The album Rotem, a jazz musician, wrote for his son and daughter has taken on new meaning, he tells PEOPLE
A musician's emotional entrance into fatherhood was documented in music and is taking on new meaning through life's twists and turns.
Rotem Sivan and his wife, Lore, struggled to start their family. It was a year before they got pregnant, a process that took "time, as well as some effort."
When the couple got the good news that they were expecting, things were still complicated. Loer "had to be on bedrest for a few months," which was "stressful" for the couple.
"The babies were fine, but it was definitely stressful. Before everything happened, we thought we had gotten past the hurdle when they were baked enough to be born, because there was a fear that she would give birth early in the beginning. She ended up giving birth at 36 weeks, which is really good for twins."
The twins were welcomed in a pretty standard delivery. Son Eden came eight minutes before his daughter Gigi. While she had a tough go of breathing at first, she settled in with mom, and everything was okay.
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"They were planning to take her to the NICU, actually, because she was significantly smaller and had this difficulty. They said, 'Oh, we'll just say hi to mom and go to the NICU,' which is not what we wanted. Then, when they put her on my wife, all of a sudden, it was like magic that her color came back. You could see that something positive is happening. And the doctor saw it as well, was like, 'Ah, interesting.' They didn't have to take her to the NICU."
The couple was "excited to finish up a complex pregnancy" and felt they were out of the woods. As the months progressed, however, they'd find out that wasn't the case. When the twins got a cold, Rotem and Lore found that "Gigi bounced back after two, three days, and it took Eden maybe a week."
"It was around December. My wife and I went together to take him to a lot of doctors. We tried to see what was going on. They did a bunch of tests and were like, 'He's fine, he just has a cold.' They swabbed him for influenza, flu."
Eden recovered for a few weeks, but fell sick once again and had a similar outcome. Doctors weren't concerned at first, but then suggested walking pneumonia and prescribed antibiotics.
"He had a harder and harder time eating, and he loved eating. He would demolish food, it was amazing, and then that month, he started not eating well," Rotem recalls.
On one day in late December, Eden barely ate all day. The couple decided to take him to the hospital, where they were told the baby had a cold and "a little bit of pneumonia" and were prescribed antibiotics. When the prescription didn't work, they tried other forms of medication, but ultimately, it "wasn't anything too alarming."
"Then our nurse, who was with us for three days, noticed that not only was he not getting better, but he appeared more lethargic and had a harder time breathing," he shared.
Rotem and Lore became increasingly concerned. They advocated for oxygen for their son, and as the doctor re-examined Eden, they determined he should be transported to the ICU.
"From there, everything went pretty quickly. Once we moved, they wanted to do a CT scan. They did it, and they saw something and determined they needed to do an MRI." While they initially thought this would take days, as it was January 2 and many hospital staffers had yet to return from the holidays, they were surprised to learn someone would be seeing their son at 3:00 a.m.
"All of a sudden, really in a two-hour span, my little boy's with a breathing tube, sedated, going into a pretty serious test, doesn't look good at all. It was pretty stressful," Rotem recalls.
"I was there alone in the beginning, and then my wife came back because we have our daughter, his twin sister, at home. We had friends who came to support us and took our daughter for a few nights, because it was a whole ordeal."
After the MRI results came back, doctors sat Rotem and Lore down and told them Eden's diagnosis.
"When they came asking us if we understand what's going on in the situation, it's not a pleasant moment. They pulled the scans and looked, and they said, 'This is what's happening.' "
Eden was diagnosed with atypical teratoid rhabdoid tumor (ATRT). Per the Boston Children's Hospital, ATRT is described as "a very rare, aggressive tumor of the central nervous system, occurring mostly in the cerebellum, the part of the brain that controls movement and balance, or the brain stem, the part of the brain that controls basic body functions."
Rotem says, "I think that conversation happened around 5:00 a.m., and they're like, 'The doctors are on the way right now to do the surgery. There's no time to waste.' "
"[The tumor] was already pretty big in the back of his head. And the reason that he lost the ability to swallow and all the breathing struggles started, and he began really deteriorating to this lethargic situation was because the tumor bed was pressing on the brain stem, which is responsible for a lot of the basic actions in the body."
Rotem recalls that he and Lore entered "combat mode" at that point.
"We didn't sleep for two days. At that moment when everything went down, I hadn't slept for two days. We were both completely exhausted, but you don't feel it. It's really just adrenaline and the stress."
As they prepared for their son to go into surgery, they admitted to themselves, for the first time, that the situation was dire.
"It was clear he'd be going under soon, and we didn't know if he'd come out of this and how he'd come out of this. It's a complex organ," he shares.
"There was a lot of stress, but my wife and I are a good team. We were trying to just take it minute by minute. It forces you to be in the moment. And the hardest thing that we noticed was going into the timeline backward or forward, thinking about if we could have done something to change it, or what our future would look like. How would first grade look like? Would he make first grade?"
Thankfully, the surgery was very successful, with the tumor nearly completely removed. Study of the tumor indicated it is an "incredibly aggressive cancer with over 90% of dividing cells."
The next step was chemotherapy, which Eden recently completed after five rounds.
"My wife did a PhD in statistics, so specifically she knows survival analysis very well. She would really do a deep dive into all the articles, looking at the actual studies and trying to understand which products and protocols we should choose. So it was really hard because we didn't have a lot of time. We had basically about two weeks after surgery to start chemo," he shares.
While that level of knowledge was, in part, empowering, "it was definitely not helpful on an emotional level.
"She was amazing with that. And we both just tried to understand what to do the best we could. When we started the chemo, it was like a straight path for these six months, which ended about two weeks ago, 10 days ago. We were in the hospital literally from December 28th until days ago. We had two mattresses on the floor and were there the whole time, which was helpful for him, but definitely not easy."
As a musician, Rotem works through his emotions by creating. Shortly before the twins were born, he wrote an album, Heart Thieves, dedicated to them.
"We recorded it in early December. And so the album was basically ready by the end of December, but I didn't have time to listen to the final version after the mix and master. There's a song called 'Eden.' There's a song called 'Gigi.' There are all these songs about them, and with everything that's happening, it's so much more meaningful," Rotem shares.
Going through the journey they've walked with Eden "really changed the meaning of the music and the album."
"Because now, it's a battle for family and a battle to try and create a normal kind of life, if you will, while also celebrating a lot of things that happened. It was a lot of hard, dark moments, but Eden came through and our families came through, and my wife and I are there for each other, and our friends are helping us tremendously."
It became a source of comfort and a reprieve as they navigated over six months in the hospital.
"For me, music has always [been] a very important thing and a big part of my life. Throughout the hospitalization, it was a ray of light because I was able to play for him, and my wife would sing a little bit for him," he says.
"Sound and music is connected to life for me. I think that this desire to create and play music is very much in the vein of life and spring, and the exact opposite of what we had to battle."
Now that Eden is home, the family has enjoyed seeing him "come back to life."
"We see his abilities coming back. Nothing is a straight line, but he's doing super well. We see every day he has more energy. He started saying a few words. He is playing, he is super happy, he's smiling a lot," Rotem shares, noting there is still "a lot of actions to take."
The twin dad explains the road ahead. "He's still feeding through a tube right now. We are doing radiation for two months."
That said, they're making the most of every moment. "We just took a little trip an hour away from home, with a hospital seven minutes away. That was the first time in over six months that we were just us. We had a friend fly in to help us with the twins and everything, but it was still beautiful," he says.
"The plan right now is to make sure Eden's on track. My wife is going to start working again, which is exciting. We're going back into life, but that's only stressful because the situation is still not simple."