About Us: Maddi’s Story

madison1 Madison Jane Allan was born on 23rd September 2004 at a healthy 7lb 2oz and was absolutely beautiful. The family life which we had craved had just begun.

Madison was a happy little girl who was always smiling and our lives were trouble-free and perfect.

However, Wednesday 20th July 2005 was a day which was to change our lives forever.

On taking Madison to Nursery as normal on that day, we noticed that she did not seem very well and began to be sick and looked jaundice. We took Madison straight to her GP who in turn immediately sent us to our local Hospital. At our local Hospital, they carried out a blood test and then an ultrasound scan. Following the ultrasound scan, we then had to wait for the Doctor to come and see us. However, from the look on the face of the Radiologist, we knew that something was very wrong with our precious Daughter.

That was when we received the devastating news that Madison had a very large tumour.

“Madison was referred to the Royal Manchester Children’s Hospital where she underwent various scans and also had a biopsy taken. The Doctors advised us that she had a tumour called Neuroblastoma, which is very rare and affects around 100 children in the UK every year. The tumour was also blocking the bile duct on her liver which was making her jaundice and stomach very swollen.”

The Hospital immediately started two courses of chemotherapy which unfortunately only reduced the tumour slightly, but thankfully enough to unblock the bile duct.

We were informed by the Doctors that an operation to remove the tumour was not an option as it had wrapped around her nervous system and main blood vessels.

Over the next few months, Madison slowly recovered from the chemotherapy. The tumour still remained, but fortunately did not trouble Madison and simply remained, albeit still active, for four years whilst Madison happily led the normal life of a child, attending dance classes, swimming lessons etc., whilst still having regular scans every six months.

On the 4th February 2009, I gave birth to Scarlett Olivia and our Family was complete. Madison was so happy to have a baby Sister and enjoyed helping me look after her.

madison2 However, in May 2009, Madison began to complain about severe pains in her stomach. We therefore took her back to Hospital where she underwent an ultrasound which confirmed our worst nightmare – the tumour had started to grow again.

Madison bravely started chemotherapy again in the July when she was scheduled to have 6 courses, but after the second course, a scan was taken which revealed that the tumour was not responding. The Doctors therefore decided that the next course of action was to endeavour to operate.

In November 2009, Madison was led into theatre to undergo an operation which was anticipated to last 8 to 10 hours. However, after only three hours, the operation was abandoned as to continue would be much too dangerous to Madison. She was losing too much blood due to the tumour being entangled around her main blood vessel.

In January 2010, the next course of action advised by the Doctors was radiotherapy and this was to last for four weeks.

The Doctors then decided to give Madison Retinoid Acid to help to kill off the cancer cells, but in June 2010, Madison was again in severe pain and the Doctors therefore suggested another course of chemotherapy.

Unfortunately, after the first course of chemotherapy, Madison was scanned and her condition had not changed. Madison became very ill as a result. Her weight plummeted and to our horror, she also became very withdrawn and depressed.

This is when the Doctors gave us the worst news that a Parent could ever receive – to take Madison home and for us to enjoy what time we had left with her.

However, Madison had bravely fought this dreadful disease for nearly 6 years and we were not at this point ready to just give up on her.

We then discovered a Professor in Germany, this Professor was trialling a new treatment entitled RIST Therapy and advised that he may be able to help Madison with her condition.

This treatment would not come cheap and we would have to raise funds in excess of £250,000.00 to fund the same. Fund raising therefore immediately commenced to raise funds to cover the cost of the treatment in Germany as to risk losing Madison to this horrible disease was simply not an option.

When we flew out to Germany with Madison on the 23rd August 2010, we knew that this would be her last chance. Madison underwent various scans and tests, the results of which indicated that the cancer had spread to five new areas of her body, which was an immense disappointment to us all. The Professor in Germany started treatment straight away.

We resided in Germany for ten weeks and over that time, Madison became stronger and brighter and she was eventually allowed to fly home on 23rd October 2010, where provisions were made for Madison to have treatment in the UK.

Madison’s time was then split between the UK and Germany.

Madison’s health continued to improve and she eventually returned to School to resume the day-to-day activities of a child of her age.

“In January 2011, Madison underwent further scans which revealed that, due to the treatment received in Germany, her tumour had shrunk by 2cm. This was amazing news which we felt overwhelmed at hearing.”

Indeed, Madison’s tumour had not only shrunk, but Madison was becoming stronger and stronger as each day passed.

In May 2011, Madison underwent yet more scans which unfortunately did not reveal any shrinkage in the tumour, but did show that the catecholamine levels had been reduced significantly which was a good indication that the cancer was dying!

After twelve months of RIST Therapy, the same has now finished and Madison is now due to undergo MIBG Therapy.

After the completion of the MIBG Therapy, Madison will have to return to Germany as we have been advised that they now have a trial treatment which they require Madison to undergo which is designed for tumours which are resistant to other forms of treatment.

IMG_8119-300x200Unfortunately, this treatment will last seven days a week for twelve months. However, the alternative to Madison undergoing this treatment is unthinkable and we will therefore be beside her every step of the way.

We regret to say that Madison lost her battle on Boxing day 2011.

Losing Madison is something we will never get over, the devastation her loss has caused to our family and friends is too much.

We don’t want this to happen to other children and their families, so please continue to help us raise funds in Madison’s name, to help raise awareness and fight this terrible disease.

by Samantha Allan, Madison’s Mummy