Chase and Sadie get heartbreaking results as his cancer spreads: ‘Promise me you will try’ – IndyStar

Brad and Kelli Smith give an update on their son Chase's health. Scans this week showed more cancer growth. Indianapolis Star

IndyStar is documentingChase and Sadie Smith's lives as they settle into a new marriage and battle Chase's terminal cancer.

Sadie Smith sat outside the hospital, the sunshine streaming down,and she cried. People walked by laughing. Her world felt like it was collapsing.

It's not good, her husband, Chase Smith, had just texted her from his appointment Thursday.

The tumors already invading his body had multiplied. One near his esophagus had grown rapidly. There were new tumors on his thyroid and adrenal glands and many more in his right lung.

Chase almost never cries at appointments, said his mom Kelli Smith. But as he heard the news, tears ran down his face. When the palliative care doctor toldChaseit might betime for hospice, he cried again. So did Kelli.

Their story from the beginning: 'You don't see a love like this'

As Chase and Kellileft Riley Hospital for Children at IU Health, he went into the restroom for a long time. He emerged, his face red and swollen.On the car ride home, he was silent.

That night, Sadie turned to her husbandas they laid down to go to sleep."Do you want to talk about anything?" she asked him.

Chase Smith plays gently with the hair of his wife, Sadie, after an interview with Inside Edition by video conference at their home in Bargersville, Ind., on Monday, May 25, 2020. (Photo: Mykal McEldowney/IndyStar)

"Not really," Chase told her. "Do you?"

"I just want to know, 'Are you going to try?'" Sadie said.

Chase had made a promise to Sadie before they married April 29 when he had been giventhree to five months to live.He told her then he would never give up. He told her he never wanted to be away from this earth because that would mean losing Sadie.

"So, he is still willing to do that. Heis not giving up at all," Sadie said Friday, as Chase slept upstairs. "He's willing to try anything and everything he can."

Inside the family's Bargersville kitchen Friday afternoon, Kelli stood with the endless bottles of pills. Next to her was a notepad.

She is the one who knows all of Chase's medical history, his six-year journey with Ewing's sarcoma,and all his medications. With Chase's OK, Kelliwas adding new drugs to the mix.

He started the morning taking a diabetes pill for the first time. Cancer feeds on sugar. This drug willbe almost like putting him on a Keto diet without changing his food intake, Kelli said.

Kelli Smith talks about new medications for her son Chase at their home in Bargersville, Ind., on Friday, June 12, 2020. Since Chase's cancer diagnosis in 2014, Kelli has been the one to keep up with medications. "I'm the only one that does this and I've got to write it down in case I was in a car accident or something," Kelli said as she sorts through the medications. "Nobody would have any idea." (Photo: Mykal McEldowney/IndyStar)

Three days later, Chase will start a de-wormer, the human version. Research has shown it can help kill cancer. In three more days, he will start a cholesterol drug to help break down the cell walls so that the other drugs can get into them. And finally, three days after that, Chase willbegin taking a drug to attack the cancer stem cells.

Traditional treatment hasn't worked. And the cancer is ravaging Chase's body. No one expected it to happen so quickly. Or maybe they did, they just didn't want to think it, said Chase's dad, Brad Smith.

Young, in love and running out of time: Why Chase and Sadie's parents gave their blessing

He stayed home Thursday during Chase's appointment at Riley with Chase's sister Kaitlin. Due to COVID-19 restrictions only Kelli was allowed in the room and the family didn't expect the results they received.

"We were kind of hoping there would be no more tumors at this point," Brad said,"at least not right now."

But as Kelli Facetimed Brad whilethey met with the doctor and Brad saw Kelli sobbing and Chase silent, he turned to Kaitlin.

"I'm leaving," he said. "I'm going."

By the time he got to Riley, Chase and Kelli were out of the hospital walking toward the parking garage. Brad saw Chase's stone face. He just wanted to get home, shower, take pain medication and digest what he had just heard.

Brad knew that, but he tried to hug him. Chase didn't hug him back. Within 40 seconds of being in the car, Brad got a text from Chase that said, "I'm sorry."

Brad told him there was no need for sorry, not one bit of sorry. "I knew he just couldn't," Brad said. "He just couldn't."

Chase turned 19 on June 4, but there was no celebration.He spent his birthday at Riley trying to figure out why he was in so much pain.

After a week at the Cleveland Clinic getting radiation onhis head earlier this month, Chase's health took a turn for the worse last Thursday on his birthday. Hecould barely swallow. When he did, it wasstabbing pain and then a 45-second burn.

He stopped eating. He had a sore throat, heartburn and sores on his throat. Doctors thought he had shingles, a side effect of steroids used for the radiation.

All he could do was liein bed.

"It's been hard the last few days. Chase is just always our comic and keeping us all on our toes and he's just been stuck in bed," said Kelli."Not being able to give him any answers, not being able to give him any idea of how much longer this is going to go on to givehim any direction and hope with it, it's been really difficult."

After the medications not working and days of nothing but water, his doctor at Riley, Melissa K. Bear, told Kelli that Chase should go to Riley's emergency room. Chase can make his own medical decisions now that he's an adult and he refused.

He never wants to be admitted to a hospital again, Kelli said.

But on Thursday, he agreed to see Bear because he knew she wouldn't pressure him. And that's when he got the scans and the heartbreaking results.

Sadie will not leave Chase's side. When they got home from Riley Thursday, she laid with him inbed until he fell asleep, just as she had the week before, as he slept for days.

Every so often, she would get in her Jeep and go on a drive, just for a little bit. And then she would come back and lay with him.

Chase finally told her,"It's OK. This isn't healthy for you to liein bed like this."

After preparing and delivering dinner for the Smiths, family friend Stacie Volz visits and tells a childhood story about Chase Smith and one of her sons on Friday, June 12, 2020. She gives a hug to Sadie before leaving. Every Friday, Volz prepares dinner for the family.(Photo: Mykal McEldowney/IndyStar)

But Sadie wanted to be there.

"I know being by his side calms him and it makes me feel protected when I know he's asleep or he's feeling well," she said. "Weboth promised not to leave each other's side throughout this whole thing. We just feel protected when we're together."

When Chase got up Thursday night, he came downstairs. His family and Sadie and her parents were on the back deck.

He felt well enough to have mashed potatoes, half of a Frosty, five glasses of chocolate milk and a few bites of cucumber. He sat outside and talked, even laughed a little, said Kelli.

"We kind of had our Chaser back," said Brad. "It was therapeutic and healing. It was kind of a breath of relief."

Chase didn't get out of bed most of the day Friday. But as his familysat on the back deck again, they told stories about Chase. What a presence he is. How he always tries to protect them from his pain.

Above them hung a board etched with Chase's favorite Bible verse. Brad said, it gives them hope, even as hope fades.

"Even youths grow tired and weary,and young menstumble and fall; but those who hopein theLord will renew their strength. They will soar on wings like eagles;they will run and not grow weary,they will walk and not be faint."

Follow IndyStar sports reporter Dana Benbow on Twitter: @DanaBenbow. Reach her via email: dbenbow@indystar.com.

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Chase and Sadie get heartbreaking results as his cancer spreads: 'Promise me you will try' - IndyStar

Irish dad with rare form of cancer would have died within a week if he didn’t go to hospital – Irish Mirror

When Eoin OBrien found out he had a rare form of cancer, he was told he would have died within a week had he not gone to hospital.

Now, five years on, the dad of four is remarkably free of the disease.

Eoins life changed in May 2015 when he went to A&E with chest pains.

He was diagnosed with Hodgkins lymphoma, which causes abnormal growth of cells in the lymphatic system.

Due to fluid build-up, Eoins heart would have suffocated within days had he not been treated.

And after half a decade of pain and suffering, he is finally in remission.

The news came on his wife Karens birthday, making it all the more special for the pair and their daughters Sophie, 13, Abbie, 11, Maddie, eight, and three-year-old Emelie.

Karen said: To say that that was the best news ever would be an understatement, I would rather be told that 10 times over than even win the lotto.

Eoin was only 31 when he was diagnosed following a hospital visit after he started getting pains in his chest.

Doctors drained three-and-a-half litres of fluid from his chest and found a tumour between his lungs and heart.

After his first round of chemo didnt work, Eoin found a lump on his neck.

He was started on a higher dose of chemo which was, in his wife Karens opinion, the hardest one on him.

She explained: Eoin got the moon-face, he got the cancer look. Darkness under the skin of his eyes and that.

The pair hoped this treatment was working but were disappointed again when doctors told them it hadnt.

Two years later in 2017, when Karen was pregnant with Emelie, Eoin still wasnt responding to treatments.

He was due to go into hospital after his daughter was born for a planned stem cell transplant which was later cancelled.

The pair fought to get Eoin immunotherapy, which slowed down but didnt cure his cancer.

In 2019, he was told he could get an allogeneic stem cell transplant from a donor. Karen explained: So on the 6th of November, which we now class as Eoins re-birthday, he was given the transplant and he became so, so bad.

Eoin was at the stage where he wanted to give up. He didnt want to live anymore, he didnt want to go through it anymore.

Results of a scan in February had alarming results which left the two terrified the cancer had spread.

Thankfully, it was only an infection.

Eoin was hospitalised for six weeks and due to the coronavirus, wasnt allowed outside or to have visitors.

In May, the pair were given the news his transplant worked.

Karen said: Theres been a lot of ups and a lot of downs but were finally out the other side, so hopefully we can look forward to many, many years cancer-free.

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Irish dad with rare form of cancer would have died within a week if he didn't go to hospital - Irish Mirror

Types of cancers making people more vulnerable to Covid-19 – Nursing in Practice

Before Covid-19, many people told us that being diagnosed with cancer and going through treatment was the scariest thing that they could imagine.

Now, for the thousands of people who are facing a cancer diagnosis in the midst of a global pandemic, their new reality probably feels more frightening and isolating than ever.

The anxieties and concerns of becoming a cancer patient have not gone away theyve been made worse by this crisis. And its even more concerning to think of the vast numbers of people who have yet to be diagnosed.

These are exceptional circumstances for health and care services, which are working incredibly hard to respond to the challenges presented by Covid-19. The NHS made a vital commitment to ensuring that essential and urgent cancer treatment continued through lockdown, but its fair to say that there have been many challenges.

Hundreds of patients will have dealt with delays and changes to their treatment and NHS staff have been under huge pressure to deliver care while many doctors and nurses have themselves been unwell or in isolation.

Some people with cancer may be at a higher risk during the pandemic. According to official NHS advice1, some types of cancers and cancer treatments have been outlined as making people more vulnerable to Covid-19. This includes those who:

Are having chemotherapy or antibody treatment for cancer, including immunotherapy

Are having an intense course of radiotherapy (radical radiotherapy) for lung cancer

Are having targeted cancer treatments that can affect the immune system (such as protein kinase inhibitors or PARP inhibitors)

Have blood or bone marrow cancer (such as leukaemia, lymphoma or myeloma)

Have had a bone marrow or stem cell transplant in the past sixmonths, or are still taking immunosuppressant medicine

Are taking medicine that makes them much more likely to get infections (such as high doses of steroids or immunosuppressant medicine).

Its important to note that there are other factors that could make someone with cancer more at risk from the coronavirus.

For example, age is a key factor - in the majority of cases the most common age range for patients to be diagnosed with cancer is 59-672, and older age groups are generally more vulnerable to Covid-19.

Most of the deaths from the coronavirus have been people aged over 653. In addition, many people with cancer are also living with other health conditions that increase their risk from the virus, such as heart disease and diabetes.

It is vital that cancer does not become the forgotten C during this pandemic. We know that some people may have been nervous about contacting their GP with possible cancer symptoms or concerned about attending appointments due to fear of contracting coronavirus or concerns of adding pressure on the NHS.

Its important healthcare professionals remind anyone who is experiencing any signs or symptoms of cancer that they should contact their GP as soon as possible4. And we would urge health professionals to support those diagnosed with cancer by informing them to continue with their current treatment, care plan and attend all appointments as planned, unless the patient is specifically advised not to by their healthcare team.

Health professionals up and down the country are doing a fantastic job providing vital care. However, we acknowledge that these are challenging times. Therefore, maintaining good wellbeing is paramount and we encourage professionals to talk about their emotions with either their colleagues, friends or family.

For nurses supporting people living with cancer there are number of places you can visit for advice and to sign post cancer patients to, Check in with your local health teams for the latest coronavirus advice either via your Cancer Alliance and/or local council websites. OrMacmillan provides:

Despite the global pandemic people continue to be diagnosed with cancer, and if cancer doesnt stop than neither can we. The last few months have been incredibly difficult and demanding on nurses. However, I am personally touched by the incredible efforts shown by healthcare professionalsto help those with the coronavirus and those living with cancer.

References:

1 https://www.nhs.uk/conditions/coronavirus-covid-19/people-at-higher-risk/whos-at-higher-risk-from-coronavirus/

2 https://www.cancerresearchuk.org/health-professional/cancer-statistics/incidence/age#heading-Zero

3 https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarri...

4 https://www.cancerresearchuk.org/sites/default/files/nice_-_suspected_ca...

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Types of cancers making people more vulnerable to Covid-19 - Nursing in Practice

They Put Him Back Together Again – University of Michigan Health System News

When Greg Aikens woke up from a coma after a seven-story fall from a parking garage, he was understandably confused.

I slowly began to realize how severe the situation was, says Aikens, a 22-year-old student at the University of Michigan. I woke up eight days after the fall and it was very confusing. It was hard to tell whether the things happening around me were real or just in my head.

The accident, in October 2016, left Aikens unconscious with a frightening list of injuries: a shattered left elbow, open fractures in both tibias and fibulas in his legs, fractures in his left foot and right ankle, a severed pelvis injury, and damage to his chest, bladder and liver, among other injuries to his arteries, skin and head.

He was rushed to Michigan Medicine where he immediately went into the operating room for surgery to his intra-abdominal organs and blood vessels. He would need multiple surgeries to repair all of the damage followed by an extended stay in the Michigan Medicine Trauma Burn Center Intensive Care Unit.

It was a very complex case because of the number of injuries he had sustained and the severity of those injuries, says Jill Cherry-Bukowiec, M.D., an associate professor of surgery at Michigan Medicine and Aikens first surgeon.

The first few days of Aikens time spent at Michigan Medicine was what James Goulet, M.D., a professor of orthopaedic trauma surgery and the lead on Aikens orthopaedic procedures, called the limb- and life-saving phase.

After Cherry-Bukowiec and team performed an exploratory laparotomy, a surgery to open the abdomen and examine the abdominal organs, they were able to repair Aikens damaged gastrointestinal organs and created a temporary colostomy to be used while the organs were healing.

Next, Chandu Vemuri, M.D., an assistant professor of vascular surgery at Michigan Medicine, performed a vascular surgery in which he repaired the posterior tibial artery, the artery that carries blood down to the bottom of the leg and foot, in Aikens right calf.

That surgery was critical to saving Gregs right foot, Goulet says. Without the expertise of Dr. Vemuri and his team, we would have had to consider amputating Gregs foot.

Even though Aikens was in a coma and on a ventilator, he had experienced trauma to his head during the accident that required him to undergo intracranial pressure monitoring, a procedure where a probe is inserted through the skull to measure how much pressure is in the brain. If the pressure is too high, it can lead to serious brain and nervous system injury. Aikens results showed his brain pressure appeared fine.

Over the next few days, Aikens had multiple orthopaedic surgeries to fix the injuries in his back, legs, arm and foot.

Gregs pelvic injury was more complicated than a typical pelvic ring injury, Goulet says. The injury extended into his lower spine, which occurs almost exclusively in high-energy injuries. We used plates and screws to secure the pelvic fractures.

Goulet also says that Aikens nerve injuries were a serious concern.

The neurosurgical team coordinated with us to stabilize the spine adjacent to the pelvis and to decompress the nerve roots, he says. When you have an injury like Greg had in the lower back region, the team wont know at the time if he experienced central or peripheral nervous system injury. If he experienced a central nervous system injury, theres little chance of that being restored. Luckily, it was mainly peripheral nervous injury in his back, which meant much of his muscle function could be restored over time.

In addition to Goulet, Aikens orthopaedic surgery care team included James Carpenter, M.D., Aaron Perdue, M.D., Aidin Eslam Pour, M.D., Paul Talusan, M.D., and Jeffrey Lawton, M.D. He also had a skin graft performed by plastic surgeon Adeyiza Momoh, M.D.

Greg is the reason we do what we do, Goulet says. It speaks to how severe his injuries were that we needed to involve so many different physicians and specialties from across Michigan Medicine to make sure he received the best care possible. All of the care providers, not just physicians, are called to intervene at unscheduled and often late hours, and do this without hesitation for our patients.

Eight days after the accident and with many surgeries behind him, Aikens began to come out of his coma.

The doctors had warned us that he might not be the same when he woke up, says Linda Aikens, Gregs mother. But as soon as he opened his eyes, we knew it was still Greg. His humor started coming back over the next few days and thats when we really knew it was the same Greg.

Aikens also required so much blood over the course of his stay in the hospital that Linda makes it a goal to give blood as much as possible because she knows how much it can help those that need it.

Each surgery really brought success and life back to Greg, Linda says. The nursing care was unbelievable. And when Dr. Matthew Delano was slowly weaning him off of the ventilator and taking out staples, stitches, catheters and casts over the coming weeks, I still remember him saying to me that he wished all patients were as determined to heal as Greg.

Aikens adds, The one-on-one care from my physicians really made a difference for me in recovery.

In addition, the Aikens family found support in their community and from family friend, Kim Eagle, M.D., a cardiologist and a director of the Frankel Cardiovascular Center at Michigan Medicine.

The waiting room was constantly filled with students, friends and family sitting vigil with us through the grueling days of surgeries and the agony of the unknown, Linda says.

And she mentions support even came sometimes from where they least expected it.

My husband, Bruce, left defeated one night after a particularly brutal day and he said see you tomorrow to the valet attendant, Linda says. The attendant said that was a good thing because that meant Greg was still alive. Everyone made such an impression on us, down to the tiniest things.

After weeks in the hospital, Aikens was cleared to go home and start his recovery.

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They Put Him Back Together Again - University of Michigan Health System News

I thought it was just a rash but rare cancer now covers 90% of my skin splitting my hands and feet open – The Sun

WHEN Tony Ferreira developed a small skin rash on his lower back - he assumed it would be gone in a few days.

And given the dad-of-one, 40, had always been fit and healthy, the last thing to cross his mind was that it could be cancer.

4

However, Tony's worst fears became a reality when the rash rapidly spread across his body - causing his feet and hands to split open.

Doctors soon diagnosed the gardener, from Jersey, with a rare form of non-Hodgkin lymphoma called Sezary syndrome - which has now affected about 90 per cent of his body.

Desperate to keep her husband alive, Tony's wife Osvalda is now pleading for a stem cell donor to come forward and save his life.

She said: "We pray that a stranger will help us to continue our lives together for many years to come."

We pray that a stranger will help us to continue our lives together for many years to come

Tony's nightmare first begun in 2012, when he noticed a small rash on his lower back which did not go away.

The rash quickly developed - causing his hands and feet would split open - and Tony then noticed lumps in his groin and under his arms.

Five years on, in 2017, medics diagnosed Tony, originally from Madeira, with a rare form of non-Hodgkin lymphoma called Sezary syndrome.

The condition causes white blood cells to become cancerous and aggressively attack the skin.

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About 90 per cent of Tony's body is now affected by the rare cancer, and his best chance of survival is blood stem cell donation.

His wife is now desperately hoping a stem cell donor will come forward.

The charity DKMS is co-ordinating the worldwide search for a donor, but Tony's Portuguese heritage is making it much more difficult for him to find a match.

Tony's parents and four siblings have been checked as a potential match, but none are suitable.

In March, Tony's doctors decided to treat him with a new anti-cancer chemotherapy drug (mogamulizumab) but the trial was then delayed due to the Covid-19 pandemic.

Osvalda, who worked as a housekeeper for a care home in Jersey, had been keeping the family afloat financially, but was then advised to take temporary leave due to the risk she might contract Covid-19 and pass it on to her husband.

She said: "Tony's condition is bad enough, but for thousands of patients living with cancer in the UK, Covid-19 has delayed many treatments.

"We're not sure yet when we can begin travelling to London for treatment or what the new normal will look like.

"I long to hold Tony's hands again, without his protective gloves on.

4

What is Sezary syndrome?

Sezary syndrome is an aggressive form of cutaneous T-cell lymphoma which is a group of disorders that occur when T-cells (a type of white blood cell) become cancerous and affect the skin.

It is characterised by a widespread red rash that may cover most of the body, the presence of cancerous T cells (called Sezary cells) in the blood, and abnormally enlarged lymph nodes.

Although Sezary syndrome can affect people of all ages, it is most commonly diagnosed in adults over age 60.

The signs and symptoms of this condition can vary but may include:

Affected people may also have an increased risk of developing anotherlymphomaor other type ofcancer.

The exact cause of Sezary syndrome is currently unknown.

Source: Rare Diseases

Treatment varies based on the signs and symptoms present in each person and the severity of the condition.

"Tony has been wearing his blue plastic gloves so long now that I've almost forgotten how his hands feel without them.

"He has such strong hands and holding them would reassure me that everything is going to be all right."

Jonathan Pearce, chief executive officer at DKMS UK, said the charity had seen a 50 per cent drop in the number of people coming forward to be donors due to coronavirus.

He added: "We are hugely concerned about the impact Covid-19 is having on those who rely on a blood stem cell donor.

"While many stem cell transplants are still going ahead, the logistics around supporting blood stem cell donors to travel to hospital, and then arranging the transport of the stem cells to the transplant centre, have become much more challenging and complex.

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"There are also transplants that have been delayed, but once the pandemic is over we know there will be a backlog of patients in urgent need of an unrelated blood stem cell donor.

"Sadly though, in some of those cases there's a risk that the disease could progress further, and a transplant may no longer be possible once this is all over."

People can register for a swab kit here.

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I thought it was just a rash but rare cancer now covers 90% of my skin splitting my hands and feet open - The Sun

‘I was tired and sore and I thought I had a really bad cold’ – 9Honey

Amanda is one of the happiest people you'll ever meet. She's bright, bubbly and endlessly positive.

She's also living with blood cancer, and doctors told her it had most likely been in her system for a year before she was diagnosed in 2018.

The paediatric anesthesiologist and mother-of-two had been feeling tired, but she was living what she described as a "lovely hectic life". Her two daughters were 13 and 10 at time, so there was an easy explanation for her fatigue.

"I used to walk up the hill from Queensland Children's Hospital to the car park after work and I found myself out of breath," Amanda, 53, told 9Honey.

"I thought I was unfit, so I joined a gym."

By September that year she was feeling terrible, and during a family holiday for the school holidays she began "feeling really quite crap".

"I was tired and sore and I thought I had a really bad cold," she said.

She wasn't even able to do any of the driving back home, approximately five hours, and when they got home she went to bed.

That was a Saturday. By Sunday she was even worse, but thought it could be a repeat of a health scare she'd had a decade earlier.

"I'd had pneumonia 10 years ago and at first I didn't realise and kept on working. That was until I got so sick that I couldn't even get up for work one day," she said.

"My husband (Owen) rang the nanny and asked her to check up on me to see if I was alright. She told him, 'I can't wake her up.'"

In that instance, Owen came home and took Amanda to hospital for treatment, and she eventually recovered.

This time, she did have pneumonia again, but it wasn't from working too hard. She'd developed pneumonia because her immune system had been destroyed by a blood cancer called Multiple Myeloma.

Amanda's treating physician, Dr Ian Irving, a clinical haematologist, told 9Honey about the cancer and ways in which it is being treated. He works at the Icon Cancer Centre, Wesley and Mackay and is also the Group Medical Director of the Icon Group Board.

"It's an incurable blood cancer that develops from plasma cells, a type of white blood cell found in the bone marrow that form part of the immune system and help protect against infection," he said.

"Approximately 18,000 Australians are living with Multiple Myeloma at any given time, only half of whom will survive five years post- diagnosis."

Amanda knew her outcome was bleak after receiving her diagnosis.

"I thought, 'No I don't have it. That's something old people get, and then they die.' It really felt dismal," she said.

The mum was admitted to hospital for urgent treatment and was anaemic, although she says she still felt calm, she told 9Honey, because she and Owen, also a doctor, were used to clinical settings.

Amanda was even calm when later that night she started having trouble breathing. She mentioned it to the nurse. She didn't make a big deal about it at all.

"I told the nurse, 'I'm not breathing very well' and she checked my stats and said they weren't good," Amanda recalled.

"The ward doctor came down and did some tests. By that stage I was so tired and everyone was so lovely. When they said they were taking me to intensive care to ventilate me, I remember thinking it was a good idea because I was tired of breathing."

While she was being wheeled to ICU, hospital staff rang Owen and told him they were ventilating her because she was suffering from respiratory failure and they couldn't wait for him to arrive as her situation was critical.

"I hadn't really cottoned on that I may not wake up," she said.

"I think it was more alarming for Owen and the children because I was ventilated for two days."

Looking back, Amanda realises she was one of the lucky ones.

"I was young enough to get a stem cell transplant. If you are under 65-70 and you get Myeloma, you can get a stem cell transplant. They don't do it on older patients because they don't normally survive it."

Her treatment plan involved chemotherapy, steroids and stem cell transplants. Not all of it worked, but after two types of chemotherapy, the steroids which she says triggered ridiculous mood swings and two stem cell transplants in May and August 2019, the first of which took her six-and-a-half weeks to recover from.

Her hair fell out for the first time on Mother's Day.

Amanda hasn't yet returned to 'fully healthy', but is much better than she was when she was first diagnosed.

"There's evidence to show that exercise helps with the nausea of chemo and so I've been walking the dog and doing resistance sessions at the gym," she said.

"I used to swim in a pool but I can't now because of my low immune system. I can swim in the ocean but I'm photosensitive now and very intolerant to heat following treatment, so we go early in the morning or late in the afternoon."

The COVID-19 pandemic meant staying at home in isolation early in 2020, and remaining there. Amanda isn't sure when she'll be well enough to return to work as hospitals will expose her to too many illnesses.

"When we told the kids we tried not to make too much of big deal out of it," she said.

"I think they've done really well. Obviously it has been tough for them and we don't live near many relatives who can help us. They pitched in, cooking dinner and sorting and helping their dad out around the house."

"I think it was good for them. Now I am proud to say that I have two independent daughters who have learnt to do a lot for themselves. They will become strong, independent women."

Amanda has even enjoyed her long break from work as she's been able to spend more time at home with her children, now aged 15 and 12.

"During the 18 months I haven't worked I've been with the kids and they are teenagers so it has been nice to just be around them," she said.

"I'm not glad this happened but I have tried to morph this into something positive."

Amanda hopes that by sharing her story she raises public awareness of Multiple Myeloma.

"It is so important as it is a lot more common than people think," she said.

"It is important that more people understand the different ways that the disease presents so they can seek advice from their doctor should they experience any of the symptoms."

Amanda has been able to access a new combination of medications to keep her in remission, including some recently added to the PBS including REVLIMID (lenalidomide), bortezomib (Velcade) and dexamethasone (not new, has been around for years) (RVd).

Known as a triplet therapy, each drug in the RVd combination has a different mechanism of action to kill myeloma cells, and all work together to help fight the disease.

Amanda feels grateful to be able to access the new treatments which are working to keep her blood cancer at bay.

"It doesn't seem right that people get better access to treatment if they have more money, especially this year when many people have become unemployed due to COVID-19," she said.

Amanda had plenty of time to read during her time off from work and in between treatments. She said one book in particular helped her greatly: Curveballs by Emma Markezic who was diagnosed with aggressive breast cancer in her early thirties.

"In the book she talks about a happiness study where they followed someone who won a lot of money and someone who had suffered a spinal cord injury and would have to spend the rest of their lives in a wheelchair," Amanda recalled.

"At first, the money winner was happier and the spinal cord victim was unhappy but a year later they found their happiness score was the same. I've discovered that a lot of fighting cancer is getting your head around it and your attitude determines how you feel."

While returning to work isn't on the cards, Amanda has been training to be a Lifeline Crisis Worker.

"I got part of the way through the training when COVID hit, but I'm hoping to start again next month," she said.

Although she does hope to return to her original work as a paediatric anesthesiologist "once COVID is gone".

"You can't cure Multiple Myeloma, it's not like other cancers. I'm in remission and I take medication to keep me in remission, but you always have it.

"Sometimes it doesn't come back for 10 years, sometimes it comes back in three months. I just want to make the most out of my life and try and make a difference for someone else."

Find out more about Myeloma blood cancer by visiting the Myeloma Australia website.

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'I was tired and sore and I thought I had a really bad cold' - 9Honey