PMC kids ride

We’re so glad we were able to join you all at today’s PMC Kids ride in New Castle. Thank you for such enthusiasm for such a great cause.

I’m happy to share a bunch of pictures from today: here

We’ll keep you posted, and fingers crossed.

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PMC kids ride

update

This is just a quick update because it seems that our last post on Thursday evening didn’t make it to many email subscribers.

The latest: Soren made it to school yesterday and to soccer this morning, both of which are simply remarkable given that he’s carrying only about half as many red blood cells as normal. I’m pretty sure most of us would be laid flat. He might have run fewer counterattacks, but he still scored a few and helped his team do well. It is affecting his mood and challenging us as parents a bit.

Unfortunately, the uncertainty of his treatment plan remains. His oncology team is indeed encouraged by the response and by the normal PET scan, and the CT scan shows vast reduction. However, several small spots in his liver remain on CT, which could mean that next week they a) stay the course for 1 more cycle of “consolidation,” b) biopsy and then decide, or c) decide to switch him to a much longer course of treatment. We emphasize that his team remains very optimistic for a complete remission, but the uncertainty of what will happen in the next days, weeks, and months is honestly much more challenging than the previous several weeks, when the schedule was largely known. We do know we’ll be headed back down on Thursday 10/3 latest.

I want to offer huge thanks to the enthusiasm for tomorrow’s PMC kids ride in New Castle, not just for team “Soarin’ for Soren” but also importantly for “E Team” for Ethan Hawes, who began his fight against multiple myeloma at the same time as us. This is a great event and cause; we’ll do our best to attend. Soren audaciously said he could ride the full 17 miles this morning; although I don’t doubt him, I think his team at Dana Farber might object.

Another giant THANK YOU to the donors from Thursday’s Berwick Bulldog Golf Classic, whose donations were entirely unexpected.

And finally, feel free to share this with others that you know want information; avoiding the retelling is helpful. Thank you for your understanding.

update

the scan

When you’re facing one of the more momentous decisions of your life, one that is entirely out of your control, it’s often best to just put your head down and work on something that you CAN control. Today, while awaiting Soren’s PET/CT scan, Soren killed marauding pigs with flying angry birds (or ran around temples), Erika reconfigured online forms for swim lessons, and I edited a long-neglected manuscript. Even little parts of these tasks that escaped our control became major annoyances: a right hand encumbered by an IV, a lousy VPN, a bad file format.

Truthfully we’ve been silent for the last several days because there’s simply too much to say. Some great: Blue&White day with friends, a Boston Red Sox game (Sox win!) with a fabulous behind-the-plate view, a first Seacoast big-kid swim practice, soccer practice, mom’s birthday (bike ride and cake). Some annoying, like a day of school missed because of uncertain blood pressure and levels. And some simply too much to write in a blog, like what this scan means to us: a giant, pivotal fork in the road. Tears shed and sleep lost are just minor features. I’ve found myself increasingly incapable of answering the “How are you doing?” question.

I can say this: you would never know it from his activity, cheer, and normal 6yr-old behavior, but Soren is just narrowly avoiding a transfusion and mandated rest given his blood values. His hematocrit is 22, hemoglobin is 7.3, and ANC at 900.

**a few hours now past, scan over, 2h in traffic, awaiting for the phone call** 

The scan results: agonizingly uncertain. The good: the PET scan, which tends to show more false-positives, was clear. The bad: the CT scan still showed a number of small abnormalities in his liver. Scar tissue, remaining lymphoma, or otherwise? The team at Dana-Farber will discuss, evaluate, and plan, with the outcome ranging from stay-the-course, to biopsy, or to a shift to more aggressive therapy.  Next to Soren, I (Vaughn) am the optimist, and I believe that dead lesions take time to disappear.

This is a lot of heavy information for a well-read blog, and we apologize. We want you all to know how much we dearly appreciate all of the thoughtful gestures, donations, good vibes, and yearning you are sending our way. We feel them.

the scan

not my best day

“Not my best day,” said Soren this afternoon. He is pretty run down after continuous chemotherapy since Thursday. He has picked at his meals for the last few days (except for pancakes this morning, which he devoured after no dinner the night previously) and has had to work hard to be social and active at much.

There were a few notable exceptions: a battle royale of Mario Kart with buddy and former roommate Jacob (age 10), some excellent math homework that he showed off during morning rounds (thanks Berwick buddies!), and some pillowcase sewing with some great volunteers.

Yet I was nearly brought to tears with pride by the number of very kind complements other grown-ups (nurses, doctors, volunteers) gave him today. “Doing so well!” (many times over), “So polite and grown up!  I can’t believe he’s only 6 the way he speaks.” “So funny, what a joker!”  That’s our boy!

Like parents of any 6-year-old, however, we do get the private challenge of a new reservoir of will to be testing and challenging. Even under the weather, Soren is a skilled negotiator.

Tonight, the chemo drip ended, and he’s now enjoying a night of rest (we hope) before another intrathecal chemo treatment. If he recovers well, we might go home tomorrow night, which we (especially Harlan) would all love.  Our major scan, scheduled originally for tomorrow, was postponed for next week’s clinic visit, which is just as well. We’ll all have been challenged enough by week’s end.

Still rocking his Billy Idol hair, the envy of the pediatric oncology floor

 

not my best day

just the facts

We’re back in Boston for the first of two scheduled cycles of “consolidation,” which involves an initial high dose of IV chemo, two spinal taps with chemo, and continuous (5 day) low-dose chemotherapy. This may sound awful but it’s actually somewhat lighter than the previous two cycles, although it involves new drugs (one is called cytarabine or Ara-C, which I’ve spoken about to some of you and will someday blog about for its irony).

Soren was awesome for his spinal procedure this morning, in which we applied our knowledge from past sessions: a bit more sedation and more immediate anti-nausea drugs made for a happier boy. Still, he didn’t eat much and stayed in jammies for most of the day. Thank goodness that the Princeton v. Santa Clara water polo game was televised tonight on ESPNU and gave us something to look forward to.  Mom was so proud to hear that her boy was screaming at the television about lazy defense and poor shot selection.

Everyone here on 6 North at Boston Children’s says “Soren looks great and is doing amazingly well” …these are the facts. We parents, and occasionally his medical team, then include the subtext: “…for a young boy undergoing high-dose multidrug chemotherapy.”  All signs are pointing to his potential to undergo just one more of these cycles next month, provided his scan at the end of this month is as promising as they hope. At the very least we can say, for now, the bumps are gone.

We can also easily say that Soren is handling this treatment a heck of a lot better than we are. He doesn’t feel well? Ok, a little anti-nausea medicine, a little pain medicine, a vanilla milkshake….problem solved!  Even better: college football or the Red Sox on TV? We should all be so lucky.

I’m afraid here that my own knowledge doesn’t help. Treating childhood cancer is not like adult cancers (with their own unique approach): it is necessarily aggressive, the drugs are ugly, and quite literally are the same ones discovered by the founders of this institution (Farber himself for methotrexate) 50-60 years ago, well before the biological basis of these cancers were even imagined! Yet the statistics are well in our favor and his doctors are extraordinary. Each day at a time.

So we’ll hope that the next few days here go as well as today or better and we’ll head home Thursday night. A visit would be welcome if we’re in good form, so stay tuned. We’ll conclude with a pic of our defiant boy’s last soccer practice, along with one of his biggest fan:

just the facts

worth sharing

A little news and a few great photos:

-As some of have you have seen in person, Soren is doing very well. He was so proud to have outrun his dad uphill at yesterday’s triathlon, and swum like a fish at the Million Meters benefit. It’s remarkable because last week he really was quite sick from the chemotherapy, but we keep saying, children are amazing.

-Soren is enjoying school M-W of this coming week before beginning another seven days of inpatient chemotherapy at Boston Children’s on Thursday. This involves new medications and two more of the spinal taps (with chemo) that he’s been enduring in past cycles. At the conclusion of this cycle, he will have an important scan — his first in six weeks — that looms large.

-Erika and I both remarked that the benefit yesterday felt like our wedding reception: so many dear friends and so little time to share with any of you.  I’ll try to post some more information — a FAQ — tomorrow, but other thoughts and emotions will take a little more time.

We remain overwhelmed and are more inspired than ever.

a few meters of our own

The fearless leaders of One Million Meters

 

worth sharing

awe-inspiring

ONE MILLION METERS PLUS (1,020,683 and counting!)

(and an incredible sum of fundraising)

It’s safe to say that Erika and I thought that today’s One Million Meters for Soren benefit was going to be big, but we didn’t have any idea it would be SO BIG. There is a long list of individuals and groups whom we wish to thank, and we’ll get there, but a few key thanks to start.

Jenny Priester and Nicole Benson, who dreamt of this big goal and event and made it a reality
Great Bay Masters, aquatic lifers like us (119,000m, not bad for us old folks)
Growing Places, our school and family
The Seacoast, UNH, UNE, Exeter, Phillips Exeter, Otters, and Berwick swim and polo teams
The UNH Campus Rec community
Berwick Academy teachers, students, and leadership
The cancer community we didn’t know existed until recently
Nature’s Way Market, for nourishing a lot of hungry swimmers
Our family and dear friends, and many others we will remember

More generally, we are so proud to be part of an aquatics community that is so generous, sincere, and committed. This event will clearly allow us to pay all of your good will forward.

We are sad we missed our chance to speak to so many of you individually, but we’ll connect as soon as we can.

Today was a day probably better served by pictures, but we were too busy soaking up the incredible experiences for photography. Please send some to post!

THANK YOU

P.S. Those of you who got back into the water for the first time in a long time, just on our account, really touched us. We hope you keep swimming.

awe-inspiring