don’t have the words – there will never be enough words – or the right words. I have gone through periods where I feel absolutely numb, in denial, disbelief, angered, frustrated, or completely disassociated – almost like I’m watching from a 3rd person perspective.
CT results were not good. They were very bad.
The CT results show progression, such progression that treatments will stop, and we are going to focus on keeping Stefanie comfortable. Our arsenal of medical, diet, and health treatments is empty. We’re down to love and faith and that’s something that I want to continue surround Stefanie with.
We’ve had several discussions with various doctors and this morning I spoke with a Social Worker regarding getting Hospice care set up. This afternoon I then spoke to the Hospice organization and they’ll be coming out tomorrow afternoon to conduct an initial interview.
Meanwhile, Stefanie has been defiant – has been more clear and alert lately. Her pain continues to be quite manageable at the moment, while we continue to treat her cyst which still causes discomfort – it is looking better each day.
I know that some word had gotten out, about the CT results, and in an effort to discuss with the children prior to them hearing from another source, we had that difficult conversation earlier this evening (this was an extremely difficult conversation). Ultimately, the conversation went well. We were honest, open, and direct/clear. Each kid had a different way of thinking of it. Acadia mentioned that “Mommy will be like the stingray from Moana – watching over and guiding us.”
Personally, I look for distractions – I’ve always liked a good distraction. I have been trading off with Stef’s parents or sister, as they’ve been able to watch Stef while I take the kids to soccer – games or running Violet’s practices. I do a pretty good job of hiding the conflicts within, and appreciate being able to have a semblance of normalcy.
For fun news – a few weeks ago I had begun coordinating a surprise for Stef and the kids. I really have to tip the hat to Disney with a huge ‘Thanks.’ I had emailed them, inquiring about the potential to get an in-home screening of the new Beauty and the Beast movie. They redirected me within a day, and within another day, to another email. Shortly after that I found myself on the phone with a Director from their corporate studios in Los Angeles.. They overnighted a disc to their DC Government Affairs office, and had a representative bring the disc to our door this past Friday. They stayed through the showing, and left with the disc. It was a nice surprise for all, and a pretty good movie too. 🙂
I must also acknowledge everyone who’s been there – just as a sounding board, a reader, a friend, someone bringing by a meal, stopping by to visit with Stef, taking the kids to a practice, picking them up, whatever it might be.. I can’t thank you enough. Everyone knows I have a difficult time asking for help…
Ultimately, this is the absolute hardest thing I’ve ever encountered, however I am feeling some strength, purpose and resolve for Stef and the kids. Please keep the prayers and positive thoughts for Stef coming.