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Original poster

Does anyone know anything about retinoblastoma?

53 replies

dandandan · 22/08/2008 19:25

OK having a major panic here.

My friend made me go to her house earlier and showed me some photos she had of my DS and her DD, my DS has bright white eyes in the photo whereas her DDs are red. She saw something on the news yesterday on retinoblastoma and was checking photos of her DD for it and saw that my DS had it.

He doesn't have it in every photo but he does in some, on different days with diferent cameras. If a child has retinoblastoma would it show up on every photo?????????????

OP posts:
lisad123 · 14/09/2008 20:18

I had one from SGK, and 4 of my own, 3 of them are on my profile. They were taken different times and with different camera.
will be sure to keep you updated and hope you have good news 2

Original poster
dandandan · 14/09/2008 21:38

Your photos look realy similar to mine, diferent cameras at different times, sme white eye, some orange eye, some one eye and some both eyes. When we saw the consultant at the manchester eye hospital via A&E a few weeks ago he put drops in DSs eyes and had a good look but he said he couldn't see everything as DS was getting upset. He phoned me the week after to say he would refer him to a pead consultant but he didn't think there was anything to worry about so we have calmed down about it really. Starting to think again now though...............

OP posts:
lisad123 · 14/09/2008 22:00

Im sure if he was really worried he would be quicker at getting you an appointment. WE havent had the drops yet but guess that might be whats coming next week
Please dont panic, we are feeling a little calmer here too

marieburd · 16/09/2008 16:59

hiya i have had the same worry its been a week and a day since i first saw the white refelx in my sons photos , i,ve been too my opticians (saturday) who refered me to my gp , but coulndn't wait so went to my local a + e they had a look but couldnt see anything, not happy, so i went straight to birminghams childrens hospital (sunday) saw a doctor who said that it all looked fine but because it showed up on photo its best to follow it up , and told appointment would take about 3-4 weeks .. still not happy .
i went to my gp yesterday (monday) he looked at photos and gave me a referal letter to take to the eye casualty in wolverhampton today, so glad i didnt wait for appointment to come through.
i,m devastated the registra found 2 tumors in his left eye, we got an appointmant on thursday to see the peadiatric consultant so hopefully we will know alot more , but i,m expecting the worst , cant stop crying .....
we had to see 5 different people to get where we are... yes its very rare but someone has got to get it havent they. if your not happy try somewhere else where your happy with what they are doing.
not looking forward to the next few weeks to come.

Original poster
dandandan · 16/09/2008 18:21

marieburd you poor DS . Thats a really worrying story as its so familiar, I'm going to ring the docs tomorrow to see if I can get an earlier apt, really dont want to wait until november now.

What happens next with your DS?

OP posts:
Original poster
dandandan · 16/09/2008 18:47

Was the doctor you saw at birmingham an opthalmologist? Did your DS have drops in his eyes to dilate his pupils?

OP posts:
lisad123 · 16/09/2008 20:34

Marie, saw your post on my threadtoo, Im soo sorry to hear that it was the worst news
Im glad you were pushy and hope your son get the best treatment possible.
How old is he?? hugs, and keep us updated.

marieburd · 17/09/2008 15:56

thank you for all your messages of support. the doctor at birmingham was not an opthalmologist. i went to wolverhampton yesterday and saw the registra near enough straight away , he had his eye drops and had a good look in he saw 2 small leasions (sorry bad spelling) in his left eye , so refered back to birmingham to a consultant and got appointment 7 30 monday morning. he will be put under and looked into further . i,ve really looked into this as much as i can and they have a fantastic team there even if your not close to birmingham you can ring there specailist team with any questions . i have found them brilliant , as for being a rare condition the nurse said i would be the 3 case in 2 weeks they have had . harry is 18 weeks old on friday . sorry what does DS mean ? am just so relieved that he is booked in and something is gonna be done , still a 4 day wait though . to make it worse he has got a cold , does anyone know if they can still be put under if they have a cold ?

lisad123 · 17/09/2008 16:21

Oh Marie glad your getting some answers and soem good treatment. I read its the 2nd most common in children tbh.
DS= Darling son
DD= Darling daugther

you get used to it pretty quick here.
18 weeks, oh so young, but least it sounds it you caught it quick.

Looks like monday is going to be a tough day for both of us.

Feel free to email me [email protected]

PS: think they will still do GA if it is just a cold.

Original poster
dandandan · 18/09/2008 12:15

Sounds like the right people are dealing with him now marieburd. I'm sure they can still put him under if he has a cold and it will probably be gone by monday anyway. How are you feeling now?

OP posts:
marieburd · 19/09/2008 15:29

i,m still really worried , but its such a big relief knowing that it will be sorted monday , we'll know what it is and if its is retinoblastoma then the following week treatment will start. thats the worst thing is not knowing. my husband finds it hard to talk about it , but i have too even though i get upset every time, but i have to get it off my chest otherwise it will drive me mad . got everything crossed for monday .

hope all goes well for you too lisad123.

i rand up and asked about the ga with a cold and they said yes , its only if they have infection or something else that could cause complications .

lisad123 · 19/09/2008 19:01

marie hope your ok, keep us updated. hugs

Original poster
dandandan · 19/09/2008 21:03

Always here to listen marie, thinking of you

OP posts:
lisad123 · 21/09/2008 20:22

prayers and hugs for tomorrow

shhhh · 21/09/2008 22:33

dandandan,glad you have an appointment as I was thinking of you the otherday..is it manchester eye hospital you are booked in to..? ds was in at pendlebury which is linked to them and when the change goes ahead they will all be one iykiwm..they are a good team at pendlebury so I hope the same applies to the eye part.

If you can, I would look at being referred privatly. Can be costly initially but gives you peace of mind and sometimes gets you referred quicker...

marie,sorry to hear your bad new . Hope all goes ok tomorrow...{{{hugs}}}

lisd,conversing with you on another thread..hope you get the results you want x

marieburd · 22/09/2008 17:55

hiya all , its bad news my ds has retinoblastoma in both eyes , 4 tumors in the left and 1 in the right , having a central line put in on friday and starts chemo on monday. i know this sounds really weird but i,m just glad and relieved that we know what it is and whats going to happen. the consultant was fantastic showed us the photos of the tumors explained everything , and because we have caught it fairly early he is very optimistic , he could have lazered the one in the right eye and 3 in the left but because he has to have chemo anyway , he will wait till they shrink and then lazer them altogether , because everytime you lazer its leaves a tiny scar on the retina . so we got chemo every 3 weeks for about 5/6 months .cant explain how i feel , i'm so upset that he has cancer , but so pleased thats something is being done and that the recovery rate is very high , and his eye sight should not be damaged, if so it would be very slightly.
i know its gonna be a rocky road ahead but i,m ready for it ,
just wanna say thanks for all your messages they did help, i had to talk about it , my husband found it really hard to talk about because he said he didnt want to think it was going to happen , but for some reason i knew dont know if it was gut instinct or what, but i knew .

if anybody knows anyone who has the same worries push them to take it further because we were told but 3 different people that all was well and by one that i was over parnoid and i should act like i did when they print a story in the papers. ( that doctor is getting a letter ) the newspaper saved our sons life .

lisad123 hope you get better news than we did , was thinking of you today .
will let you know how we and our ds are getting on with the treatment ,
speak to you all soon . xx

lisad123 · 22/09/2008 18:06

Oh marie im so sorry to hear this Im glad your feeling positive and that the recovery looks good for your ds
We have only just got back, was there for an hour and a half.
We saw the consultant and he made us feel very at ease and when i showed him the photos, he explained it would be worrying, especially as more than one. We had drops and walked about the garden for 30 mins. He then checked everything but DD was screamming and had to be held down. Good news is there is no tumors or any signs of cancer. She has a short eye which is causing the reflection in photos and will need glasses in the near future but will be seen again in Decemeber.
Im so relived, but Marie, please do talk about it, and be so glad you pushed. HUgs and hope you have some good news soon. x

Original poster
dandandan · 22/09/2008 18:13

I've been thinking about you both all day. So sorry marie glad your DS is getting the right treatment now. Keep posting if you need to talk.

Glad your news was better lisa. I still haven't heard from the hospital about moving my DS apt forward. Going to give them a call again tomorrow I just want him seen.

Shhhh yes it is manchester we are in at, glad to hear positive things about them Pendlebury is a good paed hospital.

OP posts:
RaggedRobin · 22/09/2008 22:17

good luck marieburd, and well done for going with your instincts. your ds is lucky to have a brave mum fighting his corner.

shhhh · 23/09/2008 20:21

marie . Keep positive, it means alot esp to your lo. It is hard and will get harder esp when your lo is having treatment BUT make sure you talk to people as it helps to ease things slightly iykiwm..Men can shut off from everything and not want to discuss it further and i find women are the opposite.

I honestly felt like hitting dh out of frustration, he would shut off and go very serious. It was this that worried me and tbh I felt like we wouldn't get through it but we did and you will to...we came out stronger and much closer...knowing that we had experienced something in our relationship/family that not everyone does.

Remember, instead of thinking "why us" view it as "someone obviously thinks you are strong enough to cope with this" .

You sound like you are ready for the road ahead, keep going. Thinking of you and make sure you come here for support or if you need to update us. Hugs to you, your dh and esp your lo {{{{hugs}}}} xxx

Lisa, glad its good news at your end. .xx

ddd,push for a quicker appointment. xx

binkythebullet · 23/09/2008 20:30

Oh Marie Thinking of you. The team at BCH really are the very best; we saw them over a long period of time for neurological/opthalmological problems that dd had - they were a very kind bunch, not to mention leaders in their field.

Your ds is in good hands. x

Original poster
dandandan · 25/09/2008 07:51

How are you feeling now its sunk in a bit marie?

OP posts:
hsanders · 26/09/2008 00:32

Marieburd,
Just left message on another of your threads regarding chemo on children so just wanted to say hi here and let you know that although my son is 3, he also has chemo every 3 weeks for 7 months, plus radiotherapy.
If you haven't already, get in touch with CLIC Sargent, who are an awesome charity who help children and their families exactly like you. They can advise on benefits, any financial needs you need advice on and they also fund doctors and nurses, plus play therapists across the UK.
Please do message me if you'd like to touch base.
The Blog I have been writing about our 3 year old DS with cancer is at:
leosteam.blogspot.com
Hopefully you may take some comfort from what I've been writing and please take all the help you may need as a mum, especially of such a little one. It'll be very normal not the sleep, not to eat, eat too much, cry alot and often, be off with people who mean well and just generally not know who to turn to. This will all be normal!
Hope you're okay so far. I'll be thinking of you Monday.
H x

marieburd · 01/10/2008 13:03

hiya all , well what a week , my ds has had his central line put in last friday and had his first lot of chemo, and can honestly say that i dont think it has bothered him . the line or chemo. the central line he had to have a GA and apart from crying when he woke up,he,s been fine . the only thing bothering him is his teeth had 2 in 5 days , and they like razors .
thanks hsanders will check out your blog . we are starting one for my ds , cant load photos on here for some reason . if anyone wants to see my ds photos with white pupil i have them on facebook . my name is marie burden just leave a message to say your from mumsnet and i'll add you as friend .
we'e seen the clic sargent and they have been great , you dont realise how much they do until you experince it yourself . speak soon
marie x
and thanks again for your support it really makes a difference

hsanders · 01/10/2008 15:17

Hi Marieburd,
So pleased you've posted as I've been thinking about you since Monday when you said your chemo was starting ('your' chemo..you know what I mean!). You're not in Bristol by any chance as my DS has his chemo again Friday through Sunday this week so we'd be on the same ward at BCH if so!!
Message me any time.
H

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