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

13 thoughts on “200 days, now, better than ever

  1. Robin says:

    Soren is such a remarkable, handsome young man. I am not surprised in the least that he’s made a difference in other patient’s lives. I’m positive he’s going to help many young children overcome the fear of getting a “robot part”. I just love this update! It is just what we all want to hear, that he’s doing great! Paul and I will continue to think of you, Erika, Harlan, and Soren as each day goes by. Love you guys!

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  2. Joanne says:

    Thanks for a bright start to the day! Such good news for Soren and family.

    Health (for all) is nothing short of a miracle, all systems working on cue and in sync. You, for sure, know this to be true. Enjoy the new outlook on life!

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  3. Debi says:

    Soren is amazing! We know that the mountains your family has climbed this past 200 days have made you stronger.
    Our love and support are always with you.

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  4. Terry Metivier says:

    We are so happy about Soren. He has really grown since we saw him the last time. We are sorry we didn’t get to see all of you the last time we were there. Both boys are so cute! Please give them hugs and kisses from us. I hope you and Erika are doing well. I keep all of you in my prayers.

    Love,
    Terry

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  5. Sarah says:

    This is such great news. As Erika well knows, that question of “How is your child doing?” is one that is always frought with anxiety for both the asker and the askee. I feel so happy for you guys and blessed to see Soren swim his backstroke at the SSA meets and kick butt well ahead of the other boys! He’s such a strong boy, has fought this fight valiantly.

    It’s been helpful talking to you guys. As we continue to forge ahead with combatting Molly’s illness (albeit, a different clincial process altogether) we both understand the panic and hope that can occur simultaneously as a parent. Erika truly gets the meaning of “How are you doing?” question and how the answer changes day to day, hour to hour, minute to minute.

    Thank you guys. Soren is such an inspiration, as are you both in fighting for a child’s recovery. Looking forward to seein him swim in many meets going foward!!!

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  6. Rich & Madeleine says:

    Great update. We’re so glad things continue to go well! And the story of how Soren helped the other boy come to grips with his “robot part” is a real gem.

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  7. Pam Wildes says:

    The stance and smile of Soren in the photo with the giraffe just about says it all. There really are no words. So very happy to see continuing “good news” updates. Rock on Cooper family!

    Like

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