This was written quite a long time ago and before mobile phones had cameras! Even so, I have decided to leave it just as it is………….

Reyanna was born on 1st May 1994 to Marie and Michael. She has an older sister called Demie.

At the beginning of 1999 Reyanna, my granddaughter, started to complain that her back hurt and she was having difficulty walking. She was admitted to our local hospital where numerous tests were carried out – mainly for an arthritic condition – which we thought would be the most likely diagnosis. These tests proved negative and then we were told that it was possibly TB.

In February she was transferred to Great Ormond Street hospital for further tests. After many x-rays, scans and blood tests had been carried out our worst fears were confirmed when we were given an appointment with an oncologist. Reyanna was diagnosed as having Neuroblastoma and the prognosis wasn’t good. Neuroblastoma has four major stages, the most serious being stage 4, the type Reyanna has. This means that cells from the primary tumour in her abdomen have spread and x-rays show that it is in her bones and bone marrow. We were told that she would need seven sessions of chemotherapy to shrink the tumour in her abdomen before having an operation to remove it.

To administer the chemo Reyanna has had a Hickman line fitted into her chest and through this she can be given all her medication.

Reyanna lost her hair quite early in her treatment and although she was upset at first it now doesn’t bother her.

After her third dose of chemotherapy she contracted an infection in her ‘line’. She had to go to our local hospital for 3 – 4 hours every evening for 12 days but even with the large doses of antibiotics she was given the infection didn’t clear and the ‘line’ had to be removed. When the infection was finally cleared another ‘line’ was inserted into the jugular vein.

One of the major problems for Reyanna is her low blood count. This makes her prone to infections and she frequently needs blood transfusions.

In spite of all this Reyanna has remained a cheerful and loving little girl who rarely complains about the vast changes this illness has made to her life.

She is an avid Spice Girls fan and her and Demie love to sing along to their songs.

In July Reyanna completed her seventh session of chemotherapy. The last one was delayed by a few days so that she could be a bridesmaid with Demie at her auntie Dena’s wedding to Joe. A couple of years earlier she was bridesmaid to another auntie, Heidi, when she married Julian.

At first she was very tired but once at the reception she had us running around after her and managed to keep on the dance floor all evening, longer than most of us!

On August 11th Reyanna had an operation to remove the abdominal tumour. This was only partially successful as the cancer was still active in her body which meant that she would need further ‘high dose’ chemotherapy. This treatment lowers the blood count for a long time which would make her prone to serious infections.

To shorten this period when the blood count is so low Reyanna will be having an autologous bone marrow graft. This means that Reyanna’s bone marrow will be removed and re-infused after the chemotherapy. This will involve a long stay in hospital, at least 10 weeks, with much of it spent in isolation.

It is proving to be an extremely difficult and emotional time for the family and we all have different ways of coping. Mine is by writing this web diary and by raising funds for the Neuroblastoma Society. It is good to have something to focus on but it is a distressing time for her parents.

Raising funds for the Neuroblastoma Society has only been possible with the help of friends, family and colleagues. We have held raffles, fun runs and a disco. One of the greatest personal achievements was the parachute jumps taken by Reyanna’s aunties, Dena & Heidi. They raised a much needed £2500.

The biggest event was a ‘fun day’ organised by the kind staff at our ‘local pub’. They have raised enough money to send Reyanna to Disneyland when she is in remission. It was a lovely day, with events organised by many different people, including a lot of people we had never met before who just wanted to help. We all enjoyed it but it was one of Reyanna’s ‘poorly’ days. It was upsetting to see her so ill. All of the money raised through these events has been donated to the Neuroblastoma Society (www.nsoc.co.uk)

September – Reyanna was back in hospital for more chemotherapy. As she is underweight she has been fitted with a feeding tube so that she can be fed overnight. Her doctors are unhappy with her weight loss and will be carrying out some more tests and a bone scan.

October – Reyanna has an infection at the moment and is having to go to hospital for antibiotics and an overnight feed. She is still being remarkably brave. She always manages to keep us entertained on visits to the hospital. The staff are wonderful and Reyanna loves to play at ‘nurses’.

Monday 18 – Reyanna will be going to the Royal Marsden Hospital to be prepared for the harvesting of her stem cells for the autologous bone marrow graft. We hope that this is the last major treatment she will need.

October 19 – Last night we were disappointed to be told that Reyanna’s bone scan was not clear and the next course of treatment would have to be decided.

October 22 – Meeting at Great Ormond Street. Today’s news was not what we had wanted to hear. It not only confirmed that the cancer was still there but that more tumours had been found. The fact that the cancer had returned meant that it was now immune to the chemotherapy and if not treated would eventually return to the bone marrow. It was decided that the way forward would be to try radiotherapy. Reyanna has to have a mIBG scan to ascertain whether this treatment would be suitable. If the doctors decide to go ahead she will go into hospital at the beginning of December where she will be isolated in a lead protected room for 5-7 days. Her parents would not be able to touch her or comfort her because of the high doses or radiotherapy used. It is a heart-breaking thought.

November 26 – Today we received the news we were dreading. Doctors have decided that radiotherapy is not suitable for Reyanna and that her cancer is incurable. Although we knew that this could happen we had hoped and prayed that a cure would be found. Reyanna will be taking a drug called etoposide which is a form of chemotherapy that can be taken in capsule form at home and will keep her as well as possible. Our main concern is that she stays the happy little girl she has always been.

Christmas 1999

It is impossible to come to terms with what is happening to Reyanna. She is eating well and looking better than she has done for quite a while.

She couldn’t wait to open her presents on Christmas Day and the look of joy on her face was a delight. It was a wonderful day shared by the whole family.

Reyanna was ill with frequent infections after Christmas and was taken into hospital at the beginning of May. Her condition didn’t improve and she was put on to a life support machine. We talked to her and played music hoping that she could still hear us. Sadly Michael and Marie were told that there was no hope and the machine should be switched off. The following day was Demie’s birthday so it was decided that it would be unfair on her to have such a sad reminder every year. Two days later, Reyanna passed away peacefully in her parent’s arms. I can honestly say that this was the saddest day of my life, not only to lose Reyanna but to see the grief and suffering of my son.