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!

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200 days, now, better than ever