Help a Child Smile

Last Monday, Caleb, Nella, and Aleah posed in their Help a Child Smile t-shirts. They were thrilled with their shirts, even if they were afraid of the party. Nella and Aleah wore their shirts to gymnastics, prompting many new conversations about our family's journey with Caleb. It's a good way to get the word out, I suppose.

It was steroids week last week. I am tired of steroids. Today at clinic, we parents (mostly moms) sat and more or less complained about how difficult it is to endure steroids week. It is really great to talk together; we all know misery loves company! Thankfully we can laugh together. When we are trudging through steroids week, it's hard to laugh, but it's good to laugh when it's done. The change from "on steroids" to "off steroids" is stark. I know that we will be able to time when the steroids have worn off, as we adjust to our new normal. I think that Caleb, as we know him to be, returns on the Monday morning around 3 am. We'll see if that's the pattern that continues next steroids week. That will be the week leading up to the New Year. If we had not been delayed a few weeks ago, we would have been on steroids over Christmas. Thank you God for the gift of that delay.

Part of the agony of steroids is the bone pain that Caleb endures on the withdrawal day from steroids, Sunday. He begins with pain on Sunday morning and it continues until 3 am on Monday. I currently cannot give him any strong anti-inflammatory meds because he's on blood thinners. I'm hoping that will change. For now, I have tylenol and magic bags that can help take away the pain. Watching him endure that pain, and express his anger about having pain, is pain in itself. He is, once again, such a brave soldier. We've been talking more and more about why he has "zuchinia" and how that makes our life different, and what it takes to make it go away. I love hearing him explain it to me, or Nella, or friends, and am impressed with what knowledge he's gathered and retained. I grieve deeply when he talks about the things he can't do, or the pains he accepts, to get rid of leukemia. Hearing him talk, like so many other things, is a big mix of joy and pain.

All in all, we're doing well. Steroids week is over, and we're getting back to normal. It is a great and wonderful thing that Caleb wakes up as his usual self on Monday morning. He had a great time playing with his friend Anna on Monday, and today we took the sled (no, not a snowmobile, my Exeter friends) to clinic. At the hospital today an O.P.P. officer gave Caleb a lego car, and Caleb was thrilled. The officer tried to be subtle and passed me another one for later, but Caleb caught it. So now he has two lego cars. Don't hire that officer for surveillance or anything requiring sneakiness.

We haven't been as prompt with updates lately. I don't think it's because nothing is going on, but I do think we're tired. We need the Christmas break, which it truly will be. We have, out of necessity for Caleb's health, limited the number and size of Christmas get-togethers and social activities. We miss our extended families and friends very much, but we know that keeping our family healthy is priority this season. Hopefully the snow sticks around so that we can get in some good cross-country skiing and tobogganing!