Pain Continues

At 4 AM I couldn’t sleep any more so I took a quick shower, woke Shayla up and soon we were out of the Ronald House and driving over here to the hospital. I crawled in bed with Christi and dozed off and on until her left leg pain started keeping her awake and causing her to cry out with horrible pain. She continues to amaze many of us as she’s just so sweet and polite. She’s continually saying, “Sorry. I didn’t mean to cry that loud,” “I’m sorry Mom, you know I love you, but I thought you were going to bump my leg or something,” "Dad, there are tims in the past and there will be times ahead when I'll blame you, but I don't really. It's just because I'm uncomfortable." etc. etc. A true sweetheart has graced my life!

Speaking of graces, Mrs. Grant stopped by and brought us dinner today as did Mrs. Kershner!! (So much for my 15 pound weight loss over the past nine weeks!) Those ladies are too thoughtful! Shayla left with Mrs. Kershner and is now spending the night at Shayne’s boss’s brother’s home in New Jersey. (She stayed with them before and was looking forward to leaving the hospital scene. She has been the most remarkable child throughout all of this! My heart is breaking for her. I love her so much and cannot even imagine what she's going through!)

Today I purchased flights to get Shayla back home. (We wanted her to be back in school on Monday, but the Sunday night flights were very expensive.) She thought she was flying by herself-and was perfectly fine with that; however, I told her I would never put her on a plane by herself and that I would be flying home with her early Monday morning, getting some things we need from home (like bills) and then flying back here early Tuesday morning. Then she’ll be back in Grandma Nee Nee’s care. (Denise and Tim Bowerman - thanks for the pic and video of Shayla’s bunny to help her know “Swiffer” is ok! She’s so worried about her bunny. That was so thoughtful! Technology, wow!)

Christi’s blood pressure continues to be high while her heart rate continues to be low. Additionally, today her hgb. was just 8.2 so a blood transfusion will begin at any time now. Most likely that's due to all of the radiation treatments she's endured this week. (Unfortunately, they’ll have to stop her continuous morphine drip – which was upped again today. She’s so “anti IV” that we agreed to stop the pain meds for three + hours during the transfusion so that she wouldn’t have to get the IV in her arm. I wish she had a double port in her chest, but she doesn’t.)

With her left leg continuing to cause her a lot of pain, I was glad radiation took place. Her final session of whole brain radiation was also today. (Monday will be the additional “boost” just to the tumor and that will continue through Wednesday.) With Christi’s amazing little mind, that has been like a huge punch in the stomach with each “treatment”. I’ll never forget the school psychologist trying to communicate to me the unbelievably high IQ Christi has and her telling me, “Never in my 25 years have I ever tested anyone with a higher IQ”. It took having her explain to Shayne that a 161 IQ is four standard deviations above the norm to help him learn how remarkable Christi’s little mind was. It was explained to me that having her IQ would be only one or two people in our entire county's population. Have we already seen loss of cognitive function? It’s hard to say. She’s been saying goofy stuff as she drifts out and in of sleep, which is most likely due to all of the heavy narcotics and other meds she’s on, but every time she said, “I don’t know. I forget,” I get a lump in my throat. I just can’t help but feel like here was an incredibly gifted individual who could possibly find the cure for cancer, but she’s not going to get the chance. What a devil of a disease!

Despite the fact she's in a lot of pain and feeling miserable she still has her wit. Today Shayne started and I finished the 2nd Judy Moody book and I read her a stack of picture books which she enjoyed. It's so sad that our avid reader isn't able to read her books to herself any more.

She had a very funny moment while trying to carefully switch from her stretcher over to the radation table this afternoon. She's in a lot of pain and has to crawl over. It was taking her a great deal of effort and time and she was trying to mask her pain while many adults hovered over her. At one point she just froze......then looked up at everyone and said......What?! That was just my dramatic pause! and gave a sweet little giggle.

This afternoon she drifted in and out of sleep while talking with her good friend, Josh, from back home. Shayne and I were so pleased to hear her say with a pleasant little smile, "I'm just thinking about my Disney cruise." Definitely great memories for all of us!

A quote my Principal uses goes something like this: You'll never stand so tall as when you bend down to help a child. Please accept our thanks to all of you for bending down and helping this child- and as a result our whole family as we try to get through this ordeal one day at a time. She's currently munching on a cookie that was delivered to her with love today. Thank you!