Thursday, April 5, 2018

a drop in the ocean



"I am not you. I am something like you. I am nothing but you."
 - Dr. Douglas Brooks


About 6 months after Jacks second kidney transplant, I went on a two-week pilgrimage to southern India with Dr. Douglas Brooks. It was indeed an arduous journey traveling through 20 temples (in 12 days, at all hours of the night), two schools, poverty stricken villages and cities. The How was India?! question was always a hard one to answer. It wasnt necessarily a fun kind of trip (stuffed into 5 yards of a silk sari, safety and bobby pins poking out of me) although it would be a privilege to do it all over again. It was complicated, uncomfortable, demanding and depressing. It was eye opening and heart-warming. It was a world of contrast and paradox - poverty and abundance, chaos and contentment. I could go on.  Douglas best describes the trip as a house of mirrors.  Reflection available in every moment.  While the context was entirely different, the mere two-day pilgrimage we took to Mayo Clinic last week yielded many similar feelings and reflection was no doubt available everywhere.   

Our road trip to Rochester was intended to seek clarity, a second opinion, and a plan for the two tumors in Jack's transplanted kidney. The 2 days at Mayo Clinic were long and daunting but as you walk through you are reminded you are but a small drop in the ocean. The elevator corridor and the valet entrance were bustling with diversity and urgency.  Despite the lack of familiarity, I ran into dear friend who was receiving chemo for breast cancer.  We rarely have time back in the twin cities to connect and yet we lunched together at Mayo- peculiar indeed. We were newbies to Mayo on day one, but by day two we walked through standing up straight with our shoulders back, embracing our reality as it was.

The MRI was the highlight of the trip (for me). I went into the room with Jack and held onto his non slip socks as he was inside the MRI tunnel. I was intentional about gently changing my grip and often to remind him I was close.  He was nervous but playing cool which makes you proud and breaks your heart in the same moment. We were prepped to be in there for 40 minutes. I sat there with nothing to read, no phone, no one to talk to (I know, poor me). I found it entertaining to read every label on the cabinets... "linens", "soiled linens", and so on.  I found every label on the MRI machine to read "Seimens", "danger - don't look at this red laser”, etc.  until finally I had nothing left to do except close my eyes. Calm sank in immediately. I surrendered into the silence beneath the MRI clamor in meditation, in prayer.  I silently asked for courage, hope, guidance and clarity. I asked for health. I repeated mantra. I dug deep for all the tools I have been given. Things seemed to be going well for me... I had a steady stream of grandparents, family friends, students and loved ones - all of whom passed way too soon, that flooded my mind. I thanked and honored them all. I felt assured everything was going to be ok.  Since I had the attention it seemed of many and the powers that be, I extended my lofty request to all my friends and family who struggle with something physically, emotional or mental. (Yes, if you are wondering, you made the list).  Again, the list was long. Too long.  Another reminder of what a drop in the ocean we are. I've always felt the details of Jack's story are unique and yet, not at all.  There is something universal in all of this otherwise I wouldn't share it here in this space.  Different details and different characters are in your story, but surely you can relate in some way. Soon the 40 minutes was up and I felt refreshed and oddly Jack did too. 

We learned a lot at Mayo.  We also affirmed what a great team we have at the U of MN where our care has been for 12+ years. We stand mostly in a similar stance as before. We have 2 cysts, no one likes them, no one will say for certain (no pun intended. at all. not funny. ha.) what they are or are not without more tissue.  

The most likely next step to retrieve more tissue is either another biopsy or possible removal of the cysts (partial nephrectomy).  Mayo would like to remove them. They assure us this is easy and wont compromise his kidney function.  Our team at the U of MN previously felt this was too risky given the lack of reserve in his kidney and would most likely land him back on dialysis in 2018. Hmmpf.

Unfortunately, the last biopsy we had in Dec could only reach one of the cysts - the one that both parties agree looks normal/simple. Conclusions had to be drawn based on the limited tissue at hand that both cysts presumably were the same.  We now know that the bigger concern is on the cyst that they couldnt reach via needle biopsy. (You may recall the great debate about an open vs. needle biopsy). An open biopsy would have been far more invasive and conclusive. Our team opted for the less invasive approach but we were unable to gather all the facts.  The second cyst, which is tucked in near other organs and hard to reach, looks more complex and shows change since the last ultrasound. We all are smart enough to know that first cyst could likely change into something more complex and concerning.

The ball is in our court now. We will reconvene with our team at the U of M Childrens Masonic Hospital next week and decide where to go from here. 

For now, all is well.  Jack feels great. Nothing is urgent. His is healthy within his illness. However, he is without a doubt the elephant in the room. In India, Ganesha, the powerful and wise elephant headed little boy is the first deity that meets you in the threshold of any temple. Ganesa is the lord of beginnings and thresholds. He is known as the remover of obstacles. However, he often puts the obstacles there. As Douglas says "For without the pebble in our shoe, we might not ever act." Ganesha invites you to mark your boundaries, step into your possibilities. He invites you to see more. He invites you to see yourself as him. The elephant is unmistakable, obvious. He wants to make things clear. One of the few treasures I brought home from India was a statue or a murti of Ganesha. 

So, How was Mayo?”… (thank you for asking/reading). The answer is complicated, confusing and yet we feel calm. While the journey we are on is arduous, its an absolute privilege to take Jack through it, and I would do it all again.

When its time for this to again be the focal point of our family, we will let it be.  For now, back to laundry, dishes, homework, chaos, and uncertainty.  Thank you near and wide for your continued support and presence.

Love,
Ali

“You are not a drop in the ocean. You are the entire ocean in a drop.” - Rumi


Southern India, Dec 2014

Ganesha 
Lucy, Sam, Harry, Ali, Jack
Approx 12 hours after Mayo pilgrimage, we boarded a plane to CO for spring break.
Another arduous and humbling journey - this time into the mountains.

 



Sunday, January 14, 2018

pause

A long and necessary pause was had since my last post...

We were all thrust into high gear when Jack's biopsy in late November came to a halt after finding two tumors on his transplanted kidney. Fortunately, Jack's team was relieved and yet baffled to discover that these tumors were not as they suspected, PTLD (post transplant proliferative disorder) which often points towards cancer.  It was advised that we still meet with Oncology and that we would regroup after the holiday giving everyone a chance to pause and consider our options.

Oncology has since suggested two mixed epithelial and stromal tumors, related to cystic nephroma. We understand this scenario to be very obscure, less than 200 reported cases (typically only expressing on an adult kidney in it's 4- 6th decade). Jack is the only patient in the pediatric nephrology group with this condition.  Oncology's solution is to remove the tumors to eliminate the possibility of this becoming cancer. This would be a significant, complicated surgery due to the location of the tumors being near other organs.  The Nephrology team advised against this plan as Jack would presumably land back on dialysis this year as it involves removing too much kidney tissue. Hence, the conundrum and the pause.

We head back to U of M on Jan 23 to repeat MRI and Ultrasound and hopefully work our way towards an answer.  Our hope is that these tumors are not growing.  Really, my hope is that they are shrinking. Is that possible? I don't know... but it seems to me that  a n y t h i n g  is possible. So, I'm throwing that out there into the universe. Keep your thoughts, good vibes and prayers around this possibility.

"How is Jack?" you ask. I always take that question to heart and think to myself... "well, what part of him?"  I think the same thing when someone asks me this question.  Our mind, our heart, our body all send off different signals. The beauty, the peace, the balance is when they all converge. (This is my daily, moment-to-moment project). So, he is amazing, outstanding, a perfectly healthy 12 year old boy who is doing every single thing he wants to do (minus unloading the dishwasher, taking 20 pills a day and + getting blood draws). However, on the inside, his labs are at times unnerving and there are two tumors on his kidney that don't belong.  So, he's great.. but, he's vulnerable as we all are in any given day.  I choose, most days, to set the lab results and tumors aside until there is something actionable I can do.  Fear or love, it's a choice - a daily one.

I choose love.

He would want me to add "Go Vikings!" (whew!)

(and obviously he gets his moves from me. duh)





Tuesday, December 5, 2017

"You will get tired, but not the road..."

Read this part S L O W.... "Problems will from time to time occur; this should not be surprising. When they do you will need to remind yourself you’re in for the long term, plodding forward, moving inexorably ahead. You can lie down in the path and throw a tantrum if you like, but when you are finished you will need to get up and start moving again. As my mentor was fond of saying “If you are walking down the road it is good to remember that the road is not going to get tired. You will get tired, but not the road.” The road is there, has always been there, will always be there. You will have to walk it, slow or fast, now or later. So  p l e a s e   p a c e  yourself, determine how fast you can move in order to sustain that movement for however long you will need to sustain it. "
- Robert Svoboda 

(Maybe read that above all over again)


Smack - right into my being these words arrive at me on day 3 of a yoga intensive in Tucson. These events for me are SO beyond physical - I was sore, but mostly from sitting in good company and conversing about consciousness and "The Work" of being a human. I felt like I had pretty good experience thus far and certainly the last two weeks shed light on every nook and cranny of my mind. These trainings come less often for me these days as the real teachers and teachings stare at me right in the face every day of my life in the form of my family. Yet, to be back in the room at Yoga Oasis and in Tucson were I have spent hours and hours over the last 18 years feels like balm to my heart.  It wasn’t three days of glory and as balmy as a yoga intensive may sound. Any amount of work and any road traveled has bumps, sharp turns, and so on.

Earlier in the week, I had pretty much resolved in my heart that I would need to cancel this trip. We were told with 90% certainty that Jack had PTLD (post transplant lymphproliferative disorder) which  is on the spectrum of lymphoma. We were booked with oncology last Thurs @ 8am to discuss his chemo plan. My flight to Tuscon was at 8:45am for this same day.  I was just getting over my tantrum and beginning to get with the program. Cancer. We are not the first to walk this road. It will be a long road but if anyone gets to hold that boys hand down this road, let it be me.  Let it be us. 


Things were normalizing. A new norm of course. Jack went back to school. Harry and I went back to work with the oncology appointment looming in the morning. To everyone’s surprise, oncology calls and says that preliminary results show this is NOT PTLD. Oncology passed it back to the renal team for more study while we waited for final results over the next few days. Our appointment to discuss a chemo treatment plan that is in just 15 hours has been canceled. Every emotion passed through me and yet part of me went numb.  The road was bright, unclear still, and I was tired.  


Jack came home from school that day and we told him the great news. I began packing for Tucson. I've never packed so light. I had carried so much for two weeks straight, I wanted to be free. (Note to self for future packing endeavors that this worked quite well).  My mom and step-dad jumped into the car with their super hero capes on and a second round of Thanksgiving packed in their bags and took care of my family for a few days while I took a deep dive into my perfectly, imperfect timed yoga intensive.


Dr. Verghese (Jack's kidney doc) called yesterday to check in after final pathology reports confirmed two benign tumors.  We are rescheduled with Oncology for this Thursday to discuss and make a plan to either treat or monitor these tumors. They would remove them but this is not ideal on a transplanted kidney.  My impression is that is the BEST possible outcome and one we did not see coming. 


The road ahead is there, has always been there, and will always be there. I slept 12 hours last night. 


Thank you for your presence and support here. We will share more as we learn but for now I'm going to return to more normal things like dig out our Elf on The Shelf, Ted, and get back to convincing my kids that his magic is real.





[And yes, Ted is wearing a Tito's vodka sweater. This was the only souvenir I landed in Tucson. My consciousness is knocking.... I must get back to work].




Monday, November 27, 2017

Biopsy on Tues

All business here ... 9am needle biopsy Tuesday morning.  Thanks for staying close and for the huge rally of support. 

Love,
Team Certain

 

Tuesday, November 21, 2017

Still I Rise

Yesterday was hard. Our little bubble of "normalcy" popped. I knew it would at some point, it has to.  This is nature -  everything that comes together fall apart. Stability and change are always present.   If you add a tiny grain of sand to another, the sand piles up (each day, a gift) - it eventually reaches a point of criticality but then that pile of sand falls back to the ground. It' been over three years since my last blog post...someone do the math here, but at least 1200 days. If you're just jumping in here, it's been over 4 years since Jack's second kidney transplant.

My mind is crazy busy. I have secrets (everyone thinks we're healthy), I have fear and panic knocking down my door.  I see my husband calm as a cucumber. I look into my sons brave eyes and see his innocence and his strength.  We are at the Masonic Children's Hospital. We are each falling into our familiar roles. While Jack is focused on getting last night's Indiana Hoosiers basketball game on dad's phone, I am trying to check boxes, anything to move us forward to answers. I am doing stupid things- like canceling our ortho appointment for next week and casually letting yoga students that my class will be subbed tonight.  I am snapped right into the moment of what could be our new norm.

Deep breath. I've got this... I remind myself.

Dr. Verghese, Jack's primary kidney doctor, intercepted me yesterday as I was walking into the hospital to help prep him for sedation for a kidney biopsy. No, the kidney biopsy is not a routine thing. Biopsy's are invasive and are only performed when there is a red flag. Labs have been off lately  and we were considering growth hormones which brought us to this moment. Dr. V pulls me into a private room and tells me to sit down.  I am immediately  n o t  i n  m y  b o d y.  I am witnessing someone else's story here...

"The ultrasound that we did in preparation for the biopsy revealed a mass. We were not expecting this at all. We need to aggressively rule out cancer.  It could be anything. It could be fatty tissue, it could have been there from the beginning and we missed it, it could be benign, it could be malignant. The only way to know is to biopsy. There is minimal blood flow in the mass which is in his favor. The patchy shape of the mass is not typical and therefore in his favor. But, he does have Epstein Bar Virus, which is a marker for cancer with transplant kids".  I remember hearing about the elusive EBV virus during his first transplant 10 years ago. I put that little secret in a box waaaay back in my head.

Oncology arrives shortly later. This is not happening. Oncology is here?  She is lovely and I want to not like her because I need to put my anger somewhere. But she comforts me in an odd way and even makes me laugh as she sees my hands typing in "Post Transplant Lymphoproliferative Disorder" (PTLD) into the Google machine as I attempt to maintain eye contact.  "Be careful which websites you go down, Mom."

MRI follows at 4:00. The MRI confirms another mass. This is real and I'm slowing sinking in and letting the food show up at the door, trying to remember the password to this blog, and keep it cool for Jack.

Dr V. greets us and tells us that she thinks this is PTLD and the only way to confirm is via biopsy.  She wants to know with absolute certainty what we are dealing with. She wants to do an open biopsy versus the "simple" needle in the abdomen, stick a band-aid on the wound option. The transplant surgeon does not not want to do an open biopsy for obvious reason and reasons I probably can't handle knowing at this point. So while she, our transplant surgeon, and oncology debate this overnight we go home. I make soup -- because what else do you do when soup has already been delivered?? I let myself bury my emotion in this pot of soup and listen to Sam and Lucy (Jack's sibs) carry on like any other day.

Now, we wait for the call to see who wins the biopsy plan debate. Jack goes to school,  Harry and I go back to work.  This biopsy will most likely happen this week but of course it's complicated because of the holiday. She wants it as soon as possible - she would do it today if there was room in the operating room and agreement amongst the team.  She tells me an angel brought Jack her for this ultrasound.  Part of me thinks "duh" and part of me thinks "bleepity bleep bleep bleep".  Doubt trains faith, according to my previous blog post, Jan 2013.

I don't carry secrets well so hence this post. I need to keep it real and clear this out.  I also need to keep this out of my yoga studio as much as possible because you show up for you, not for me.  Most importantly, I also need to protect my children and keep it "normal" for Jack, Sam (yes, Jack has a twin bro), and Lucy as long as I can.  So please help us with that. And if you run into Harry, I'm sure he will tell you Jack is just fine. He exudes more confidence than maybe necessary around Jack's health. I am grateful for that.

Please keep us in your thoughts, prayers, sun salutations - however it is you "connect".

Not sure if this is an approved website from Oncology, but this is a decent link at first glass that explains PTLD which we suspect we are dealing with:  https://www.kidney.org/atoz/content/post-transplant-lymphoproliferative-disorder-ptld

Unedited, raw, slightly over caffeinated, phone ringer on high, waiting for Dr V. to call, full of fear and  hope, stabilizing and changing. Still I rise.

Love,
Ali




Wednesday, June 25, 2014

Happy kidneyversary!

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




Saturday, December 21, 2013

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)