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.


8 thoughts on “rollercoaster

  1. Joanne says:

    “In the depth of winter, I finally learned that within me there lay an invincible summer.” Albert Camus

    You all seem to embody this sensibility

    With you in spirit,



  2. Jenny Jacobsen says:

    Wow, our boys response to chemotherapy sounds so very similar. Between consolidation rounds Henry too had a time getting numbers back and they took a second dip after they seemed to be recovering. His kidneys (not liver) also didn’t look quite right, but I was told that they looked as good as can be expected considering the condition they were in when he was admitted. I know how you are feeling and envy your knowledge of the science behind these decisions. I want to tell you that Henry’s recovery after his final round was much quicker. I assume when a healthy kid gets sick, he’s got a strong and well equipped machine heading into the battle. They adjust so quickly to treatment. They are so resilient. Henry has an ultra sound scheduled on Tuesday to get another look at those kidneys. I have every confidence that they will look great because he looks great. I wish your amazing son continued health and resiliency. I wish you and your wife peaceful sleep and escape from your worry. This side of the journey is nothing but sunshine and you are almost through the clouds.


  3. Jenny, this is so wonderful to hear even as I know it means you were/are equally pained. So happy to hear that Henry is doing great. We will be thinking very good thoughts on Tuesday for his ultrasound. If he bounces back, Soren may be admitted on Tuesday also.

    We hope you’re resting and enjoying the sunshine, both actual and proverbial.
    Best wishes


    1. We didn’t know about this and haven’t yet connected significantly with LLS. This would be great, but odds are good that Soren will be inpatient and we’ll be committed. It looks like a great event, have fun!


  4. Carol Glover says:

    ANC counts are the coin of the realm in cancer treatment. It still sticks with me, that feeling of waiting for results. I haven’t forgotten the sick feeling I had from a couple of days before testing was to be done until we got results. That sense that your whole world may rest on a number was very disconcerting even for a health care professional.
    The world of cancer treatment may be compared to a roller coaster ride, but I always felt it was closer to the Tilt-a-whirl as we were jerked around and sometimes made dizzy by the high-speed direction changes. Thinking of all of you and understanding the endlessness of it.


    1. Beautifully written by someone who truly gets it. Don’t neglect the nausea of the Tilt-A-Whirl either (I always avoided that ride); this isn’t empathy for his medicinal unease but rather a deep-rooted dread. We remain grateful for his boundless energy, ANC or Hct be damned.


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