February 1, 2007
We called in reinforcements to help with sponge bathing (Sadie was barely leaving her bed by now) and round-the-clock medication: three mornings and three nights a week.
An anniversary of sorts
February 6, 2007
Sadie made it a year past her first MRI. Bittersweet news, given her rapidly declining state.
February 11, 2007
This was the last day Sadie would leave her bed. She had become increasingly dizzy and weak. She all but stopped eating and drinking. Her vomiting increased; we raised her dexamethasone to 12 mg (from 9).
Sadie developed a wet, raspy voice; strings of mucus hung between her mouth and toothbrush. She hurt everywhere, but nowhere she could point to. We started giving her acetaminophen by suppository to ease her achiness; she could no longer swallow the large pills.
February 17, 2007
Sadie’s agitation increased almost daily. In an attempt to improve her quality of life and possibly buy her some more time, we increased her dexamethasone to 18 mg. It didn’t help.
We started Sadie on fentanyl patches (morphine) for pain and oxazepam, a shorter-acting, milder cousin of diazepam (Valium), to help her sleep.
February 19, 2007
The oxazepam and fentanyl helped only briefly; we had to make a middle-of-the-night pharmacy run to pick up oxycodone (for pain) and temazepam (stronger than oxazepam). Sadie was restless and uncomfortable pretty much all the time, despite our best efforts to drug her sufficiently.
For the first time in five months, she turned away the volunteer who came to play games with her twice a week. She just wanted to sleep.
Though we didn’t realize the end was so close, Sadie had entered her last thirty-six hours.
From the diary
Sadie threw up at 3:30 AM, just three and a half hours after her last Zofran-dexa dose. Sigh. Dinner’s spaghetti, half digested, came back up. It’s pretty disheartening to see her finally getting some food in only to watch it be ejected hours later.
She’s having nonspecific pain, where she doesn’t feel good but can’t point to what hurts. Surprisingly, she isn’t having headaches; it’s the rest of her body that seems to ache. She winces when we move her to change her clothes or help her get comfortable.
My teenage daughter is now on drugs, with my blessing, that I’ve only heard about on episodes of Law & Order. Life is very strange.