This wasn’t the first time we were
admitted for a biopsy on the new kidney. The first one was October 15th – just
after the kids were settled back in school and things were starting to feel
normal at home again. Labs had been elevated and as promised by Jack’s doctor,
they would act fast with any indication of possible rejection. He was NOT in
rejection (whew!) but days later we learned that he had the BK virus.
The BK virus is a common virus,
70-90% of adults are exposed to. It’s a virus that really doesn’t express
outward symptoms but nephrologists know it is a real threat to kids that are
immuno-compromised and have transplanted kidneys. Simultaneously, nephrologists
don’t yet understand BK well enough yet to deal with it with clarity and
confidence. The BK virus is known to cause scarring on the kidney – which
becomes a chronic form of rejection, something that is irreversible. The treatment for this virus is to
lower the level of immuno-suppressive drugs so that there is just enough immune
system to clear the virus but not too much so that he starts to reject the
kidney. It’s a slippery slope. The BK virus, along with our emotions, has
bounced around like a yo-yo since mid-October. However, the last 3 weeks showed we were making great
progress. The BK virus was at an all time low. The trend was favorable but we also saw an acute change in
Jack’s creatinine level. Hence,
biopsy #2 got scheduled yesterday, Dec 20th.
Today, we learned that Jack is having
some cellular rejection. The shock is wearing off or perhaps just pushed to the
background to deal with at another time. For now, we just rise up, meet the
situation, and normalize it for our family as best as we can. Tonight, we dined
in bed at Amplatz Hospital and watched Polar Express. It was the best snuggle
fest I have had with the kids in awhile. His treatment of IV steroids has begun
(only 30 min/day) for the next several days and then hopefully he can be
discharged or continue with the steroid protocol at home. We caught this
rejection episode fast so we are hopeful that we can reverse it and get on our
merry way. Yes, acute rejection can be stopped. However, it is complicated
because of the BK virus that lurks in the background. If all goes well, he’ll
be home by Xmas Eve.
In other news, the hems on Jack’s
uniform pants are all being let down over holiday break. He has grown
substantially. He is playing
basketball, signed up for ski lessons, rainbow looming, eating ANYTHING he
wants, and scheming a bit to make youtube videos that will show kids how to
take meds. The closets have been
cleansed of medical supplies from his feeding tube and dialysis catheters. The
blood pressure monitor no longer rules the house.
Coincidentally, today is the winter
solstice, the longest night of the year, our darkest day. (Would you even believe me if I told
you the dishwasher broke today and the ipad cracked!?) We are talking a seriously
dark day. No - I am kidding. I’m grateful for my journey so I have
some good, real perspective when those things happen. The truth is, we live in a world of
contrast. Darkness serves as much as light. As I see it, the solstice is the
rumbling of new beginnings, a time to steep in the dark and make our wishes for
the next cycle.
Dream big.
Keep us in your hearts and prayers.
Love,
Ali
Thank you Megan for writing such a
beautiful story in Mpls/St. Paul mag.
Thank you Sarah Hrudka for capturing
the magic in your photography.
Thank you Mekea for giving life to my
son and awakening the hearts of our community. I hope more people follow in
your path.
Polar Express snuggle fest
Jack becoming a Wii master at Amplatz. (open for visitors. pls call me first)
