Help Save Karen's Life

In March 2020, Karen Gillingham (nee O'Donoghue) was told she had Pleomorphic Rhabdomyosarcoma, a very rare cancer that only 8 people in every 10m get. Little is known about this cancer and even less on how to successfully treat it.

Karen is only 44 years of age with 4 biological children which includes a 20yr old daughter, a 17yr old son, a 15yr old son and a 5yr old daughter and 4 step children which includes a 33yr old daughter, a 32yr old daughter, a 26yr old daughter and a 22yr old daughter. As well as this Karen has 8 grandchildren.

Karen is of Irish heritage being the Daughter of Denis and Marie O'Donoghue. Karen has a strong, supportive, loving, and close knit family with 5 siblings. Karen has an elder Sister (who lives close by) three younger Sisters (two of which live in Sydney and one of which that lives in Cork Ireland) and a younger Brother (who also lives close by). Karen was born in Killarney, Ireland and in 1982,  Denis and Marie relocated the family from Ireland to Australia, finally settling on the NSW Central Coast.

Karen was only 6 years old when she (and family) immigrated to Australia. Karen has never been back to Ireland, but has been desperate to visit her Ireland to see where she was born, catch up with extended family and, most important to her, see her Sister that she misses dearly. This year (2021) was to be the year that Karen had planned to finally return to Ireland on a much needed extended holiday and to proudly show her loving Husband, Glen Gillingham, her birthplace and introduce him to all her extended family. One of Karen's biggest wishes is to see Ireland, Killarney and all her family in Ireland. It is her biggest regret that she has not already done so.     

Since Karen's diagnosis she has had 4 surgeries, radiotherapy and chemotherapy and still this insidious disease continues to grow and devastate Karen's body. The cancer is now in Karen's left chest, liver, left thigh, right thigh and left bicep and despite all the traditional cancer treatments it continues to grow. The tumour in Karen's left chest is over 25cm in size and is pressing on her heart.

In early January 2021  Karen was told by her Oncologist that all active medical treatment was ceasing, as she was too weak to have any further chemotherapy and in any event the cancer was not responding to chemotherapy. It is chemotherapy resistive. Karen was told to get her affairs in order and prepare to die with a life expectance of 2-3weeks.

This year (2021) Karen's eldest biological daughter turns 21, her eldest son 18, her youngest son 16 and her youngest daughter 6. Karen faces the very real  prospect of missing all of these milestone birthdays and events, including missing out on seeing her children grow up, marry and have children of their own. Not to mention 8 children and 8 grandchildren that will not have a Mum or Grandmother around.

Karen's Oncologist, Radiotherapist and Surgeons have all given up on Karen, failing to even slowdown the progression of this horrible, debilitating disease. Not once did they (her Australian medical team) mention to Karen that she should seek alternate cancer treatments outside of surgery, radiotherapy and  chemotherapy.

Karen has been left  by them on her own. Left by them to die. They have failed her!

However, we (her family) have researched and researched and have found many other cancer treatments. However, none of which are supported financially (that is cost subsidised) by the Australian Government.

We/Karen, are left to find these answers on our own and to raise the necessary funds to pay for these expensive non-subsidised cancer treatments and therapies.

These alternate cancer treatments are all Doctor and Specialist supervised and prescribed, but fall outside of the approved Australian Government  funded cancer treatment regimes. Most of these treatments are used in medical jurisdictions overseas, but not here in Australia.

Because Pleomorphic Rhabdomyosarcoma is so rare, most have not been tested on this type of cancer. But, at some time or another all cancer treatments are new and need to be tested. This is what we are doing here and we might just find a cure for Pleomorphic Rhabdomyosarcoma to save many more lives.

Karen and her family have not, and will not, give up.

Karen is trialling the following non-subsidised treatments to win this battle for her and every other person that has a cancer that is not responding to surgery, radiotherapy or chemotherapy:

1. Cancer DNA and receptor testing to find drugs and drug delivery methods that will attack this form of cancer without invading non-cancerous cells.

2. Immunotherapy to train Karen's immune system to recognise her cancer as a threat and to attack it and kill it.

3. Drug repurposing, finding existing off patent drug that have cancer killing properties and identify the ones that will attack and kill her form of cancer.

4. High doses of vitamin C and other vital nutrients that will boost and repair her immune system allowing her immune system to fight the cancer.

5. CBD and THC Oil to treat pain and reduce inflammation so as her body has the capacity to repair and fight this cancer.

6. Cancer fighting and killing supplements like curcumin, green tea extract (EGCG), PSK trammune,  piperine, bicarbonate soda, etc.

7. Relaxation and energy healing treatments like Meditation, Acupuncture and Reiki. 

Karen needs your help and quickly. 2-3weeks to live is not long , these treatments are not subsidised and are costly. Immunotherapy alone could cost as much as $150,000, not to mention all the other treatments. Karen and her family do not have this kind of money.

These cancer treatments, when (if) successful are not just for Karen. Karen  and her family will tell her story far and wide, spreading the word to other cancer sufferers to try, and try and never ever give up.

Please help Karen to live, to survive to see her kids grow up.

Please help with as much as you are able.

Please help Karen and all cancer suffers that have been told by their medical team that there is no hope for them. 

This is real time cancer research with a living person. Please assist us to make this happen. Please give now ... time is limited and urgency is required.

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Karen's Journey:

Most people would agree that having a rare form of cancer and the pain associated with that cancer was enough for any one person to endure, however Karen’s journey since being diagnosed with this cancer has taken an enormous amount of strength and courage so far.

Karen’s first surgery was in March 2020. Dr Chen removed a 3.5cm tumor from her left thigh, along with a 2cm margin on most sides, thus removing a tennis ball sized amount of tissue. Pathology revealed that the margins were not clear, and Dr Chen performed a second surgery to remove more tissue. The tumor was tested to confirm that it was Pleomorphic Rhabdomyosarcoma.

Radiotherapy was recommended however, the surgery wound became infected and was painful, the loss of muscle mass was significant. During March and April the infection was treated, and the wound was left to heal before radiotherapy could commenced. A 6-week course of radiotherapy on Karen’s left thigh was scheduled for May and June 2020.

Radiotherapy commenced at the beginning of May 2020 under the watchful guidance of A/Prof Hong and by the beginning of June 2020, it was clear to Karen that something was wrong. A painful lump was forming in the surgery wound site and no one was listening or paying attention. A/Prof Hong examined the lump and informed Karen that she just needed to push through it (the pain that was) to complete the radiotherapy.

Not happy with this examination diagnosis Karen insisted on a scan which revealed a painful 12.5cm x 5cm seroma had formed in the wound site that needed to be drained under radio imaging guidance. And yes, another painful procedure.

Whilst Karen’s Oncologist A/Prof Grimison and Radiotherapist A/Prof Hong assured Karen that the seroma was nothing to be concerned about and that it would probably go away by itself, the seroma kept filling with fluid and was extremely painful. Worried that the seroma was actually something more, Karen insisted on seeing another Surgeon for a second opinion and saw A/Prof Stalley in late June 2020.

A/Prof Stalley examined Karen’s left thigh was immediately concerned that the margins of the first surgery were too small and that cancerous tissue could have been left behind. Surgery was booked for late July 2020 with to remove more tissue from Karen’s thigh and the painful seroma.

A/Prof Stalley performed the surgery and removed yet more tissue, muscle and skin leaving a large wound that needed to have a skin graft, a donor skin graft site wound and a left thigh that had a massive amount of muscle mass removed.

The new wound became infected while in hospital causing most of the skin graft to fail. Karen remained in hospital for weeks as the wound became worse. By the time she left hospital there was a gapping wound in her leg where underlying muscle and tendons could be clearly seen. Karen was sent home under the watchful eye of Community Nursing including a Wound Specialist. Painful weekly debriding of the wound was required as well as bi-weekly dressing changes. Healing was predicted to take several months.

Each new procedure brought a new level of pain that made the last pain, that seemed at the time excruciating, feel like just a pin prick in comparison.

Whilst the surgery performed by A/Prof Stalley was deemed successful (from a cancer and seroma removal point of view) scans revealed that the cancer had metastasised to Karen’s right lung. Karen was referred to yet another surgeon, Prof Yan, for her lung surgery. Wanting to have this newly found tumour removed quickly, Karen was advised by Prof Yan to wait.

Karen waited patiently while the tumour was growing inside her right lung until Prof Yan finally booked her into surgery for September 2020. One final scan one week prior to surgery was booked to determine the size and placement of the tumor just prior to surgery, and to ensure that there were no more tumours.

This scan revealed that a bigger and more dangerous tumour had formed on Karen’s left lung. Prof Yan determined that Karen’s left lung was to take priority over her right lung and surgery took place within days of the scan. Surgical resection of the right lung was scheduled for 3 weeks after the left lung and by the end of October tumours from both lungs had been removed. Both surgeries were deemed successful by Prof Yan.

The surgery on Karen’s right lung was healing nicely, however by mid November 2020, Karen’s left lung was getting increasingly painful and her breathing starting to become laboured. Afraid of Hospitals by now Karen reluctantly agreed to be taken to RPA Hospital Emergency Department when she was again in unbearable pain and extremely breathless after walking only a few meters at a time.

This time scans revealed a painful Plural Effusion had formed in the pleura surrounding Karen’s left lung. Again a radiology guided procedure was required to carefully insert a drain into Karen’s back and into the Plural Effusion to drain the built up fluid. Not content to wait for the local anaesthetic to take effect the Radiologist Doctor pushed through the process while Karen screamed in pain (after all he said he was doing Prof Yan a favour and had stayed back past his usual finish time to complete the procedure).

Over the course of the next three day 2.5ltrs of fluid was drained from Karen’s left chest cavity. This resolved, the drain was removed, and Karen was discharge home. Karen was told that there were no guarantees that the Plural Effusion would not reoccur.

One week later, in early December 2020, Karen again had increasing pain in her left chest/lung until once again it was becoming unbearable. Scans were completed and yet more scans, including a whole-body PET scan the experts, Prof Yan and Oncologist A/Prof Grimison assessed the causes.

And then A/Prof Grimison delivers the news:

Karen the Pleomorphic Rhabdomyosarcoma is back with multiple tumour metastases in your Left Chest, Liver, Right Thigh and your already radiotherapy treated Left Thigh. Surgery is no longer and option. Radiotherapy is no longer and option. The only option is Chemotherapy. I am recommending an aggressive form of Chemotherapy called VAC Chemotherapy and for your first Chemotherapy treatment to occur in the next few days … Karen, do you want Chemotherapy?

The first round of VAC Chemotherapy was deliver to Karen on 15th December 2020, with Karen seemingly having few side effects from the Chemo.

Back home again to enjoy Christmas with the family, with hopes and expectations that Chemo was going to successful and a bright 2021 lay ahead.

However, by Christmas day things had taken a turn for the worse. Pain was again increasing. Yet another scan revealed a suspected recurrence of the Plural Effusion. Back to hospital once more where Karen was immediately admitted into hospital, having been discharged only days before.

This time no drain was inserted and on 6th January 2021 Oncologist A/Prof Grimison delivered the news:

Karen, the mass in your left chest cavity is 25cm tumour. It is pressing on your heart, your ribs, and your internal organs. The tumour is what is causing you all the pain. VAC Chemotherapy has not worked, the cancer has progressed, and you are too weak to endure another round of chemotherapy. We are ceasing all active treatment and placing you on palliative care. The most likely outcome is that you are going to die. I suspect you have about 2-3weeks left to live. I am sorry.

Karen was discharged home on palliative care on 11th January 2021.

This is where the tradition Surgery, Radiotherapy and  Chemotherapy story ends and the new fight for life begins with your help to save Karen’s life!

Please assist us to make this happen. Please give now ... time is limited and urgency is required.

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Organizer and beneficiary

Glen Gillingham 
Organizer
Ravensdale NSW
Karen Gillingham 
Beneficiary
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