Scans and Clinic
Yesterday started early for us. We headed to clinic at 8 to get Eden's port accessed and labs drawn and I requested they draw cultures because of the low grade fevers. After that we rushed down to Nuc/med for injection for her Bone scan and then just kinda hung out until time for the scan. She was still feeling kinda cruddy so I was worried they wouldn't want to sedate her and we would have to try and do the scan awake which is very hard on her because she must lay very still for about an hour total. They ended up feeling she sounded well enough for sedation so all was good. I am still having such a hard time with all of this so I hung out in the waiting room and daddy stayed back with her. I do know they did some extra scans on her hips moving them in different positions which terrifies me because Eden has complained a few times of hip pain. We have to go in today for her injection for the MiBG tomorrow and I have decided to run in and back out and try to avoid getting any results from yesterdays scans only because tomorrows MiBG is always the best indicator of what is going on and I need a little more time to prepare myself for whatever is to come.
Eden's counts are still very scary with Platelets at 4 and white count still 1.1 leaving her with an ANC of still around 11 or 12. She did get platelets yesterday as well as another dose of IV antibiotics and she really seems to be feeling better today.
Please keep Eden in your prayers as we wait for results for her scans this week!
I need to tell you of the very courageous thing that Christi's parents are doing. They have decided to allow the Great Dr. Maris to try to get a Cell line from Christi. If he can get the Cell line to grow in the lab it will be used for research. They have only been able to get them to grow 1 in 20 times they try but Christi defied every odd for so many years that it is my hope they will be able to make it work. I am sure it is very hard for them to allow this one last violation on her poor body but i am also sure this was not a hard decision to make. They want to see the monster that took their baby destroyed and they want to help other children like christi fight this horrible disease. Christi will die the way she lived, Never giving up on this fight! Christi will forever be in my heart and i will never forget her sweet smile or her cute songs or funny jokes. She embedded herself into my soul in the short time we spent together and i have cried immeasurable amounts of tears for her parents loss. They believe she is gone but her body is still unwilling to give up.
Please God if it is your will to take her then do so swiftly and let her family start the celebration of her new life in heaven with you.