In the mid-90s there was a short film about Dana Farber that was shown before movies at most theaters in New England. I can remember seeing it any number of times — and having it followed by the theater ushers walking up the isles with their donation cans outstretched.

Over the past two years I have thought about this film often. Every time we go into the clinic I stand for a moment at those same windows, staring at the now completed building — the same building we’ve walked through probably hundreds of times to get from Dana Farber to Chez Healing. I’d wonder what became of those children, whose names now lie hidden beneath concrete and sheet rock, but which no doubt echo through those rooms. Or what about the one construction worker who talked about the importance of people donating if they can, saying to his fellow workers, “Maybe one day they won’t need to build these buildings any more”?

If only – for today they are constructing another building right next door. When VB started treatment they were just beginning to prepare the lot. As treatment drew to a close we watched them dig deep into the earth to lay the foundation and put in a parking garage 7 levels-deep. Then last week, on the day we got the bad MRI news, we watched the scaffolding rising into the sky. As VB looked on in fascination, I steeled away to the craft table in the clinic waiting room, grabbed paper, marker and tape, and called out for the workers to bear witness.

They did.

On those beams are the names of both children and adults who have waged this battle — and VB’s name is there as well. When I first saw it upon returning to clinic for yesterday’s procedure, I wondered if perhaps some of his energy would live there  — offering comfort to those will walk those hallways one day. I then wondered if we would one day walk there — back “in a treatment way”.

For now, it looks as though we may not. Yesterday’s CSF test was clear, and the treatment team is leaning towards this recent panic NOT being relapse, but instead an after-effect of radiation therapy known as demyelination. Now, before you go Googling it  — you will find little information on demyelination relative to radiation therapy, but lots related to other neurological disorders. So rather than digging empty holes, let me just say it’s a far better outcome than relapse and leave it at that. This is not a definite answer — but there are more elements to the story that send the team in this direction than “Big Bad C”. In the coming weeks VB will have a PET scan and another MRI to track things closely, with more frequent MRI’s for the foreseeable future to ensure that this highly educated guess is actually the right one. At the same time, we will endeavor to learn more about this potential new friend in my son’s head, and add it to the list of “Late Effect Buddies” we know come with survivorship.

Tonight VB asked VM to read him Curious George, and talked happily about the Valentine cards he received at school — none the wiser to the scare that has come and hopefully gone. His birthday party will go on as planned in a week — which is good, since hand-made invitations by VM have already gone out. And VM and I will breathe, pick up our tools, and go back to the re-construction of our lives.

Thanks to all of you for once again holding us up this week.


About vampdaddy

Father...Sage...Artist...The Weird One...I am many things to many people. View all posts by vampdaddy

15 responses to “Builders

  • Miss Ann

    Here’s to picking up the tools. And breathing. yay.

  • Heather

    While I hear how complicated and imperfect this result may be, I am glad that it is much the lesser of two evils. Much love and happiness to all of you…

    – Heather

  • Sara Desrosiers

    Tym, my children are 5 yrs and 15 months. My heart goes out to you, your child, and your wife for the battles that you have had to wage. So glad for a hopeful outcome.

  • Patti C

    Today, I will be saying thank you, over and over and over and over again.

    Happy Birthday VB and have a wonderful, joyful birthday party

  • mumma boo

    Oh thank goodness. Deep breaths all around. (And that clip still makes me weep. All the more poignant now that VB’s name is among them.) Big hugs to all of you, my friend. Happy Birthday, VB! Enjoy that party!!!

  • Cousin Jill

    What a sigh of relief. I have no no words for what you must of gone through these past few days. Our thoughts will continue to be with all of you.

    Love ~Jill & Mark

  • Becky

    Thank God for good news. My thoughts and prayers are with you and your family always. Send VB a big HAPPY BIRTHDAY from me and I’m sure all of us who follow your journey! Here’s to MANY MORE!

  • Francesca

    a warm hug. to many many bday parties !

  • heather~*

    Here’s hoping that VB’s greatest concerns will be Valentines and birthday parties…

  • Jim and Nancy

    What a rollercoaster ride you 3 have been on. All we can add is if your love and devotion could cure your son, he would have won this battle long ago. You two are amazing!

    Our love and prayers are with you each day.

    Hope VB has a wonderful 4th birthday!

  • TwoBusy

    (exhaling, uneasily but gratefully)

  • grengrl

    I thought good thoughts for you all weekend and this is much better news to come home to. I will continue to with VB well and a birthday full of happiness and joy 🙂
    -Heather B

  • Annemarie

    I am keeping you all in my prayers every day.


  • Janette Daly

    Have just read your recent updates (I hadn’t checked on you all for a while)- my heart sank when it looked like VB had relapsed, so GLAD it looks more like the lesser evil. Keeping you in my prayers.
    Connor’s mum

  • Papa Bradstein

    Holy crap. I missed so much when I didn’t update my feed reader to your new address. I’m glad to hear that this scare seems to have passed and that you were able to celebrate another birthday in a more celebratory mood.

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