Monday, June 23, 2014

Where We Stand

I realized today that I haven't really posted anything since late March. That was a rough month for us with all of Brooklyn's hospital stays, but you should be happy to know that she has maintained a relatively healthy status since then. Her oncologist speculates that every ALL patient will have one series of inpatient stays during his or her treatment. With any hope, that was ours.

Recently people have been inquiring about Brooklyn's current health status and so I thought I'd save everyone the trouble and write an update.

Brooklyn is plugging along in treatment. She takes daily oral chemo plus a high dose of oral chemo every Friday. Once every month we get her blood counts drawn and then every three months we go into clinic for intravenous chemo and intrathecal chemo followed by a week of steroids. It sounds hard but it's child's play compared to our first six months of treatment. At this point her catalogue of shitty cancer killing drugs is so extensive that the chemo they give her now carries very few side effects.

The steroids, however, remain her best friend and greatest enemy. Thankfully she takes them for a short enough time to only catch a glimpse of the old raging sociopath we came to know so well back in the beginning. She quickly returns to our sweet whimsical child once her final dose is completed.

We have almost exactly one year left in treatment. Back in the beginning of all of this, I felt like it would be an eternity before we saw the light at the end of the tunnel, but here we are, one year away.

 I see a change in the Brooklyn I knew then and the Brooklyn I know now. The day we landed at Children's Hospital she wouldn't even step on the scale without screaming her head off. She was frightened of her own shadow. Anything that she didn't know or understand was met with untrusting fear and the hospital was completely unchartered territory. Now, she is brave and tougher than nails. She will tell you just as much if you attempt to insinuate otherwise. I've often thought that the crappy circumstantial events that sometimes take place in a person's childhood can have the great ability to change them for the better. I believe, in Brooklyn's case at least, that this has been such an event.

For her dad and I, I'm not sure that so much is true. We now carry a hyperawareness for our children's well-being that was not there before. The unimaginable happened, our delusions were crushed. Now, I suppose, we feel that anything is possible. In five years our journey will end and Brooklyn will be deemed cured, but I don't know that we will ever be the same.



4 comments:

  1. Thanks for the update! Big hugs to you and her. What you said about her transformation was beautiful. Thanks for sharing your story.

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  2. So much love to you and your family, Sandy.

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  3. I So wish you all the luck, prayers, good wishes and any other juju I can think up. She and your whole family are amazing! I can't begin to imagine the courage this must take.. Sorry we didn't see each other while you were here!
    Next Time

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