Cancer

The Hardest Road Back: A CURE Spotlight Feature Article | by CURE Token | Nov, 2021

CURE Token

CURE is on a mission to change global healthcare for good. What started with one man’s mission to eradicate pediatric cancer has since grown into an unstoppable movement. Along this incredible journey, the project has been producing articles designed to stop cancer being viewed as a statistic — to present real stories about real people, and to help highlight just why CURE is so important. Each week features someone different, but the impact is never any less. All of the amazing sufferers or clinicians presented in these articles are all fighting the dreadful disease in their own way, and it is our honour to share their stories with you.

This week the spotlight is on Kate Drost, a brave 15-year-old from Chicago, ILl. Her mother Lisa sat down and talked to CURE about the nightmare their family endured, which first began six years ago, when Kate was nine years old. “I remember it perfectly,” Lisa says. “It was on November 13th, 2015. It was actually Friday the thirteenth, the irony of which is not lost on us. Both my then husband Tom and I are physicians, and I was away at a medical conference in Florida at the time. Tom called me up and said that Kate was staggering around the house and couldn’t walk properly. He is a surgeon, but when it’s your own child you just don’t think straight.” A panic-stricken Lisa told her husband to take Kate straight to the closest ER (Central Dupage Hospital), while she caught the earliest flight back home.

Kate was immediately admitted after her blood work showed some anomalies. The medical team wanted to do an MRI scan, but it was fully booked, so Lisa spent the night with their daughter, trying her best to keep her calm and comfortable while enduring the agonizing wait for the machine to become free. It wasn’t until some 9 hours later that they were finally able to get access to the imager. “It was 2:30 in the morning,” recalls Lisa. “Kate went down, and they did a ninety-minute scan on her, which for a little girl is just terrifying, especially one who has never been properly sick a day in her life. I sat in the room, singing to her to keep her calm and still.” Some five hours later the attending doctor asked to speak with Lisa privately. It was at that moment he revealed the heart-breaking news that Kate had tumors all the way down her spine and that the team felt they were oncologic in nature.

For Lisa that was the moment her entire world turned upside down.

“It is still clear as a bell for me. “Tom had gone home to look after the dogs and catch up on some sleep. So on my own at 7AM on a Saturday morning, I am told that our only daughter has a deadly cancer. I just fell apart, right then and there in the hallway.”

Things happened fast after the initial news. Kate was transferred to Lurie Children’s Hospital in the city. Doctors were extremely concerned as by this point Kate had lost most of the function in both legs. A biopsy was planned for Monday, but until that point what type of cancer it was remained a mystery — as it was presenting atypically. The general consensus was that it was either some form of leukemia, or a rare form of cancer called neuroblastoma. Both Lisa and her husband knew all too well the ramifications if their daughter had the latter. “We were sitting there, praying she had leukemia,” Lisa explains. “I mean what parent prays for their child to have leukemia? But that’s what we were doing because we knew it had the better chance of survival.”

After an excruciating and emotional wait, a biopsy is finally done on Kate. However, afterwards the answers still weren’t clear, so the family was once again forced to wait while the lead oncologist spent hours calling various colleagues from around the county to try and identify what cancer they were dealing with. It was on Wednesday November 18th, five days after Kate’s initial symptoms that the answers finally came back. The oncologist told Lisa and Tom that their daughter had a very rare version of neuroblastoma and a 50% chance of surviving.

Nothing can prepare you for that kind of news,” says Lisa. “Kate is an only child. Tom and I had been fertility patients for ten years. We had been pregnant with twins and lost them ten days before they were viable. Kate then came along later naturally, and we have a beautiful child, and we are so happy…and then this. It is every parent’s worst nightmare.” Indeed, being in the medical field themselves proved to be a double-edged sword for Lisa and Tom. On the one hand they were able to comprehend everything that was happening and what they were being told, but on the other hand, they felt that they knew too much, which only served to make everything more terrifying for them.

By the end of Wednesday, Kate could no longer walk. Lisa and Tom found themselves caught in the middle of a battle between the neurosurgery team, who wanted to do immediate surgery (which could potentially paralyze Kate for life), and the oncology team who wanted to go with chemotherapy — all while their daughter’s condition was deteriorating. After consulting with multiple experts around the country, it was finally decided that Kate would start two rounds of chemotherapy the next day, followed by emergency radiotherapy on the Saturday, and finally the invasive surgery on the Sunday if there was no recovery. “It was the most nerve-wracking time ever,” says Lisa. “We got to Saturday morning, just before they were about to start the radiation, and her foot moved.”

The chemo was working.

“It was such a major thing for us. The bigger the tumors got, the more they were compressing her spinal cord. In those five days she had gone from stumbling around, to numbness in her feet, to paralysis in both legs, and finally a loss of her bowel and bladder function. Her moving her foot meant that the tumors were responding to the chemotherapy and the tumors were shrinking.” Kate continued on to do five more days of treatment and then was allowed to return home, just in time for Thanksgiving. It was at this point that Lisa started to think of how she could save Kate’s fertility (as chemotherapy has been known to cause permanent infertility). Given what she and her husband had been forced to endure for the better part of a decade while trying to conceive, she was determined that her daughter wouldn’t have to suffer the same fate. So she and Tom agreed to have Kate taken back to the same hospital where one of her ovaries was removed and frozen. “The hope is that eventually they will be able to re-implant it,” says Lisa. “Then my girl can have children down the road if she wants to do that. She has been through enough; I didn’t want her to go through that too.” Such foresight to Kate’s future stands as a remarkable testament to a mother’s all-embracing love and compassion during an already terrible time.

In the United States, there are three central routes forward when it comes to neuroblastoma treatment. The most standard of these is the Children’s Oncology Group (COG), which encompasses the largest number of facilities across the country. The other ‘big players’ are Sloan Kettering Hospital in New York and an individual, top oncologist in neuroblastoma– Giselle Sholler — based in North Carolina. Each are known to have their own methodology of treating pediatric cancers that sometimes run parallel to one another and sometimes contradict. As Kate was being treated at a COG hospital, Lisa and Tom simply wanted to get their daughter well, so chose to follow initial advice and begin long-term treatment down that route. Kate began a standard COG chemotherapy program that consisted of week in hospital receiving 5–6 rounds of treatment (which often involved 2 or 3 different types of chemo at the same time) followed by three weeks at home on rotation. “During those times when she was home with us she was so sick,” recalls Lisa. “Vomiting constantly and headaches, and you name it. During the first two weeks her hair started to fall out too. So, we had a big hair shaving party. Me and Tom, and a bunch of friends and family and neighbors — about twenty of us in total — we all got together and shaved our hair in front of Kate, so she didn’t feel so alone.”

The chemotherapy cycle lasted for six long months and was full of terrifying moments for the family. To date, Kate has now received 15 different chemotherapies. Kate got constant fevers, which was a serious situation given that she had a port directly connected to her heart, and any infection could kill her. “If she ever went above 101degrees [Fahrenheit] it was straight to the ER,” says Lisa. “The problem is that chemo knocks down your immune system and your white blood cells, so exposure to pretty much anything can trigger a fever. We were back and forth so much over those months for fevers, blood transfusions and platelet transfusions to counteract that.”

The next step for Kate was a little bit more controversial — stem cell transplants. Studies have shown that if neuroblastoma cancer patients perform two treatments back-to-back, then the odds of survival increase from 50% to 66%. Both Sloan Kettering and Dr Sholler were both outspoken against the treatment due to its potential dangers, but COG (who Kate was being treated by) was an advocate, so Lisa and Tom were left with a crisis of what advice to follow. In the end the idea of increasing the odds of their daughter’s outweighed their other concerns, so they opted to go ahead.

Stem cell treatment is as invasive as it gets. The process involves being admitted to a hospital for 3–6 weeks and then having the entire immune system killed, including every cell within the bone marrow. After there is nothing left — including the cancer — clinicians restore blood cells so that the body can start to remake them. The fear for Kate’s parents when they began this treatment was of course, that anything could have killed their daughter, because she would have literally no immune defense at all. “I have never seen anything like the hospital room,” says Lisa. “They have to make it what they call ‘stem cell clean’. Before Kate was admitted, they have a specialist team go in and clean every inch. They literally take apart the furniture and clean every single screw and fixing. There isn’t a crevice and crack left untouched — there cannot be a single molecule of exposure.” Indeed, everybody who came in the room had to be gowned and fully gloved and every time doctors came in, they would have to use a brand-new stethoscope. One of the brutal chemotherapies that Kate was subjected to comes out through the skin and burns, which meant that every six hours without fail she had to be carefully bathed by her parents (avoiding the chemical tubes and lines attached to her). While this was happening, nurses would strip her bed and bleach it all, before redressing. Finally, a hazmat team would enter to clean the bathtub to a relentless standard. “It was pure hell on earth that whole experience, but you just do it because it’s your child and we would have done anything.”

The family were overjoyed when Kate hit the required white blood count necessary for the treatment to be deemed successful after just three weeks. At this point Kate was allowed to leave hospital to stay in the Ronald McDonald charity house, situated just five blocks from the hospital; once she hit a few more specific markers the family was finally allowed to return home just in time for Mother’s Day weekend — a nice silver lining in an otherwise dark period. However even once home, everything had to be carefully monitored and checked and a strict routine followed. “Kate wasn’t even allowed fresh vegetables,” explains Lisa. “Just in case there was any mold or bacteria on them. Everything had to be cooked. She couldn’t have anything from a restaurant either, no ice in her drinks — because there could be contaminants in them.

At this point Lisa had given up her job almost entirely so that she could care for her daughter full-time. At the time, she and Kate’s father had their own private practice together, and he continued to work while she stayed with Kate. Lisa would stay three nights in a row and then on the fourth she would switch places with Tom, and he would take over so she could go home and sleep. “Because when you’re down there you don’t rest at all. There are nurses in and out all times of the day, checking and doing vitals and changing fluids, and of course there are the machine noises too. One night I remember the IV pump alone alarmed seventeen times, from eleven PM to 7AM, and it’s loud. You’re just on high alert too, because you’re in a permanent state of stress and worry and hypervigilance. I would be jumping out of bed every time it sounded, because you never know if something’s going wrong. So, when I got home and fell asleep it would be for around fourteen hours straight, because you are beyond exhausted, it’s indescribable. But I know that whatever we were going through, for Kate it was so much worse.”

Kate did a second stem cell transplant treatment and then went onto seventeen rounds of radiation, and then onto immunotherapy, which was a cocktail of new medications. In all this next round of treatment took just over a year, and at the end of it, Kate was completely cancer free. It was a massive turn-around considering that not only had Lisa’s daughter had the spine tumors, but her bone marrow had been 95% cancer cells too. The family was able to track Kate’s steady progress and recovery up to the hallowed ‘all-clear’ due to the constant three-month bone marrow biopsies and full body scans, with each improvement a small victory.

At this point Lisa found herself at cross-roads. “Traditional medicine states that at this point you’re done, go home. But her father and I said no, we are not done. We want to make sure that this is not coming back.” So, through a parent’s page on Facebook which solely focuses on neuroblastoma in children, Lisa found out about two trials that were going on in the US to help prevent relapse. It turned out that one was at Sloan Kettering and the other was at Dr Shollers. After weighing their options, the parents decided to enroll Kate at the trial taking place in New York. Before she was accepted for the trial, the hospital wanted Kate to take part in two more rounds of targeted immunotherapy.

“Their version of immunotherapy was just awful,” recalls Lisa. “They inject a type of drug that attaches to a particular type of GD2 receptor on the cells, which happens to be on neuroblastoma cells. The problem is that it is also on nerve endings.” Unfortunately, the drug is unable to distinguish between the two, so attacks both, leading to excruciating pain. Even dosing Kate with morphine while the drug was being infused wasn’t enough to dull the agony she was forced to endure — she screamed the treatments while her mother lay, holding her.

They did this three times a week for two weeks.

After this intense period, Kate was finally able to begin the trial. Specifically, it was a vaccine that the hospital had developed to help prevent relapse, which they injected — and Kate described at the time as having ‘hot bacon grease under her skin.’ “She would scream and then she would get a welt about six inches in diameter that would last two or three days. But believe it or not, compared to everything else the brave girl had been through, it was actually pretty easy-going.” Over the course of a year Lisa and Kate flew over to New York to have the regular vaccine treatments until they had completed the course.

At this point Kate was still clear of cancer, so Lisa and Tom decided to move on to the treatment with Dr Sholler, to further prevent relapse — (neuroblastoma is a notoriously aggressive cancer famous for returning after remission). This time it was an oral pill, which was far less invasive in terms of symptoms than anything Kate had been forced to endure since it had begun. Meanwhile, Lisa and Tom were constantly meeting with doctors to go over their daughter’s scans and check for relapse.

On 24th October 2018 — Six months into the second trial, the cancer returned.

An extract from the achingly emotional post taken from Kate’s Crusaders (the Facebook page Lisa created to share collective updates to all of their friends and family) shows the hardship that Kate and her parents were forced to endure once again, but the sheer determination that came with it:

‘Marianne Williamson says all emotions, and therefore all actions born of those emotions, come down to either love or fear. You either act out of love or you act out of fear. It’s so easy right now to go to fear. It’s strong. It envelops you. But the focus now cannot be fear, it must be our love for Kate. That love gives us the strength and courage we need to see her through this beast again. And we will.

An image keeps recurring this morning. Open the closet, put on the armor, sharpen the sword.

Kate Will Live. She will.’

Fortunately, the neuroblastoma only returned on a small part of Kate’s spine and wasn’t present elsewhere in her body. “It was a case of deep breath, here we go again,” says Lisa. This time around Sloan Kettering hospital arranged two rounds of chemotherapy as well as radiation to the area, of which Kate underwent twelve sessions — this was followed by seven rounds of the immunotherapy medication injections again. It took over another year of treatment this way for Kate to become cancer free once again. At this point the hospital carried on doing the vaccination shots another seven times.

The cost implications for treatment were also vast. For example, Kate’s medical bills for 2016 alone were $3.2 million dollars. “It’s almost like Monopoly money,” says Lisa. “When Kate did the stem cell treatments, the pharmacy bill alone for just the treatment itself was four-hundred and eighty-thousand dollars, and she did two of them. I haven’t tallied it lately, but if I was a gambling woman, I would say that she is probably around the six-million-dollar mark. It’s so much you can’t even register it.”

So how did they manage to pay for it?

During the first year of Kate’s sickness the Drost’s had a Health Maintenance Organisation (HMO) medical insurance that covered the bills, but it required authorization from a primary care doctor every time they wanted to do anything and was extremely prohibitive. “The second year they dropped us — shocker,” recalls Lisa. The Drosts were then forced to get another insurance type, known as a Preferred Provider Organization (PPO) plan. This covered everything that Kate needed, but came coupled with an extremely high deductible — the amount payable by the customer before the insurer will cover the remainder.

“There is always a fight too,” recalls Lisa. “For example, Kate lost her hearing from the chemotherapy, so she now has to wear bilateral hearing aids. The health insurance only pays for one visit per year, but sometimes she has to go two or three times because there is a problem with the hearing aid, or they need to adjust it for some reason — and the insurance refuses to pay for it. They also didn’t want to pay for the medication she was on, which costs over twelve thousand dollars a month, so there was a huge battle with that. It’s a full-time job arguing with them, and it’s just exhausting.”

Kate completed the final stage of the vaccine trial in late 2020 and is thankfully still cancer free. She now scans every three months and has a targeted medication, which is so experimental no one knows for sure if it’s even working, but the side-effects are unusually minimal, so Lisa is happy for Kate to continue taking it. The pair still travel to New York every three months (in total to date, Lisa and Kate have visited New York for treatment 27 times). “These are the other costs you have to consider. Insurance doesn’t pay for the flights, the hotel, or your food. However, I do understand that it’s a luxury that we are even able to take Kate to New York. I know that some people have no choice but to stay where they are and receive the limited care they have, it’s a real problem in this country.”

Jacob Beckley — founder of CURE — and his wife Rafaela, first found out about Kate when they listened to Lisa speak at an event for another pediatric cancer charity called Super Jake (who had donated $2,000 to help pay for costs when Kate had first become sick). The three met face-to-face afterwards and Jacob revealed how he was doing his mission to row across Lake Michigan (which he did to raise money for pediatric cancer). From this point onwards the three became like family — even to the point that when Lisa needed to take Kate for treatment to New York during the height of the global pandemic and they couldn’t fly — that Jacob and Rafaela drove the pair in their RV all the way from Chicago and back again.

“I believe so much in CURE and what Jacob is doing,” says Lisa. “He is the kindest, most generous man, and he genuinely wants to change the world.” Indeed, Lisa was over the moon when the project donated $15,000 to Sloan Kettering’s pediatric cancer research department on behalf of Kate. “It was just so wonderful, and we were all so overjoyed. I do think that Jacob will achieve everything he sets out to do, because with Rafaela at his side and the amazing guys over at CURE helping to realize his vision, there’s nothing he can’t do.”

So how is Kate right now and what is she like now that she’s primarily through the treatment? “She’s scary smart,” says Lisa with a laugh. “The year when she was first diagnosed alone, she had read three-hundred and ninety-six books! She’s sweet, stubborn, sassy and sarcastic, and she is the most wonderful person I have ever met in my life.”

Although Kate’s version of Neuroblastoma was rare (690 cases per anum) childhood cancer in general is depressingly common — with over 400,000 new cases being reported world-wide per year — and drastically underfunded by the government. Many children sadly succumb to the disease when they could have been saved if given access to more effective treatment like Kate. This is why what CURE is attempting to do is so important and could potentially lead to many more children being saved, while providing a gateway to more treatments and cures becoming available for all.

Now that is a cause worth investing in.

If you want to find out more about CURE token and how you can invest, visit www.curetoken.net or join their telegram at https://t.me/CureTokenV2

This article was written by Stuart Meczes. Please note that Stuart is not a financial advisor and nothing written in this article should be taken as financial advice.


Source link

Related Articles

Leave a Reply

Back to top button