  ultimately, the right decision for everyone’s health, but gut-wrenching nevertheless. I wound up doing the entire 2.4mi swim with some of the pro athletes anyway – why waste a beautiful morning for a workout?

I caught an earlier flight out the next morning to arrive in NH late Monday night. Alternative race options seemed limited. I was fit, but my head was scrambled and work demands were magnifying. So right after taking Soren to school on Tuesday morning, I went out and ran 12 miles hard, just to clear my mind and use my fitness. And then a few hours later, I received an email with the crazy possibility to race a new Ironman in Chattanooga the following Sunday, September 28th. Was it even feasible? Would my newly sore legs actually heal? Would my family even put up with it (Soren said, “dad, you just got home!”)? Why even bother? We had already raised a lot of money…$8,000!  The primary mission was accomplished.

Then (as always) Erika said two simple but telling things: 1) I was fit now, so I might as well use that fitness, and 2) although I hadn’t raced an Ironman since 2011, I’d trained for two of them in 2013 (Lake Placid, when Soren got sick) and 2014 (Lake Tahoe). The entire family had sacrificed to allow me to train; that’s the challenge, the race is the celebration. So, race I would. I burned the rest of my frequent flier miles, found the cheapest lodging, car, etc I could find, told the bike shipment company to route my bike to Chattanooga, and headed out, simply, to go race an Ironman in my Team in Training kit, and represent it well.

Thank goodness for Southern hospitality. The city of Chattanooga was meant to host this race. Getting there, registered, and ready to race was easy, allowing me time to preview the course and focus.

The following morning at oh-dark-30, for the first time in 20 Ironmans, I didn’t have friends or family with me in person. Yet I knew I had a huge crowd with me in spirit. I knew I’d bottle that emotion and support and draw from it throughout, and whenever times got rough, I’d remind myself that no challenge in a race even deserves comparison to the challenges that Soren and other blood cancer patients endure. Heck, it’s not even as hard as being a parent or a loved one of a patient.

Cut to the chase: I did the 2.4 mile downriver swim in a ridiculously fast 42 minutes and was soon the first amateur on the road. The rolling bike course was four miles longer than the usual 112 miles because of traffic concerns, but I hit the 100 mile mark in 4:22 (a PR) and the final transition in 5:06. The course was fast and the weather was ideal: cloudy with sprinkles in the high 60s. The run was always going to be the challenge because I couldn’t do many miles following my knee surgery this year, so I did a planned cycle of 9 minutes of running, 1 minute walking. Even still, for most of the fairly hilly run on concrete I held steady near the front of the race.

Between miles 14 and 16 I hit a true low patch and a few amateurs passed me. I looked inward as I downed Coke. I saw the “Soaring for Soren” band on my wrist, reflected on the sacrifices, and gathered my resolve. After that point I actually got better and held it together for the remaining 10 miles, that is until the last 500 meters when I stopped repressing those emotions. The finish chute was a mix of high fives, smiles, cheers and tears, as I finished in a best-ever time of 9 hours, 23 minutes, 3^rd place among men 40-44, sixth amateur, and 35^th of 2300+ finishers. And yes, I earned my 8^th trip to Kona in 2015 for the World Championships. [If you’d like some humor, go to this link, click on the finish line video and scroll to 1:30.]

I could go on about the sacrifices and how much this race meant, but you already know this. Honestly, I’m simply stunned that I executed the race as well as I did. I can’t think of any real mistakes throughout the entire day, which is amazing given how many mistakes I typically make any given nine hours.

Now the last thing you’ll hear from me is that this was somehow meant to be, because from our introduction to this cause, to this crazy story here, none of it was preordained. We just make the best of what we have. With the example that Soren set, and your support for him and us, it’s a lot easier for me to find silver linings. And what once seemed daunting, the immense physical challenge of racing and logistically executing an Ironman, now seems relatively simple and pure.

Thank you all so much for your support.

PS:  A very telling before and after shot from Apple Harvest Day, 2013 and 2014. And fingers crossed for another checkup at Dana-Farber tomorrow.

From Chemo to Tahoe (article link)

Dear friends,

I thought you might appreciate this article just posted on Ironman.com about my race, this weekend, with Team in Training in Soren’s honor. It’s an honor to represent this cause and your unwavering support. I’ll miss my family, who have a big weekend planned, but know they’ll be with me all 140.6 miles.

Next week, Soren will head back to the clinic for a checkup, his first in two months, the longest interval since this began. He’s doing great, even better than us.

Cheers!

Vaughn (only one ‘n’ 😉 )

Soren is Soaring, and Vaughn is racing for the Leukemia & Lymphoma Society

Dear friends,

Thank you all for your love and support, especially over the past 13 months. I am sharing another chapter: I have joined Team in Training to race Ironman Lake Tahoe on September 21st.  I see this as the beginning of our charity and advocacy efforts. Please share this effort if you see fit, and click HERE for more information or to donate.

Why am I racing Ironman Lake Tahoe for the Leukemia and Lymphoma Society?

• Because 140.6 miles of Ironman racing is NOTHING in comparison to the brutally intense chemotherapy that blood cancer patients currently endure.

 

• Because our 7 year old son Soren in his 9th month of remission from lymphoma – and hopefully a lifetime – and all children deserve his world-class care.

• Because from the first meeting of morning rounds at Boston Children’s Hospital for patient Soren Cooper, it became plainly, awe-inspiringly evident that treating and caring for childhood cancer patients requires a massive, all-of-the-best-hands-on-deck approach that is sustainable only by incredible charity.   I can’t think of a better cause. Can you?

  

  “That’s Soren’s room,” says Harlan

• Because families need help in providing the support that their loved ones need to fight blood cancers, and they need your support to help sustain them. Team LLS knows this better than nearly everyone.

 

• Because it seems like I’ve been training for a lifetime for this opportunity, both as a genetics professor studying mutation and questions like “why cancer?”, and as a triathlete in my 25th year and striving for my 20th Ironman. I’m committed to this journey of making a difference for cancer treatment, as a researcher, athlete, parent, caregiver, shoulder to lean on, and storyteller.

 

• Because what a difference a year makes!
  

By participating as a member of The Leukemia & Lymphoma Society’s (LLS) TNT, I am raising funds to help find cures and ensure access to treatments for blood cancer patients. Your donation will help fund treatments that save lives every day.

Please make a donation in support of my efforts with Team In Training, at Ironman Lake Tahoe on September 21st, and beyond, and help get us all closer to a world without blood cancers.

Thank you!

Love,

Vaughn, on behalf of Erika, Harlan and SOREN.

One year.

Today marks one year since Soren was first diagnosed with something that required urgent attention at Boston Children’s. Most of you have followed our journey since then, and we’d expect most of you are surprised how time has flown by.

But this surprise pales in comparison to our amazement with how Soren looks and is doing. I’m going to let the pictures below do most of the talking, but here are a few details. Soren has gained 15 pounds and grown 4 inches in the past year, is now one of the fastest 7-yr old swimmers in New England, and brings nothing but smiles to his parents and teammates when he’s tearing up the baseball diamond. He remains the prankster, the caring classmate, the inspiring and thoughtful (at least sometimes) big brother. He might be a bit more of the cuddlebug he always was, but we’re not complaining. And he honestly doesn’t think anything of what he endured, nor does he want any extra attention for it, no matter how much we want to tousle his new, very curly (no longer straight), blond locks.

I know that many of you still want to know how he — and we — are doing, and we remain so grateful. So: we’re great. As this summer became a reality, and as the smells, and the angle of the sunlight, and the aberrant rhythm of summer camps, and the beach, and fishing, and walks to ice cream, as all of these summer-in-the-Seacoast moments returned, we were constantly reminded: this feels like last year. What were we doing last year at this time? And what are we doing now?  

No matter what the daily stress or little hassles, we know: things are fundamentally good. The amplitude of our anxiety cycle between monthly visits for checkups at Dana Farber is dampening, and as a family, we’re slowly dipping our toes further into the pool of normalcy.

As always, we thank you for your love and support.

Vaughn, Erika, Soren, and Harlan

Soren and Mom on the last day of school June 2014

Baseball skills entirely foreign to a couple of swimmer parents

Brothers and Bubba, fresh back from a trip to DC. Go Commander Harlan!

Photo evidence from the Jenny Thompson Invitational

Surf camp – one of the greatest experiences of our lives as parents

Harlan’s giant perch while Soren fights another

 

Happy, goofy cousins!

 

 

 

 

 

200 days, now, better than ever

Most days, one of our friends (you!) ask us cautiously, “How is Soren doing?” We reply, “He’s doing great. We are cautiously optimistic.”

It’s been 200 days since the beginning of our journey with Soren’s disease. On day 1, Erika was told by the lymphoma expert at Dana-Farber, “It’s great that he’s here now. A few more days and he would have been a very sick boy.”

I rode past this road on the day of his diagnosis.

Now, on day 200, he is at least 2.5 inches taller than at the end of his therapy at the end of October. He’s at least 10 lbs heavier than 200 days ago. And he’s back to being the very big, athletic boy that we were accustomed to back then. We now routinely tell him to stop growing, and he routinely says “I won’t.” We are very proud parents of our swimmer, baseball player, and young orator.

Handsome, healthy boy at the Miami Zoo over the holidays.

Soren still gets monthly checkups at the Jimmy Fund Clinic at Dana-Farber, and we’ve heard almost nothing but good things. Over the last few months we’ve had a few scares, during which we parents endured 12-24 hours of gut-wrenching worry, only to find out that he’s just ordinary, 7-year-old-schoolchild sick. And he’s recovering from these minor nuisances exactly as he should. Early last month, Soren had his port-catheter removed, and as usual he healed ahead of schedule (though his few minutes of being a little drunk on anesthesia were hilarious!).

Sundaes after the surgery to remove Soren’s port!

We know that this first year, and even the first two years, are especially important for him, so we’ll be anxious until then, and probably beyond the 5-year window of statistically permanent remission. But we continue to appreciate — and learn of the new — paradoxical gifts that this experience has given us all. We have made lasting connections with many new friends, we have deeply appreciated the new opportunities that Soren has experienced, and we have seen how Soren’s experience has helped and inspired others.

Young man, out on the town.

We are so proud to share this story from his last visit. Soren’s primary oncology fellow told him that she was caring for a young boy, about Soren’s age, who was really suffering during his first weeks of therapy because he didn’t want to have a port-catheter implanted in his chest. She remembered how well Soren had dealt with this by proudly calling the port his “robot part,” and shared this story. The boy liked this idea well enough that he agreed to the minor surgery that day. Soren has now contributed to their master toolkit of caring: the port will always be a “robot part” for young boys.

As a family, we still need that official recovery vacation and are trying to thaw out and chill out in March, but until then, we’re good. As always, thank you so much for your support!

a new chapter

…or more appropriately, a new volume.

 

At Boston Children’s/Dana-Farber, new oncology patients are presented with the book at right, the “Fish book.” This is a thick binder full of LOTS of information, and ours grew in dimension over the past months. Its messages are varied and are mostly about managing chaos. Today, we were presented with the small book at left, the “Butterfly book.” It’s much more modest. Its basic message: “This is a challenging time, but odds are good. Here’s what we’ll look for.”

Over the last few weeks, we’ve already begun making this switch. Soren didn’t miss any school for two weeks and began to find a rhythm in class, he rocked his debut swim meet, and he started to faintly regrow hair. When his doctors saw him today, they immediately remarked “You grew!” He already looks healthier than his blood values would suggest.

We also began to make the evidence of treatment less present. His medication is now simply 1 pill, 3x a week. Contrast this with his prior assortment, now set aside:

All good! So what’s next? Monthly visits with his team in Boston, who evidently miss him. No more scans, because they offer more harm than good. His chest port, the tether enabling IV draws and medication, scheduled to be removed in a few weeks.

Harlan is so obviously overjoyed with his big brother being ever-present. There’s some high-intensity sibling electricity in the Cooper household these days, usually for the better. And we parents are learning to take deeper breaths and are trying to recover as well. I marked the passage of these cycles in my own way, by bicycling repeats of the local hill. Below are my bookends:

Thank you all for your deep and tireless support.

remission

Soren’s team has analyzed his recent scan, and though it wasn’t perfect, have judged his lymphoma to be in clinical remission. No more chemotherapy, no biopsy, just frequent monitoring. This is great news (of course!).

We all wish his scan was clear and unambiguous, but we’ve learned that lymphoma winds up this way sometimes, and much more often than not, the spots aren’t cancer. Encouragingly, they were smaller this month than last, and we all hope that in time these scars will heal, now that super Soren can fly from the kryptonite prescribed at Dana-Farber.

We’ve longed for this finish line. After a tough fight and great anticipation, it appears like we’ve reached one, but we don’t recognize the neighborhood. We’ll keep you posted as we learn more, and watch closely.

As always, thank you all so much. Trick-or-treating awaits!

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.

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.

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.