Until recently Christina was a very normal and happy little four year old girl who was enjoying life at her new home in Norfolk with her father Kenny, her mother Francisca and her siblings Angela, Joseph & Jude. She had just celebrated her 4th Birthday and had a lovely party with the new friends she was making at her nursery. Life was great for her and our family. We were also enjoying the recent birth and addition to our family, last December 2016 of her little brother Jude.
In October/November of 2016 we noticed that she was becoming easily tired and experiencing noticeable fatigue which we put down to her getting used to being at nursery and the usual tiredness that 4 year olds often get in that environment. But it got worse and she then began to develop a slight limp in her right leg, which we again thought was because she had hurt herself playing or trampolining with her sister. However when she was walking it became more difficult and she was always being asked to be picked up and carried to school. At this point we decided to go the doctor, he then arranged for some blood tests which all came back negative. He then referred her to a orthopaedic specialist who arranged an x-ray. This again showed no abnormalities or injuries. The Specialist then decided that we should be referred to a paediatric neurologist and we were waiting for that appointment date. During this time the symptoms worsened and my wife noticed that Christina was not using her right arm as she normally did, it seemed somewhat weakened. She seemed very unwell and she often said that she didn’t feel well. My wife then went to the A&E at our local hospital and explained the situation and how we were waiting for a neurologist appointment but things had worsened and we felt that it needed urgent attention. They examined Christina and diagnosed her with tonsillitis, sending her home with some antibiotics whilst totally dismissing the other things we mentioned, saying that that we should wait for our appointment with the neurologist.
Both my wife and I are musicians and I often have to go away at weekends to engage in various music events. On the 5th of February I was away on a gig and I got home in the early hours of the 6th of February. I managed to get a couple of hours sleep and then first thing that morning I took Christina straight back up to A&E. I told them that I had no intention of leaving the hospital until they had examined her properly and carried out an MRI scan. This time they took us seriously and admitted her to the paediatric ward. She underwent blood tests and eye tests etc and an MRI had been scheduled for 2pm the following day.
On the 7th of February Christina was sedated and had the MRI scan. Later that day we were told that the doctors would be talking to us shortly about the scan. We had an agonising wait and then we were asked to join them in a private room for the scan results. Just from their facial expressions and body language we could tell that things were not good. Our happy little world was about to be changed forever. They told us that Christina had a Mid-Brain Glioma and that she was being transferred that same evening to a specialist hospital in Cambridge where they deal with paediatric brain tumours. Within two hours of receiving this devastating news I found myself sitting in the back of an ambulance with Christina being driven at high speed, blue lights flashing, on our way to the hospital. This was the worst nightmare that any parent could ever imagine and there was no way of waking up from it.
After a night of further tests and observation of Christina, I eventually met with one of the Neurosurgeons who had examined the MRI scans and he told me that the tumour was not in a good or favourable position in the brain and that this would be a difficult one to treat. We were going to be there for a few days while they assessed it and tried to make some kind of decision. They began giving her steroid medication which may have helped with some of the symptoms slightly but she became very down, she was crying a lot and it was the first time in my life that I had seen a four year old with depression. It was heartbreaking.
After a few days had passed my wife and I finally had a meeting with the oncologist, the surgeon and a number of other people who formed the medical team that were looking after her. The news was not good. As a result of their team discussions and upon closer examination and scrutiny of the MRI scans they were fairly certain that this was a high grade glioma situated in the brain stem. It could not be operated on or removed and even a biopsy of it was not without its risks. They said that even if it were a low grade glioma they could still not cure it. But they doubted very much that it was of this lower grade type, in fact they said it has all the typical characteristics of an aggressive cancerous tumour. Chemotherapy might slow it down but ultimately it could not be cured. Radiotherapy carried massive risks of damage to the surrounding tissue so this was to be avoided. They told us that if untreated she may have only a few months to live.
My wife and I, after much discussion, thought and prayer, decided that there was really little or no point in subjecting our daughter to a biopsy, with a stay in ICU with all of its associated risks when the fact remained that the tumour could not be surgically removed. We also made the decision to not allow her to go through Chemotherapy treatment with all of its unavoidable dreadful side effects, It will not cure her, in fact we felt that her time might even be reduced by this treatment and most definitely be made more intolerable. We could not do that to our little girl, so we have chosen quality of life over an extended period of suffering.
The doctors, the surgeon and the oncologist agreed with our decision and thought it was most likely the best decision. They even went so far as to say that they thought it was refreshing to see parents like us being so accepting of such an awful situation.
However, we had not given up on Christina when making this decision. If we agree to a treatment we need to know that it's not only going to prolong her life but that it has a very good chance of saving it and that unnecessary suffering is avoided.
Where we are at now.
Since February Christina has remained with us here at home and we have sought professional advice on nutrition, diet changes and a naturopathic, holistic approach to keeping her as healthy as possible. This regime of juicing, organic foods, an alkaline plant food based diet, the budwig protocol, along with numerous various supplements and superfoods etc has had a positive effect on her and she has not deteriorated as was expected by the doctors. She even managed to make it into her first day of school in September, something we did not think would happen, which was a such a blessing. She remains unsteady on her feet and the right side of her body and her right arm remain weak but she manages to do a half day at school and gets to see her friends.
The extremely slow symptom progression along with further MRI scans has revealed that the tumour is not growing as was expected and this has led to a second opinion and a more detailed MRI scan carried out by a specialist brain tumour professor which revealed that the initial diagnosis of a high grade glioma may have been somewhat incorrect. Christina's brain tumour is now thought to consist of two parts, an intermediate to high grade component on the brain stem along with a lower grade component to the left side of it. The good news is that its progression is slower and there has only been a small observable increase in its size from February to June. So we now possibly have more time than we thought, more time to do all we can to seek out a treatment that can help her.
The fact remains that the tumour is inoperable because of its position on the brain stem and again the conventional treatments currently available here in the UK are not going to have much effect in the long term, if any, on the higher grade aspect of that tumour. So the prognosis remains poor.
Going forward - Where there's hope.
The plan going forward is to raise enough funds to take her abroad to a hospital in Mexico where several children from the UK are currently being treated for brain tumours with very promising results so far. The treatments are very expensive and because they are so pioneering and are very much in 'uncharted territory' it is hard to know the exact duration of treatment required or even the absolute outcome, but we will do all we can to save our little girl.
The intra-arterial/ immunotherapy method used in Monterrey, Mexico, will amount to £300'000 for the complete course of treatment. This will include the costs of flights and the accomodation required for extended periods of stay there.
We are currently in regular communication with the parents of a British girl who has been traveling there for treatment over the past few months.
Although there are some other treatments available in the USA which we have been looking into, the most promising option right now appears to be in Mexico.
We have managed to raise considerable funds so far with the help of wonderful donors and friends who have donated money and put on some amazing fundraising events for Christina.
Some of the music events held so far have included appearances and performances from artistes and celebrities such as Tony Hadley, Go West, Kim Wilde, Midge Ure, Nik Kershaw, Heaven 17, Martin Fry of ABC, Carol Decker of T'pau, Living in a box, Shane Richie, who were all part of the 'Night 4 Christina', so brilliantly organised by our close friend Marcus Vere of 'Living in a box'
Also a performance by Incognito & Citrus Sun at the Jazz cafe London organised by Bluey of Incognito with special guests including Hamish Stuart of The Average White Band, was a great a success.
Jocelyn Brown, Omar, Junior Giscombe, Drizabone, Andy Abraham, Pauline Henry of The Chimes, Tommy Blaize of the Strictly Come Dancing Band and many others have also come to our aid lending their voices to our cause; not to mention the efforts and dedication of numerous DJ's and people from the UK soul music scene who have shown us such overwhelming love and support.
We continue to use some of the money raised along with our own funds to maintain and continue the naturopathic, holistic treatments for her here but we need all the support we can get to try and give Christina a greater chance of beating this awful disease.
Thank you for taking the time to read this. If you are unable to make a donation then please do share this page and say a prayer for her. Thank you and God bless you. Kenny, Francisca, Christina & Family.
Please sign this petition and share it. Let's change the future for children with brain tumours here in the UK.