BMT Day +4: The Labyrinth

Living in a hospital feels like a constant walk through a labyrinth. There’s a path. It’s defined for you. There are twists and turns, but it’s destined towards something. You can’t always see it. In order to move through the journey, you need to take one brick at a time.

I’m probably not the only one who feels that way since when the NC Cancer Hospital (connected to NC Children’s Hospital) was built in recent years, a labyrinth was placed outside on the ground level. Zach and I have walked the labyrinth, or “sacred path,” probably 5 or 6 times throughout all the times that Luka has been in the hospital, even with our sleeping lion once when he wasn’t on restrictions. As Maia has grown up going to the hospital to visit, she’s in the past few months gotten mature enough to follow the path.

The labyrinth instructions say that how you feel when you walk through is indicative of where you are with whatever you are working through, like a form of meditation. It’s seen that how you walk through the path of a labyrinth is symbolic of the journey to your inner self. Naturally, Maia walks the path as the leader, with a smile on her face, exuding enthusiasm and encouragement. She takes the task seriously and focuses on following the path closely. She says quick witted observations out loud in her extroverted way. Once she hits the home stretch, she runs with full force to the center and jumps up and down with joy. Maia’s sacred path to her inner self could not be more accurate. All that was after she walked into the clear door in our hospital room resulting in a slightly cut big lip and some quick ice pack making by our beloved Dr. Philip and a very helpful nurse. It was one of those days.

Zach is focused and quiet. He makes a quick witted joke and flashes a smile with his eyes. He’s steady, calm, and confident. He let’s us go first. He’s a soul man, that’s for sure.

For me, this was the first time that I walked this path as we are here during Luka’s bone marrow transplant. Every other time that I walked the labyrinth, I really was working through how I felt about moving towards the transplant. In the past, I’d always finish the labyrinth feeling relief and resolve that it will be when it will be. Now, being on the other side of transplant is an incredibly open-ended feeling since so much in undefined. You’re waiting for new cells. You’re waiting to see if the cells take over. You’re waiting for reactions. You’re still on restrictions. You’re waiting to see if you get discharged. You’re waiting to see if you have to be re-admitted. You’re waiting, and not for a specific “Day 0.” Today, I can honesty say that when I walked the labyrinth, I had no thoughts other than a slight smile on my face (contrary to the rest of the day). I must have meditated without trying to, and perhaps meditating away from all the noise of the hospital. But, after the labyrinth, there was that sinking feeling of, “Ok, now we have go back to the room.” Maybe in a way, walking the labyrinth was a reminder that my inner self is doing OK, but my hospital self needs help.

Luka may feel that way, too. After a rough night filled with labs draws, more lab draws, vitals, pre-meds, a blood transfusion, and many more vitals — Luka remains ROARING quite a bit and we’re all pretty tired. It was one of those days for him as well, and after a already tiring week. He’s also having some blood pressure issues that keep resulting in more and more medication and now possible fluid retention. It’s all somewhat expected given everything, but there were some hospital administration aspects that could have been adjusted to help kiddos get the rest they need in treatment. Thankfully, we had some helpful people listen (Dr. Philip, a social worker, and a helpful nurse) and make adjustments so the kids on our floor don’t have to have midnight labs or transfusions in the middle of the night. It wasn’t the first time I pointed out that hospital efficiency seems more important than sick children getting sleep, but it seems to have resonated with the right people today.

I guess that’s a small victory in walking the sacred path of living in the labyrinth of the hospital, and how small changes can hopefully go a long way. Hopefully, Luka (and mom) gets much needed rest tonight and tomorrow is a better day.

BMT Day +1: Gravity Always Wins

Many of you know how deeply Zach and I are fans of Radiohead. There are so many memories that there is not enough room for me to include them all here. Some quick flashbacks are sitting in that ’85 red Honda Prelude and listening to the entire OK Computer album in silence outside of Sean’s house. Another is enduring the 100+ degree heat in downtown Chicago the day that Zach and Josh moved as we were serenaded by Thom Yorke and company to True Love Waits. One of my favorite songs is Fake Plastic Trees and the lyric about how gravity always wins. It’s seriously in my head a lot. Today, gravity did win in the most beautiful and simple way possible.

Two years ago, if you had asked me what a bone marrow transplant was, I probably would have said something along the lines of — maybe it’s when someone else’s bone marrow is injected into another person’s bone? There’s a cute kid’s video about the subject and a girl re-tells how she thought a bone marrow transplant was when you get all new bones.

So, ladies and gentleman — here’s the secret: the actual bone marrow transplant is a multi-hour gravity drip from an IV pole through a central line catheter which is administered by nurses. It’s old school. It’s simple. There is a fairly small bag with 2 ounces of what looks like blood, but it isn’t just that. In that bag are very delicate donor stem cells of the exact same HLA tissue type. So delicate that it can’t go through a pump. Since Luka and his donor are different blood types, the lab took the red blood cells out. Just like that.

Luka did amazingly during his “Re-Birth.” And interestingly enough, it did in some ways remind me of the labor and delivery process. Right before it started, he was in his crib and waking up to all that was going on as the nurses got things set up. He held my finger tightly just as he did when he was first born. He slept through most of it on me, and would look up periodically like a regal lion examining his jungle. Then, he would rest his head back on me in satisfaction. He was serene and clairvoyant. It’s as if he waited his entire life for this, and now we are moving into the positive.

Three nurses, Whitney, Molly, and Kaitlin, checked, doubled checked, and triple checked everything. They were meticulous. After pre-meds and baseline vitals, the “product” (or stem cells that just looked like a bag of blood) was hung at the top of the IV pole, connected to Luka’s red lumen of his double central line, and the drip drop began thanks to gravity. And we sat. For hours. Since the rate of drip matters, the nurses constantly counted and re-counted every 15 seconds to make sure there were 2 drips. Sometimes there were 4 drips. Sometimes 2 drips. Sometimes no drips. We moved around to find the sweet spot. Drip. Drip. Drop. I ate scrambled eggs with cheese on top, bacon, and home fries and exclaimed, “Compliments to the Chef!” Zach told me the story of Isaac saying that at a diner after a Dave Matthews Band. Seriously, that was the bone marrow transplant. Thankfully, gravity does always win.

As the days move in the positive direction, we hope that the new stem cells will grow and he will start to “engraft” which basically means that the donor’s cells are taking to his body. He’ll also be monitored closely for reactions. He’ll continue to be in isolation since his body’s current immune system is basically non-existent and needs to develop. He’ll continue to be on a substantial amount of supportive care medications — steroids, anti-rejection, blood pressure, antibiotics, antifungals, pan relief, and so on. But, he is doing very well through it all and even had some energy to sit on his bike, pretend to talk to Maia on the phone, eat, and smile a bit. We’ll be in the hospital for 4-6 more weeks. But that’s OK. As Zach says, “The bone marrow transplant isn’t really a moment, it’s a process.” Drip. Drop.

Thank you all for the love. ‪#‎LukaTheLion‬ sends you his biggest, strongest, bravest ROAR!

BMT Day -14: Diving Into Transplant

The first day of conditioning regimen for bone marrow transplant is when the switch flips from one reality to another. In one quick injection to the leg, anticipation is shed and all of a sudden you are living in the reality that was only in your mind. Instead of staring at the pool of water from the diving board, you are actually moving forward with the process which is an oddly helpful feeling.

All in all the day went well with some smiles and laughing. Luka started off playing with daddy in his little room. As the day evolved, he ended up sleeping and cuddling a lot with mommy and his favorite youtube nursery rhymes video. There were also bursts of verbal excitement when the room was cleaned and his favorite nurses and Dr. Philip stopped by.

Luka did end up having a reaction today — faster breathing and heart rates along with this first ever fever. (Yes, friends he’s been hospitalized 5 times previously, all with life threatening infections and never once a fever – it’s part of his unique condition whereby his body’s immune system doesn’t really “turn on.”). He’s gotten a lot of additional meds to help him tolerate the reaction and they all seem to be working as long as he gets it every 3-4 hours. After a tough couple hours, he’s now sleeping peacefully and hopefully will through the night. Thank you Dr. Philip and all the nurses monitoring our lion so very carefully!

In beautiful parallel narrative, our Maia the Bee was busy flying into Y counselors arms with pure joy. Let’s dive in!

Our Butterfly

Maks fluttered into our lives — quickly. We had just moved to the Rivermill, a renovated loft-style apartment that previously functioned as a textile mill in the Village of Saxapahaw just 15 miles west of the college town, Chapel Hill. Little did we know that in the course of a couple of months and after about 10 meandering years of courtship that we would be watching the fashion show, Project Runway, as we discovered — on my birthday! — that we were with child, miraculously. And when I use miracle, I don’t use it lightly — the chances of even just being pregnant, let alone what would end up happening seem so low that a logical person wouldn’t bet on it. We moved to the Rivermill on a whim — almost like something pulled us there, and we probably aren’t the only ones who experienced this. There was something unique about Saxapahaw and the Rivermill aside from it’s place on the side of the Haw River with a gourmet gas station eatery.

We quickly did the things that people do when they get pregnant for the first time — we worried, made like changing decisions (such as finally getting married), found an OBGYN practice, and got overwhelmed by other people’s opinions and all the material items that are “needed” for pregnancy and baby. Just like in any family, there was drama over a baby shower, and a lot of excitement for the changes that would come with a new addition to the family. We didn’t have a baby room ready, but we had a name which was solidified when we both were drawn to a photo of Saint Maksymilian in a Polish Church rectory basement in suburban Maryland.

There had been a lot of heavy things happening that April 2010. A plane full of over 100 Polish dignitaries traveling to the location of the Katyn massacre crashed near the terrible, terrible site. My great aunt passed away. And then there was that volcano in Iceland that spread across the entire continent of Europe reeking havoc on air travel.

We went to a routine ultrasound with our favorite of the revolving door of doctors at the OBGN practice — Dr. Raghandale, and Maks was growing and looking good at 34 fetal weeks of age.  Three days later, we saw Dr. Raghandale in the waiting room of the main ultrasound room while she was a patient with her family happily waiting for her very own ultrasound. We were there for more distressing reasons, and it was that moment when the nurse walked away from the machine to get the doctor that I will never forget. The moment the doctor said those words, there were millions of emotions, thoughts, words that raced through me rapidly. It there is anything in life I could rewind or take back it would be the incredible pain that I felt. But then we wouldn’t have our beautiful, awe-inspiring two children and Maks wouldn’t be the martyr that he may have been meant to be.

Two days later, Maks was delivered on April 17, 2010 — the same day as the funeral to honor those who perished in the horrific plane crash. My mom stood by my side, comforting me by moving her hand along my forehead while we listened to Michael Jackson’s song from Free Willy. Zach held my hand as the room was silent. The hospital did many things to honor and respect our situation, as it wasn’t the normal labor and delivery. There were special signs on our door to “warn” nurses and doctors, we got a bear as something tangible for me to carry home, a certificate of delivery with baby footprints, and a photographer came to take photos of Maks for us to have for later. Our immediate family members who could be there paid their respects.

Aside from a few minor surgeries and illnesses, this was my first major experience with the healthcare system. I hadn’t ever experienced the rush and in and out nature of hospitals — the whole new world you have to get to know with roles, vocabulary, and how overwhelming it all is. Even after delivery, nobody knew what went wrong. We went along with an autopsy, only to change our minds later. The most I remember is the one night Maks stayed in the room with us. I was finally sleeping and woke up suddenly during Saturday Night Live and Kesha’s performance of “Your Love is My Drug.” She was wearing neon and it was an insane looking performance. For some unknown reason, it was the most comforting thing in the world — maybe because it was this shared experience with Maks. I cannot explain it in words, but there was a feeling that just made sense as I came to from a deep sleep to witnessing this performance.

Another major aspect of these ever so challenging days was my mom’s visit to a church on the Haw River across from the Rivermill. She just needed a place to go to turn to. There she met a woman who was married to Pastor David, and in the typical way that my mom has — they all became instant friends and David came to the hospital to see us. We didn’t have a church at that time, and both Zach and I felt the gigantic space that god and faith could help fill. The moment that Pastor David walked into the hospital room — we recognized each other. Months earlier in December, my car broken down on the bridge over the Haw River between the Rivermill and his Church. Pastor David had come out of his church to help stop traffic, recruit a former military guy to help him push my car, and waited with me as Zach drove from work to help out. He was a saint then, and at the hospital — just simply by showing up. It was in his church that we had Maks’ funeral service and Zach gave the most touching eulogy that you could ever imagine. I can still see him standing at the pulpit in the suit he just recently wore at our wedding and it was the classic example of people don’t remember what you say, but rather how you make them feel. I have never been more proud to call Zach the father of my children than in that moment. Somehow, he got a packed church full of people mourning the loss of a baby to laugh at the thought of me canoeing and running a 5K while pregnant.

Pastor David and his family would end up moving to Arizona, but their legacy lived on. Literally. Without even knowing it, we named our daughter Maia which was his daughter’s name. And, in typical Saxapahaw fashion, we were in the General Store a day after I was in the hospital almost induced, but not quite yet — when Zach was getting our order and I starred aimlessly into the soda display. The name Maia came to me, and it stayed. I had not made the connection to Pastor David’s Maya until a year or so later when another member of the Village reminded me of our Maia’s namesake.

Maks is buried in Saxapahaw. His middle name is Gerard which is the patron saint of childbirth. It is also the middle name of our delivery nurse, Maria. She was the tenth child for her mother and a very difficult pregnancy so her mother prayed to Saint Gerard. We felt so much inspiration from Maria and her story that we forever connected Maks and our lives to Saint Gerard. Again, something told us to not use the middle name Charlie after Zach’s father and grandfather. When Zach’s dad asked me why we didn’t use Charlie for Maks’ middle name — I simply told him we wanted to save it for another time.

We now see butterflies all the time and believe that they are Maks communicating with us. Zach gives anyone we know who struggles with having children a Saint Gerard medal. Words cannot express how much we love Maks and how much he has done for us. We think about him constantly and can see him in our hearts and minds as the sweet little boy that he was and always is.

Baby #3

Before we officially met Luka, he was a very, very brave miracle of life. At around 10 weeks of fetal life, we had an ultrasound — actually at the whim of our beloved OBGYN Dr. Raghandale. I will never forget her walking out of the room after congratulating us on this first doctor visit for baby #3. As she was in the doorway walking out, she said, “let’s just get an ultrasound — for dating purposes” — those words exposed one of the first puzzle pieces along Luka’s story.

The next turning point was on September 9, 2013 when we had the ultrasound which — according to the tech — was just peachy, only to take a very serious turn in the opposite direction when the MD who does the official read of ultrasounds came in our room — and sat down. He informed us that Luka had a “cystic hygroma” which was typically associated with a genetic abnormality and that he recommended us to prepare for the worst and undergo genetic counseling and testing.

We were then ushered into a holding room for people who grapple with news like this (or worse) in the ultrasound area — and we refused to enter. That room was the same room we were ushered into on April 15, 2010 when Luka’s older brother, Maksymilian Gerard Conrad Fisher, was declared to not have a heart beat at 35 weeks of fetal age. It was only fitting that the room would be the same, since Maks was named — before he passed on — after Saint Maksymilian, the Polish priest who raised his left hand to sacrifice himself in a concentration camp during WWII. It also can’t be a coincidence that in every ultrasound Maks used or raised his left hand. When I was pregnant with him someone told me that science has proven that right vs. left hand dominance begins as early as the womb. Maks sacrificed for us all, we just didn’t understand it then, and still don’t completely.

After one of the most challenging weeks of our lives filled with so much prayer I was almost gliding through life in a meditative state, the results finally came for the genetic tests that would tell us more about what conditions Luka may or may not have. At that time, this test meant everything to us. Now I wonder what we would have thought if you had told us — or Luka — that this would be the first of hundreds of tests to get to the bottom of everything. The results were negative for several severe genetic conditions and it was recommended that Luka have many, many ultrasounds to monitor the situation. Oh, and on that phone call in my office at work, I found out that Luka was a boy. Just like Maks.

A few weeks later, Luka’s big sister, Maia, joined us for the ultrasound that would tell us if the cystic hygroma was still there, worse, or resolving. Maia had a cold which prevented us from sending her to day care, so we made it a family affair — of course, we had to bring SNEETCH, her favorite stuffed animal and Dr. Seuss character. We held hands, as sneetches do, and walked into the same ultrasound room with the same just peachy tech. The hygroma was no longer there. We would have many more ultrasounds to see if the hygroma continued to be resolved, as it did. Every time I heard a medical professional say, “resolved” — it just didn’t click with me. But prayer kept me feeling positive. And Luka continued to be very, very brave. And Maia continued to make us laugh — with sneetch, of course.