Torture

I thought things started off well this morning with Christi actually being awake and able to watch Arthur DVD’s for 2 ½ straight hours. She even ate a few bites of cereal. With a continuous drip of Morphine (which was again increased today) her “only” complaint of pain was her right leg, but it was bad.

All too soon she started telling us she was seeing double. After many doc inspections a CT of her head was ordered so they could make certain she wasn’t bleeding. A platelet transfusion was also ordered “just in case”. (Hours later we learned that the tumor is about the same as it was 48 hours ago, but it looks like the swelling is a bit decreased.) That is most likely due to the steroid which Dr. Maris wondered if we’d noted her change of personality yet. “It’s hard to say,” is all we could come up with. (She’s been in so much pain, who wouldn’t be grumpy?)

From the CT of her head early this afternoon, we went directly with a doctor and a nurse through the complicated underground (cold) hallway system traveling with a very uncomfortable Christi in a wheelchair, along with her IV pole, all pushed by daddy. That’s where the real torture would soon begin.

All day and all night she’s continued to rate her right leg pain as a “20” on her 1-10 scale with all other areas being a “0”. (Now some of you wise folks may note that it’s her LEFT leg which has been the source of pain and it is the LEFT leg in which she had tattooing done and radiation simulation set up for. Go figure.) Every little jostle caused her excruciating pain breaking my heart and making me sob myself.

To get her leg ready for tomorrow’s radiation, they did the simulation and had to make a cast of her leg. It was so hot and she had to let the mold set up around her leg for 30 minutes. “Mom, this is 13X hotter than when Buttercup is on my legs,” she cried. (Buttercup loves to rest on her legs.)

And for more torture…..

Like the whole brain radiation, where they strap her on a hard skinny board lifted 4 feet in the air, and tape her head down wasn’t enough, today she had to be fitted for the “boost” which will be given to her tumor next week. I know other parents warned me about “the mask” but until Shayne told me what had happened and until I saw it with my own eyes I never would have believed that had been done to my Christi. (I took a very antsy Shayla for an exploration walk around the Hospital at the University of Pennsylvania – HUP) Shayne sent me in as soon as a parent could go in. Not only is the hard mask tight on her face, leaving indentation marks, but then after she’s in place they bolt it to the hard table she’s on so she cannot possibly move. Horrific. Then they informed us that the machine broke and she’d have to do it again. Saying a bad word out loud, I rushed over to her and could only wrap my arms around her strapped down on that table and put my face beside hers, our tears mixing together running down our cheeks. I’ve never felt so helpless.

Next it was to another room for the actual brain radiation of today. She was so scared and asked that I not leave her. Because I'm not allowed to stay in the room during the radiation treatment I watched her on the monitor and sang to her through an intercom to try to calm and sooth her.

Torture. It’s the word which keeps coming to mind. Why are we permitting this t happen to her? Should we just wave the white flag now? On Monday it will be four straight years of this fight. Is that enough? I just keep reflecting upon Dr. Maris’s response when we told him days ago that he needs to tell us when to head home and that we will. We don’t need to try to treat for our sake; we need to do what’s best for Christi. Dr. Maris has continued to reassure us that he’s “cautiously optimistic” that the radiation will give her pain relief and more time. Shayne has asked days, weeks, months and Dr. Maris said he cannot answer that. Each day she continues to take countless meds and chemos as well. Dr. Shayne is doing a fabulous job organizing and administering all of her medications.

So even though the pain is now in her right leg, Dr. Maris said that once you start chasing the pain this is actually pretty common. Regardless, he said we’ll stick with the plan for tomorrow and radiate her left leg and not her right. Hmmmmmmm…….