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.

Technology for the Visually Impaired

I work in technology innovation, and one of the biggest changes I am now seeing (compared to when I first heard about Rb 6 years ago) is technology being made available in new and innovative ways to the visually impaired. However, there is a clear lack of PR around them and a lack o! serious uptake in UK hospitals. My colleagues actively send me links to such developments – reproducing some below..

Some of the biggest developments are around wearable technology – glasses, most with Artificial Intelligence built in (link and link) are helping  routine activities like walking, running and navigating around the streets. There is a really cool new app that identifies and voices the names of objects around us, very useful in shops and supermarkets (link).

There are tonnes of other apps helping with useful activities like identifying light sources, motion/ people sneaking upon you – a good list here. A lot of the new developments are around popular tools like Siri/Amazon Echo  (voice recognition), Audible (audio books), and the fantastic camera/light sources in the camera of the new smartphones.

One thing is clear – the developments in the field of technology are truly going to make the life of the visually impaired much better than it was in the 80s, 90s or 00s. It may not make a huge difference to those with good vision on one eye, but with 40% of Rb patients affected by bilateral, this is definitely an area to watch out for..

Do write in if you’ve come across any useful app or device that you found useful for the visually impaired!

First Day of School

Suri had his first day of primary school this week, and what a change it is! He now has this 4-layered uniform, homework and full days every day. He has after-school clubs, playdates, swimming lessons, football, tennis and music. He has a full week!

It feels like he is doing a lot sometimes, but kids do enjoy doing a multitude of activities – and they have so much energy!

In my last post, I had talked about school selection as an important aspect of bringing up a visually challenged child. Each school is unique, each parent has a different set of criteria that is important to them, and we do have a lot of choices in the UK. The criterion that drove my choice was class size. I wanted Suri to feel comfortable to ask for what he wanted in a relatively intimate and personal environment. One thing the doctors keep telling me: kids adjust. They stop telling you when the vision feels a little blurry or if there is a slight pain that could be triggered by a new tumour. You can rarely depend upon them to warn you about early signs (of Retinoblastoma or other childhood cancers). In an intimate and closely monitored environment, you are more likely to pick up discomforts the child experiences.

Another consideration for me at the time of selection was the willingness of the school to accommodate special requests. That was something I need not have even worried about – Rb children need very little ‘special’ help in school – but it is up to the Visual Impairment Unit to watch and decide how much support the child actually needs. My borough sent in observers to watch Suri at school for close to 3 hours and decided he did not need any special help whatsoever. He now receives no special considerations at school. One of my earlier worries was about him being able to read the big screen and write in a legible way, but he seems to be doing fine with both.

And as I have written in previous posts, Suri does everything a child his age does with full vision. He is quite academic (he won an award in his school year), he loves cycling, sports, music, trains and playing video games. He still throws tantrums at eye drops during checkups, but hospital visits are part of the routine for him.

A lot of parents write to me when they are in the early stages of treatment, worried about how the child’s life will be affected, and I always write back to them – they will be fine, regardless of the treatment they have had to endure.

Annual update :)

I really want to write more, but sometimes between work, life and social media engagements (it seems to have a life of its own) it is difficult to sit down to write. But when I visited the blog after a long gap, I realised

(a) there are still visitors despite me not promoting this blog in any way – which seems to tell me that Rb parents are still hunting down any information they can find on the internet

(b) the amount of information available online on Retinoblastoma is very very scarce. There are almost no major digital campaigns around it; and not too many active Facebook pages. The tremendous advances in technology and social media have not improved this much in the last 3 years I have known the condition.

(c) it will be good to let everyone know how normal Suri’s life is (even though there is nothing to write a blog about) so you can expect what is probably coming your way.

He has his routine checkups at Royal London, once every 6 months or so, and he loves going to attend these sessions. In another 2 or 3 checkups, it may be possible to do without General Anesthesia altogether. He has his visual assessment once a year and he seems to have decent vision on his one eye, and very limited vision on his other. Which is what I expected, except that the some element of vision, however bad, on the poor eye was a bit of a surprise really. He will rarely use this vision (mostly peripheral) as he grows up, and this will not benefit him in his daily activities, but it is still there.

He has started at a private school and he is leading the life of any normal school-going kid. I do not know of any accommodations the school has had to do for him but I will be checking with a Visual Impairment Unit advisor in the coming days. The only comment I have had from teachers is that he hates it when he walks into a familiar room with the furniture rearranged, which makes me realise he relies a lot on his brain visuals rather than real-time visuals. It is normal adaptive behaviour for a lot of us with normal vision, and those with limited vision will heavily rely on images stored in their memory for handling objects on their “wrong side”.

I have not prevented him from playing any sports or indulging in any activities so far (even enrolling him in rugby classes), but I have begun to watch out for dangerous activities or tough sports where his good eye could be injured. I have not discussed this with the school though, as they seem not to be doing anything remotely dangerous as of now!

The choice of school is perhaps an important topic to cover, as the right kind of support is extremely important for any visually challenged child. Private vs state school in the UK is a big discussion and I have been through months of agony over the decision. There is probably never a right or wrong, but it maybe worthwhile putting down some thoughts on the next post!

Hope everyone had a wonderful Halloween!

IVC – A good break from IAC?

I have already explained why I am not a fan of IAC – the lack of data around its success, the direct toxic effect with potential for vision deterioration and some reports of children having developed metastases have not put me at ease around IAC. I had considered IAC in the USA very strongly for Suri, but had decided against it for all these reasons.

Now I hear about IVC – Intra-Vitreal Chemotherapy – which actually seems to address the problems IAC has. It injects chemo directly into the vitreous, mopping up any cells that may have spread around. According to Dr Bruce Morland who has written for CHECT, there is no acute toxicity as it is not delivered into the retina. The technique seems to be reasonably simple as well. The data points so far are interesting.

IVC seems to be better embraced in the UK than IAC, with Birmingham already trying it out. Would I have considered this for Suri? With more data points, maybe. With a fear of metastasis, maybe. But otherwise, it would be wait and watch.


Foetal Scans and Retinoblastoma

My little sister, an expert in foetal medicine, had a new scoop for me when I met her last weekend – you can indeed check for eye anomalies in babies still in the womb. She has seen cases where the Rb tumour can be clearly identified in foetal scans. That was an interesting bit for me, as I was checked by a foetal medicine expert (and someone far older than her!) every day during my last month of pregnancy. I had foetal scans almost every day due to oligohydramnios and I remember the doctor checking every single organ of the baby for genetic abnormalities – except the eyes!

This is confirmed by internet research as well, and there are interesting stories of foetal tumours being detected.

Considering how common retinoblastoma is, it is a shame that it does not feature at the top of any priority list of doctors doing genetic/foetal testing. “If only” is the most vividly felt emotion of any Rb parent, and this piece of information definitely makes the feeling worse.

It all comes back again and again to the one thing I keep raving about – there is just not enough awareness of Rb in the world and all you need to do is educate the GPs, gynaecologists and paediatricians. I know CHECT has a strong programme to educate the GPs, but there is no equivalent in developing countries targeting the specialists. I know what is to be done, I just need to get on and do it now!


Before or after?

Which do you prefer? Trauma before you have the baby or after you have the baby?

I was asked the question today by a friend. If trauma-free child-rearing is not an option, which of these would you rather go for? Painful miscarriages with no end in sight to having a baby, or watching your tiny little baby go through torture for no fault of their own?

I do not have an answer and I am sure everyone thinks the grass is greener on the other choice –  I believe watching trauma played out on your child is far, far worse. Watching on helplessly as your innocent baby goes through months of chemotherapy, isolation and 8-hour starvations before anasthesia is not something you can deal with in a solution-driven way.

Having said that, I can only imagine the pain the others go through – it is all about how we deal with it that makes the difference (or so they say!).

It’s a small, small world

It has been a year of epiphanies. A 2 year old boy is never easy to handle – a 2 year old boy who has had a childhood filled with trauma, pain and horror-in-the-name-of-treatment are way more impossible to handle!

Imagine a hyper-active kid who wakes up every two hours due to night terrors (and then is groggy and half-attentive throughout the day), a toddler who runs for his life when anyone wearing blue (the colour of hospital uniforms) steps into his path, a boy whose earliest sentence is “I hate eye drops” and a massive hypochondriac all rolled into one! That is how my son has turned out.

There is inherent insecurity in all kids going through severe early pain (let’s say, with chemotherapy) and it has become all the more pronounced in Suri now that his stable partner (me!) has abandoned him (according to him!) to go back to full-time work. It was a difficult decision for me to make – but I felt spending every day of his first 2 years and 3 months with him sort of compensated for the vividly cruel gesture.

In fact, going to work had an unexpected blessing in retinoblastoma disguise. I work alongside an Rb father whose kid A literally went through everything Suri went through, right down to the stage of diagnosis and the recurrence. It was awesome to meet the lovely girl as well – she has so much spunk and maturity that I am beginning to wonder if Rb is actually responsible for creating some strong, well-balanced kiddos out there!

The difference here is that the father has a history of osteosarcoma – as we know, heritable retinoblastoma is widely linked to osteosarcoma and vice versa.

Suri has already been warned about the risks of osteosarcoma developing at an earlier age (and with a higher possibility) than non-Rb kids. This parental link was very interesting to note as well – I wonder if the gene was actually passed on. (I know you read the blog – so something for you to check up and comment on?)

It is indeed a small, small world. And it underlines the fact that we need to spread Rb awareness even in small communities like the tiny company I work for. It could make a difference to who-knows-who!

There it goes again!

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!