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

9 thoughts on “a new chapter

  1. jess rooney gallagher says:

    Vaughn & Erika,

    I am so overjoyed that Soren is doing well. Glad to hear that he is thriving and that the typical busy cooper lifestyle has resumed. Miss you all!!! Let me know the next time you are down in Boston 🙂



  2. Joanne says:

    This is the end of volume one of a most beautiful love story. As with all life, we don’t know the script or the end of the story but the Cooper’s know for sure that every day is precious.

    I will miss the updates but so happy to think that life is heading to your new “normal” – and look forward to getting updates when I see you back in the “hood” on campus.


  3. Jennifer Hedges says:

    Yeah!!! I am so happy to hear the encouraging news. Soren is such a wonderful little guy and we are so glad to have him back “full time” in the classroom.



  4. Cheryl Burnside says:

    I’m so glad to hear that things are moving more towards normal! Fingers crossed that you all are able to enjoy the up coming holidays 🙂


  5. Pam Wildes says:

    I have been quietly reading your posts for a few months now and am rejoicing to see this last post with good news. I imagine you feel a little bit disoriented with the constant traveling nearing an end but on the same token, incredibly relieved. I am absolutely amazed at how resilient your son, Soren, is as I’ve read about him here and at my age, rather envious.

    It must seem for you that your regular busy (normal) family activity schedule seems somewhat like a vacation after all you’ve been through.

    Time to enjoy the holidays!


  6. Rachel says:

    This is so fantastic. I have been thinking of you all while I am away in training. What an amazing little boy (or should I say young man) and what an amazing family. If I don’t see you before the holidays have a wonderful season and many well wishes from our family to yours.




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