Rally the War Cry

Meaghan came home from the hospital yesterday. The very abbreviated version of what her new complication is: her stomach doesn't empty and she has bad reflux. This is like a torturous, never ending game of Clue. The problem is all the characters are conspiring together. Posteria Fossa Syndrome - check. Radiation - check. Chemotherapy - check. Assorted Pharmaceuticals - check.

Together with her team of doctors, nutritionist, pharmacist and dietician we adjusted some of her meds, added some new meds and administered a lower volume dose of chemotherapy. Some of these news drugs will cause more diarrhea, but will hopefully restore stomach motility. If the new meds work then Meaghan can avoid having her G-Tube pushed down into the top portion of her small intestine. (By moving the feed tube, we bypass the stomach and administer nutrition directly into the intestine thereby increasing rate of absorption and avoiding vomiting.) We are following up with her pediatric GI doc in two weeks to make that determination.

This was a particularly taxing and scary week. Meaghan was not well at all. She's lost a bit more weight, when there wasn't any to spare. She was very dehydrated. Slept all the time. If these decisions to change aspects of Meg's care sound as though they came easily, they most certainly did not. Ed and I had a conference with her oncologist - a long one. We cleared the air, set the tone for future communication and reestablished rapport. Not an easy feat. I am a watch dog of a mother; a control freak bar none. I am keenly tuned in to Meg's health. The oncologist expects a level of trust that I'm simply not willing to give - yet. Until the bitter end, I will second guess every decision we make. If I struggle trusting my own decisions, I'm sure as hell not going to trust anyone else's. We compromised. I will relax, if he in turn will respect that I will not accept out-of-pocket his decisions. He must explain himself fully and to my satisfaction. I get that I'm a fast learner and relatively intelligent. Yet despite my newly acquired medical lexicon, I am not a doctor.

I am a terrified mother.

I am a terrified mother committed to balancing my daughter's quality of life with her morbidity.

Yes, I've gone there. The more fearful the decisions or situations, the more committed I am to facing them squarely. The entire Pediatric Floor is aware of this. All our family and friends need to know and trust that we are asking an endless number of questions. Meaghan's situation doesn't allow for a simple fix. To borrow two phrases I hate: she is too multi-factoral and poly-pharmaceutical to treat in black and white. At this stage of the game, to question us is to culture doubt and fear when it already clouds our lives. Everyone so loves Meaghan and is invested in her recovery, but no one more than her Mom and Dad.

We desperately need continued support from our friends and family, however. We need unceasing prayer and patience. We need unwavering support as we face unthinkable scenarios and decisions. In light of this last week's events, I have a very specific request.

I need to rally a war cry. Whether you know Meaghan personally or through her blog, I am asking everyone out there to post what song comes to mind when you think of Meg and her daily heroism. Please indicate the song title and artist. My goal is to make a CD for Meg to share with her all the support and love she is receiving from her extended family.

Please say an extra prayer for all parents of children with cancer. We are foot soldiers together.