Happy kidneyversary!

June 7, 2014 -- one year later. pinch me. 

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)

no words

Hearts are full and beating faster than usual. For lack of words, I share these pics + video below. Surgery will begin around 7:30 am tomorrow, June 6.  Please hold these families close to your heart. 

One thing that is clear to me is HOW DEEPLY we are meant to be in community. I first connected with our kidney donor, Mekea, over a random pedicure in the fall of 2012. Two mothers walk in, each with an iced latte in hand, seeking a little bit of solitude. We collided a few other times at the park, pre-school, and at Lifetime Fitness. She is my neighbor, a mother of 3, my friend, the person that gives life to my son again. When we sat down this past Sunday night to discuss the journey ahead, we glanced down at our feet and, of course, we had the exact same shade of polish on.

Jack + Mekea = a perfect match

Mama bears + her babies (minus one cub)

There is a crack in everything, that's how the light gets in. - Leonard Cohen

 “Soy or Skim? “ she asked.  And…  the tears came rolling out.  “I stopped at the coffee shop and couldn’t remember which one you liked, so I bought both.

(Silence. Gulp)

“What…do you have news!?!” she asks.

“No, nothing. Everything is the same. No news. Everyone’s fine. Oh my gosh… I’m fine, really. Oh, wow… um, skim please”.

All it took was one more sweet little gesture and my cup overflowed.  I needed the moment to release some tears and move forward again. It was an opening that I could feel coming but I couldn’t find a convenient place or time. As a mother, a teacher and a wife, I feel I have to be “on” all the time.  Actually, I don’t… but I choose to.  I can’t hit the snooze button, stay in sweats, and pull the sheets over my head for the day.  Well, I could, but I choose not to. While the thought of that sounds so rebellious and delicious, I wouldn’t last more than 10 minutes in bed. I said to Harry last night after returning from dialysis… “I just need one of those days where I don’t have anyone depending on me to realize that I am right where I need and want to be”.

Yesterday was just another Tuesday in dialysis except it was 80 degrees out there and we were IN there.  Jack was relatively content, certainly more than me.  The only difference I could see is that I had an agenda and he didn’t.  I wanted to be running around outside barefoot in shiny new blades of grass and grilling on the back deck with the fam. (Yes, it’s a little too Norman Rockwell… but, I just craved a “normal” night with everyone home).  Instead, I was munching on animal crackers with Jack waiting for some miraculous visit from a doc to say “we found it!”. Surely, the doc had already gone home for the day but I still found myself fantasizing about the possible scene.  To add to my discontentment, Jack arrived in dialysis 2 kilos over goal weight because of excess sodium and fluid intake, which meant we earned an extra day of dialysis this week.  The only obvious choice at this point was for me to soften, drop the expectations, and get with the program. Freedom.

I am constantly invited to give up the notion that my highest, deepest desires lie outside of me, outside of this hospital, outside of this chapter in our lives. I practice being at peace with what is.  Some days… it’s easeful and other days it’s daunting. Yet, this is my work, my dharma, my choice to stay empowered within my experience.  I know that when we do get to the other side of transplant, other challenges will meet us.    It’s not meant in a Debbie Downer kind of way – it’s just life.  The waves will keep coming.  I can only hope to find some stillness in the pulsation and get better at riding the waves.    

For a boy on dialysis, Jack is doing well. However, he has had an acute change in his blood pressure last month, which is disheartening and highly stressful. We have started a new med that is dosed every 8 hours which adds some complexity to the schedule here. The docs are now reconsidering a nephrectomy (kidney removal) at the time of transplant.   In other news, we conquered pneumonia last month and Harry’s 14-day business trip to Europe.  Thank god for the grandmas who came to town and carried us through.  Still bowing down to nana (Harry’s mom) who managed to get Jack to dialysis and back in that nasty April snowstorm.

I do feel like we are getting close on a match.  However, because of privacy issues, the docs will not share ANY information other than “we have some good possibilities”.  Having this tiny sliver of information is SO encouraging for us, but also insanely consuming.  I assume every phone call is THE one. I wake up and say “THIS might just be the day” and it’s not. I see pennies jumping onto my path and think they are signs telling me we are close. I swear I even saw a kidney in the top layer of foam in my latte yesterday on the way to dialysis.  No joke… Jack confirmed my vision.  In the event that the current “good possibilities” do not work out, Jack will be activated on the national kidney registries for a deceased donor as well as the kidney paired exchange program. This will give him national exposure but there are over 90k people on this list also in line for a kidney. If activated on the list, his team at the U of M will continue to process new calls for a living donor as this is THE BEST possible scenario for Jack. 

It feels good to have let down some tears, grieve a bit, and create new space inside myself.  I know in my heart of heart, this is where I am meant to be.  I am honored and grateful to hold Jack’s hand in this journey.

THANK YOU for the continued love bombs on our back porch, the meals, cards, prayers, support on facebook, and contributions to Jack’s kidney fund. 

Thank you to the first graders for keeping Jack’s Saturday morning bright.

Thank you to Jeni Shoemate for watching my daughter every Tues when I go to dialysis.

Thank you to everyone who has called the U of M and considered donation.

Thank you to the two donors who were nearly THE one. You know who you are and you gave us the amazing gift of knowing a match is out there.

Lastly, thank you for the skim latte, the tears that followed, and the expansion of conciousness that I needed to keep moving forward with confidence.

I can only hope to return this love back some day.

With great love,

Al

Hush the Rush

We are approaching the end of month 3 on dialysis. (You would think by now I would have the spelling down... D I A L Y S I S.  Really, try it… not so easy).  I’m in such a hurry all the time these days that every time I type that word, spell check stops me in my tracks. Another divine smack to:  slow down and hush the rush.   

What was initially overwhelming, unfamiliar and destabilizing, feels more comfortable and routine.  I pick up Jack from school at 1:45 on Tuesdays, we stop for a latte and treat at Dunn Bros, and then haul our 3 backpacks filled with gummy bears, animal crackers, games, books, school work, laptop, bills, and just the usual mess of papers on my desk.    

Harry (Dad) has a similar routine on Thursdays but occasionally inserts a conference call into his drive from the school to the hospital and cracks down on homework.  We typically arrive home with glazed eyes and tight hips around 7:30pm and are greeted by a meal that has been prepared by a family friend. Grateful.  

The 20-minute backpack unloading session begins, lunchboxes get emptied, meds get prepped, feeding pump gets loaded, growth hormone injection gets prepped, and search parties ensue for snow gear and library books that have gone MIA.  While backpacks and lunches begin to get re-loaded for the next day, Jack gets wrapped in saran wrap for his shower. Sam and Lucy jockey for their own position in the bathroom. Bedtime negotiations and stalling tactics begin, patience levels get tested, we say prayers, and then lights out. Whew!

The week is such a dance but we have a good rhythm right now. Everyone is healthy and we continue to have a massive stream of support and light shining on our family.  

On Saturdays, the wondrous and brave first-graders are now taking Jack to dialysis. (I know...can you believe that? Sniff Sniff.) Escorted by their parents, these classmates are bringing the fun and and an opportunity for mom and dad to focus on Sam and Lucy.  This has been enormously, fantastically, awesome for all of us.  

No news yet on a kidney.  The office has some interesting possibilities I hear and many people to still consider.  Patience, patience, patience.   THE GOOD NEWS….  it is looking like Jack will NOT need a nephrectomy (kidney removal) prior to transplant!   His doc had prepped us for this possible scenario as he had such an enormous amount of protein dumping in his urine.  If dialysis didn’t shut that protein leak off, there was no way his body would receive the next kidney. This surgery was also very complicated and more difficult than a transplant surgery. Fortunately, dialysis is making big improvements for him in this department and we are hoping to go right to transplant when it is time.

The other update to share is that Jack has started daily growth hormone injections. My little man has not grown a smidge in 18 mos! If you miss a growth spurt, you can't make it up later on. Additionally, kidneys do not like growth hormones so we have not had the opportunity to use these meds until now.  (I suppose the blessing of a kidney that is already unhappy). So, we are seizing this moment to try to help him grow.  It takes 3 - 6 months for these meds to have an effect and they will be discontinued once once he has a new kidney.  If you see my child wearing "floods" (trousers too short), please give him a "high five".  It's about time this boy's outer body catches up to his inner body brightness.

Thank you EVERYONE for making an indelible imprint in our hearts.  While this is challenging time, I welcome the full spectrum of life experience. For me, this is is the point of life... to live fully.   

Love + Gratitude, 

Ali

P.S. - Save the date and stay tuned for more details:  April 13 @  1pm to "Give, Live, Love". This will be a family friendly yoga event hosted by my friends, Nan + Jes, founders of Gorilla Yogis. This will be a donation based yoga class to raise awareness for organ donation and support Jack's journey. Details TBA here.  

LASTLY,  here is a little video that my friends, Mary O'Brien and Kelsey Anderson, created.    It's a glimpse into our world at the hospital.  

https://www.youtube.com/watch?v=lVKVHvQJl84&hd=1

Follow our journey here @  https://www.facebook.com/JackCertainKidney

the waiting place

No news yet on a suitable kidney match for Jack.    

We expect to be hanging out here for at least a few months on dialysis waiting for THAT phone call.  


Words can't quite capture how grateful we are for all the support and continued phone calls to help Jack out. If you or anyone you know would like to find out if you might be a match for Jack, you can call the University of Minnesota Transplant Office @ 612.625.5115; press option #1


Some scenes...   (notice the smiles)

            

Jack and his buddy Levi at dialysis

Jack's new buddy (angel in disguise) Heather

Still smiling after 8 hrs in the hospital this day.

Dialysis starts out this way...

and often ends this way.

The light beaming down on his head here is pretty damn perfect.

We wear these cool masks at the beginning and end of dialysis when his lines are exposed. 

Seriously?! I didn't even pay him to do this picture. 

Team Certain

Please "LIKE" Jack's FB page https://www.facebook.com/JackCertainKidney and become a follower here on this blog by clicking "join this site". You will receive automatic updates when posts are made. If we continue to shine light on Jack's story, my hope is that is that the future is brighter for all those that follow in his footsteps.  

 

Doubt trains faith

I admit…. I lost faith. I have always considered myself to be unshakeable in this virtue.  I have always trusted in the flow of life, the subtle ways that grace reminds me that I am deeply supported no matter how uncertain or difficult life presents itself.

Hearing that Harry could no longer donate (after thinking that was a slam dunk all these years), hearing that we needed to begin dialysis after the docs were diligently trying to avoid this scenario, and watching my son lose ground everyday – I was slowing melting inside. I was filled with doubt. I was now beginning to explore every possible scenario, every dark corner in my mind (including the worst case) and it was exhausting me. 

In effort to get my feet plugged back into the ground, I followed through with my plans to go to Tucson for a yoga workshop between Xmas and NYE.  I have attended this 3-day intensive for many years.  It’s my time to be a student, to get clarity on the year ahead, and to be in really great company. Harry assured me that he would be fine and instilled enough confidence in me to pack my bag.  

By the time I had landed in Tucson, Harry was driving Jack to the ER. I was crushed. Doubt, guilt, sadness consumed me.  I should have stayed home.  After a chest x-ray and a meeting with his doc, Jack and Dad were advised to go back home and get better in preparation for surgery in a few days. Relieved. Somewhat.

By the time I landed on my mat, (day 2 of the workshop) I heard the words “doubt trains faith” fly out of the teachers mouth. I settled. It was one of those subtle smacks of grace where you feel like the teacher (Life) is talking directly to you.

The radical affirmation of my doubt inspired me to step up, be strong again, and come back home with a fresh set of eyes. “Re-entry” is never easy after a yoga retreat.  The real practice is always coming back home. Coming back home to surgery, dialysis, and our new life was wildly intimidating but I felt ready. Scared and anxious, but also ready.

Fast forward three weeks to today, Jan 19….

Jack is back in school, adjusting to his new dialysis routine, and healthier than he has been in months.  Dialysis pulls so much fluid (approx 3lbs!) and waste out of his body that his kidney couldn’t do on it’s own.  He still has waves of discomfort and radical fatigue but this is SO much better than what we were dealing with before dialysis. On his “off” days from dialysis, you can see the fluid return to his body and the fragile place that he lives in.

We do not yet have a match but gain confidence daily that we will find a kidney. Harry was also recently approved to participate in the Paired Exchange program (details on Jack’s FB page) which gives Jack national exposure.  We do not know how the story will unfold yet but, I am enjoying this current chapter that seems a lot less chaotic than the previous one.  There are waves of ‘normalcy’ (outside of 15 hours in the hospital every week) that wouldn’t exist without the enormous tapestry of people supporting us.

There is no way I could possible thank everyone properly for getting us through this first phase but here it goes:

Mom – for taking such good care of us the 8 days that followed surgery. (I will cry if I say anything more here)

Jennfier Manion + Carla Januska – for the creation and continued management of Jack’s FB page. You have answered every inquiry with such love.

Erin + Jeff – (Harry’s bro + wife) our local family who slept in that uncomfortable recliner overnight at the hospital and continue to take our little man to dialysis when they can.

Sarah Cooper & Margie Paller – for the creation of the meal registry. This has been such an enormous help for us. Sweets and other goodies are beginning to stalk me.

Yoga community – for your steady presence, cooking, and love. And to my sub teachers (Andrea & Shannon) who kept us all moving.

Carondelet community – for meals, driving, hugs, prayers, and more hugs. 

Heather Corndorf– your fierce strength and insanely soft heart. Thank you for dedicating a week of classes at the SLP Lifetime Fitness to Jack.

To Brian Ehlers  + the MAC group – – for spreading Jack’s story as if it was your own.

To the other grandparents (Jim, Joe, Jackie, Bob) Aunts & Uncles– I know that you will leap so fast when we tell you we need you. We feel your closeness.

To my OM Collective girls - for your behind the scenes, gentle support.

Jeni Shomeate + fam – for babysitting Lucy every Tues during dialysis and those damn brownies.

Heather (our nanny) – who has spent more time taking care of Harry and I lately than our children 

Amanda and Kellie – (speechless) enough said.

To all my other girls (yes, you) for the steady texts, phone calls, and reminders that you are right by side. I love you more.

And last but not least…. to all of the courageous, brave friends of Jack here and on Facebook who have been touched by his story and were willing to make a phone call to save a life or share his story.   

With a love like this, how could I not have faith.