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Henry’s Story

Welcome to Henry's CaringBridge site. I've created it to keep friends and family updated about Henry's treatment for acute lymphoblastic leukemia. We appreciate your support and words of hope and encouragement during this time when it matters most.

P.S. We hate cancer and hope you feel the same.

Latest Journal Update


Hi, friends.

Sorry for the long delay between updates, but all-in-all, I am thrilled to report that there hasn't been a lot to report. Henry continuesto chug along fighting his GVHD stomach issues and still has pneumonia in his lungs but has done remarkably well since being discharged from the hospital in January. He is still on long-term steroids to fight the inflammation from GVHD in his digestive tract. Steroids also have the nice side effect of reducing inflammation in his lungs and making breathing easier. Unfortunately, steroids also have a pretty dramatic downside, most notably that Henry has extreme mood swings and has an extremely difficult time controlling his emotional outbursts. He ends up in tears at least a couple of times per day. He becomes inconsolable over non-existent issues, cries it out and then feels very sorry when the outburst is over. I feel so bad for the little guy but it has been tough on the whole family working around the blowups. We continue to work with Henry's local oncologist and our wonderful transplant doctor to do what we can to get him through the weeks and months when he still needs this medication. For now, he is still on a full medication regimen and his port is still in his chest. We give him an anti-fungal medication via IV each night. He is still hoping to have the port removed and enjoy some fun in the sun this summer but even he remains cautiously optimistic about the prospect of having the port removed prior to the trip to Disney in June. One cool and weird thing is that Henry hasn't liked cheese since basically birth and all of a sudden he is craving all kinds of cheesy stuff. The photo is of him at his favorite restaurant, Red Rossa, where they know him by name (and his order).

Otherwise, Henry is a happy and kind-of healthy little boy right now. As a parent, I try to enjoy every moment with him, even the tough moments. We came so close to losing him and we are still reminded too often that nothing is guaranteed in this process. A little girl from Sioux Falls who also received a transplant at the U of M just learned that her cancer has recurred at day +80. Reading that news over the weekend was like being punched in the stomach and it reminds me that this cancer is extraordinarily difficult to beat and there are no guarantees for any of our little fighters. Please say a little prayer for Kaitlyn and her family. They are facing a very tough week filled with decisions that no parent should have to make. Ever.