Today marks two weeks of being home without a hospital admission. And even better than that Des is moving around more than ever…WALKING.

His steps are still unsteady but he’s moving getting around more every day. And pretty soon I’m sure he’ll be back to running.

When I first titled this whole blog a couple of months ago I wasn’t sure when I was going to see Des actually run again. The title I chose had a mixed meaning; running alongside him in this long marathon but also looking forward to that day when he’s feeling good enough to run.

That day is getting closer.

This week we’re also celebrating Des’s birthday week (a tradition in our house) with little surprises each day leading up to his actual birthday. Some highlights so far; “camping” in the fireplace room, pizza and a movie, a talking Batman action figure, and of course…LEGOs.

Here are some medical updates:

• His g-tube was switched out to a button style. This is great because we can just connect an adapter when it’s time for his meds or feed then take it off when he’s done. No more dangly tube.

• This Thursday is the scheduled date for him to start the next phase of treatment (the second half of “consolidation”). As long as his blood count numbers look good that morning we should be good to go for IV chemo. We’re praying that fevers don’t return this time.

• He’s really doing well with eating and keeping food down. His TPN (IV nutrition) is stepping down as he eats more and we are very excited about that.

Other updates:

• Sara and I got our Moderna first doses on Saturday. We were on a waitlist for extra end-of-the-day doses. Sara got the call that afternoon and we were jabbed 30 minutes later.
• Luke and Solomon are in the final trimester of school. They’re both doing really well but learning way too much and growing too fast.
• Sara’s Dad has been furiously painting the upstairs and the boys’ rooms. It looks great and it’s a huge improvement over the green hallway and faded beige bedrooms. Solomon picked out a nice classic gray. Luke chose Easter Egg Blue (grandma’s description). Des got a yellow so bright that I don’t know how he’s ever going to fall asleep in there.

We’re really doing well. Thank you for the cards, messages, calls, prayers, food, and reading these updates. We feel completely loved and lifted up. Thank you for carrying us and walking alongside our family.

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Matt