This has been a long, hard summer for Nash Zahn, his wife Elise Thompson as the couple’s newest addition, Arthur Zahn, has spent more time in the hospital since his birth April 3 than in their Ahwatukee home.
The infant, who learned to roll from his back to his stomach while in Phoenix Children’s Hospital, was diagnosed with Familial Hemophagocytic lymphohistiocytosis, a life-threatening disease in which the body makes too many activated immune cells.
Since then, Baby Arthur has spent more than nine weeks hospitalized at Phoenix Children’s, undergone more than 30 chemotherapy treatments and received a bone marrow transplant with subsequent complications.
“For us, it has been insanely difficult waters to navigate,” said Zahn, who last month lost his father to cancer.
“Arthur has spent more time than not in the hospital for his entire life,” added his mother, who had worked as a registered nurse in the Intensive Care Unit at Casa Grande Banner Health Hospital.
Even with insurance through his GoDaddy employment, Nash Zahn said the family is struggling financially as well as emotionally.
“He’s pretty much our Million Dollar Baby,” said Zahn. “At least that’s what our insurance has paid. Even with good insurance, after all this time in the hospital, the medical bills are staggering.”
A GoFundMe page set up by Elise Thompson’s sister Wendy Thompson has raised nearly $13,000 since April 22. The goal is set at $25,000 at the site, GoFundMe.com/baby-arthur-fights-for-life.
This is the second time the family has traversed the ups and downs of the HLH maze.
“Our daughter had the same disease when she was a baby, and, thankfully, she’s a survivor as well,” he said of their 10-year-old daughter Addy.
“She was transferred to Children’s Hospital in Orange County (California) and had a bone marrow transplant at 5 months but she didn’t have the liver issues that Arthur has. Now, she’s doing great, she’s a normal little girl; you wouldn’t be able to tell though we take her for yearly check-ups.”
With Baby Arthur, it took days, not weeks, to diagnose HLH.
“We took Arthur to his newborn check-up at three days, and wanted to make sure he was screened for HLH because we knew there was a risk that he could have it as well, Zahn recalled.
“After running some blood work, on his fourth day, we got a call from Dr. Holly Miller at Phoenix Children’s Hospital saying his blood work already showed signs of HLH being active in his system. It was a terrible low feeling just days after being so happy our son was with us.”
Thompson said she too was shattered.
“My husband came in mid-conversation and he had to learn the news by seeing me speaking to a doctor on the phone while tears streamed down my face,” she said.
“We spent some time just holding each other while I cried. It was our last moment of normalcy with Arthur as a baby. We quickly pulled ourselves together, which is no easy feat for a postpartum mom, gathered what we needed for an inpatient stay and headed to the hospital.”
Thompson recalled that period as being the start of learning to go it alone because of the visitation restrictions meant only one of Baby Arthur’s parents could be with him at any given time.
“Little did I know that this was the beginning of a journey that my husband and I would be fighting separately without the comfort of each other as parents and partners,” said Thompson.
Zahn explained, “After we heard, we had started a plan with the bone marrow transplant team and wonderful people at Phoenix Children’s Hospital for Arthur’s treatment and the hunt for a bone marrow donor. All of this happening while COVID was going on made it extremely difficult on our family.“
“We basically formed two different households where one night my wife would be with him and the next night I would. I was only able to see my wife for a maximum of 15 minutes a day and my poor daughter missed her baby brother terribly,” Zahn said.
Zahn and Thompson describe this journey as “a rollercoaster ride.” They’ve maintained a narrative timeline on their GoFundMe page, the reading of which is difficult to absorb, even for those who don’t personally know the family.
For example, they note that on April 22, when he was not yet 3 weeks old, Arthur got his first round of chemotherapy and five days later, got a blood transfusion.
Two weeks after that, on May 8, a feeding tube was inserted.
The good news was that a 25-year-old stranger stepped up as a bone marrow donor, though complications from more chemo treatments delayed the operation.
From June 20-June 24 Baby Arthur was transferred to ICU, where he underwent an MRI and lumbar puncture to reduce pressure on his brain.
The transplant has been delayed again.
On July 7, the bone marrow transplant was finally completed.
Nine days later the family learned their son once again suffered complications that required blood transfusions due to his liver destroying blood products.
“We’ve had a lot of scary moments during his hospital stay,” Zahn said.
On Aug. 18, just hours after Baby Arthur was welcomed home, Zahn learned his father died, so he went to Nevada to be with his mother for a few days.
The evening he arrived in Nevada, he received word from his wife that the infant was having difficulties and he was rushed to the ER and readmitted to the oncology/transplant floor.
Elise Thompson said this journey began before Arthur’s birth.
“As a mother, the connection with your child is before they are born beginning with hopes and dreams and unfortunately also worries. I worried from the minute I knew I was pregnant that he would have the same disease my daughter had,” she explained.
“The time we’ve spent with Arthur on this journey, in the hospital, receiving his stem cell transplant from a selfless donor that was registered with Be The Match, has been a bit of a blur,” Thompson said.
“I clearly remember being home prior to transplant, bringing him in for chemo and lab draws, struggling with his weight gain and lack of appetite and those nights of no sleep as our baby screamed in pain from HLH activity and steroid hyperactivity.”
“He has years to go until his immune system recovers from the amount of chemotherapy he’s received and onslaught of a whole new and foreign immune system he must grow and maintain equilibrium. As a nurse I’m terrified to bring something home to him when I eventually work again. Right now, there is no option but for me to be home.”
Thompson said her R.N. training is proving invaluable to the family.
“Arthur has the equipment at home that I use as a nurse on my patients. I monitor his IV pumps, feeding tubes, administer medications, take vital signs and assess my son throughout my day. I also play with him, worry about his development, show him how to connect with the world and teach him human emotions.
“Those are the easy things that come naturally, and the others are the skills I have learned as a nurse. I am grateful that I can be this caregiver for him that is uniquely qualified in all aspects of his needs. I tell myself this will not be forever and so too this shall pass.”
For now, even their nighttime walks around the neighborhood with the infant’s stroller sheathed in plastic are limited due to blowing dust.
Despite their daily, if not hourly trials, the couple said they feel blessed to have support through the GoFundMe site and encouragement from others.
“I cannot express how much the support from our friends, family and now our community impacts Arthur. It’s hard during this time of COVID, and I know the world seems so large and filled with people who need help.
“I’m just grateful that we’re not overlooked, and that humans have this amazing capacity for community. I see it with my son - his learning and need for human connection. That’s what we feel as family right now, a need for human connection.”