“I will never say no to a helicopter,” says Emily Kuykendall of Kelseyville, California. “The REACH crew was incredible, and if Lynzi had not been flown, the outcome could have been very different.”
A year and a half ago, then 11-year old Lynzi Milano was all about sports. She was (and still is) a devoted Golden State Warriors fan. She was a basketball player herself. She played tackle football with the boys. Her life revolved around a heavy schedule of practices and games, and she liked it that way. Given her activity level, it would be easy to understand if she got pretty tired at times, or if she drank more water than most kids her age do. But Emily, as well as Lynzi’s dad, Dave Milano, began noticing an excess of both. Lynzi spends time with each of her parents, and they keep in close contact about her.
A year and a half ago, this beautiful, athletic girl didn’t know she was about to go through an extremely challenging time, or that in a few months she would take a helicopter ride that might have saved her life.
“Her dad and I both noticed that something wasn’t right with her,” Emily says. “He noticed that she was frequently tired at basketball practice, that she was tripping sometimes and her shots were off. I noticed that she was tired when I picked her up from school and that she was eliminating a lot of foods.” Emily got more specific. “Some nights, Lynzi would drink an entire case of water plus four or five large bottles of Gatorade.”
Emily, a nurse at Sutter Lakeside Hospital in Lakeport, took her daughter to the doctor, wondering if she might have diabetes, but a test confirmed that Lynzi’s blood sugar levels were normal. Emily’s boyfriend, Wayne Scheidemann an orthopedic doctor, thought there might be a problem with Lynzi’s pituitary gland. “He had a gut feeling, so we had tons of tests done locally, and our doctor consulted with an endocrinologist in Santa Rosa,” says Emily. Among these tests was one that measured the level of antidiuretic hormone (ADH or vasopressin) in Lynzi’s blood. ADH controls the amount of water excreted in the urine. Without ADH, the kidneys do not work properly to keep enough water in the body. “We had to wait 14 days for the results, and when we got them, Lynzi’s number was zero.”
Lynzi did have diabetes, just not the type Emily was thinking of and the type most of us are familiar with, diabetes mellitus. Lynzi was diagnosed with diabetes insipidus (DI), which is very rare. Although they have similar names, these two conditions are entirely separate and have very different mechanisms. In keeping with Lynzi’s symptoms, DI is characterized by excessive thirst and urination. This occurs because the body can no longer regulate its fluids. Typically, DI occurs after pituitary gland surgery or after a major head trauma that impacted the pituitary gland. Lynzi’s MRI, however, showed nothing unusual.
Emily undertook an exhaustive online search for a physician with DI expertise and ultimately found one at Stanford, Dr. Rajiv Kumar. “Dr. Kumar was very familiar with DI,” says Emily. “He said that normally a tumor shows up first, then diabetes. He ordered another MRI in October, six months after the first one.” After the second MRI, Dr. Kumar called Emily. “He told me there was something all over Lynzi’s brain and he didn’t know what it was but wanted her to see an Oncologist. He said it was around her optic nerves, her ventricles, and her pituitary gland. When he said ‘oncologist’, I couldn’t even process it.”
“The last thing we would have thought of was cancer,” Emily says. “Our whole life went from working out and athletics to living in the hospital.”
Lynzi and her family conferred with doctors the day before Thanksgiving. She underwent spinal taps and an array of tests to determine what the abnormal findings of the MRI were and if the suspected cancer was anywhere else in her body. It wasn’t. With an exception of no longer producing ADH and an abnormal MRI, all other tests were normal. Lynzi needed a biopsy to determine the cause of the abnormal areas and to obtain an official diagnosis. “Lynzi got the top guy at Stanford, Dr. Michael Edwards for the biopsy,” Emily says. For the procedure, Lynzi was put in a halo, and the doctor accessed her brain through her nose.
Lynzi was finally diagnosed with a Pure Germinoma, a type of germ cell tumor. Germinomas are rare, representing just 3-5 percent of all childhood brain tumors. Germinomas can be benign or malignant; they occur twice as often in males and are usually diagnosed between ages of 10 and 21. (Lynzi was now 12.) Germinomas are treated with chemotherapy and radiation.
Lynzi would need four rounds of chemo to try to stop the tumor from growing and six weeks of radiation to hopefully kill it. Everyone was thrilled when after two rounds of chemo; there was no sign of the Germinoma. Nonetheless, doctors wanted Lynzi to complete the originally prescribed cycle of treatment.
Lynzi had a lot of support along the way, especially from her family. She had her mom and dad, her mom’s boyfriend Wayne Scheidemann, her stepmom Jessie Milano, and her siblings—Aleia (15), Jaela (8) and Tyrus (17 months). Also keeping watch were the family pets: the dogs, Josie, Sam and Minnie, parrot Jackson, and her beloved all-black cat, Bella. And many friends from school were there along the way.
By mid-April, Lynzi felt better than she had in quite a while. One weekend, she even felt good enough to go swimming on Saturday and shopping with her dad and sister on Sunday. Partway through their excursion, however, Lynzi said she wasn’t feeling very well. They cut their excursion short so she could go home and rest. Lynzi was up frequently that night, urinating and rehydrating, urinating and rehydrating.
By morning, Lynzi was vomiting. She had an 11 a.m. appointment at the hospital to get her routine labs done. “When I met her at the hospital, she felt warm,” Emily says. “I took her temperature. It was 101.3.” On the advice of Lynzi’s oncologist, Emily took her to the ER, where it was confirmed that Lynzi was neutropenic. Neutropenia occurs in about half of people with cancer who are undergoing chemotherapy when the level of neutrophils—a type of white blood cell—drops too low. Like all white blood cells, neutrophils help the body fight infection. Their specialty is destroying bacteria in the blood. As long as Lynzi remained neutropenic, her susceptibility to bacterial infections would be much higher. When not taken care of quickly, bacterial infections can become life threatening in a very short time.
In less than an hour, Lynzi’s temperature was up to 103.2. It was time to get her to Stanford. A ground ambulance could be there in about three hours, and initially her doctor thought that would be fine, but when Lynzi eliminated a large amount of fluid, he reevaluated. The hospital requested an air ambulance. REACH 6 in Lakeport responded.
The REACH helicopter arrived quickly, piloted by Craig Piowaty. With him were Flight Nurse Cindy Scruggs and Flight Paramedic Nathaniel Norling. Emily remembers, “In those moments before the helicopter arrived, we were really scared. When the flight crew walked through the door, it was like, aaaaahhhhhhh… It was very comforting. I remembered Cindy from pediatric advanced training, so seeing her on the flight crew was a relief.” Cindy was able to offer Emily even more relief. “She told me I could fly with my daughter. That was really, really good news.”
Cindy Scruggs, who has flown with REACH for 16 years says, “It’s always my preference to take a parent if we can. It’s usually just more calming for everybody involved during the transport. Before we fly, I have an honest chat with the parent, and I let them know that I am going to do whatever is necessary for their child.” The sight and sound of the helicopter were nothing new for Emily—she has loaded many patients. But this time was different. “It was really weird to walk out there and not walk back into the hospital,” she says. “I was pretty quiet. I was still just trying to process.”
Cindy and Nathaniel took a few minutes to talk with Lynzi about what to expect during the transport. Cindy was struck by the 12-year old’s strength and certainty, and also by her communication skills. “She’s a strong personality. She knew what she wanted. I could tell that she was trying to take control of a pretty uncontrollable situation,” Cindy says. She noticed something else. “Lynzi had lost all of her hair from the chemo, but she seemed to have a self-assured image.”
“The REACH crew was so good about talking to Lynzi,” Emily remembers, “and they also acknowledged me. I didn’t need too much attention, but I was fragile, and the crew was really comforting.”
As if a medical emergency wasn’t enough, to add insult to illness Lynzi was going to miss that day’s Warrior’s playoff game. This was an enormous disappointment, so Craig helped ease that particular pain. Oracle Arena, home of the Golden State Warriors, was in their flight path. Emily shares, “When we were over Oracle, he tilted the helicopter so Lynzi could see it, and Cindy took a picture. Cindy later had the picture enlarged, and she sent the enlargement to Lynzi.” Emily says that whenever her daughter stays in the hospital, she takes the picture with her and hangs it in her room.
Emily admired how the crew worked with her daughter during the flight. “They were wonderful. She’s at that age where she wants to be really private with her body, and here she is in a pretty small space with two men next to her and a woman she doesn’t know behind her. But the way they shielded her made her feel completely comfortable. They were so respectful.” Cindy confirms that “having a plan that would give Lynzi some dignity” was very important to the crew.
Lynzi stayed fairly stable during the transport, but no sooner had they arrived at Stanford’s Lucile Packard Children’s Hospital than her head started hurting. The pain escalated very quickly. Emily says, “By the time we arrived got to ICU, her head hurt so much she was literally screaming in pain.” Lynzi then started vomiting uncontrollably. She was given fentanyl for the headache and nearly stopped breathing, and for a moment doctors thought she would have to be intubated. Emily says. “It was very scary.”
But like Cindy said, Lynzi is strong. She bounced back from the April episode. She made it through her final round of chemotherapy and six weeks of radiation. There is currently no sign of cancer. She has spent a lot of time in the hospital, but her mom says she only cried a couple of times, and only because she wanted to be at home in her own bed. “She was always smiling,” Emily says. “We had her room all decked out in Warriors stuff. She was just always very positive.”
Not surprisingly, Lynzi likes to help others. Recently one of Emily’s co-workers was diagnosed with cancer. “Lynzi sat her down and talked to her about chemo,” Emily shares. “She told her what to expect and how she was going to feel. It was the most intense conversation I’ve ever heard between to people.”
Emily talks about some of the ways the experience has changed her. “Our family spent so many days in the hospital together when normally our life was rushing around to practices and games. Many days we literally just sat there in the hospital with each other. It changed my perspective in many ways. A lot of things just aren’t a big deal anymore. Another thing is with me being a nurse, I used to use the word ‘cancer’ almost like it was nothing. Let me tell you, when this happened with Lynzi, it turned into one of the hardest words I’ve ever had to say in my life. When I talked about her, I could say “tumor”, but it was so hard to say ‘cancer’. And even though I feel like I’ve always been attentive to my patients, after sitting in a hospital room for hours and days—sitting, crying, wanting to take a shower—I now try to pay more attention to the families as well as the patients.”
“We’re so lucky to have REACH in our area,” Emily emphasizes. “It’s such a good service. If what happened to Lynzi between the time we landed and the time we got to ICU had happened in the back of an ambulance, I don’t know what we would have done.” Although Lynzi will always have diabetes and the associated water balance risks, she is able to take a replacement hormone that helps her body with the regulating. And as Emily pointed out earlier, they’ll never say no to a helicopter. REACH wishes Lynzi and her family a happy, healthy future together. We are truly honored to have played a part in Lynzi’s healing.