Eden is doing fine. Sat started with some constipation that grew worse throughout the day despite the meds I could give her. She was in the bathroom every 20 minutes trying with all her might and crying in pain and then finally last night the meds gave her some relief and she felt better.. Unfortunately we have now gone from one extreme to the other and had to cancel on papa Jim to go to the family reunion because it was about an hour drive and at a park where bathrooms are few and far between. So we have sent Riley to represent us... lol (oh what they will think of us by the end of the day) We consider ourselves very lucky that Potty issues are all we have to deal with right now as we read sweet Christi's website and can literally see things getting worse as the words stream across my computer screen. Christi has been pulled from the depths many times over the last 4 years by the amazing Dr. Maris (he is one of the leading most experts in Neuroblastoma and partners with Dr. Mosse, Edens Dr in Philly) but I am fearful that he has no more tricks up his sleeve for christi. Her pain has become so intense that it seems they are upping her meds by the hour now. They are hoping to start Radiation which should give her some relief (we pray) . Below is the latest update which is truly heartbreaking:
Dangerous and life threatening is how Dr. Maris just summed up the new tumor which is growing down out of Christi's skull and is now pushing her brain to the side and causing this horrendous pain. It is quite large. Looking at it myself on the CT, I just couldn't believe how big it is. It's on the top right side of her skull pushing down. There is quite a bit of swelling which is also contributing to this unbelievable pain. I thought I could somehow manage my composure, but it was just too much. I nearly passed out and I had to crouch down in the hallway to try to get the pins and needles feeling, lighteheadedness and nauseous feeling out of my body. I'm still shaking in disbelief. This is heartbreaking.In addition to the calcium and phosporus bolus she is getting she'll also begin on a steroid (decadron) immediately to try to reduce the swelling and pressure in her brain. Since seizures are likely, she'll begin an anti-seizure medicine too. Although perhaps I shouldn't share, Shayne and I took Dr. Maris's recommendation and agreed not to bring her back if it's her time to go Home. We should be meeting with the radiation oncologist shortly and she should be on the table getting her first of (probably) five days of radiation with the goal being pain relief. I ask that you pray for pain relief for Christi, for peace for her soul and for strength for Shayne and I who are not holding up very well at all. Thank you.
As I have said many times we try very hard to live in the day and not dwell on the future as I would then be forced to acknowledge the fact that Chrisi's current situation could also be Edens fate and I could not function if I had to think about that every day. My heart aches for Christi right now for the life she has yet to live and may never have the opportunity to and for her parents who feels as though their insides are being ripped out with a grappling hook. Please pray for Peace and healing for Christi and her family!
To end on a good note.. Eden is going to Kings Island with Uncle Bill and Aunt Pam and Mick tomorrow and I know she will have the best time.. Thanks guys for inviting her! We haven't told her yet as I wanted it to be a surprise and I need to make sure her potty issues are under control before then..
Thanks for checking on our girl...