Meg Higgs - Defying the Odds

Life is not fair. We all know that. But often some people just get dealt a terrible hand of cards and unfortunately that is the case for Meg Higgs, her Mum, Arlene Perry her Dad Jason Higgs, and their family.

The Background:

Meg can be described as a survivor. At 6 1/2 years old Meg was diagnosed with Stage IV Neuroblastoma. Neuroblastoma, is a rare type of cancer that forms in certain types of nerve tissue. It most frequently starts from one of the adrenal glands, but it can also develop in the neck, chest, abdomen, or spine.

Doctors discovered a tumour behind Meg’s heart (and against her spine) and it had spread to her bone and bone marrow. She was very unwell and a Doctor suggested the family make her comfortable, take her home and enjoy the last few months with her. The thought in Arlene's mind, however, was if she had to go out – it would be with guns blazing!

During her first battle with cancer, Meg became the first person in New Zealand to have a trial drug which was aimed at killing the cancer cells that may be left in her body (those that are not visible by a scan but are still present in the body).

This trial drug was successful and since Meg has had the treatment, many more Kiwi kids have gone on to see good results from it. So in essence, Meg put herself and her body on the line for science and for the future generations for New Zealand paediatric cancer patients.

After beating cancer, the first time around, this strong girl had been in remission for a number of years. Fast forward to Christmas Eve six and a half years later, Meg was diagnosed again with a relapse of Neuroblastoma around December 2018. Unfortunately, the family spent Christmas at Starship.

Meg who is now 16 years old, is more prone to cancers than your average person. It was not expected, however, that the same type of cancer would return. It presented like the discomfort of a wisdom tooth. After several months of investigations, it was found to be the return of a nasty tumour, this time in her jaw.

The baffling thing to the family, to Doctors, to everyone involved was the following:

Neuroblastoma is predominantly a paediatric cancer (which presents in children under 6 years old) and Meg was older than that at the time of her original diagnosis. Meg had been in remission for a long period of time (7 years) and therefore, it is unusual that after such a long period of time, that a patient would relapse.

The Facts:

However, the facts are Neuroblastoma is very aggressive and Meg is very sick and in critical condition. These are the facts:

1) Neuroblastoma has one of the lowest survival rates of all paediatric cancers and accounts for 15% of all paediatric cancer deaths.

2) The 5-year survival rate for Stage 4 Neuroblastoma is 30%.

60% of patients with Neuroblastoma will relapse. Once in relapse, the survival rate drops to less than 5%.

3) The most common treatment available for Neuroblastoma is chemotherapy, radiation, surgery and immunotherapy.

4) Common side effects of these treatment procedures can include but are not limited to, vomiting, diarrhoea, hair loss, low blood counts, compromised immune systems, hearing loss, learning defects, heart problems, intense pain, high risk of second cancers, and infertility… just to name a few.

The Current Situation:

Very often what people don’t realise is, that by having a very sick member of the family, others are just as badly affected. They become almost “secondary victims” in their “new normal”. And that is the case for Arlene, and Meg’s siblings - younger brother Charlie (14 years old) and her younger sister Finty (10 years old).

Arlene: “My love for my children is endless, as much as I want to take their pain and suffering away - I can not. What I can do is give them is my unconditional love and support. And that is what they get. I give them all the love that I have, and just pray and hope that this is enough”

Arlene is a solo mom. She is fierce, strong, determined and independent.

Arlene is a trained nurse and recently graduated with a Masters in Nursing Science. Arlene was working as a Registered Nurse at a GP Practice and loved her role and was starting to do quite well. Since Meg's relapse, Arlene has had to spend a great deal of time attending to Meg’s needs and of course she would not have it any other way. Arlene still works, in between week-long hospital stays, caring for the family and attending to Meg’s needs, so understandably the number of hours are limited.

Arlene has big dreams of her own and ultimately wants to become a Nurse Practitioner in Acute Care. For now, these dreams are on hold. She relies heavily on the single parent benefit and the small amount she earns from when she is able to work. But with three kids and Meg’s ongoing medical needs, the bills are overwhelming.

Meg: “I don’t care about the odds, I have done it once … I will do it again…. I want to live!”

Meg has been diagnosed with a relapse of Neuroblastoma. Thankfully this time it has not spread throughout her body. Relapse Neuroblastoma is not favourable for a cure so the family are hoping that she beats cancer once again.

Her current treatment involves 21-day cycles of chemotherapy. Meg and Arlene spend every third week (Monday to Friday) in Auckland. While in Auckland, they stay at the Ronald MacDonald house. Over a 5-day period, every day they go to the oncology day clinic where Meg has oral and intravenous chemotherapy.

In the near future on Meg’s 3-week cycle, she will be admitted to the hospital to receive a specialist drug treatment and require a dedicated nurse to be with her 24 hours a day. It is an intensive drug regime to receive on top of her chemotherapy. At the moment the family fear the unknown, the unknown of how she will handle the treatment and how her body will respond. Interestingly this is the same drug Meg pioneered many years ago. No longer in the trial stage, it is now well known and widely used in New Zealand.

Following the chemotherapy and specialist drug treatment, Meg will also need to have radiation treatment. This will be for at least 4-weeks which will mean at least a 5/6-week stay for them in Starship. To be expected, Meg suffers from complete exhaustion, nausea and vomiting while on chemotherapy.

Who is Meg and what does her future hold?

Meg is the most amazing person. She is positive and intelligent but best of all, she faces every hurdle with resilience. Understandably she occasionally gets upset that she can’t be a normal teenage girl and that cancer is stealing her youth, but she does not allow this to hold her back.

Meg continues to live her life to the fullest. She goes to school whenever she can, but this is becoming increasingly more difficult, especially as the year goes on and whenever Mum allows it (which is also becoming more difficult) as her health deteriorates, she even works at Dominoes.

Like any teenager, Meg has dreams for her future. She has always wanted to become a Doctor of Medicine and feels that even if this cancer puts her back a few steps, it will only equip her, in the long run, to help more people and be more understanding of what it feels like to be in their shoes. Meg is determined that just like before, she can and will overcome this too.

How can you help?

Arlene has been fighting for survival too, but in a different way - to keep the family afloat. It has reached the stage where she needs help. And this is where we are asking for YOUR support.

The family live in Marewa, Hawke’s Bay. They have two essential goals in mind:

1) Arlene needs a period of relief from paying the mortgage for a 12-month period so she can continue to support and care for Meg the best way she can. In order to do that Arlene needs $20,000.

2) Our next goal is to raise money for Arlene to renovate the bathroom. The bathroom in its current state is a possible cause of infection. Meg’s enjoyment is to be able to relax in a soothing warm bath with her candles and listen to her favourite music. Arlene will not allow her to do this at the moment as her body is prone to infection due to a compromised immune system. The bath is the biggest concern with the enamel coating peeling off and the surrounding wood rotting. Over the years the bathroom has deteriorated and is in desperate need of a complete overhaul. This involves relocating the bathroom and would cost at least $40,000. As a Mum, Arlene is doing all she can to support Meg but she can’t afford to fix the bathroom.

It’s taken the family a while to feel brave enough to ask for help from the Givealittle community. Sometimes asking for help is the hardest thing to do. However the family have been brave for so long, this is just one more thing to overcome together. We would appreciate every cent, every dollar and every kind word. Thank you.