Our New Normal

Hi everyone,

Glad you all got to see the euphoria of our homecoming, thanks to our wonderful neighbors who showed Allison just how special she really is. The fire truck and visit with the firefighters was especially cool, and one neighbor said there was not a dry eye on the block. I know I cried a river of joy that night and I will not soon forget how wonderful it felt to bring her home. She was overwhelmed with happiness. The look of contentment on her face when she lay down in her own bed was spellbinding.

She may look a little different, with stitches all over the place, and with a couple of new added items in her body (a shunt, mediport), but she is minus one yukky tumor, and she is still the same girl. Everyone wants to know how she is, and I would say she is doing the best she can now that she is back home. You might remember she was diagnosed with posterior fossa syndrome, also called cerebellar mutism, which means basically her coordination is really off and she is not talking yet. Her eyes are still not tracking together, at least not all of the time, but will slowly return to normal. No one knows why some kids get this, but everyone says she will be talking again, we just don't know when and whether or not it will affect her speech or cognitive abililties. But she has started mouthing words and is starting to look more like the kid you all know or saw in some of those pictures. Her arms are getting to be more controlled and her balance is improving. Most importantly, she is eating really well and is probably gaining back a lot that she lost when we were in the hospital. And today she even picked up a Junie B. Jones and read a few pages. My kid is coming back, slowly but surely. I want her to be able to read--her solace before surgery--during this long convalescence at home so I hope progress on this continues.

Tomorrow we go back to the dreaded radiation oncology clinic at Fitzsimmons for the simulation of her radiology treatments. She will have to lie on a table face down for more than an hour, and be moved and maneuvered and fiddled with so that the technicians can finalize their radiation plan. She already had her radiation masks made, and Bunny had one made too, that she will wear each time to protect the rest of her head when she gets her treatment. Her strength and will power in doing this were something to be proud of. Even though the 7th is her 7th birthday (in 2007, no less) she will begin radiation on that day. We will bring a cake with us to celebrate after she is done, and have no other commitments that day. She will continue radiation five days a week for the next six weeks. Then the week of the 14th we start our weekly visits to the oncology clinic at Children's for chemo and checkups with our nurses and doctor. I'm finding it hard to believe that these places will soon become our haunts, but our doctor said that we will soon get used to this new routine, and this new "normal." I'll be calling friends of friends who we know have gone through this to hear more about how they adjusted. These clinics are warm, friendly places, but the things that go on there are so beyond my understanding that I have a hard time even walking in without shaking.

At least we are back home. After tonight I will have had three whole restful nights in the same bed with my husband and my kids sleeping nearby. When I wake up I don't feel like something is missing, but going to bed and easing into sleep is the hardest.

Love,

Dianna