Transplant

Well… it happened.

(!?!?!)

Yes, it happened. And I’m still trying to catch my breath.

I apologize for not updating since last December.

It turns out that transplant is an insane “stress-fest of emotion.”

I did give several updates on Instagram and TikTok starting last Fall, including more recent updates in the days leading up to Day 0, or Transplant Day. Many of my social media posts were to encourage stem cell registry signups. Some posts were just fun posts, such as when we got our Christmas Tree, or when I posted our costumes for last year’s Dia de los Muertos and Halloween. (If you haven’t checked them out, go to Instagram, Facebook, and Tiktok and search for adahlias.adventures.)

I kept thinking of this blog and intending to update it, but it seemed like I never could sit down and actually DO it.

I’m sure some of you know how that feels.

I suppose it was because everything was so in flux. (And it really still is.)

And there was a ton of pressure. (And there really still is.)

But here we are now.

And things are good.

We’ve been very lucky, and very careful, and very smart — and Adahlia’s doing well.

Before I dive into transplant — it happened!?! — let me give an update on how we got here.

What happened after the Aug ‘23 postponement

We arrived back in SC after Adahlia’s transplant was three-times put-off in Seattle last summer (2023), having already been twice postponed in 2022. (Yes, seriously).

I’ll admit, it was a joy to flee the intensity of medical transplant for at least a few months of pretending to have a “normal” life.

When we got back to SC, Adahlia was able to rejoin her YMCA soccer team for Fall season 2023 (“yay” for being able to cheer on kids while sipping coffee and eating donuts!) She was also able to resume with her dance studio (Palmetto Conservatory of Dance) in time for us to dance the Nutcracker 2023 with the Columbia Classical Ballet.

(Yes, the “us” was intentional. I was able to cross the stage with her and dance as a Party Parent in the opening scene, which was super special for both of us.)

As Fall turned into Winter, it became clear that however confusing or odd Adahlia’s bone marrow’s biopsy had looked in July (causing the second postponement of the year), her peripheral blood counts weren’t reflecting anything unusual. She didn’t seem to be developing cancer or MDS (THANK GOD), and certainly also wasn’t going into remission for Diamond Blackfan Anemia. In fact, Adahlia’s hemaglobin was still falling regularly, like clockwork. She was still requiring blood transfusions every 3-4 weeks to stay alive.

Maybe we didn’t have solid answers about what had happened (or was happening)…

But… that wasn’t anything new.

We could determine at least two things:

1) Her bone marrow was NOT going into recovery.

2) Transplant WOULD be necessary if I hoped to cure her anemia.

I’ll admit, when I wasn’t feeling the thrill of escaping the transplant unit for “normal” life, Aug-October was a very, very low point for me.

Because the truth was that we hadn’t actually escaped anything.

And it wasn’t “normal” life.

Yes, it was good to leave the horror of imminent transplant and the tragedies faced by so many ailing children and families that had now become our friends.

But if you’ve ever put off a test or essay to have a bit of fun, you know what it’s like to not really be free of that impending task. You know you’re going to have to go back.

This was like that but on a much greater level.

I had thought we were ready. To have had so many false starts, to have geared up so many times only to downshift, to have twice already begun packing up a home for a year, to have driven across the country twice, to have packed away personal and special items to try to make everything a little less awful, to have prepped your home for rental strangers, to have had to find safe, temporary homes for beloved pets…

… and to know you’d have to do it all again in less than six months?

I felt like a pinball on a very depressing game. If transplant was right for her, if it was going to be the cure and not the death of her, WHY was it so hard to get it done?

I am a person of deep spirituality. So, I decided that there had to be some sort of meaning in all the postponements. What was I missing? Was it possible there was something about transplant at that time and place that made it NOT the best choice for her? But what would possibly be different about it just 6 months later?

And was there something I could have done better? Did I miss an opportunity to turn that awful situation into a service for greater Good? Besides a website, and raising awareness among those in our circles, how could I have done more? What would have allowed Adahlia’s life to make a bigger positive impact on humanity?

The answer was obvious: In 2023, I had been too distraught to do anything for the bone marrow registries. (And for all other parents, please know that’s okay. That’s expected. Having your child go to BMT puts one’s world on a knife edge. Noone expects an afflicted family to run a charity campaign in the months prior to transplant).

But, perhaps I was ready now. She had completed the entire BMT workup of tests, surgical procedures, and systems examinations. If we had to do it all again (including the awful central line surgery), I was ready for what was coming. I could face it again.

And yes, Adahlia still had one perfect match (I hoped) in the world. But there were kids without one. Perfect matches matter a GREAT deal for survival outcomes. She and I could help those kids without matches by inspiring strangers to sign up. Adahlia's story was compelling. I had professional speaking experience. She was relatable. We could help.

I contacted Be the Match (now the National Marrow Donor Program) as well as Salute to Life (the Department of Defense’s stem cell registry program). My contacts in the organizations were clear that they did not want to add any additional burden to our family (ie, me). But I was determined to do whatever we could to help other families between now and when we went back to transplant. It felt necessary to make meaning out of it.

So, Adahlia was assigned her very own QR code with the NMDP and we began registering matches as part of Team Adahlia. (When you click to sign up there, look at the web address bar - you’ll see TeamAdahlia as part of the link address! Even though it looks like a generic webpage, it isn’t!)

I made a few TikTok videos and we contacted our local news station, WIS10. They filmed another news spot on Adahlia at the Koger Center during one of her Nutcracker performances, a follow-up to the previous year’s story, and put her stem cell registration QR code on TV. Sign-ups for Be the Match started coming in! We were SO grateful and encouraged.

Then, Adahlia got to go on stage with Lindsey Stirling at her holiday concert in NC (Adahlia is in the blue sparkling dress to the left) AND Adahlia ended up dancing on stage(!) with her! Adahlia was even in a video posted to Lindsey’s own TikTok account (see link!)

With everything we did, from holiday ice skating to making and walking with our own lanterns for Columbia’s Winter Solstice celebration, we filmed videos and encouraged people to sign up for the stem cell registries.

It was kind of a lot, but it was also fun. Focusing on finding matches for other kids took our minds off our own worries. Adahlia was “all-in” on the project and gave her approval for every video we made. Together, we had a blast and found purpose in pitfalls.

Around this time, I realized that if I had learned anything from our experience in Seattle, it was that not having a solid “home base” and ground support during bone marrow transplant for a child is really, really hard — especially if you are a solo mom.

Yes, the Ronald McDonald house provides an important service.

Yes, there are also short-term rentals.

Yes, it is possible to make new and supportive local friends.

But transplant is a time of wild uncertainty and high financial burden.

If there was anything I could do to make it feel a little “safer” and more secure for us — I needed to do it. I couldn’t melt down into a stress-ball of goo.

Adahlia and I had lived in Colorado for over 5 years and we still had a house (used as a rental) with friends approximately 60 miles from Colorado Children’s Hospital. Children’s Hospital in Colorado was registered as a satellite location for the treosulfan study led by Seattle Children’s, the same study Adahlia had joined when she started the BMT process in Seattle last year. Treosulfan is a lesser toxic chemotherapy used in Europe with great success — and I was determined to get access to it for Adahlia.

I asked Adahlia what she thought, and she said she would feel better doing the transplant at a hospital near our old hometown. So, I made inquiries and confirmed that we could transfer Adahlia’s transplant from Seattle Children’s to Children’s Colorado. We had hoped to re-start BMT procedures shortly after the New Year. But because the scheduling of transplant is complex, we had to push Adahlia’s transplant from January to February.

Around this time, I discovered that the National Salute to Life representative for the DoD lived not far from us in SC. He invited us to join him on his upcoming speaking rounds.

I figured, “Well, if we aren’t going to be able to go to transplant… why not?”

Over the next 3-week period, Adahlia and I traveled to and spoke alongside the Salute to Life representative at the Army National Guard NCO Academy near Ft Jackson, SC as well as the Airmen Leaders School in Charleston, SC. In addition, a friend invited us to speak to her medical conference in North Myrtle Beach, SC.

Then, the National representative told me that the United States Military Academy at West Point, my alma mater, was hosting a 4-day Salute to Life and American Red Cross combination blood and marrow drive in early February. He couldn’t attend, but if we wanted to go, he’d be happy to put us in touch with his people on the ground.

Around that time, I learned that Adahlia’s transplant would need to be pushed to late March due to the donor’s schedule. So naturally, I said yes.

A few days later, Adahlia and I were on a plane flying out to West Point. Adahlia and I were able to address the Corps of Cadets twice. In her characteristic, straight-forward style, she explained DBA, what she hoped to gain from transplant, and ended with, “Well, you probably want to get back to your lunch now, so TAKE SEATS!”

The Corps roared in approval.

Adahlia addresses the USMA Corps of Cadets at West Point in February 2023

Adahlia met young men and women players from the Army Football, Women’s Soccer, and other Army teams. She met the Superintendent, his wife, and their service dog, and worked alongside military personnel and their families on behalf of Salute to Life.

In the end, the Corps of Cadets did not disappoint! By 7 pm on our final day, we had used EVERY available sign-up packet and had more than DOUBLED the sign-up goal for the S2L stem cell registry.

Speaking to the Corps with Adahlia is something I’ll always treasure. It was heartwarming to see everyone step up and volunteer to find out if they might be a child’s perfect match.

The importance of one person

While the unplanned travel was a bit hectic, especially with pre-transplant scheduling uncertainty at an all-time high (when would we pack? when would we leave? when would the donor be able to commit?), it was also a really empowering time for Adahlia.

Shortly before we left to speak to the Cadets at West Point, Adahlia shared with me that she was experiencing misgivings and fear about going back to a hospital. “Why did it get cancelled last summer if we are just going to have to do it all again anyway?”

I laid down next to her.

“What if there is a child who has cancer right now,” I said, “or is going to get the diagnosis in five months. And she doesn’t have a match. But there is a Cadet that is at West Point who would be her perfect match. What if, because cadet life is busy and stressful, he plans to donate blood with the Red Cross, but he doesn’t realize how important it is to join the stem cell registry. So he isn’t planning to sign up for that. But what if we go, and he hears you tell your story, and it inspires him. He signs up, and then he gets called up and asked if he wants to save her life, and he says yes, and it DOES save her life. What if she goes on to grow up to become a prize-winning poet, or a politician, or a doctor herself? What if she later helps to prevent a war or inspires hundreds of people to live better lives… and it wouldn’t have happened if you hadn’t gone to speak to the Cadets?”

She wiped her tears and said, “I understand.”

A quick trip to NYC & half-way across the USA

After an exhausting week of speaking and soliciting individuals for the stem cell registry, Adahlia and I took the train to NYC for approximately 24 hours of NYC. It was her first time in The City that Doesn’t Sleep, and I was determined to do it up right! (Pictures and videos, perhaps, will be found on social media in the coming months).

We found Balto’s statue in Central Park, went ice skaing in Rockfeller Center, took iconic photos and saw the Statue of Liberty (among other landmarks) from the Top of the Rock, got a slice of NYC pizza, took the subway a few stops, rode in an NYC yellow taxi, saw Harry Potter, the Cursed Child on Broadway, walked past Tiffany’s on 5th avenue, and visited Times Square both in daylight and at night!

The next day, we returned to SC and had 2 weeks to get everything in order. With her help, I packed up our lives for a year and preparing our house (again!) for guests.

As any solo mom might imagine, the journey across the country - much like last year - was in itself a feat. (And this time, it was complicated by a new puppy).

But my goal is to always try to find fun and educational or life-enriching experiences in everything we do, and though I was exhausted in every way, including financially, we managed to enjoy our travels and even take an afternoon to see the Kansas City Zoo.

Termites, Home Renovations, & Transplant Workup

We arrived in Colorado in early March. Shortly after arrival, we learned that Adahlia’s transplant would need to be pushed out to late April. But that was okay, because I also learned that the paperwork would take weeks to jump through.

I also discovered…

…that our house had termites. And termite damage. A major renovation would be necessary along the back of the house and in the basement, and all repairs would need to be completed before she was admitted for her BMT.

Construction dust would be a “no-go” once the hospital discharged her home.

For the next 6 weeks, we lived in a construction zone.

As soon as we received the paperwork green-light, she began BMT workup for the second time in her life. With much teamwork and coordination, the required exams and procedures were completed by April 18, as well as the necessary home renovations, thanks to our contractors. As that whirlwind wound down, I signed on the line authorizing transplant and agreed to some (but not all) of the available research studies.

We had one weekend to enjoy our house construction-free. We dropped Adahlia’s puppy off with a friend. On Monday, April 22nd, she underwent a central line (Hickman line) surgery. The surgeon did an amazing job. She was able to have a day of rest at home with her cats the following day (as I had planned ahead and already taken the class to allow me to flush and care for her central line). That day, while she rested, I packed bins and suitcases for our what we expected would be 45-60 days of life in the inpatient BMT unit.

That evening, I took the cats away to live with our friend, too.

On the morning of the 24th, before she awoke, I packed the car full of items ranging from “must-have” to “motivational.” Among them was a portable ballet barre, a gym mat, an exercise ball, healthy snacks, a suitcase for each of us containing clothing, plastic bins of toys and games, calming aids, and “emergency” supplements and herbs as well as my other professional medical supplies, such as my laser acupuncture device.

It was definitely an insane time.

Yet, you know when things get critical, the strangest things can seem absolutely essential?

I’m not joking when I say that one of the last things I did before we left that morning was to plant flowers, hoping they would be in bloom for her when we arrived back home. I watered them, took a shower to get the dirt off, then picked her up, carried her to the car, and drove us to the hospital for check-in and her first round of chemotherapy.

That first day, I re-cleaned her entire transplant patient room myself with bleach. I unpacked the car and brought items up. When chemotherapy started at 11 am, I administered integrative therapies such as cryotherapy to her hands and feet to help stave off peripheral neuropathy. To help with anxiety, get exercise, and gain a sense of control, she wanted to walk the BMT unit with her IV pole. So, we did.

Every day was incredibly busy. It was so busy that there was barely any time to think. I cleaned her room multiple times a day, in addition to the twice a day cleaning by the janitorial staff. I was constantly wiping down surfaces with bleach. With each round of chemotherapy, her immune system was further destroyed. Within a few days, she had zero defense against bacteria, fungi, or viruses.

Adahlia remained motivated to walk laps, earning stickers for her door, and I joined her as she walked mile after mile. She stretched, danced, walked laps, and I documented our experience, sharing a few videos (and there are many more I’ll soon begin to share). Our room was notable for its color and music. She did stretching and body weight exercises.

Five days of chemotherapy later, she was due a “rest day” or break from chemotherapy. The next day, they would give her the new stem cells from the donor.

And then came C. Diff.

The day before her transplant, she was diagnosed with clostrodium difficile (c. diff).

C. diff is a lethal intestinal bacteria that is very hard to eradicate.

Unfortunately, it is also common in hospitals. Somehow, Adahlia had acquired the infection from an infected patient — possibly from a provider who had come from an as-yet-unidentified infected patient into Adahlia’s room after only using hand sanitizer, as was their protocol. She also could have gotten it from the hallway due to inadequate handwashing requirements for patients to leave their rooms. (Hand sanitizer does not kill c.diff. It only spreads it. Soap is necessary to kill c. diff.)

For whatever reason, at some hospitals, until a lab result comes back to confirm c. diff., hand sanitizer is the only requirement for providers moving between rooms, even the rooms of severely immunocompromised patients on the BMT unit.

I was obviously extremely upset. I spoke with other parents and none of us had been informed that soap and water was required to kill c. diff. The hand-sanitizers had been giving everyone a false sense of security. I learned that Adahlia was diagnosed a day after an outbreak of c. diff had moved through multiple patients and multiple rooms, and that those patients had been out in the hallways. No one had bothered to inform or warn us to stay in our room. She had been faithfully hand-sanitizing with every lap. But it was not enough. And it was still very possible (perhaps, even more likely) that a nurse or other provider had brought it into our room due to the hospital’s strange protocols on hand washing. Had the hospital been more transparent, I would have kept her in our room as soon as I knew C Diff was suspected on the unit floor. From day one, I would have demanded that they handwash upon every entry, instead of simply using hand sanitizer.

But we didn’t know.

A diagnosis of c. diff. meant that Adahlia was put on room isolation. She was not allowed to leave her room from that point on. This greatly upset her.

More worrisome to me, however, were the dangers such an organism presented to a person without an immune system. She was put on vancomycin, a powerful antibiotic. But it is known that more severe Graft-versus-Host-Disease (GvHD is where the donor’s immune system begins to attack the transplant recipient’s organs, such as their skin, liver, eyes, intestines, and joints) correlates with a poor gut microbiome. It is also known that vancomycin is often ineffective against c. diff, even in a non-immune-compromised person. Adahlia had had an excellent gut microbiome going into transplant, for such things are part of my specialty. But GvHD was already a high risk for her given that her donor was unrelated. In fact, the doctors had all but guaranteed to me that she would have some degree of GVHD — the severity of it, however, could not be known.

We all knew that vancomycin would decimate her gut flora. But we had no choice. She had to go on antibiotics or risk death from c. diff.

And we had to go forward with our planned transplant day. The cells had been harvested from the donor the day prior, during Adahlia’s rest day from chemotherapy. The stem cells were fresh, freezing them would result in partial cell loss. It was imperative to give as many as possible to Adahlia ASAP. It would take weeks for the donor cells to engraft. Until that time, she was without an immune system and highly susceptible to sepsis and death.

There was no turning back.

Transplant Day Zero

While I had been hoping Adahlia would feel great during her transplant Day Zero, she actually felt pretty awful due to the c. diff.

Even so, I decorated her room. I bought brightly colored mylar balloons from the gift shop and brought them up. I hung banners of construction paper chain and stars from the ceiling. Child Life specialists hung a festive “Transplant Day” sign on her door with pictures of axolotls and various providers signed it with notes of encouragement.

Adahlia was pre-medicated in the hopes of preventing an allergic reaction to the donor cells. The team watched the stem cells fall drip-by-drip, as a nurse hand-released each drop of stem cells into Adahlia’s tubing. They watched her face as she slept.

“What will you do if she has a reaction?” I asked.

“We will give her medication to try to stop it,” the provider replied.

“You don’t stop the infusion?”

“Only temporarily. She must get all of these cells, no matter what.”

Adahlia awoke about half-way through the infusion and watched the donor’s stem cells into her blood stream.

It was a powerful and emotionally charged day.

It was the Gift a new life for her.

Days +1 through +7

Over the next few days, additional chemotherapy was given to prevent graft-versus-host disease.

By this point, Adahlia’s BMT team was aware that I was treating Adahlia using integrative tools such as red light laser and a special mouth wash for nausea, pain, and to prevent mucositis. To everyone’s delight, it was working - she had zero mouth ulcers and did not need a GI tube placed. Likewise, she had very low levels of nausea and pain, and we were able to control flares with a combination of first line medications such as zofran and Tylenol, my interventions, and the very occasional second-line anti-nausea medication.

However, it soon became apparent to me that the vancomycin wasn’t going to give us the results she and I both needed to see. Her team explained we wouldn’t likely see any results for a full 10 days, if at all, because vancomycin wasn’t often effective when a person has no immune system.

The relationship between poor gut biome and GvHD weighed heavily on my mind. As much as I didn’t want to, I realized I needed to intervene here, too. I couldn’t let c. diff lead to her developing chronic, debilitating GvHD. We’d be trading chronic infusions of blood for anemia for chronic infusions of immunoglobulins and steroids to treat the immune system. If anything, her quality of life would be worse than pre-transplant.

Moreover, the c. diff was clearly causing large-scale internal inflammation. If I didn’t do something, the high levels of inflammation would surely increase her odds of developing severe GvHD, as high levels of inflammation drive nearly every chronic disease. Combined with the lack of diverse flora that is known to increase GvHD risk…

Well, I had no choice.

I began to integrative therapies that, in my research and estimation, would work with the antibiotic to help defeat the c diff organism, while directly encouraging healing of the gut lining, and allowing her gut to repopulate with healthy, diverse, and safe microflora.

I reminded myself that - while I had never treated this exact presentation in a patient - I had been giving her other successful therapies. She was astonishing everyone with her lack of mouth sores (ulcers, or mucositis) due to the chemotherapy. The laser acupuncture, moxibustion, and reiki was working for nausea and pain. It all worked.

This would work, too.

I simply had to think like a systems engineer.

When I wasn’t cleaning Adahlia’s room, giving her treatments during her multiple-hours of infusions each day, or talking with her team, I made legos with her, read to her, snuggled her, and kept her spirits up.

The waiting game began as we waited for the daily labs to show that those new cells had migrated into her bone marrow and were beginning to produce blood cells.

During this time, she required red blood cells and platelets every few days as she had no ability to make her own platelets or red blood cells. She was SEVERELY immune compromised, without any white blood cells whatsoever.

But shortly after initiating increased integrative therapies, her digestive symptoms began to improve. She did not require a second round of antibiotics. She resumed throwing darts, doing crafts, and gentle exercise on her exercise ball. She played her Nintendo Switch, a gift from a friend, and started to dance again. I took the cake I had bought to celebrate Day Zero out the unit freezer, and we ate a slice as she opened presents and gifts.

The Friday before Mother’s Day, we noticed her hair had started to thin, so I cut it into a bob.

On Mother’s Day, I shaved her head at her request.

She continued to gain strength, and as she began to feel more like herself, she began to demand that she be let out of her room.

Of course, her team refused. She would need to remain on room isolation until a lab test definitively proved she no longer had c. diff. The caveat? They wouldn’t administer a lab test because having definitive proof would also indicate the need for more antibiotics, which none of us wanted to give due to their increased risk of severe GVHD.

It was sort of a “don’t ask, don’t tell” situation, where it was assumed she still had c diff, but as long as we didn’t retest for it and she wasn’t having symptoms, they didn’t need to do anything about it.

It wasn’t long before Adahlia started fantasizing and threatening to escape. She developed elaborate plans involving us sneaking through the hallways at night. She planned for us to make our way to hospital helicopter’s roof launch pad and fly their new helicopter off the roof to freedom.

When I countered that no one would let us out of the unit, she went online to look up hospital ventilation schematics so we could crawl through air shafts.

She found a YouTube video that taught the basics of how to fly a helicopter.

Her numbers kept climbing, and the team began to prepare us for discharge.

She had never gotten a NG tube placed, and she wouldn’t need at-home IV intervention.

All medications were switched from IV to oral.

She would be going home with one of the shortest medication lists ever given to a BMT patient upon discharge.

Release

Then —

Just 23 days after transplant —

After staying only 29 days total, starting from admission and initiation of chemotherapy —

She was discharged to go home from the hospital.

With the help of growth colony stimulating factor (GCSF - a drug that releases new white cells from the bone marrow like shaking apples from an apple tree), her neutrophils had recovered to over 2,000 (neutrophils are white cells that fight bacteria) and her team deemed it best to let her go home.

(They were probably also afraid she’d make good on her threat to escape.)

Her hemaglobin was staying above 8.4 all on its own. She was no longer requiring red blood transfusions, and it had been more than a week since she needed platelets.

Friends —

While I am sincerely glad that most of you have absolutely no idea how INCREDIBLE it is to be sent home 23 days after a bone marrow transplant...

Those of you who do know…

Know that going home on Day +23 after a bone marrow transplant from an unrelated donor… especially after a c. diff infection…

Well, it is wild.

Incredibly early.

And she never needed a blood transfusion, platelets, or other IV medication again.

While inpatient, she had no fever.

She had had no skin GvHd rash.

She had had no mucositis (or mouth sores) from the chemotherapy.

She did not need an Ng or feeding tube placed (most children do, because it is too painful to eat or drink).

She continued to eat and drink throughout transplant.

She took only minimal medications, rarely requiring anything but first line medications such as Tylenol or Zofran for pain and nausea, and often declining them.

She required high blood pressure medication on day zero of transplant, but not a day thereafter.

She was never put on oxygen.

And she only required a single dose of steroids, just once, after having a frightening reaction to her first platelet infusion.

After discharge on Day +23, she never again required additional blood product (no red cells, platelets, or IgG, growth colony stimulating factor, etc).

She only once took a medication via IV after discharge and that was by choice: it was an antifungal that could only be administered via inhalation or via IV, and after doing it once via inhalation, she vowed never to do that again.

To date, she has yet to show a clinically definitive sign of GVHD.

How was this possible? Especially with an unrelated donor?

I attribute it to the thoughtful use of integrative medicine in conjunction with the conventional medications of her transplant team.

Arriving Home

I won’t lie - because there is no point in it - getting home from the hospital was rough. She and I were both emotionally, spiritually, mentally, and physically decimated. We came home the Thursday before Memorial Day weekend to sweet gifts from friends and neighbors. We promptly sequestered ourselves away from the world.

I continued to clean the house as if it were a hospital room.

After a brief scare that same weekend of widespread petechia and an irritated central line site, which turned out to be inexplicable and self-resolving, she continued to do well.

By Day +39, she was riding her scooter and doing balancing tricks as if transplant had never happened.

On Day +77, her lead transplant physician finally agreed to removed her central line from her chest, which she had been hassling him about for weeks.

To remove a central line so soon after transplant is… again… unheard of. Most physicians prefer to leave it in for 180 days. Some prefer to leave the central line (in case of emergency sepsis, a blood vessel disorder called TMA, or other crashes) for even longer, and some transplant patients have lines for 365 days or more.

Central lines in BMT are simply never taken out before Day 100 unless they are replaced with a new central line somewhere else, like a port.

But, Adahlia’s line was removed and nothing else was placed.

To be honest, Adahlia really wanted the line out before her birthday, but on that matter, the transplant physician would not budge. He was already complaining that we loved to push him out of his comfort zone. So, we had to settle for a date two weeks later.

He was still very nervous about it. He was afraid she’d go into shock and we wouldn’t have that central line to administer medications in an emergency where every second counts.

But it turned out to be a fine decision, for she did not crash.

Again, while luck, prayers, and providence, should never be discounted, her health was not purely by passive chance. I was incorporating integrative medicine methods to keep her as safe and healthy as possible.

Life Immediately After BMT

On June 5th, just 13 days after discharge, Adahlia decided she wanted to participate in our town’s weekly Bike Night. It’s a family bicycle ride through the various neighborhoods of the town. The weekly event is typically themed. Riders play music, more than a hundred people of all ages typically show up to ride, and neighbors sit on their porches and wave as if at a parade.

That first week, wearing a N95 mask, Adahlia rode her mountain bike just a few blocks with the community, perhaps only a couple hundred yards. When she became winded and demoralized by her weakness, her legs tired and sore, I chained her bike to a park bench and had her climb in an extra-large dog carrier attached to my own bike, purchased specifically for the occasion, and I pulled her around the park.

Every week, when it wasn’t raining (and one time in the rain, when a thunderstorm broke out in the middle of our ride) she was able to bike a little father with the group.

Adahlia and I also resumed playing tennis (in the shade and wearing appropriate UV protection). Once the line came out, she found tennis even easier. Removal of the line allowed her to enjoy baths and showers without having to keep her chest wrapped with plastic. We no longer had to flush the line daily, change caps on it every 3-4 days, and change the dressing weekly.

She even got to go to our amazing community swimming pool on a few, uncrowded summer days. She was able to enjoy swimming, jumping off the high dive, and going off the water slides before summer ended.

We also held a few virtual “celebrations” with friends. We invited friends to get frozen yogurt (or froyo) and send us their photos and videos. We made a video compilation of our friends, posting it to TikTok, and are working on making more!

As the weeks went by and her hemoglobin, platelets, and white cells continued to increase, we increased the length, intensity, and frequency of our exercise. (Of course, we had many days of rest days, too). She kept up with her French and Mandarin studies, and began to take classes in Russian.

Day +100

We celebrated Day+100 on August 8th - a milestone for survivorship - with decorations, cake, balloons, and a day of celebration. It was just us and our pets, of course.

On September 4th, for the FIRST time since transplant, Adahlia was able to complete the entire Bike Night route. (I have no idea how far it is. 3 miles? 5 miles? Unsure. It typically takes 1.5 hours to complete, no matter which route the event leaders take.) The point is, Adahlia was able to stay up with the group and complete the entire ride.

She was estatic.

I was SO proud of her.

Today it is Day +139, and she is doing very well.

She has had no infections since discharge and no significant complications.

In the clinical study, she would be classified within the Event-Free Survival (EFS) group.

Which, as a mom (and as a researcher)… is such a relief.

And even though this ordeal is not over yet —

I will do everything in my power (which is a lot, as it turns out) to keep it that way.

Reflections on complications?

While there is no doubt Adalhia’s story is fortunate among those who undergo BMT…

Adahlia’s transplant has not been totally uneventful.

In addition to the c. diff., we had some flares of what seemed like could be the start of acute and chronic GVHD.

Interestingly, it always followed a pattern.

At the beginning, it was belly pain. Every time I gave her a break of 3 or more days on particular supplement I had been routinely administering since her c. diff infection, she would have a bout of extreme belly pain. It was a sharp, stabbing pain so intense she could not sit or lie still. Once, the pain was so extreme, she vomited. I would treat the pain with laser acupuncture and it would dissipate in moments. I would resume administration of the herbal supplement, and it would not return unless I gave her another 3-day break.

This was a supplement I had started earlier, while she was getting routine daily labs, in conjunction with other efforts to heal her gut and kick out c. diff. I was not expecting it to have some sort of protective effect against GvHD, but as this pattern continued to play out, month after month of me attempting to discontinue the supplement and her showing signs of what seemed to be GvHD, I began to suspect there was indeed something to it.

As we neared the Day +90 mark, if I gave her a 3-day break on this supplement, she would no longer experience belly pain, but instead experience intense joint pain. The first time, the pain and swelling was in her thumb. (She had no memory of injury, but could not bend it.) Another time, it was pain in her ankle so severe it could not bear her weight. A third time, it was pain in her knee. Each time it happened, I was able to stop the intense stabbing pain, reduce swelling, and even restore range of motion to joints within 24 hours.

It seemed, each time, like the classic start of intestinal or joint GVHD.

And strangely, it also followed the pattern of manifestion of GVHD. Acute GvHD of the intestines (among other places) typically starts before Day +90, while chronic GvHD manifests after 90-100 days, and often shows itself in in the joints (among other places).

Each time the intense pain occurred, I was able to get the symptoms to dissipate even as I considered calling her team to request advice and medications. MRIs and other tests were never done to examine or confirm anything, because symptoms were always minimized before the next business day and gone within 24 hours.

And it wasn’t just this strange surfacing of what seemed to be GvHD.

There were also the evenings she came inside after jumping on the trampoline and splashing her feet in cold water.

Shortly after coming inside to room temperature, she would begin to complain that her toes felt as if they were burning. The burning sensation only intensified as time passed. As she became more uncomfortable and nervous, I decided to treat her with laser acupuncture. Thirty minutes later, she claimed her toes felt back to normal and the burning was gone. When I described this to her transplant lead physician, he agreed that it sounded like classic, chemotherapy-induced peripheral neuropathy temperature change sensitivity.

Yet, to eliminate it in 30 minutes would be something inexplicable.

To him, perhaps, but not to me and my own medical colleagues.

Yes, it may be unheard of for neuropathy or GvHd symptoms to disappear so quickly…

But, it seems that is precisely what happened.

More than once.

And as much as I am indeed a spiritual person, I do not believe any of it was by accident or miracle.

Just as I do not believe it was an accident or miracle that she did not develop mucositis, when it is a rampant, expected, scientific “side effect” of chemotherapy in transplant.

I do not believe God chooses some children to spare pain, and others to suffer terribly.

Adahlia’s successful transplant was due to the use of integrative, scientific, and studied therapies applied in creative — and very thoughtful! — new ways.

Where we are now

She is doing so well, in fact, that her transplant team agreed to allow me to start her taper of immunosuppressive medication last week.

Starting a tacrolimus taper on Day +136 is … you guessed it (it’s a theme)… unheard of.

It could even be considered… a little… revolutionary? Rogue?

Yet her primary transplant physician is one of the most experienced in the nation.

She’s simply doing so well.

And tacrolimus is certainly not benign.

It behooves her to get off of it as soon as possible.

Especially as cold/flu and winter season rolls in.

She’ll still be on immunosuppression for at least another 2 months.

(I think).

I suppose it is really hard to say, considering we have blown benchmarks and expectations absolutely out of the water.

We will see what happens.

As we taper the immunosuppression, she will continue to feel better and better.

Her blood counts in all her cell lineages should continue to come up. They are all in healthy, normal ranges, and we should see them settle there.

Her strength and endurance will return.

And should be greater than ever.

Transplant physicians say: “The transplant isn’t over until the tacro is done.”

As I’m sure you can imagine, we are SO ready for it to be over.

We deeply appreciate all our friends and family on this journey.

It’s been… a doozie.

These next few months should be our final hurdles.

While GVHD can raise its head even years after tacrolimus ends and all transplant medications are complete… I have a feeling (and hope) that if we continue using thoughtful integrative therapies and techniques, we will keep it at bay.

We hope you will continue to follow us on social media, where I will do my best to post more frequent updates, as well as “look-backs” into transplant and her days of anemia, now that I feel things are a little less tenuous.

I will also post special times she and I have shared together that I have never shared publicly, some interviews I took with her, and as she heals, I’ll share our new plans and efforts to help parents and kids who have to endure this truly awful road.

Believe me when I say that these kids deserve joy and good things. Given the rotten hand they’ve been dealt by Life, Adahlia and I are both determined to do our best by them.

Adahlia’s transplant - as much as I rightly feared and tried to avoid it - has taught me so much.

There ARE ways to make it better.

There ARE ways to make it gentler and safer.

Stay tuned!

Thank you for all your love and for all you do in support of us.

I’ll keep this young woman “warrior-ing” — please take care of you. <3

Adahlia, Day +137 after Bone Marrow Transplant from an Unrelated Donor for DBA