Saturday, February 22, 2014

Steroids done (for now) & Stomach bug.

After a long week of grumpiness, tears, and broken sleep, we gave Watts his last dose of steroids (for this round) last night. Whew! It generally takes a day or two for the drug to get out of his system so hopefully by Sunday night Watts will be back to normal. This round was a little different than the times before because Watts didn't seem to have much of an appetite. He nursed normally but wasn't the eating maniac that steroids usually brings to us. I've read that this can happen and that each steroid round can bring us new side effects, but this one was a little more stressful since we want him to be maintaining (and gaining!) weight. We added in some bolus feeds of organic whole milk + yogurt that he seemed to tolerate fine.

We are scheduled to go on Monday for outpatient chemo and an IVIG transfusion. We will have three weeks of outpatient chemo with weekly appointments and chemo pushes at Brenner and daily oral chemo given at home. In three weeks, we will start back on the awful steroids.

*The hard week was made a lot more tolerable by help from friends (thanks Marianne and Francie), surprise tulips on the porch, a quick date with Michael, warm weather so we could get outside, and some well-timed time out of the house for me (thanks to Michael's persistence).

Unfortunately, just as we were starting to breathe some deep sighs of relief after giving Watty his last steroid dose, Piper started throwing up and now has a fever. While Watts is not severely neutropenic at the moment, if he catches this virus it could mean another admission for us. Please pray that he miraculously doesn't get it. Please pray for continued wisdom for both Michael and me. We agonize over when to allow Piper to go to church events, play dates, etc. and are trying to find a balance of living life and protecting Watts. We have aired on the side of protecting Watts the last few weeks but allowed Piper to attend an event mid-week with Michael . . . sadly that's where she most likely caught this virus. Although this makes me want to lock my family in a bubble until treatment is over, I know that that would not be healthy for our sanity or developmentally appropriate for Watts and Piper. Prayers appreciated. All of this feels tricky to navigate through...

UPDATE: Piper's fever is down and she seems to have more of an appetite so hopefully this was only a 12 hour bug. I feel a little queasy but thankfully have a strong stomach and immune system and should be fine. The boys are great so far!

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