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Cost of living with Melanoma

$19,240 of $20,000 goal

Raised by 272 people in 5 months
Many of you will now be aware that I've been diagosed with stage 4 melanoma. This is the story of how it all happened and the struggles my husband Jared and I have been through.

The journey began at the end of June 2017. I had been suffering a strong headache for four days straight. I rang my twin sister Nicole to let her know and she recommended that I visit my GP believing it may be a migraine which are common in our family.

The next day I went to my GP, Dr Praba Selvendra.
She was concerned that I had pain since I had never come to see her about any in the many years I had been seeing her. She said “just to be safe, I’m going to send you for an MRI. Little did we know, our lives were about to be changed forever.

A few days later I had my MRI scan. After the scan, we were asked to wait in the general waiting area. It had been about 30 mins and we were still waiting. I was feeling so sick and my head was pounding. I asked Jared to go tell them we were going home cause all I wanted to do was go to bed.
The Centre staff took Jared away and told him that I had two nodules in my brain. He went into shock and had to ask them to explain again.  They informed him that he needed to take me to the emergency department at Sir Charles Gardner Hospital.
He then left the room and turned the corner and looked at me. The look on his face I will never forget. He sat beside me and explained the situation and we immediately made our way to the hospital.

We arrived at the emergency department and we were prioritised quickly. I was asked a lot of questions. I was shown one tumor in my brain that measured 2.2cm. It had caused so much swelling of the brain that if I had left it another 24hrs, I would likely be dead.

I then went into the high dependency ward. I stayed there for 5 days under 24 hour watch. During this time I had multiple scans done. It was revealed that the 2.2cm tumor would have to come out. I went on a hunt for the best neurosurgeon in Perth and found Prof Christopher Lind.

We scheduled the removal to be done at St John of God Hospital in Subiaco. That happened on the 21st July 2017.
The operation went well. The entire tumor was successfully removed.
Then the long dreaded wait began to find out what it was.
This time was hard. I was in the hospital for 15 days. I had 19 staples in my head and I wasn’t able to do a thing.


When I was finally home I wasn't allowed to do many everyday tasks like driving a car, cooking, lifting anything over 200g. Almost any sort of physical exertion. 

After being home for 5 days, things took a turn for the worse. I began leaking cerebral spinal fluid from the area where I had been operated on.  This involved many trips to see Prof Christopher Lind to try and fix the issue. I ended up with having nearly as many stitches as I did staples.


This did not stop the leaking. I was required to go back into hospital and get a spinal tab put in to relieve the pressure on the operated area and allow it to heal.

I was in the hospital for 9 days where I was confined to complete bed rest. I could not move without first letting a nurse know. This was the hardest of all of it. I cried so much. I felt completely helpless. For the first time, I was scared and nervous about what was happening to me.

It was also the time we found out that I had been diagonsed with melanoma, with no known primary (source).  I was told I had the Braf gene . In the words of the oncologists “it has its foot on the accelerator”. He said no one wants melanoma but lucky in the last few years there have been significant developments in treatment options.

For me, that means the combinations of two drugs that effectively buy me time. How much? No one can tell you. According to the oncologist “some people live, some people die. We don’t know why some do and some don’t”. So far I am living and responding well to the treatment so far.

I have had to give up my studies in nursing. We've had to sell our apartment to afford the cost associated with fighting or rather living with melanoma. We cannot afford to go out. Even just for simple meals. If we didn’t receive vouchers for the movies for birthdays and Christmas we wouldn’t be going out at all.

We are asking for assistance. To manage the cost of my medicines, associated MRI and PET scans and for some help with costs of living. We both appreciate any assistance you can provide.
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On behalf of Renae, it is with great sadness that I have to inform you all that Renae passed away on 5th September 2018 in the early hours of the morning. She had been fighting stage 4 melanoma for over 12 months. Her twin sister Nicole and I witnessed her last breath. She died peacefully, without pain and with the two most important people by her side.
It’s was so hard and gut wrenching watching her in her final hours, not knowing when she’d slip away, but now I feel a sense of relief that she’s now at peace but also empty, numb, devastated and lost without her.

Renae and I have had such amazing support from her friends, family and very generous strangers. I want to thank you all for your friendship, support, and kind words.

Her recent donations have gone a long way to funding her funeral which was held on the 12th September.

Renae was only 39 years old and missed her 40th birthday by a few weeks. She was fortunate enough to have much of her family fly over earlier to spend precious time with her which she really enjoyed.

Renae was happy, smiling, strong and incredibly brave to the very end.

As part of her funeral, we had put together a photo/video presentation of her life you might like to view:

https://www.youtube.com/watch?v=2WXLgEVyNMA

Thank you again for your incredible support

Kind regards,

Jared Williamson (Renae's husband)
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I had been getting regular scans over the last 12 months and the medication I've been taking seemed to be working. Each MRI scan showed improvement over the last with the tumours shrinking smaller each time.

However, on early Monday morning (30/07/2018) around 4am, I woke up with an extremely painful headache and nausea causing vomiting. My husband Jared called an ambulance and we were taken and admitted into the emergency section of Sir Charles Gardner hospital. Pain was not going away until I was administered some morphine and a CT scan was performed some time later.

An ambulance then transferred us to St John of God in Subiaco where I was moved into a private room. The next day I had a full body MRI scan.
It was revealed another large tumour has formed about 1.5cm in diameter at the back of my brain near my right ear. Plus 3 - 4 other new smaller tumours scattered around my brain.

We had a meeting with Professor Lind who was the surgeon who performed the original operation plus my oncologist Dr Clay. Professor Lind scheduled me in for an operation the very next day in the late afternoon so the largest tumour could be removed.

The operation was performed and the largest tumour was successfully removed. A few of the additional smaller tumours around the same area were also able to be removed but not all.

I was in the intensive care unit (ICU) overnight and for much of the next day before being moved into my own private room again. I suffered severe and regular nausea and vomiting.

I will be going in for another MRI scan post surgery today to see the full results of the operation. The plan now is to begin a new form of treatment called immunotherapy along side my current medication. This is designed to train my own immune system to try and fight the cancer.

This is completely devastating news as there were no signs that my treatment wasn't working. The MRI scans were being performed less frequently as the tumours had been shown to be shrinking each time. It really feels like reliving it all over again from the beginning again.

Thank you for all your continuing support.
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We have reached the target so thank you to all who have donated. All donations will still go into the account and I am grateful for all the support. Please continue to share so at the very least awareness of Melanoma is being shared.
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This is my superman. My oncologist Dr Clay. Today he told me that I am having a complete metabolic response to treatment. In general terms the treatment is working. The other tumour has shrunk to almost non existence. It’s so minuscule he said. There are no signs of the other one coming back. So that is great news today.
The plan moving forward is to continue treatment and hope that is stays working. But so far so good.
Thank you to everyone who has messaged and asked how Jared and I are.
Today is certainly one of the good days and we are going to enjoy this beautiful afternoon and celebrate the small win.
We thank everyone for the donations, love and support.
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Raised by 272 people in 5 months
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