9 April 2009

Dear friends and family

Please forgive us for passing this information on by mass email but it is the only practical way to update / inform you.

On Friday March 13^th, we received the shocking news that our daughter, Luna, had a large cancerous tumour in her bladder.

Around Christmas time, we noticed that Luna appeared to be straining when she went to the toilet, and saw a series of doctors and paediatricians over the following months. Each person we met managed to justify the symptoms with simple explanations - constipation, teething, nappy rash, anal fissures, lactose intolerance, etc. Eventually, we were referred to a paediatric gastroenterologist who arranged a very comprehensive investigative procedure under general anaesthetic. He took biopsies and video footage of all different parts of her bowel, as well as blood samples, in order to check for allergies, irritable bowel syndrome, celiac disease, etc. During the procedure, he noticed nothing obviously wrong. However, the following day, the blood results came back abnormal, and he asked us to return to the hospital to take another sample. His concern was that Luna had not recovered fully from the anaesthetic. The second blood sample was abnormal too, so he asked us to return a third time. Again, this was abnormal, and he asked us to return a fourth time. This time the doctor we met suggested we carry out an ultrasound of the kidneys and the bladder. This was when we found a tumour in her bladder.

We waited for a senior surgeon to meet us and were then sent for emergency surgery at Great Ormond Street Hospital. The immediate danger was not the tumour itself, but the kidneys. As the tumour was preventing the bladder from receiving any urine from the kidneys, the kidneys were severely dilated and she was admitted with acute renal failure.

During Friday night, we waited in a room whilst the registrar arranged the surgical team for the following morning. It was a very bizarre evening as we could not believe what was happening. Luna went into theatre for 2.5 hours the following morning, where the surgeons connected a tube to each of her kidneys in order to bypass the bladder and drain them directly. At the same time, they took a biopsy of the tumour and inserted an access point to the main vein to the heart for all the medicine that they knew she was going to need over the coming months.

Over the following week, as the urology doctors monitored and supplemented the performance of her kidneys, we took Luna for scans of all parts of her body. It was an extremely difficult time as we had no idea what we would find.

Six days after entering the hospital, we were told that the cancer was confined to the bladder, that it was a muscle tumour and that it was very large (10.5cm by its longest dimension). The doctors gave us a prognosis and told us that they classified her situation as the ‘low end of high risk’. We were given information on treatments, including the option to take part in a clinical trial using more aggressive drugs. We opted for the trial and started chemotherapy treatment the following day.

Each round of chemo lasts 2-3 days, and in the middle of the first dose, we had what turned out to be both one of the worst days and best days of our lives. In the morning, whilst moving Luna from weighing scales back to her bed, we managed to catch one of the surgically inserted kidney tubes round the back of a chair and it snapped out. This appeared disastrous because they would not be able to continue with the chemo without Luna being able to drain her kidneys, and we could only re-insert the tube surgically. Meanwhile, Luna was in terrible pain, as she had been most of the week. The tumour was putting a lot of pressure on her abdominal area and she continued to strain against it. To manage the pain, she had been put on a high dose of morphine. This did work to some degree, but it also made her extremely disoriented. The previous night, we had noticed a very small part of the tumour pro-lapsing from her urethra. On that day, with us besides ourselves in panic, Luna managed to pro-lapse two-thirds of her tumour down her urethra, and immediately put herself out of pain (as well as lose 8cm from her waistline!). None of the doctors had ever seen this happen before and stared in disbelief. Later that day, we took Luna down for an ultrasound to see what to do about the kidney tube. It was incredible. Not only could we see that the kidney was functioning fine without the tube, but we could also see the extent of the tumour that she had pro-lapsed. Finally, we also got a sense that the tumour may only be attached to a small part of the bladder. For us, a miracle happened that day. We felt like Luna had shown us her incredible strength and courage and somehow everything had happened for a reason. Just a couple of days later, we removed the second kidney tube, and today both kidneys are working perfectly.

After nearly three weeks in hospital, we were eventually discharged home for a week. Despite the fact that Luna had lost a lot of weight and we were going home with a bag full of medicines to dispense several times a day and a feeding pump, we were elated. However, as soon as we got home, we realised that Luna had a temperature. Patients on chemo are very susceptible to catching infections and have very little ability to fight infections. The first sign of an infection is a high temperature, and any hint of a temperature cannot be ignored given the inability of the patient to fight the infection. We took her temperature continuously during the first hour at home, but it would just not go down. We had no choice but to check into the paediatric unit of our local hospital immediately. They confirmed the elevated temperature and forced us to stay over for three nights whilst putting Luna on precautionary antibiotics and testing her blood and urine for infection. That first night in the local hospital was a real low point. The temperature turned out to a false alarm and we eventually returned home extremely relieved.

During a precious five nights at home, we managed to get Luna walking around again (she was like a new born lamb at first) and putting on weight. Ironically, she seemed happier and more playful than we have ever seen her before. We can only imagine that she has been in pain for longer than we had ever thought.

On Thursday (a week ago), we returned to Great Ormond Street Hospital for Luna’s second round of chemo over three nights. Whilst there, we had a brief scare as one of the patients on the ward came out with chicken pox. For a patient on chemo this can have very serious consequences. Given Luna was on the same ward, we were initially told that she would have to be isolated to her room any time she was in hospital for the coming month in order to prevent the possibility of her spreading the virus further (assuming she may have contracted it). After some further investigation, and a lot of persuasion, we managed to get this over-ruled. We are very doubtful that Luna could have caught it.

Over the past few days, we have been back in as an outpatient to both Great Ormond Street (for an ultrasound to check the state of her bladder after having removed a catheter) and to our district general hospital (for an intermediate dose of chemotherapy). That seems fairly typical of how the coming months are likely to play out.

So what is the treatment plan? The basic protocol is a seven month course of treatment, consisting of nine doses of chemotherapy, one every three weeks. Each dose of chemotherapy will involve a minimum three night stay in hospital. In between doses, it is normal for her immunity to drop very low, making her very susceptible to infection and a possible hospital stay (as we have already experienced). Between the third and fourth chemo doses, the doctors will repeat all the scans, and take some images and biopsies from inside the bladder under a general anaesthetic. They will then use this to decide exactly what surgery is necessary, typically taking place after the fourth dose of chemo. Broadly speaking, the idea is that the initial three / four doses of chemo reduces the size of the tumour, and then the surgery removes whatever is left behind. As many apparently localised tumours have small amounts of cancerous cells in areas around them, it is necessary to continue the chemo after the surgery for another five or six doses. After surgery, the removed tumour is analysed, and further scans, biopsies and imaging are carried out to assess the overall success of the surgery. If there are too many cancerous cells left after surgery for the subsequent chemo to deal with, there is a possibility that she would have to have radiotherapy. There are serious long term side effects to this, so we are hoping that it will not be necessary.

And how is Luna doing in herself? Basically, fantastically well! During her first week in hospital, she was in a tremendous amount of pain. However, ever since she pro-lapsed a large portion of the tumour, she has been out of pain. For the last ten days, as she has started to get the strength back in her legs, she has been happier, more interactive and more playful than we have ever seen her before. Honestly! We can only imagine that she was in some sort of pain for a long time. Also, unlike an adult, she has no idea about the seriousness of the disease that she has so she shows no signs of anxiety. Most of the nurses in hospital find her highly entertaining as she inevitably tells them which arm to put the thermometer under and which limb to put the blood pressure sleeve on. She has also become infamous for shouting ‘ya esta!’ (meaning ‘finished’) as soon as any nurse walks into the room and then as they get closer, shouting ‘non non non’ and waving her fingers at them!  Every night at home, we sneak into her room to put several medicines down her feeding tube. It’s not an easy job, but we try and do it quietly without disturbing her. Typically, we fumble around with a torch whispering to each other. One night last week in the middle of this, a little finger poked through the bars of the cot and tapped David on the shoulder. Luna was there with a big grin, as if to say ‘Mum, Dad, I know you are there!’

As much as we are worried about Luna’s prognosis, when we look at her we can only be optimistic. She has shown incredible physical strength (pro-lapsing 2/3 of a very large tumour) as well as mental strength. So if you find any of this note depressing, just please just pop in and see her - she is more bubbly and energetic than ever!

With much love

Monica, David, Luna & Leo (the dog)