Finding Treatment for DSRCT

Helping this beautiful mother overcome desmoplastic small round cell sarcoma

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If Hayley’s treatment continues to be successful, it could create a viable treatment option for a very rare cancer diagnosis for which Western medicine only allows a few years of survival.

An Australian Woman’s search for hope and a chance of life in the face of a terminal diagnosis during Covid 19 onset.

In February of 2020, Hayley Buchanan was diagnosed with a rare type of cancer called Desmoplastic Small Round Cell Tumours (DSRCT). Fewer than 200 cases have been reported of such a cancer. In addition to that very unlikely diagnosis, having DSRCT as a woman is four times as rare as men being diagnosed; DSRCT is normally found amongst males aged 10 – 30. As Hayley puts it, “I’m a rare breed!”

Hayley first went for an appointment after finding a small, hernia-like umbilical lump. After an inconclusive scan, a second opinion months later revealed multiple malignant tumours spread throughout her abdominal soft tissue.

Because so few people have DSRCT, only a small amount of information on treatment results is available. While researchers are looking for treatments to improve the odds, currently DSRCT has only a 15 percent five-year survival rate. Her Australian Oncologist told her that they could offer chemotherapy but estimated it would only extend her life three to four months and went on to start her palliative care referral. Sadly, the surgeons deemed her inoperable due to the extent of her metastasis.

Cancer journey DSRCT

Hayley is an energetic and joyful thirty-eight-year-old Queensland resident. She is an adventurer, a mother, and a valued part of her community.

She started her own business in 2013 – selling local produce, health foods, and crafty things. It was a “Community Sanctuary”  – a place to come to be nourished with good food, warm service, workshops, and talks. Hayley is passionate about community & a balanced, healthy environment for everyone to live in. She brought people together and created platforms for people to grow and share. 

Originally from Melbourne, she and her six-year-old daughter have called the Sunshine Coast Hinterland home for the past three years. She loves to sing, share a good joke, banana-date-cacao smoothies, and nature days with friends and family.

“Being given a terminal diagnosis is dreadfully shocking… there are no words to describe those early days,”

She and her family, based in Melbourne, were not willing to accept the grim future their medical experts foretold for them: a life without their daughter and sister, and a mother taken away from Hayley’s six-year-old daughter, Zenith. The Buchanan’s felt they had no choice but to seek out alternative cancer treatments that would at least offer a chance of hope at life beyond the next five years.

It was obvious that the times before her would be difficult. But of course, Hayley had no idea an international pandemic was right around the corner, soon to close all borders, and increase the difficulties involved in seeking medical care for a vulnerably ill person.

“We tried different alternatives until I heard about Verita Life Clinic in Thailand.”

Her next months would eventually result in her becoming the first medical tourist permitted back into the country of Thailand following coronavirus border closure. Her journey to receive treatment was, and continues to be, an uphill battle in the new and swiftly-changing world of coronavirus-mandated restrictions. In her words, the fact that she made it there “was nothing short of a miracle”.

Verita Life Clinic Thailand

Getting To Thailand for Treatment at Verita Life Clinic

Four months later, Thailand announced that its borders would be open to medical tourists from the 1st of July, 2020.

“As you can imagine, I applied swiftly to leave Australia with Home Affairs,” says Hayley. “I set about meeting all the requirements to travel to Thailand, and there were a lot!” Hayley writes these memories from the Verita Life Clinic facilities in Thailand. “Getting out of Australia and into Thailand with declining health was worrying and stressful. It required faith and courage.”

Hayley seemingly had notice of a successful application from the Royal Thai consulate in application to enter the kingdom. She had three days before her flight. She packed, updated her CT scans, booked travel insurance with covid 19 cover and a two-week hospital quarantine stay in Thailand.

“It was the Friday before the flight; I was due to depart on Sunday. I was out doing last-minute travel shopping with Mum, and I got a call from the Royal Thai Embassy informing me that I do not have a certificate of entry to Thailand and that I could not fly.”

Hayley was shattered. She had already mentally prepared her child that she would be going and had thought that she had adhered to every requirement the Thai government had requested. While she had applied for her certificate of entry, she had not realised that it would take 10-15 days to receive it. “Looking back, I was so lost in this new, evolving, Covid-19 system that had no sure guidelines and that was changing daily.”

Hayley was advised she would have to wait for a Thai citizens repatriation flight in another 10 day’s time, and hope that there would be a seat on it for her. She was also advised that, in that 10 day period, Hayley would have to obtain a letter for the Royal Thai Embassy with an Australian hospital letterhead stating the real urgency of her reason to travel and that her condition was considered terminal. This, too, was a new requirement, and would not have been necessary prior to the pandemic.

Hayley Buchanan gofundme

Hayley had hit another roadblock, and with an accompanying deadline. Her two Oncologists in Australia refused to write this covid related letter, essentially using this very new and changing covid landscape to their professional advantage, denying her of medical freedom that prior to June 2020 hundreds of Aussies have had. Hayley’s Oncologists do not support her treatment pathway, namely low dose chemotherapy, despite there being no curative option for her in Australia and much evidence through published studies and trials using these integrative protocols overseas with great success, many of those success stories being terminally diagnosed cancer survivors living amongst us in Australia.

Coronavirus border closures between Melbourne and Sydney presented another logistical hurdle for Hayley being able to board her final flight at leaving the country from Sydney. “In pre covid times,” she reflects, “all these obstacles would have made me feel this was not the right path, but I just had to keep reminding myself that these constant tests of faith were just Covid-related,” hence she journeyed on continuing to gracefully rise to each challenge.

The coronavirus swab test also presented a challenge in achieving her ‘fit-to-fly’ medical certification, which was a mandatory requirement. The test needed to be confirmed negative 72 hours prior to the flight, which proved difficult with the time constraints in the over-stressed medical testing stations of Melbourne. “Half of Melbourne was getting tested, whole suburbs and commission towers were being tested, it was hectic!” Hayley reflects on a very unstable time. In addition, Hayley was told she would not be able to obtain a free test for coronavirus if she did not display the symptoms; and would possibly have a symptom she could say she had, she jokingly asked ” what’s on offer?”, the reply being a runny nose, cough, fever, etc, she opted for a runny nose as it seemed the least incriminating…. Hayley did not have coronavirus; however, receiving the results of that test still equated to a life-or-death situation, now that’s one to ponder…

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However, after the test and in trying to seek a doctor at the Emergency Department of a local hospital who might be able to write the letter required of the Royal Thai Embassy, Hayley was stopped by a nurse who was upset at her being there after getting a coronavirus test. Though she tried to explain that she was getting the test for a fit-to-fly certification and not because she was symptomatic, the nurse kept her in a waiting room for an hour before a doctor came to speak with her. After another wait, the doctor declined to write the letter as well. Hayley left the hospital “with her head hung low” to finally explain to her mother where she had been, who had been waiting anxiously in the car. In the time of a worldwide pandemic with many lives at risk, the Australian medical system struggled to take into account the needs of one person uniquely and severely at risk. All in all, the day of the test proved to be a very low point.

At the final hour through much stress and critical thinking Hayley was able to find a doctor she had presented too at a hospital months earlier who was familiar with her case, realising the desperation of her situation agreed to issue her the letter acceptable to the Thai Embassy, essentially saving her life in a way.

She received her letter Wednesday, four days before the repatriation flight, and received her final certificate of entry on the Friday and finally her visa, just two days before take off.

On the day of departure, Hayley hugged her Brother and Sister who had with such care, driven her from Melbourne to Sydney, they said a understandably very emotional goodbye and boarded the the airport bus. Even then, the Thai requirements for coronavirus precautions were still changing, as she turned her phone on that early morning airport bound: she had five missed calls from her Doctor in Thailand, saying she was now required to quarantine in a hot l and not a hospital. Only when her plane finally started to move down the runway could Hayley finally take a breath, knowing that this was only the beginning of a long journey.

Hayley was the first medical tourist permitted back into Thailand after the coronavirus border closure, arriving on the 19th of July, 2020

Her condition still declining, she settled into a two-week quarantine with no treatment.

 

Treatment at Verita Life Clinic – Bangkok

At Week 11 of treatment at the Verita Life Clinic, Hayley had a 30-50% reduction in tumour bulk, with some lesions and tumours dissolving completely. The impact of this result is not lost on her or her family; it feels like a miracle to them. 

“Knowing how aggressive this cancer can be, the plan was that until I’m either cancer-free or with such little tumour load that surgery is possible, I need to stay in Thailand and continue treatment, mainly to access the low-dose chemotherapy which has not been accessible to me in Australia. The combination of treatments at the clinic work synergistically, targeting the fast dividing cancer cells and also the slow dividing cancer stem cells, as well as supporting the immune system to function optimally with minimal to no long term side effects. It’s intense in a balanced way, just like me” Hayley writes. 

If not for COVID and travel restrictions, Hayley could have the option to return to Australia to have a break between treatments. However with the mandated two-week quarantine in both countries, and long application processes this was simply not an option.  The only available return flights are repatriation flights that permit 32 people per trip. Hayley worriedly speaks of the queue to get on such a flight, meanwhile her parents continue to send updates and videos of her daughter, Zenith.

 

The Cost of Treatment

To date, Hayley’s treatments in Australia and Thailand have cost one hundred and fifty thousand dollars. There is a chance that her treatment may need to continue for several years. A personal GoFundMe campaign raised fifty thousand dollars via family and friends, the rest was self-funded with help from close family. As the necessity for treatment continues she and her family have realised they need to seek support from further afield. DSRCT is an extremely fast-growing and aggressive cancer; it is essential treatment can continue until the cancer is in remission.

Hayley recently celebrated her 39th birthday at Verita Life Clinic, masked doctors and staff surprised her with an orange almond cake and flowers sent by her adoring family. Hayley is all too aware that anything could happen by the time of her next birthday. However, with this level of caring support, her tailored treatment plan, and financial support from the wider community, Hayley and her family have a strong faith that within 5 years they will put the cancer behind them.

If you would like to support Hayley on her healing journey please donate to her GoFundMe campaign every little bit helps!

Hayley will definitely pay it forward in her very long and healthy life, with her very kind generous heart.

 

 

Back in Australia

After four months in Bangkok having lifesaving treatment at Verita Life Clinic Hayley is finally home. 

Her cancer journey will not stop now she is back in Australia.

Initially hoping she would be able to have surgery to take the final tumors out, she found that her surgeon was worried there may be cancer still floating around in her lymph nodes. A decision was made to be on the safe side, and she was to continue treatment here.

Having seen the good results that were achieved in Thailand, she was now approved to continue her low-dose chemotherapy and integrative treatments here in Australia.

Once the surgeon is happy the lymph nodes are clear, she will head back to Sydney for surgery.

Hayley’s Instagram Vlog

Hayley has also been documenting her journey via an Instagram vlog for others with DSRCT. 

Healing journey