Retinoblastoma

I hear the word for the first time ever. I had taken my 2 month old baby to the local ophthalmologist for a simple eye exam (his lens seemed discoloured) and after a series of torch lit tests and ultrasounds, the doc tells me this is what is wrong with his eye. Something that can easily be fixed?, I ask. It is a tumour, they say. Well, something that can be removed?, I ask. Hopefully with chemotherapy, they say.

Then it dawns on me – it is a cancer. My 2 month old baby who knows only to drink milk and sleep, is affected by cancer! Haven’t we all heard about how it is our lifestyle that causes cancer – all the smoking, chemicals, dietary habits.. What did my poor kid do to get it so early I wonder. All the stories of childhood cancer which I had conveniently ignored in the name of emotional drama suddenly stare me at the face.

The doc says the tumour is widespread in the right eye and gives us a 95% guarantee that the left eye is not affected. He asks us to immediately go to a major eye hospital in another city to save his eye. He says we are already running a bit late. Regret that I ignored a seemingly simple condition for about 3 weeks is one of the earliest emotions I feel. I swear to God I never ignore even a simple blemish from now on – call me paranoid, but I intend to take my kid to the hospital for every physical change from now on.

Why must you happen to me??

I *seriously* need to change my GP. The latest incident goes like this..

As keen readers may be aware, Suri has had no vaccinations taken after his birth vaccines due to low immunity from chemotherapy. He was given one DPT vaccine, one IPV vaccine and one set of OPV drops before all the hungama started.

Though he was advised to start his vaccines six months after his last session of chemo, I decided to wait another two months until we reached the UK so that he would get uninterrupted vaccines from the same healthcare system (or so I believed). The first session of the vaccination was impressive enough – the “jabber” seemed to have a chart that detailed all the vaccines to be taken when delayed and she finished the DPT job in exactly 2 seconds (before Suri even realised someone was trying to push a needle into his arm). The IPV job took a second extra, but even then Suri failed to realise there was a second attempt at piercing his veins.

One casual statement stuck out though – when asked if Suri needed to take IPV as well as OPV drops (as is the custom in India), the “jabber” replied – “India is a weird country and they do all sorts of unnecessary things. There is NO concept of OPV needed when IPV has been given”. Okay, I thought – both are polio vaccines and she is probably correct, although she didn’t really have to deride the whole country for that.

Then I did some research – OPV was given in the US till 2000 and in the UK till 2004. Surely she was aware of that? The reason they stopped giving OPV was due to the very few numbers of wild poliovirus present and the only cases (7-8 a year) were being caused by the OPV itself. There IS an actual reason why OPV was stopped in the UK while it continued in less-eradicated countries with widespread wild viruses, like India. Surely she did not have to bad-mouth the entire country to give me this bit of information? To give her credit, maybe she thought I was a dumb parent who did not need to be told medical details of why a particular immunisation was dropped (of course, there is no way she would have known I was writing a blog about her!).

The next visit was even more hilarious. She had ABSOLUTELY NO idea which vaccines Suri had gotten already. She was about to give him the Men-C jab and send us home when I kindly reminded her that there is one DPT jab still left. What would happen to my baby if I were indeed a dumb parent who didn’t know the minutae?

I *seriously* need to change my GP!

The Price of Emotion

It’s hard to compare the Royal London experience with the experience in India. Some of my friends ask me if it is a huge relief for me to be back in London and getting treatment from the “best” in the world and enjoying the “best” infrastructure of the world. I say no – I don’t feel a huge difference; and the Indian experience wasn’t that bad as it is made out to be!

Sure I’ve had nursing issues related to the cannula, felt the need for support groups, and have had to travel by air to a strange city every month for treatment. But at the end of the day, it’s the teensy weensy day-to-day things that you remember. I remember how Suri used to smile back at the ever-smiling nurse at the hospital. Despite knowing he is at the hospital for a series of painful events, he never stopped smiling at her till we left. I don’t see him doing that at any nurse at Royal London. The nurses all looked exasperated at the “load” of work at seeing 6-8 patients a day. In India, the nurses were seeing 24 patients in half a day, and they never ever stopped being polite!

I also remember how time-efficient the team in India was. After every checkup, the doctor would come out to speak with the parent, while the next patient was being prepped. I have watched this process and clocked them over my time there – and they stick to the same 15 minute cycle from prepping to briefing every time! In London, the doctor comes out only at the end of the day’s checkups. I am sure it helps him focus better on the cases, but isn’t it a tiny bit inefficient, leaving parents to wait 2-3 hours and the doctors not utilising the downtime between cases? (Disclaimer: I have NO idea what goes on behind the OT doors, so this is at best an assumption of the amateur.)

I also feel there is less of a community bond – in the Indian hospital, there were slides and see-saws; here there are individual toys and books.

But I must admit the experience in Royal London has been great. The doctors from Moorfields are experts in the field; and the new building is just va-va-voom. I like that they provide dvd players and books. I like that they only do the eye drops once or twice (in India it was a 2 hr process with around 10 sets of drops!). I like that the rooms are clean, trauma-free (no crying from 24 kids at a time) and well-provided with food and drinks. But despite all that, I have no regrets going through the Indian experience – it had a sense of bonding that is unmatched here (maybe that is why I did not need to go to the support groups anyway!).

Move of a six thousand mile

I have not been updating the blog for a silly, superstitious reason – I didn’t want to jinx Suri’s condition! Suri has had no new tumours since Dec ’11 and it would take 3 checkups to confirm that it was indeed clear and safe to spread out the checkups. By Feb ’12 the doc was confident enough to suggest that we meet at a gap of 6 weeks (instead of the 3 weeks that we have been doing since the diagnosis). Also, it gave us time to plan the move back to London.

The move happened in early April, and Suri adjusted quite well (except for a bout of lactose-induced diarrhoea!). The last time we were in London, I was unable to get an appointment at Moorfield’s – although I did blame them at that point, it was my utter lack of knowledge of the NHS political system which failed me at that time. Still with no knowledge of how to play the NHS system, I took a casual appointment with the local GP and then met him convinced that the referral to Moorfield’s would happen on an urgent basis and that I would be able to see a consultant within a week. Of course, the word cancer would have them running to the nearest fax machine, or so I thought. In fact one week passed and with my naive trust of the GP system, I waited for them to contact me – which they did after a week or so. But when I did go to collect my letter from the GP, I realised they had given me a “Choose and Book” appointment for 3 months from now! Which means, if Suri had any new tumour that started now, he would have had it spread to the brain in 3 months time! We were lost – Moorfield’s refused to meet us without an appointment; we cannot get a referral to even an ophthalmologist; going to a private doctor would mean that our future paperwork would get messed up; flying to India for a checkup was an unnecessary and expensive option. (I did realise later that a lot of other Rb mothers have faced the same issue from the NHS).

After a talk with my GP friends, I began to understand a little more about the way GP minds work. I called back my local GP claiming a case of “emergency” where my child is having “serious” “vision-related” issues. I feel guilty for dragging my kid into a web of manipulation, but parents can hardly sit around and wait in this scenario can they! We met another GP and I talked to her about how Rb spreads to the brain quickly (imagine educating the GPs!) and how his one eye is the only hope for a normal life. The young female GP (as opposed to the older male GP we had met earlier) was very sympathetic and immediately went to the reception to make sure the papers were faxed over to Moorfield’s. One barrier crossed.

Remarkably, I got a call back the NEXT day from Royal London, with Suri’s appointment having fixed for the very next Rb clinic! The Moorfield’s team does clinics on Wednesdays at Royal London and he was being seen by the consultants I have been reading about for the past year! I was amazed at the difference made by the attitude and responsiveness of the GP.

Having learnt a few lessons..
- Not all NHS GPs know about retinoblastoma and how serious it is
– Not all NHS GPs know that not having a tumour in the last three months does not mean no new tumour can come up today
– You need to create a sense of urgency through emotions and technicality if an NHS doc has to take you seriously

..I feel better prepared to tackle the next series of treatments. Royal London, here we come!

Boxing Day

In between all the chemotherapy sessions and weekly blood tests, the most relaxing activity for Suri and me have been visits to the neighbourhood beach. We take a slow walk to the beach and walk (push the stroller!) up and down the esplanade. The sea breeze and the local kulfi icecream are some of the most effective relaxants in the world! Suri knows most of the regular visitors to the beach – we all go there at the same time, and share life stories. It is interesting that all of us have not-so-upbeat life stories to share.

Today was different. The beach we all love, turned a wee bit red I feel. There were tears everywhere. Even fear hung in the air. What if another tsunami comes along, right now, as it did 7 years ago? There were people like us, out for a morning jog / chit-chat / fresh air when the tsunami struck this very beach. We all know where the first wave crashed; we all know to which house on the other side of the esplanade the water reached; we all know there is no running to escape the waves if it struck; yet here we are, on our daily visits, hoping that it won’t happen again. (I have charted out the path of running and the highest points of the route if at all we need to make an escape – which will all be useless if a tsunami wave actually fell on us )

Today, my heart goes out to all those who could not escape that wave on Boxing Day, 2004. People like us, who went about their daily relaxation routine at the neighbourhood beach. And also to those who saved hundreds with their quick thinking – without you, my neighbourhood would today be a ghost town.

Ignorance and terror

Bala Murugan is a 2-year old patient at the local cancer Centre, just across the road from where I live. He has bilateral Rb, at an advanced stage, and was prescribed radiotherapy back in October, just after Diwali, after several rounds of unsuccessful chemotherapy. He had cancer close to the optic nerves, and radiotherapy was the only way out. He comes from a rural area of South India where cancer is a “demon” and radiotherapy “destroys life”.

I heard about Bala when I got in touch with the Centre in September about sponsoring their Rb patients for chemotherapy. They got back to me with the story of Bala, and how his parents, both labourers, can barely pay for hospital admissions. They were worried that they would not turn up for the radiotherapy appointment as it is unlikely they will be able to collect the needed funds. I signed up to pay for the radiotherapy expenses, almost triple of what I had earmarked for the chemo funding, and was looking forward to meeting Bala and his family.

I did not hear back from the Centre after that and got back in touch last week. What I heard back was a shock. Bala never turned up for his appointment in October – his parents went ahead with alternative therapies and another cycle of chemo at a rural hospital. Nothing worked – they were back at the Centre, but this time with a brain metastasis. The cancer, that could have been controlled with the right treatment, had spread to the brain. The Centre told me casually, yet professionally, that they were just “providing supportive care” for the patient now. My heart breaks when I think about Bala, who I never met, but who I had become so close to emotionally. I had even decided which toys to pick out for him when I did meet him. I hope I still get to meet him – and get the opportunity to shout at his parents.

Bala will be just another statistic – one of the 0.5% that succumbed to retinoblastoma. But I want to implore to every parent out there – please give your child the best treatment possible. Even if it means travelling for days, giving up your jobs or spending money that you don’t have. If you can save a life, it will all become worth it. Retinoblastoma is a mild form of cancer ONLY as far as you treat it – ignoring it is fatal and we ought to remember it always. Please don’t let anyone miss a treatment – I hope India has a database of cancer patients and they are dragged for treatments like they do in the UK – but please, please spread awareness in every community in your country, city, state, village.. so that no more cases happen due to ignorance and terror like that with Bala.

El cumpleaños

Suri is turning 1 in just over a month, and I’ve just realised what a rollercoaster ride the year has been! It has reminded me that I have been away from home for over a year now – and that Suri went through the first year of his life in cities that had no prior connection to our lives, in guesthouses and rented houses with no room of his own (and no baby decorations whatsoever!), and no father around. If someone told me that’s how his first year was going to be like, I would have fought tooth and nail against it. But right now, all of this feels insignificant.

I also realised that I still don’t know what Suri’s hair is really like. By the time he turned 2 months and started getting sparse hair, the chemo started. I had a glimpse of some fine, straight hair in the month without chemo, but I still don’t know what his hair is actually like! I don’t know if it is curly (very unlikely!), wavy (like his father’s) or straight (like mine), thick (father’s) or fine (mine), dark (father’s) or brownish (mine). I debated about having an outfit with a hat for his birthday, but then decided to keep him comfortable and let him wear a casual, simple outfit. Well, I am a compulsive planner, so we are all set with the venue, food, cake and clothes! All I need is to find out now who I can actually invite to the party in this foreign little town!

Blood on their hands..

The highlight of last week’s treatment was the splattering of blood from Suri’s arm all over the sheets and clothes in the midst of chemotherapy. I understand a baby’s veins are difficult to find – but surely, the cannula coming off in the midst of an IV is the heights of negligence? Either the person who put the cannula is incompetent; or the nurse who changed IV bottles did it incompetently. If the cause is that the baby moved his hands too vigorously, like they claim, surely you cannot expect an almost 1 yr old to sit still in his mother’s lap while you administer 3 hrs of disconcerting IV fluid? Surely you need a better system?

And to make things worse, the challenge to put the cannula back on was an eye-opener. The anaesthetist refused to put it on, saying it was the nurses’ job. The nurses washed their hands off, saying the veins are impossible to find. So here I am, running pillar to post, asking the hospital staff, what next? Here is a patient waiting to be given chemo – and noone is willing to give it! Would this happen in any other part of the world, except somewhere where the population is so high that they can afford to be incompetent with simple procedures?

It makes me wonder if the baby would be better off in London, even though the inefficient NHS virtually refused to give me an appointment. Once you do get the appointment, I have a feeling Suri would be in better hands (they would possibly drag you out of your home for the appointment, considering there are only 20 new Rb patients in the UK every year).