Help save Madi - ACC Warrior

I apologise up front.

This is a long and difficult read. However, to give you an idea of what our amazing, fun-loving and inspirational 20-year-old daughter has been through over the last few years can’t be summarized in a few sentences.

Thank you for reading.

In June 2023, after multiple hospital visits, GP appointments and A&E visits a large (15cm) tumour was found which had completely engulfed Madi’s left Kidney and Adrenal Gland. It was at this time the lives of all our family changed forever. All our plans, individually and as a family, changed, including Madi’s plan to study Medicine.

Over the preceding 2 years Madi had received several misdiagnoses such as kidney infections, heart issues, depression and anxiety.

After further tests, Madi was diagnosed with ACC (Adrenocortical Carcinoma). ACC is a very aggressive cancer and seen in just 1 in a million people, and just 1 in 3 million young people.

In September (2023) Madi had surgery, lasting 7 hours, to remove the tumour, the left kidney and the left adrenal gland. To complicate matters further, the tumour had also grown into the IVC (the main vein returning blood to the heart). This vein had to be opened to remove this part of the tumour - a very high-risk procedure. Madi required 6 units of blood (our bodies only have 10 units normally) and 3 units of plasma due to the excessive blood loss. As you can imagine, removing a 15cm tumour isn’t done using keyhole surgery. Madi had a cut from her breastbone to below her belly button and then a horizontal cut halfway around her tummy.

Madi had a very tough recovery due to unexpected complications with the abdominal and chest drains placed during surgery. Throughout this time, Madi never once complained, never once said “why me?” and always kept smiling and being positive and optimistic. She remained the happiest person we’ve ever known.

By the middle of October, Madi was able to carry out some regular daily functions like getting dressed, having a shower on her own and even going on short walks.

Unfortunately, her progress was halted in November. During a planned visit to the hospital to get some abdominal fluid removed (a post-surgical complication) Madi said she felt unwell. Madi’s condition declined rapidly and within a few hours she was in a coma and fighting for her life with Septic shock. Madi was rushed to theatre around midnight to see if anything had been missed during the original surgery. Within 48 hours of walking into the hospital Madi had to have her heart restarted 3 times and went into multiple organ failure. We were twice told that she may not survive. The doctors were struggling to maintain the level of life support her body was requiring. Her fingers and toes started to turn black as her body was shutting down. Again, Madi remained positive and still lit up the room with her amazing smile. Madi’s memory of this period is very patchy (due to the drugs) but she does remember the electric shocks required to restart her heart.

Miraculously, Madi defied the odds and her body started to recover. Her remaining kidney started to work, her heart and breathing needed less assistance and her body started to function again. A whole month after walking into hospital for what should have been a straightforward procedure, Madi walked out again, just in time for Christmas at home.

Once again, Madi showed incredible courage and determination over the next couple of months to build up her strength. Just when we thought Madi’s luck was changing and that she was going to have some kind of “normal” life we were told that the cancer had returned. Multiple tumours were found in her liver, a single tumour in her abdomen and some small spots in her lungs.

In February, her Oncologist told her that the cancer could no longer be cured and that it could only be slowed down using an aggressive, triple Chemotherapy combination. Madi was given 15-18 months to live. Once again, our world was destroyed.

After a few days of receiving this news, we all decided that we weren’t willing to accept it. Our research showed that other treatments were available in other countries. The NHS provides evidence-based medicine and treatments. Unfortunately, because ACC is so rare there are only two clinically proven treatments (and even these have unconvincing results). UK Patients with ACC are initially given a treatment which was first used in the 1960’s. If that doesn’t work, patients are then given a treatment which was first used in the 1990’s. There are no new treatment options in the UK.

Our persistent research led us to an ACC specialist in USA, working at the National Institute of Health (NIH), Maryland. The NIH receives around $48 billion each year for research from the American government. After several TEAMS calls with their doctors and surgeons, they want to help Madi. They want to save her life. They want her to fulfil her dreams.

This brings us to why we are asking for your help.

Madi has been offered surgery to remove the abdominal tumour and all the liver tumours. The surgeon is not concerned about the lung spots at this moment but will treat those at a later date if needed. This may save Madi’s life.

The money raised will cover all the expenses to allow us to take Madi to America for this initial surgery and any additional follow-up visits / treatment required.

*The ‘GoFundMe’ Customer Manager contacted us and advised us to raise the target due to Madi needing additional visits/treatment in the future. It is better to raise the additional funds now, as a single fundraiser, rather than having to set another one up later on.

Any funds that aren’t required for Madi’s treatment and care will be donated to an ACC charity to ongoing support clinical research into this terrible cancer.

Again, thank you for reading.