Rain, Rain, Go Away…Amelia Is Finally Ready to Play!

Originally Posted Jul 17, 2009 6:33am

It seems that the other Portland on the 44th parallel has carbon-copied its climate and stapled a rain-soaked missive onto my evergreen state. Our plague of slugs now count mosquitoes, and – gasp – a second-coming of black flies, in their slimy, buzzing ranks, thus causing me to throw up my hands and leave my garden to their will. Maybe, just maybe, I’ll be treated to an heirloom tomato from my own patch of earth this year, but folks, I’m not holding my breath. Oh well, there’s always the Farmer’s Market.

Though our weather has necessitated much indoor play and craft time, Amelia and Molly have gotten out a few times. As mentioned in my previous post, we attended Dan Zanes’ concert at LL Bean, preceded by a picnic at Wolfe’s Neck State Park. The sun did make an appearance that day, but exercised a little self-control – a great thing when your pharmaceuticals make you susceptible to sunburn, as they do for Amelia. We had a great time at the show, though Amelia was feeling a little bit tired by that point! Her energy certainly makes gains every day, but she doesn’t yet have the stamina that we have been accustomed to over the years.

Amelia’s new chemo protocol began this past Monday and was, overall, uneventful. We did opt to participate in a clinical study which is attempting to learn if four extra doses of PEG-Asparaginase (a protein which prevents cancer cells from reproducing) can boost the cure rate of kids with Amelia’s type of cancer and risk level to 100%. Our feeling is that Amelia’s successful treatment thus far is due to the thousands of kids before her that have selflessly given themselves over to these studies – some far more painful and riddled with side effects both short- and long-term – and we owe it to the kids that come after her to refine their treatments even further.

With all of Amelia’s questions regarding how, precisely, cancer works, we have naturally moved into complex biological discussions. She wants to know everything about everything, and is absolutely insatiable! We’ve covered cell division, mutation, organ function, types of cancers, and evolution, and now we are bushwhacking into new territory – reproduction (pardon my inappropriate wordplay – sometimes I just can’t help myself). If I may have a weak mother moment – yikes! Aside from these lessons in the ways of nature, we are trying to pass our time in the outdoors as much as said nature will permit. Amelia’s legs are growing stronger every day, she is relearning to run and jump, and as she loses the weight she gained as a result of the steroids, her balance and good spirit have returned.

While I shake my fist at the sky, filled so often with these dastardly clouds, I am grateful to see Amelia’s transformation from hospital-trapped sick kid to a person who smiles, plays jokes on her friends, and offers hugs on her own volition. She is a sister again, a daughter again, and a friend again. Because Amelia slipped away so gradually, we didn’t fully grasp how much of her was missing until she came back. We are grateful too, to all of you, for your good wishes. If we could ask for one small favor though: Someone please call the Weather Channel and inform them that Oregon has misplaced its rain, and we would like to return it immediately - Amelia wants to play outside.