Beating the Odds: Cash Lamar

“His experience will help others…”

(This is part one of a two-part story detailing some of the journey of Cash Lamar and his parents. Told primarily through the experiences of his mother, Roxana Alvarez, Cash and his  experience touched the community.)

This is a story of life and death. Spoiler alert: the ending as it stands, ends in life. That is somewhat amazing given the odds thrown out there the last five months for 8-year-old Cash Lamar. Cash left his home in Crested Butte January 30 in an ambulance and will return for the first time Thursday, June 21. His dad, Craig Lamar, a teacher at the school, said people in the story, including doctors, use the word “miracle” frequently.
The story really began Saturday, January 28 when, like so many Crested Butte households with kids in school, the family went down with the mid-winter crud. Cash’s mom Roxana Alvarez said she and Cash and Cash’s sister Paloma all caught the flu and were down for the count on Saturday. By Sunday, the three of them were still recovering and taking it easy but they were feeling better. “It was like a normal flu cycle,” she recalled.
By Monday, however, Cash was having a tough time breathing. Roxana said his breaths were shallow and labored. She suggested they go outside and they took a walk to the Post Office. “He was slow and he kind of reminded me of when I had had pneumonia a few years prior,” she said, “So I took him to Dr. Thorson’s office. It was really busy in there but I told them he was really sick so a nurse came out and looked at him. He was starting to look green and his heart was racing at about 177. His oxygen saturation was only at 80.”
Thorson recommended an ambulance ride to the Gunnison Hospital. Once there, Dr. Lee Lynch also saw the seriousness of the situation and she called in a flight-for-life plane to transport Cash to Denver’s Children’s Hospital.
 “It was while in the plane that I heard the word ‘critical’ for the first time,” explained Roxana who has been back in Crested Butte just three times since that plane ride. “The crew could tell he was in bad shape. When the plane landed they didn’t want to take the 15 minutes an ambulance would take to get to the hospital so they called a helicopter. I had to take a taxi because I couldn’t fit in the helicopter.”
At the hospital she was led upstairs and the doctors came out to talk to her. They told her it was very serious. “If we hadn’t gone to the doctor, there’s no way he would have made it through the night,” Roxana said. “He would have died that night.”

The first weeks
At Children’s Hospital doctors put Cash on three different types of ventilators. None helped. About 5 a.m. that Tuesday morning, they told Roxana he would have to go on an ECMO (Extracorporeal Membrane Oxygenation) machine because the situation was so serious. The ECMO device is a machine that essentially aerates the blood because the lungs aren’t working. It is the machine used as the life support system for premature babies as their lungs develop. Another type is used for patients having open-heart surgery. It is a big deal. The ECMO procedure carried with it great risk of inducing a stroke or fatal hemorrhaging. But it helped stabilize Cash. This was one of the first of many technical and medically complex situations faced by Cash. For this story, we will try to keep things as simple as possible.
Once stabilized, the doctors and staff became investigators trying to determine why Cash was in such bad shape. They found that he had an influenza virus and some MRSA staph infection was discovered in his nose tissue, a common place for staph to hang out. He also had a cold virus. The combination was creating a sort of “super bug” but one the doctors felt they could battle with heavy antibiotics. They expected he’d be in the hospital about a week.
“But his lungs got worse and worse and worse,” said Roxana. “On day six they discovered that his bronchial tubes were literally shedding their lining. It was awful. They found he had MRSA staph in his lungs. They couldn’t take him off the ECMO. His lungs were hemorrhaging and they had to try and suction out his lungs. Those first three weeks were hellish. Every day just got worse.”
Roxana, who left Crested Butte in her winter jacket, snow boots and with just a wallet, would spend the next several weeks sleeping at the hospital with Cash. Craig and Paloma would join them. Denver became their winter home. Work stopped. Expenses mounted. The cost to have the ECMO equipment in the room, not counting staff and blood products, was $25,000 per day. In addition, Cash received multiple blood products every day. They extracted so much blood for lab tests that he needed a liter of blood every other day to be added to the ECMO circuit.
The hospital bent their rules and let Cash’s sister visit him for an hour every day. The website ‘Love for Cash’ was set up and became a link to not only the Crested Butte community, but to people all over the world praying for the kid’s life and recovery. Fundraisers for Cash became the norm for the winter. Every person in Crested Butte knew the story of Cash and his family.

Trying new avenues
Roxana gives some credit to an intense Reiki, or energy healing session with providing the first sign of progress. About three weeks in, Judy Theis along with several other Crested Butte Reiki practitioners (including Bey Haver, Monica Bilow, and Rebecca Elkins) performed a two-hour concentrated procedure and the next day Cash started making some breathing motions. A tiny airway had cleared. Roxana, a certified Reiki practitioner, did Reiki with him every day in the hospital for the first six weeks.
The doctors then wanted to transfer him to another type of ECMO that was a bit less risky than what Cash had been on. The doctors don’t like anyone, adults or children, to be on the machine for more than a few weeks. But Roxana and Craig had been studying their situation intently. They asked all kinds of questions all the time. They understood that transferring the ECMO was risky and one little mishap could kill Cash. They wanted to wait a few days. “The doctors said the transfer would be about a 50-50 chance,” she said. “We asked to see if his lungs could get stronger to up those odds. And his lungs starting getting better and better. They actually tried to take him off ECMO all together but that only lasted about 12 hours. They put him back on the machine but with the lower risk procedure.”
 At that point it was clear he would be on the ECMO for a long time. He had already been on that machine longer than any other kid ever had been at Children’s. He was in unchartered territory.

Weird times
Roxana said the staff at the hospital was fantastic. They and the family bonded. In fact the nurses had be told to stop buying Cash presents.
“The doctors make their rounds every day and let the parents of the patients be there when they discuss the cases,” she said. “We could be there and ask questions. We became very knowledgeable about all this stuff and the doctors were very gracious in answering any question we had. That is one way I dealt with things. I tried to get as much information as I could.
“There were some weird times,” Roxana admitted. “After a month in a hospital bed, Cash was just a bunch of bones because he hadn’t moved. But his stomach was bloated and huge. He looked like one of those kids you see on TV when they show a famine. Some of the drugs made him grow hair all over his body. He’s eight and has leg hair. There were points when his face was swollen dramatically. His eyes were swollen shut and he wasn’t recognizable. Then his skin would shed off. Looking back it was bizarre.”

Taking a chance and turning a corner
At around week six of the ordeal, everyone decided they had to try something different. Cash had already been tied to the ECMO machine longer than any kid ever at Children’s Hospital. He spent most of his time in an induced sleep. Roxana and Craig asked if Cash could try starting physical rehabilitation to get some muscle back on Cash and change to a more nutritious diet. “We needed a shift in perspective,” she said.
But a child had never been rehabbed while on the ECMO. The universal fear was that any kid would wake up and try to take out the tubes going into his body. But the doctors and staff agreed to try. So after six weeks of being asleep they started waking him up slowly.

(Next week we will look at the journey Cash experienced as he began to wake up from an induced sleep and began a long road to recovery…)

(This is part two of the story of Cash Lamar and his last five months battling a deadly illness. He left Crested Butte in a flight-for-life plane at the end of January. He is slated to return home for the first time today, June 21.)

Since that January walk to the Crested Butte Post Office and an emergency plane ride to Denver, eight-year-old Cash Lamar had spent weeks in an induced sleep at Children’s Hospital. He had two tubes in his nose and one in his mouth. The ECMO tubes were big and there were two in his neck. He had drainage tubes for his heart and lungs coming out of his chest. He had four I.V. tubes with three prongs each on each of his feet and hands. He had casts on his feet in order to prevent a condition called drop foot. If feet remain in a relaxed position for too long, people can lose their ability to shorten the tendons in the ankle and it becomes extremely painful when you try to stand up.
As he started to wake up, the 8-year-old boy tried to piece everything together. Some of the narcotics made him lose his short term memory. He was too weak to move and he couldn’t talk.
“I explained he was in the hospital and not to pull out the tubes,” said Roxana. And after initially trying to pull out the tubes in his nose, he slowed down and began to understand his situation. The staff performed a tracheotomy so they could remove the tube from his mouth.
“He was pretty drugged up at first and I think he thought he was still at the Gunnison Hospital,” said Roxana. “But it was confusing to him. He looked outside and wondered why it wasn’t winter anymore. He cried when he realized he was in Denver.“
At weeks seven and eight the rehab started to have an impact. He could make sounds and he slowly became strong enough to lift his head. By week nine he was able to sit up for a few seconds in bed. “He even stood up for about three seconds when he was on the ECMO machine and that was huge,” Roxana said. “Most of the time he dealt with what was in front of him. He had moments of asking why but that’s the type of kid he’s always been.”
On April 15 he was taken off the ECMO machine and he could take a few steps on his own. The family and staff were ecstatic.
Roxana said when he was coming out of the narcotic-induced sleep, the three weeks of narcotic withdraw was tough. “He had sweats, would throw up a lot, his heartbeat was fast. It was a tough period but he did really well. Once he woke up, he moved forward really quickly and moved through those challenges.”
Six weeks ago, he was moved to the rehab floor. That was a huge step.
“At the hospital he is treated like a celebrity,” Roxana said. “He did things no kid had done there. He involved several departments at the hospital. He spent 77 days on the ECMO with no complications. Most kids that are on the machine more than a few weeks don’t even survive.
“He was the first kid to do rehab while on the ECMO,” Roxana continued. “The doctors and staff are writing a paper about the experience. His case has been featured at an ECMO conference in Rome. It’s a big thing for him and for the hospital. On June 7, he walked out of the hospital pulling a big wagon full of things and not many people thought they’d see that.”

Looking at options and odds
At different points throughout the process, the family was looking at various rehab situations for when Cash would come home to Crested Butte. Everything from the need for lung transplant to being constantly on a respirator for years if not the rest of his life was considered. “But he’s just kept getting better,” Roxana said. “He was taken off the list for a lung transplant. He outgrew the need for a respirator. Now we expect him to come up here, even at this altitude, and just need oxygen assistance.
“No one knows why he’s made such huge jumps,” she continued. “Of kids who come in as sick as Cash, 50-percent don’t survive the first week. Of those that do, 70 percent need a respirator for the rest of their lives. He has beaten some big odds. His illness that started with the flu was one percent of the one percent. It’s about the same for him to have come back this far. He beat a lot of odds to get as sick as he did and also to get that healthy.”
Roxana described Cash as “persistent.” That, she said before this life chapter, made parenting at times a challenge. “Cash is not always in the here and now. He’ll have his shirt on backwards but he’s also the type of kid to question a lot,” she explained. “He’s the type to think in big, abstract thoughts. Since he was little, he’s always asked complex questions. Just a week before this happened we had discussions about death and who sits at the top of the food chain. I remember we concluded that viruses and bacteria really were at the top because they could kill predators. That was weird in hindsight.”
Roxana said Cash endured a lot of high-risk procedures and beat the odds with every single one. “The staff at the hospital battled with him and they have a really emotional tie with him,” she explained. “No one really thought he’d make it past the first few days or weeks let alone walk out of the hospital.”

Everything but the Imam
And they took few chances when they thought he might not ever get back to Crested Butte. “We baptized him because my parents are Catholic,” Roxana said. “We brought in a Buddhist monk. Kelly Jo Clark from the Union Congregational Church prayed over him. The Reiki helped tremendously. We did everything possible to cover our bases. About the only thing we didn’t have was an Imam.”
Roxana says she and the family just always had a level of acceptance as the situation unfolded. “We didn’t do anything that anyone else wouldn’t have done,” she said. “Life presents you with unusual and extreme circumstances and you just deal. You put one foot in front of the other and handle it. Plus, I’m a little whacky. I want to know everything and am not afraid to keep asking. Craig and I are always the advocate for Cash. I’d corner doctors in the hallway for 45 minutes and try to get everything I could out of them. I’d try to get their eight years of medical school knowledge into my brain in 45 minutes. I dealt with it by informing myself. The doctors were gracious to spend many hours answering my questions. We wanted to understand the risks and make good decisions and I think the doctors appreciated that. That is sort of normal for Craig being a teacher and for me having that crazy trait. Look, we just did what we needed to do.”
But she admitted, “It has been pretty exhausting emotionally and intellectually,” she admitted.
“Cash became a kid that pushed a lot of boundaries and ultimately that could help other kids,” Roxana concluded. “After his experience, Children’s and other hospitals may change some things.”

Back to the Butte…
As for returning to Crested Butte and a sense of the normal? “I feel like we’ve been in a box. Almost an institution for four-and-a-half months,” she said. “It’s weird to think about. It’s been a different reality. It’s a little scary to come back. I mean when he gets a cold for the first time, am I going to panic? We know we have to be more careful and treat it differently and our goal is to get him back as close to 100 percent as possible.
They estimate Cash is physically at about 80-percent right now. And he’ll be on oxygen and need physical therapy and respiratory therapy every day for a while.
“His lungs were horridly bad but he’s recovering quickly,” she continued. “And I really think this community was a big part of that healing.”
Roxana and Craig heard about all the fundraisers and all the other events meant to help their son. There were prayer circles and the shamanic ceremonies. Sports teams and students raised money. Restaurants cut out part of their profits for Cash. Songs were written and blessings shared. A stream of visitors went to Denver for support. Craig was able to come back and teach the last six weeks of the school year.
“Lots of things worked to help him get through this,” said Roxana. “I told the doctors they’d have to mention the community of Crested Butte when they published their paper and talked about the case at their international conferences.”
The family hopes to be skiing together next winter with the help of the Adaptive Sports Center. While Cash has several scars and his balance isn’t 100-percent, they want to share bike rides this summer. “We want him to be a normal kid in Crested Butte. But given all he’s been through, we tease him that he better do something pretty special with his life,” said Roxana.

So for the first time since the dark days of last January, Cash is expected to come home. The plan is to arrive the day after the summer solstice next Thursday on one of the longest days of the year. Don’t be surprised to see an impromptu Crested Butte parade make its way down Elk Avenue for one of Crested Butte’s new favorite sons. By the way, that Thursday, June 21, is his dad’s birthday…and Craig knows he couldn’t get a better present.