“A medical marvel.”
“She is a miracle in progress.”
“I’m blown away Emily is where she is; it defies medical knowledge.”
These are some of the words attributed to my daughter, Emily, during her tumultuous road to an eventual recovery. She has overcome a rare, aggressive Stage 4 cancer, catastrophic heart failure and a massive stroke. These assaults to her body led to 27 days in a coma, 2 months intubated, 16 months ventilator dependent, 14 months with a tracheostomy, 20 months with a G-tube, and partial paralysis to her legs and left arm/hand for which she will soon enter inpatient rehab to gain as much recovery as possible.
The fateful day of August 8, 2021
Towards the end of her battle with cancer, our teenage daughter, Emily, encountered a series of infections that led to a sustained high heart rate and low blood pressure. Doctors ordered a very thorough echocardiogram (ultrasound of the heart), which showed her heart was dilated/stretched, with a decreased squeeze function. My wife, Michelle, informed me that Emily was being transferred to the ICU to better support her heart and lungs. Sensing a life-threatening situation, I raced to the hospital and arrived right before her transfer. Approximately an hour after she was admitted to the ICU, and while we were trying to help her breathe comfortably with a CPAP machine, Emily said
“Mommy, I don’t feel so good” and suddenly fell back, eyes rolling to the back of her head as she lost consciousness.
To Michelle’s and my shock and confusion, Emily had gone into cardiac arrest. The room immediately filled with doctors, nurses and respiratory therapists performing CPR on her. After overcoming the initial trauma of seeing our child go pulseless, I watched medical personnel intubate her, perform chest compressions, administer the AED
machine, and call out medications and time checks. They rotated in and out while maintaining Ma-ai (appropriate distance) and Ri-ai (appropriate timing). It was a beautiful, synchronized example of teamwork, but alas, it wasn’t enough. Emily was still pulseless.
After approximately 30 minutes of pulselessness, the attending doctor informed us that if it went on much longer, her chance of survival would be essentially nil. My wife asked if Emily could still have brain function after this much time and the doctor’s response showed doubt, but a possibility. Knowing a chance was worth fighting for, my wife found a place between the medical team to hold Emily’s hand and tell her to keep fighting, that we weren’t going to leave her side. At the end of the bed, I grabbed Emily’s left foot and applied a Kappo, firmly squeezing the base of her big toenail using my fingers. Within a couple minutes, Emily’s pulse returned. It was, however, short lived. CPR was resumed and I continued to apply the Kappo, pushing my silent Kiai into Emily and feeling confident that she would be revived again. This continued for another five minutes before Emily achieved a sustained return of spontaneous circulation–an astounding 45 minutes after going into cardiac arrest.
Emily’s heart wasn’t strong enough to beat on its own, so we were given the option of putting Emily on life support. We agreed and were whisked out of the room while a surgical team arrived and Emily was placed on a modified heart-lung bypass machine, called extracorporeal membrane oxygenation (ECMO), to remain alive. After she woke
up from the procedure, we entered her room and an intubated Emily flashed us a weak smile, an amazing and beautiful sight to see after nearly losing our daughter to a lengthy 45-minute code.
The next morning as I looked down at Emily’s bruised toe, it suddenly hit me that I did a technique supposedly inferior to CPR in a life-and-death situation–something I never thought I would do on anyone, much less my own child. I had performed a Kappo technique described in Professor Ray Law’s notes (listed under Ashi Katsu) intended for restoration in extreme cases, when the other “stimulation” Kappo for re-starting the heart or restoring consciousness (Se Katsu, Ashi Katsu, Nuki Katsu) are not successful. This particular Kappo is also known as Tsume Katsu (nail resuscitation). I was taught that this technique has successfully been used to pull someone out of a coma.
Immediately after being placed on ECMO life support, Emily was quite lucid and able to answer questions by nodding her head or giving a thumbs up or down. She even inquired about her pet rats and joked with her sister, Hannah, despite being intubated. She was able to move all her limbs except for her left leg (the cannulation site of the
ECMO). However, to our horror, after a couple days, Emily became quite delirious and slipped into a coma.
With this drastic change in neurological status, doctors ordered a head CT scan, which revealed multiple hemorrhages throughout her brain. Because of her delicate condition and the jumble of IV poles, ventilator tubing and washing-machine-sized ECMO equipment, they could not use an MRI nor transport her and were instead forced to use a portable CT machine that could not capture the true extent of her brain injury. Doctors suspected the mini strokes were caused by ECMO, although they could not conclusively rule out cardiac arrest as the culprit for scattered brain bleeds (CPR done perfectly provides only 30-40% of normal blood flow to the brain and even less to the heart). ECMO was a blessing in that it was keeping Emily alive, but also a curse as brain injury is a common side effect due to the use of blood thinners, clots forming in the plastic tubing and a number of other factors.
Knowing Emily’s life was still hanging in the balance, Michelle spent hours a day lying in bed next to our daughter, watching Emily’s favorite Netflix shows, playing her music and reading to her. Meanwhile, I started to give Emily long-life massages every single day that she was in the coma, working around the massive ECMO machine. As a biomedical scientist by training, I researched the acupressure points used in stroke recovery and was enlightened to find that some of the points are already long-life points found in Danzan Ryu Restorative Therapy (Stomach 36, Large Intestine 11, Large Intestine 4, Gall Bladder 20). I started to incorporate the other points to help with stroke recovery in my daily massages.
Nine days later and while Emily was still unresponsive, the team started to observe pulsatility from Emily’s heart on ECMO. A repeat echo showed that her aortic valve was starting to squeeze. They began the process of weaning Emily off of the sedatives that were giving her body a break to plan for a video electroencephalogram (EEG), a test that measures brain activity. Hopeful for a full recovery, I continued my daily massages, paying special attention to the acupressure points used in stroke rehabilitation.
The dreaded family meeting
With the hope of Emily’s heart showing signs of recovery, Michelle and I were asked to attend a “Family Meeting” with the oncology, cardiology, neurology, and ICU teams to discuss next steps. Here, we would learn the results of the brain EEG, as well as the consensus opinion of the ICU team as to Emily’s status. The cardiologists, who had
been educating us on various heart devices they expected Emily to transition to once off ECMO, were encouraged by Emily’s cardiac readings in the last 48 hours. They were seeing beginning signs of her heart squeezing on its own. The attending neurologist, however, had basically no hope for Emily, given the abnormal readings of the brain EEG, multiple strokes as revealed by the portable CT, and her neurological examinations while off sedatives.
The ICU team as a whole was deferring to the neurologist’s opinion, which drowned out the reassuring status of Emily’s heart and that her cancer was likely in remission. It seems that they had already formed a preconceived notion that her brain injury was unrecoverable, and subtly implied that we were headed down the path to “pulling the plug.” We were asked to meet with the palliative care team to discuss pain management and end of life processes. Emily’s sister, grandparents and aunts would be given a final opportunity to visit her.
The news hit us like a brick wall. I had already resolved myself in my goal of getting Emily to a full recovery using seifukujitsu. Michelle had sufficient exposure in her career as an educator to believe in the power of neuroplasticity and a growth mindset. We both knew enough to remain skeptical of the consensus opinion. The panel we sat before
was the antithesis of the mindset I hold when immersing myself in seifukujitsu, the diametrically opposite of what I was trained to do in the dojo, which was to never say “cannot.” Despite their statement of limitations, I remained steadfast in my determination to bring Emily out of the coma and back on the path to recovery. Michelle still remembers the look in one doctor’s eyes when she said we expect a full recovery–a mixture of pity and sorrow.
Michelle and I pushed back on the ICU team and advocated for our daughter’s life. While I hid my true intention, which was to give Emily more time with seifukujitsu, for I knew they would just dismiss it, I countered with clinical data (published in a high impact medical journal) showing that brain EEG was not a reliable predictor of outcomes in comatose patients. I also argued that their opinion was too strongly influenced by confirmation bias in their own practices, particularly as the parents of the children they see may not necessarily possess my and Michelle's expertise in our respective fields.
Ultimately, a compromise was reached. The team would give Emily a few more days to respond, then they would start weaning ECMO flows and proceed with a “clamp out trial” to determine her readiness for discontinuing ECMO life support, but without the option of transitioning to a mechanical heart pump. With her neurological status in
question, Emily would be on her own, unassisted other than being hooked up to the ventilator. If her heart could sustain her, we could wait and see if, when and in what condition she emerges from the coma.
Delving deeper in DZR-RT
I continued my daily massages on Emily. An ECMO technician approached me and remarked that the ECMO circuit flowed better while I was treating Emily. While I did not have the background to make sense of the various readings and parameters on the ECMO machine, which to my untrained eyes was as complex as the cockpit of a 747, I started to pay attention to it during my daily massages. I was able to observe in real time how the ECMO machine and the arterial (blood pressure) line reacted to the different points and techniques used in DZR-RT. I was reminded of a tidbit I learned in a massage class: that a doctor used a functional MRI (fMRI) to view the effects of acupuncture on the big toe to the optic nerve.
One interesting observation I had is Emily’s arterial blood pressure would rise consistently while I was doing Nishi (lifting and vibrating the leg). Like clockwork, it would rise faster or slower depending on how vigorous I was with Nishi, then drop back to baseline. There were times when the ECMO circuit was having trouble flowing because Emily was in distress, and I was able to remedy the situation using DZR-RT techniques.
One night, I woke to an army of nurses and doctors in what was a code blue situation because Emily had dangerously low blood pressure. The attending doctor informed me that they had given Emily two boluses of saline injection in an attempt to reverse her hypotension and she was still crashing. They were about to give Emily another bolus of saline when, half asleep, I proceeded to do Nishi on her leg. I was able to immediately raise her blood pressure and in fact, the attending doctor asked me to stop at one point because it was getting a bit too high. Emily’s blood pressure subsequently normalized to baseline level (and I went back to sleep).
Trials and tribulations after getting off ECMO
After 15 days on ECMO and having shown a significant recovery in cardiac functions, Emily was decannulated from the life support machine. Her cardiothoracic surgeon commented that Emily had received the Rolls-Royce treatment in medical care and recommended not resuscitating her should she code again. Our days ahead would prove challenging, as Emily was still comatose and experiencing neurostorming, with almost nightly runs of abnormal rapid heartbeats known as ventricular tachycardia (v-tach). The cardiology team met with us daily, adjusting her heart support medications to address each new symptom. Nevertheless, free of the constraints of the ECMO machine, I continued my daily massages on Emily, and Michelle cuddled, kissed, talked to and Netflixed with her.
Unfettered by the ECMO machine, doctors ordered an MRI of Emily’s brain. The results were stark, with sobering implications. In addition to providing a clearer picture of the multiple hemorrhages throughout the brain, it showed a rather devastating large stroke in the right middle cerebral artery, affecting the left side of the body, as well as microhemorrhages in the brainstem. This spelt a death knell for some of the doctors, leading the attending neurologist to conclude that she did not expect Emily to have a meaningful recovery.
When a doctor woke Michelle in the middle of the night to report the dismal news, the doctor had tears in her eyes and was genuinely sad to have to share such a devastating report. She was taken aback when we simply accepted the news, determined to proceed with supportive care. In reality, it did not matter. I had already resolved to bring
Emily back with seifukujitsu regardless of the findings, and Michelle likewise was confident in the power of neuroplasticity, especially in a young patient, and our collective ability to emotionally support our daughter through a long recovery.
Coming out of the coma
Around the time of Emily’s 15 th birthday, nearing one month in a coma, she began to show signs of recovering to a minimally conscious state. This included making small facial movements during massages, squeezing a squishy ball on command, moving her thumb in response to questions, and showing signs of recognition when a group of
nurses sang “Happy Birthday” to her. A neurologist informed us that she had a patient with a similar brain injury who, at eight months out, still could not do what Emily could do at the time. This gave us hope.
As Emily made progress, it became clear that she was mostly spared a common condition associated with right-side stroke, namely left neglect in which the stroke survivor refuses to acknowledge anything, including their own body, on the left side of their environment. Over the next month she recovered to a normal level of consciousness, even being able to move her left fingers. When the team of neurologists visited after a period of absence, they entered the room with a familiar skeptical demeanor, but it shifted quickly when they saw what Emily could do. Over time, our dread of their presence was replaced with an eagerness to show them Emily’s progress. We embraced the phrase “prove them wrong” and asked that conversations about stroke recovery timelines and predictions not take place at Emily’s bedside.
Over the same timeframe, Emily’s heart ejection fraction improved to a normal level on heart support medications, a striking change from the cardiologists’ initial prognosis in which they expected her to be supported by a mechanical heart pump. One of her cardiologists remarked that she has seen three medical miracles in her career and
Emily is one of them. Emily astonished each doctor who met her, for she looked better in person than on paper.
On the road to a full recovery
In January of 2022, Emily came home fully dependent on a ventilator for breathing, and we started the process of slowly weaning her off it. She was still unable to sit up on her own, roll over in bed or eat solid food but from a cognitive standpoint, she resumed school remotely (starting with chemistry no less) and scored average for her grade level on a reading assessment test. Emily has emerged cognitively normal and is the same girl she has always been–kind, funny, loving, intelligent and a little bit sassy. Just the way we want her!
Fast forward to today, Emily is ventilator- and tracheostomy-free, her cancer is 20 months in remission, and she attends in-person school twice a week. She has begun to walk using a walker, is resuming jujitsu training, and enjoying life with her sister, 6 pet rats and 2 Alaskan Malamutes. She volunteers in a kindergarten class and recently
went on two big looping roller coasters. Talk about voluntarily turning herself upside down after a harrowing two-year ordeal! Always maintaining a positive spirit, Emily remains the happiest person I have ever known.
I have much to be thankful for, including the dedicated efforts of Emily’s medical team as well as the Danzan Ryu training I received that came to the fore at exactly the correct time. I shudder to think how wildly different Emily’s outcomes would have been if it was not for the healing arts in our system.
A medical miracle… Or a recipient of the awesome healing power inherent in our Danzan Ryu system…
You be the judge.
Emily Rainey in Prof Randle’s yawara class at Convention 2023. She’s paired with her sister, Hannah, and Justin Kocher. (photo credit to Ed Shatzen)