Thank you, dear friends, for your beautiful prayers and encouragement during recent weeks and, really, all summer long. We have gone through a "valley of the shadow" kind of stretch and it has really helped to experience so much love.
I apologize for not posting in a while. We've been overwhelmed with antibiotics and appointments, getting Jill therapy, making new rhythms as a family, dealing with logistics, riding the emotional roller coaster and getting ready for the inevitable end to summer. That included moving our oldest daughter, Emily, to UC Berkeley for her freshman year. I dropped her off a week ago to start her molecular cell biology degree. She already loves living in the Bay area and the cool, crazy and challenging environment of Cal.
Jill is finally done with her eight weeks of antibiotics. Talk about a massive relief. She had a PICC line in her arm, which is like a semi-permanent intravenous tube for medication. Administering these drugs took seven to eight hours a day, beginning at 6 am and going to about midnight most nights. That all ended recently and we are so happy to be done. I can’t begin to describe how much work and effort it has been; a real-life “horror coaster,” as my friend Margaret calls it. Caring for Jill has been a team effort, including my kids, Emily, Annika and Zack; my mom, Marilyn; and LaDonna, Aimee, Cora, Darcie, Karen, Bev, David and Mauri, Tracy, Lili and Eddie, Shannon, Leslie, Peter, Michael, Larry and Krista, Lisa and many others. The whole team at Barna. (Thank you!)
Jill is definitely doing better on most counts, physically. She seems stable and her energy seems to be returning, bit by bit.
Despite progress, it is still unclear if the infection is completely gone. Her recent lumbar puncture (spinal tap) results may be showing signs of infection . . . or they may just be signs of residual inflammation. Jill will need another spinal tap in the next week to see if her numbers get any better. If they don’t improve, the possible outcomes could include more antibiotics (ugh!) and possibly another surgery (quadruple ugh!!!).
If her numbers do improve, however, Jill is all set to start chemo and radiation sometime in the next month. But the next stage of treatment can't begin until the docs are confident the infection is gone. Because chemo suppresses immunity, lingering infections can become even more dangerous during chemo. I know it sounds paradoxical, but please pray she can start the chemo / radiation soon! That’s the best possible next step for us!
Cognitively, Jill is still disoriented . . . a lot. She loses track of key details like time of day, whether she has eaten and what’s happening around her. Here are a few snapshots of what this looks like:
- When we were doing the antibiotic infusions, we had to keep pretty constant watch on her because she would often try to pull out her PICC line (something she did on multiple occasions). At the cancer center yesterday, she had to be carefully attended to so that she didn’t get lost in the hallways.
- Almost every day she asks if we are going to Berkeley (she wasn’t able to make the trip up with us to drop off Emily, unfortunately). My wanderlust wife is always ready to pack her bags and “go somewhere.”
- She frequently asks about family members as though they were “just” with us, even though we may not have seen them in weeks or months. For a time, she asked about our deceased dog, Lucy, who died last summer. That really rattled the kids, who grieved deeply for that canine.
- Jill is not allowed to drive, although she offers to do so—a suggestion quickly met with strong protestations from the rest of us that she’s not, under any circumstance, allowed to operate a vehicle.
- She’s not yet reliable to keep track of household needs, like shopping lists or financial transactions. So I am filling in on these duties—learning, for example, that Costco on a Sunday afternoon is a bad, bad idea.
Candidly, Jill’s current state is somewhat dementia-like, but the doctors continue to believe she can and will make a good recovery. It’s not a degenerative condition; her brain is re-generating and building itself back. Still, our medical advisors believe it may take from 12 to 18 months for that recovery to take place.
So that’s a tiny window into things right now. I’ve really wrestled with what to share here on the blog, because I don’t want Jill (or my kids) to ever feel that her condition or our lives are overly scrutinized. But I think this small glimpse into the zany adventures of the Kinnaman family can help you know how to pray and to walk alongside us.
By the way, some friends who are close to our journey have seen all that’s involved. They have helped us begin to acknowledge that we are going to need all sorts of help for many weeks and months to come. These friends started a fundraising campaign and you can help, if you’d like, here: www.youcaring.com/careforJill.
Through it all, Jill is simply amazing. She never complains. She’s always in good spirits and kind. She makes lots of jokes. She blesses us. One of the most powerful things I have experienced this summer was Jill’s prayer for Emily the night before she left for college. It was cogent and sweet and powerful—a mother’s prayer for her daughter to be kept from the work of the Evil One and to thrive in her friendships, her studies, her calling and her faith in Jesus. We were all in awe and in tears that night.
With love and thanks for the prayers,