Equilibrium

Between our scare with seemingly harmless skin irritation and the rough stretch that Dayton Children's oncology unit has had lately, we feel like our sense of equilibrium is off. It has been hard to feel secure in much of anything. I am happy to say that we are starting to make some progress and our days feel a little bit more like we can manage and survive them. Our "hope meter" is slowly crawling back up. We continue to pray fervently that Maggie's cancer never makes a comeback.

Maggie is on steroids (Dexamethasone) this week, and that presents some challenges. Tomorrow (Friday) is the last day of the nasty stuff; a dose in the morning and one in the evening. It is nasty in the way that it makes Maggie feel and act, and it happens to taste awful, too. This is the one of only two medicines that Maggie doesn't enjoy tasting now. Whitney is lucky enough to get to administer most of the doses now, and she has to lean Maggie back (while Maggie screams and flails her arms) and force the liquid into her mouth. It smells a little bit like rubbing alcohol, or paint thinner, or......I don't know what. It is bad. It isn't pleasant on the way down or once it circulates through Maggie's body. But, it is supposed to fight lymphocytic cancer cells, so it is a no-brainer.

I believe that Whitney has a countdown going, 62 more doses of the stuff before Maggie is off treatment in June/July. Maggie takes two doses per day for five days, one week of every month.

That being said, I am grateful that we are where we are in treatment and we can all tolerate steroid rage. It is inconvenient, but not the end of the world. Our perspective has changed.

Maggie had probably her best physical therapy appointment to date on Wednesday. She is quite fond of Nancy who has tolerated months of Maggie crying throughout her appointments. This week there were no tears, for the first time that has happened for the entire 30 minutes of exercise and play. Maggie is beginning to pull up on certain toys and furniture, cruising around, and crawling up stairs. She is less often found locking her knees as she stands, which means she's beginning to gain some muscle in her legs. We are so happy to see her progress and look forward to the day when we can announce that she is taking steps!

The clinic visit Maggie had on Monday showed her weight to be the highest ever, 24 lbs. 15 1/2 ounces. She is now in the 10-25th percentile! The TPN is obviously working, though her pre-albumin (what measures the nutritional status of her body) has dropped considerably in the last couple of weeks. Though we are trying not to read into anything, we do wonder what might be causing these levels to drop while there is evidence through her weight that she is obviously gaining nutritionally. She is not gaining on height yet, however Dr. French said height and head circumference are the last to catch up. We are very happy though to have her gaining and might I say (this is Whitney speaking), she is becoming quite the lug to carry around. I have told her she needs to start walking soon because she's just getting too big!

Finally, we know that it is hard to follow Maggie's story sometimes--it isn't pleasant or easy to have to think about what she's gone through. We appreciate that you've stuck with us and that you continue to support us in so many ways. We haven't used this blog as a forum to express our thanks to individuals, churches, families, friends, strangers...so many people. But we are blessed through the care that you provide, from prayers, cards and toys for Maggie, to gift cards and meals brought to our doorstep. We are humbled to have 87,000 hits on our webpage (and counting)--it is proof that we're not alone. There are so many ways to measure the support that we feel and we wish we could thank all of you individually. Until we find a way to do that, please know that we are grateful for what you all have done.

Blessings to you all, until next time.