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 20th 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.

tahoe_beforetahoe_after

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?
tahoebib

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.

imchoo_bib

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, 3rd place among men 40-44, sixth amateur, and 35th of 2300+ finishers. And yes, I earned my 8th 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.

boys gangnamappleharvest2014

smoke clouds and silver linings

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’ 😉 )

From Chemo to Tahoe (article link)

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.

agony hill

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

 

  • 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.

SorenButterflygarden8-14

    • 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
      “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!
    DSC_0048

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.
cooperfamily8-14

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

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
Soren and Mom on the last day of school June 2014
Baseball skills entirely foreign to a couple of swimmer parents
Baseball skills entirely foreign to a couple of swimmer parents
Brothers and Bubba, fresh back from a trip to DC. Go Commander Harlan!
Brothers and Bubba, fresh back from a trip to DC. Go Commander Harlan!
Photo evidence from the Jenny Thompson Invitational
Photo evidence from the Jenny Thompson Invitational
Surf camp - one of the greatest experiences of our lives as parents
Surf camp – one of the greatest experiences of our lives as parents
Harlan's giant perch while Soren fights another
Harlan’s giant perch while Soren fights another

 

Happy, goofy cousins!
Happy, goofy cousins!

 

 

 

 

 

One year.

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.”

agony hill
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.
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!
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.
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!

200 days, now, better than ever

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.

a new chapter

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!

remission