Whenever we are at the hospital, it feels like we are in a time warp.....I cannot believe it is only Thursday....considering everything that has happened since Sunday.
Yes...we are still here at DHMC. We will probably be here through the weekend into next week. I don't know where to begin or end...so please excuse my ramblings. Since Sunday, Morgan seemed to be getting a bit better. Less pain, more mobility etc. This morning, she was up at 2 AM (yes, AM) talking and wandering with the nurses, doing nails, eating pizza etc. She finally got back to bed around 6 am. I thought we were on the mend - only for her to crash and burn as the day progressed.
They did a bone scan yesterday and it confirmed some of my worst fears. The neuroblastoma has grown and invaded many parts of her tiny body. As you knew..the tail bone was being radiated, we have 4 more treatments to go. Today, they did a "one time" high dose radiation treatment to the top of both of her arms. She will also be getting radiation to her eye orbits and nasal bones (this will happen over many days). She'll start another chemo regimen tomorrow night.....getting Cisplatin 1x/week. Outpatient, every week. This should keep things at bay without crashing her blood counts.
So, needless to say, it is becoming increasing difficult to figure out what the next day will bring. The cosmos seem to be guiding and carrying us right now. Many folks have offered to help...but I honestly and truly do not know what to say but thank you for the offers. I am going from one event to another without much thought in between.
Thanks for the visits. Some how, some way, they have been wonderfully spaced and not overwhelming. While I was wicked nervous about going into the bone scan with Morgan (without family or friends), Jill called that morning and was able to go with us for the scan. Thanks so much Jill - you were truly a God Send!!!
I see the workings of God and the cosmos constantly....so I HAVE TO BELIEVE that everything will be OK....not the way I want it to turn out....but, somehow, we are being guided and will be held throughout this ordeal.
Thanks for your prayers everyone...that is what we truly need.