This is an update that I have been reluctant to write up and send as it contains difficult information and I wanted to give Bobbie an opportunity to inform as many as she could in person ahead of it.
Since the previous update, a few things have occurred including two hospital stays:
- The first stay was a 2 day stay (July 9-10) resulting from a fall in the shower when a faulty hospital chair collapsed underneath her. It resulted in an abscess that became infected and required a minor surgery but has caused her significant discomfort due to its location. She also required a 2 pint blood transfusion for anemia, though doubtful this was related to the fall.
- Following that stay, we enjoyed our first true family vacation since Killian was born to the Great Wolf Lodge in Williamsburg. Though Bobbie couldn't swim and spent the entirety of the trip in a wheelchair, she seems to have enjoyed the trip and Killian certainly had a great time. Killian having a great time lets both Bobbie and I both enjoy ourselves.
- On the first night home from the Great Wolf Lodge, Bobbie had her first seizure since the cancer reached her brain. This landed her in the hospital for a 5 day stay while they analyzed and adjusted her daily medical cocktail and monitored her status. Her daily medical diet now consists of:
- Dilantin 500mg - seizure preventative
- Glucophage 500mg - blood sugar control
- NvoLIN N 12 units - insulin
- HumuLIN R - sliding scale insulin
- Decadron 16mg - steroids
- Zoloft 100mg
- Potassium supplement
- Ambien 10mg - sleep aid
- That's 16 pill per day and 1 to 3 shots per day, not including any pain reliever such as Ibuprofen, Acetaminophen or Oxycodone as needed.
- While at the hospital following her seizure, they performed an MRI and determined that the Temodar treatment was not working in that there has been no significant tumor shrinkage. As a result, her doctor decided to discontinue the Temodar treatment.
So, where does that leave us? Well, it leaves us in an unpleasant place. It leaves us in a situation where Bobbie is under no active treatment for her cancer. It leaves us in a situation where the doctors tell us that the steroids are basically keeping Bobbie alive and that there is a limited duration for which they will continue to work. Her medical oncologist estimates that the remaining duration for steroid effectiveness is in the 6 to 10 week range and that assessment was made about 1 1/2 weeks ago. Of course, it is just an estimate on the doctor's part, but that doesn't make it any less difficult to try and absorb or process.
Since that hospital visit, she has been having spiking pain in her knees, shortness of breath, sleep apnea, ongoing fatigue and has started running a fever of 101-102 intermittently over the past couple of days. She is now under hospice care and we have a hospital bed in the house for her comfort. The hospice nurses are speculating that the fever is what they're calling a "tumor fever", meaning that it is not related to viral or bacterial infection, but a defensive reaction of the body to the changing tumors. Speaking of the hospice nurses, she is under the care of Heartland Hospice Care and they have been wonderful. She has met with nurses, a grief counselor, a social worker, a spiritualist and a case worker. I have met most of them and spent some time with the grief counselor as well.
I apologize to those of you for which this is a significant chunk of news, but needless to say my world has been a challenging place over the past several weeks. I also hope it doesn't come across as overly negative, but it's hard to put much of a positive spin on such news. There is no way to know how much time we have left in any definitive form, but I'm hoping that it is, in the very least, relevant to the best case estimate by her medical oncologist, placing us in the 3 to 4 month range.
We plan to tell Killian this weekend in whatever fashion seems appropriate to us. The grief counselor and/or one of her nurses will come and see him sometime next week after he has a few days to ask mommy and daddy about the situation. They told us to basically be honest with him with whatever questions he asks.
Bobbie asks that you send her an email (bmcrae@nc.rr.com) or leave her a voicemail if you wish to contact her and she will call people back as she feels well enough to do so.
Again, I apologize if this message seems disjointed or lacking the structure of my previous communications and hope that it finds you all well and with healthy families of your own. I will endeavour to send out updates more frequently as opportunity and situations allow.
