Social standing, profession, education and the school you went to, how much you earn, how many friends you have and who you know. These things mean absolutely nothing when you find out your child has cancer. When you hear those words that first time it lays waste to your entire understanding of the world, how it works and how on earth this could possibly be happening to you. It cuts to the very centre of your being, it cuts away everything, all those layers of ‘who you are’, and it removes you instantly from normal life. You sit and hear that continuous echo in the hollowness of your soul of, ‘why me, why us, why my child?’ How dare this thing happen to us, how bloody dare it, and you try desperately to believe that it’s not true, to find some way that it’s neither real nor happening nor possible.
But, in fact what has been placed before you is a journey. A journey that stretches and twists, cuts and burns you, your family and your relationships. You will lose friends and feel outcast, but fear not, it is a pathway to change. A pathway to get the very best out of you, to get you to appreciate the tiniest things in this life and an opportunity for you to lift your head above the mist of modern mediocrity and see for yourself the true nature of things.
This is our story, I hope it helps.
My daughter Lua was born three weeks overdue by caesarian section at the beginning of 2009. Like all new parents we found it tough but were so happy to have her. As she grew we started to realize that she wasn’t developing the same as other child and while other 6 month olds were sitting up and trying to move, Lua was still on her back and having trouble rolling over. She was diagnosed with a development delay at about 8 months. NHS waiting times meant Lua wouldn’t be ‘evaluated’ for months. My partner Maria is from Argentina and we knew we could get someone to see Lua immediately there so we went and saw a neurologist in Buenos Aires.
He found nothing serious and monitored Lua each time we went back, roughly every six months. Back in London we put her through physiotherapy. Having a child with a development delay was really hard. She couldn’t play with other kids her age and we had to continuously explain why she wasn’t moving. Having your child different from the rest is instantly ostracizing. The playground becomes a place you don’t want to be. But, her delay was actually our first great benefit. If Lua had been normal we wouldn’t have found her illness until it was too late.
While in Argentina for the summer in August 2010 we saw Lua’s neurologist and he decided to send her for a routine ultrasound to check her metabolic function. The radiographer had a very strange and uneasy expression on her face that sticks in my mind to this day. A few days later I understood why. She found, by accident, that Lua had large malignant tumours in both her kidneys, two in the right and one in the left. It was diagnosed as Bilateral Wilms’ Tumour. Sitting with the neurologist that day, hearing those words, hearing ‘your child has cancer’, and a rare form at that was unbelievable. There are no words to describe it. There was panic, anger, fear, emptiness and a sickness in the pit of your stomach that never left.
We had no idea of what to do next, but were told to go to the free childrens’ hospital in Buenos Aires. They wanted to start a regime of chemotherapy immediately. That hospital was one of the most difficult experiences of my life. It was unhygienic and dirty. There wasn’t even toilet paper in the toilets. The hospital was old and tired, and very basic.
The first experience of chemotherapy was horrific. Two big burly male nurses roughly pinning my screaming terrified child to a wooden table and forcing a needle into her hand trying to find a vein. She was terribly afraid and so were we. That needle contained her first shot of cytotoxic drugs. It was one of our darkest moments and those who have their children treated in a UK hospital should count their lucky stars. There was no love, no caring, just aggressive cold-hearted getting it done. Then Lua and Maria had to stay for a week to see if there was a reaction.
The law in Argentina states that you cannot take your child out of a hospital until they say you can. After a few days in that awful hospital in Buenos Aires we knew that Lua had to come to the UK as soon as possible. I told the oncologist there that we were taking Lua away and getting flights home the next day but she informed me that she couldn’t allow it. It took serious negotiations to finally get Lua out during which time I’d contacted Great Ormond Street Hospital (GOSH) who would accept Lua due to the rarity of her case. After a week in that hospital we flew home and went straight to GOSH.
What a different story GOSH was. They have been incredible, caring and gentle, and explaining everything. They gave us time to digest each step. They inserted a port in Lua’s side to make administering of chemo easier and then Lua was put on Vincristine and Actinomycin. The first couple of weeks of this went well but quickly she became very ill, weak, slept badly and lost her appetite. She kept having high temperatures, which is very dangerous in a child on chemo and they have to be isolated in hospital. Almost every week we were in our local hospital, Kingston. Once for seven days. I remember being there once and chatting to a Dad whose child was in with Swine Flu! His son was coughing all over the place, touching everything! We had to be so careful taking things in and out of the isolation room.
It was at this stage we encountered Momentum. I was in a bewildered state walking dazed around Sunshine Ward at Kingston Hospital for the first time one morning and met Bianca. All she had to do was look at me and I cried. I cried like I needed to. Somehow I had finally met a person that knew what I was going through and was willing to feel my pain with me. That day was the beginning of a friendship that will last always. Not my friends, nor members of my family, no-one in my life knew what to say to me or how to help. But Bianca knew. I had friends of 18 years that in the two years of Lua’s treatment sent me ONE text message. Astonishing! Obviously not the friend I thought they were, but I still to this day get regular emails from Bianca asking after my family.
Well, before we left Buenos Aired we tried to find ways of battling her cancer other than the orthodox routes. There is a multitude of ‘natural cancer cures’ out there like aloe vera and honey, and graviola and we rapidly tried to pool as much information as possible to help us. We took her to a healing priest from India and consulted shamans. One important find was Cressenti. Dr Cressenti is an Argentine Doctor using homeopathic systems to combat the effects of chemotherapy and they have evidence of increasing the life expectancy of terminally ill patients but many years. We used Cressenti throughout Lua’s first round of chemo but the drugs were having adverse effects on her body that the doctors didn’t expect.
Lua had to have blood transfusions, all kinds of antibiotics and even antifungal medicine. Lua was not tolerating her chemo at all well. It was damaging her liver. Worse than that it didn’t seem to be reducing the size of the tumours. This was devastating for us. She had never seemed ill until the chemotherapy. It felt like the chemotherapy was just damaging her and not helping at all. Lua’s oncologist decided that the best thing was to operate, take out the three tumours and then pick up the pieces afterwards. It was felt that she would need dialysis and probably kidney transplants for the rest of her life.
The surgeon doing the operation said he might be able to leave her with half a kidney in total if it the best possible outcome occurred. He explained, as he had to, that she might die during the operation. I’d built up a huge fear inside that she might die from her illness. To be told that it could be the operation intended to save her that might kill her was petrifying. He said it was one of the most complex surgeries he’d ever undertake.
Lua’s first operation was very difficult. It was scheduled to take 4 to 6 hours. After just one hour we had a call from the surgery unit saying there was a problem and that we were needed there right away. All I could think of was that they had killed her. When we got there the surgeon told us that he’d found the tumour on the left side much larger that an MRI scan had shown and wanted to know our opinion on what to do. In a journey like this you are asked to make incredibly difficult decision about the life of your child. No parent should ever have to be put through that. We decided with him that they should proceed as planned and remove all three tumours. We left the room in despair. It was like we had had to seal her fate to a life to transplants and immune-suppressing drugs. At this point came a piece of great good fortune.
When contacting us they had also tried to contact Lua’s oncologist but couldn’t get hold of her. As we walked away prepared for defeat she called them and said to stop and only work on the right kidney and remove the two tumours contained within. Leave the left with its unexpected difference. This allowed us a great opportunity to try and find a way to make sure Lua could have good kidney function with her own kidneys for the rest of her life. That operation went far better than expected and the surgeon could leave about a third of a kidney on the right side and it functioned well. This was a triumph considering he felt that he wouldn’t be able to save any part of that kidney at all.
She recovered very well and was given more chemotherapy to try to act on the remaining tumour on the left. Lua then had a PET scan and it showed that the tumour was inactive! We were absolutely shocked and surprised. That result opened up many opportunities for Lua. I asked for a meeting with Lua’s oncologist to ask if we could have a stop on all treatment to see if we might find another way to kill the tumour. That meeting was a very special moment between the oncologist and I, it was human to human not Doctor to Father of as ill child.
An oncologist probably sees 10 to 20 people a day, five days a week. Often dealing with terrible and heartbreaking issues and so they must have a protective mechanism with which to keep themselves going and keep themselves sane. I really wanted to speak to her heart, to the naked one within, I wanted to really show her how hard I was willing to fight, to work to find a solution that wasn’t so damaging to Lua. Seldom in life do we have the chance to look in someone’s eyes and say all we need to say without words. I feel so strongly that we were only allowed to have the break in treatment because that day, that person’s heart could feel what mine was asking for.
There is so much on the internet some negative some positive. We radically changed Lua’s diet, introduced all kinds of super-foods and supplements and bought a healing machine. We consulted a homeopath, a herbalist and a nutritive specialist and took real charge of her health. She seemed to be doing fine. Each month she had an ultrasound and it showed no change in the tumour. We thought we could keep this intense regime going for the rest of her life. It was tiring but worth saving Lua’s kidney function for.
The oncologist called it a sword of Damacles and really pushed to have the tumour removed but we stood our ground sure that we could manage it ourselves. There are thousands of stories of people that have cured themselves of cancer with alternative therapy, why not us too? Well, the grave difference between cancer in adults and cancer in children is that in adults it comes predominantly due to lifestyle or significant events. Sometimes if you change that lifestyle, and reintroduce healthier systems things can improve. In children it doesn’t work like that. To say ‘it’s genetic’ is to simplify something so complex that not one person has been able to explain it to me yet.
I have asked many people, why this happened to our child and nobody has given me an answer. Was it something we did, or something she was exposed to? They say cancer is linked to the emotions in adults but how can that be applied to an 18 month old who is loved so dearly? There are books on the internet about cancer being a fungus but how could she catch it and not me or Maria? No-one can answer these questions. No-one. I will never know why Lua had this illness so I have decided that it has come to our lives to teach us something because some good must come from going through such evil.
Lua had an MRI scan after 5 months of observation and it showed a tiny amount of activity in the tumour. GOSH offered an operation and more chemotherapy, but again couldn’t guarantee saving any usable kidney tissue. The tumour was 6cm in diameter and at it’s border was the feeding artery to the kidney. If this were damaged then the whole kidney would be lost leaving her with just a third of a kidney on the other side. The surgeon, who I trust completely, offered no guarantee of success if he were to operate. Failure was not an option.
I scoured the internet for alternative cancer clinics. I found how many think of orthodox cancer treatment as an industry with drug companies making billions from treatments. Days and days of research produced three possibilities in three places. One in Germany using anti-cancer vaccines, one in Texas using antineoplastins, and one in Mexico. The Germans blankly refused to treat a child and no amount of pleading changed their minds. The place in Texas, The Burzynski Clinic would only treat her if everything had been tried and she had been sent home to die. So, we went to Mexico. Tijuana is not a nice place to go, it’s on the border of the USA and we felt very uneasy about going but it was the only option. They were amazing.
They used state-of-the-art natural-based drugs and various machines to attack the tumour from all sides. It was a grueling three weeks. Treatment after treatment and no time for Lua to play like a normal kid. They bought some toys for her to play with but it was not a child friendly environment. On top of that there were 8 adults there having treatment, some very sick. Of the 10 people that were being treated along side Lua five have not survived. The others are still fighting, if there is a cancer industry it’s because that’s all that works for some cases.
Lua had very strong fevers and found the treatment hard. For us it was exhausting trying to entertain her and keep her happy through it all. She didn’t want to eat, but more importantly she didn’t want to be there. She was so happy to leave each night for the hotel. She was hooked up to 4 intravenous injections (1 hour each) per day plus 3 other treatments. We felt so bad about putting her through it but felt that if it worked we could save her kidney function and her quality of life.
We have taken some very useful things from that clinic, things that we are still using now and will do for the rest of Lua’s life. Ways to help her through chemotherapy and to make her healthy. An ultrasound on the last day showed a decrease in size of the tumour by 3mm but the big thing, we were told, was that the blood supply to the tumour was reduced by 80%. Best way to win a war, cut the supply chain, no?
Armed with this great news we left for home ready to continue the treatments. Getting the medication and equipment through customs was difficult, but we managed it. The treatment at home took all day as in Mexico but at least Lua had her toys and people could come at visit. Unfortunately the doctors at GOSH felt ‘blood supply to a tumour’ is not considered relevant.
They did an MRI and but it showed that the tumour activity had increased. Absolutely devastating! We begged, borrowed and scraped thousands of pounds to go to Mexico and it seemed that it had all been in vain. We had tried everything and nothing was getting results so Lua was scheduled for another operation. Fortunately we had time to prepare her for it. We stopped the Mexico treatment except for a few very important things and started to feed her up and make her strong. This time Lua was not in a weakened state due to the harmful effects of the chemotherapy, as with the first operation.
I met the surgeon a few days before the operation and told him all we’d done. He was amazed and said he really admired us for our courage. He said it’s vital to try all you can to get the best outcome be it physical, mental or spiritual. You might expect a surgeon to be cold and clinical but he is one of the warmest and kindest men I ever met. We are always bumping into him at GOSH and each time he is full of smiles and gentleness. He promised to do his best for Lua, and that he did.
The operation was unbelievably successful leaving her with just over half a kidney on the left side. Lua was left with two good-sized pieces of functioning kidney tissue. She needed no dialysis and recovered incredibly quickly. A few weeks after the operation Lua’s movement started to progress rapidly and her energy levels soared. That tumour was so debilitating. It made us understand fully how hard cancer is on the body and how far reaching it’s effects can be.
Lua had to have preventative chemotherapy to make sure other abnormal cells in her kidneys didn’t change. She is now doing well. We still using all sorts of things to help her through it and through the six month period months she didn’t need to go to hospital with a fever once and she still had all her hair! I believe that if you have to poison the body as a means of medicine, then the least you can do is fill it full with healthy stuff to balance it out, shame Doctors don’t feel the same.
This is just the bare bones of a story that has changed our family for ever. All kinds of emotions come out when you have to put a child through something like this. At times I have found myself intensely angry at the world. The bitterness that welled up in me at the beginning caused deep suffering in my family, and I am so fortunate to have had my wife Maria as the one to share this experience with. I will have the scars forever, but I am so proud that Lua chose me as her father to hold her hand through this terrible experience.
I believe that we are agents of change, and if we have faith in the outcome we want, it can be achieved. We took Lua through a journey that crossed continents and we have been fortunate enough to meet some amazingly helpful people. Our values have changed, as has our view of the world.
I can honestly say that Momentum have been a genuine source to positivity and encouragement for us. Maria and I finally got married recently in Buenos Aries where it all started and an hour after I sent Bianca the news about it, a huge bouquet of flowers arrived on the doorstep! I have done and will do all I can to make sure other families get the support we have had. My brother and I planned to ride the London to Brighton in 2011 to raise money for Momentum but the event happened when we took Lua to Mexico so he did it with some friends and raise over £11,000. It was the least we could do.
Anyone who has had to stay in Kingston hospital will see the murals and other work Momentum have done to make children more comfortable there. I have worked with other charities and organizations and never got the level of care that we got from Momentum. They are vital to parents put in such horrific circumstances and I hope they can continue.