Still With Us

Baby Christi, Fall 1997

When her breathing slowed last night, we didn’t think she’d make it through the night - but she’s still here sleeping beside me as I type this update! Shayne spent a lot of the night on his knees beside her bed crying his eyes out. We watch each rise and fall of her chest and wondered if that breath will be her last, anxiously awaiting her chest to go up again. I again slept in Christi’s bed (have only been crawling out to use the bathroom and then to hop right back in) trying my best not to bump her and trying my best to actually get in some sleep. Again, I wasn’t so successful. Last night Shayne packed up much of this hospital room, where we’ve spent the past 12 days and I made ink prints of her thumb with hopes that Jeffrey’s Jewelry will be able to make her thumbprint into a necklace for me. About 10 PM we heard, “Bathroom!” so we quickly got her to the little make-shift potty beside her bed. While sitting there Shayne asked, “Can daddy have a hug?” You can see the answer. This amazing little pioneer is still so tender, gentle and loving. One of her many nurses said last night, “I’ve never seen a more polite child. She keeps saying sorry.”

About a week ago during one of our “serious talks” with Dr. Maris out in the hallway, Shayne asked him how successful he is in getting new cell lines to grow and would he like to try to create a cell line from Christi. Dr. Maris looked down and paused for the longest time. Finally he answered, “I can’t believe you just asked me that. No parent has ever asked me that. You have just been dealt the lowest blow a parent could ever be hit with and you want to try to help science.” It just seemed natural to us that if Christi died here, Dr. Maris should be able to autopsy her to hopefully get her particular tumor cell line to grow and to try to figure out how to kill this damn beast since all efforts have been unsuccessful thus far. Dr. Maris said that he’s only successful in establishing a cell line 1/20 of the time, but he would be honored to try and since he said he failed Christi in curing her he’d like to work with her particular tumor cells to see what could possibly be done to kill them and help other children. Last night we asked him how long he could wait before he’d need to do his work and responded, “a couple of hours.”

Most of our bags are all packed up and are sitting by the door as we know we’ll soon say goodbye to Christi’s lifeless body, carry them down to the van in the parking garage and begin our ten hour drive home, alone. It’s going to be hard, but we know we’ve got a grand Celebration of Life to take part in. Yesterday I: selected her coffin, was happy to learn that horses had been found which can pull the horse drawn carriage in which her coffin will slide, prayed many times to my father to be waiting at Heaven’s gates to give her a horsy ride and to let his body buried back at the cemetery know it was soon to have company. Additionally, I ordered a stunning boutique / pageant style white gown trimmed in pink which was shipped from California yesterday. Won’t Christi make a grand entrance as she returns to God’s kingdom?! I’m trying to be brave and strong, yet I’m really crumbling and absolutely devastated by our loss and cannot even fathom how we will go on with out this most amazing princess who so lovingly graced our lives the past nine years.