A WORLD OF CONTRAST

 I was pulling out of the U of M Amplatz Hospital parking garage yesterday when my phone went “ting”. A text arrived from Mekea (Jack’s donor) revealing pictures of the recent article written in Mpls/St Paul mag by her sister, Megan Collins. I could feel my heart accelerate and my vision blur from the tears of joy. It was sweet to revel in such a beautiful story again. And yet, my heart was heavy, as Jack had been admitted early that morning for a biopsy on his new kidney to determine if we were dealing with a rejection episode. Once again, Mekea and I collide in a moment of divine perfection.

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)