Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Children's health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Retinoblastoma

14 replies

beaandforrest · 27/02/2023 13:19

Hello,

My LO 10 months old, has just been diagnosed with Retinoblastoma and starts chemo on the 6th.
I was wondering if anyone had been through this? And if you have any advice?

OP posts:
TeamLoganHuntzberger · 27/02/2023 19:24

Hi @beaandforrest i am so sorry you are living through this diagnosis.

My son does not have retinoblastoma however he has Leukaemia and we are still in active treatment. When I reached out on here for other oncology mums there was no response, so I am here if you want someone to chat to.

Sending positive energy your way, you can both get through this.

minmooch · 27/02/2023 19:48

Im so sorry your daughter is facing this. It's all so very frightening and overwhelming.

My son had a different type of cancer, medullablastoma.

There was a thread on here for children with cancer which gave me lots of support.

Sending you love and strength as you face this journey ahead.

TeamLoganHuntzberger · 28/02/2023 08:07

Hi @minmooch do you have a link to that thread if it is still running? X

familyissues12345 · 28/02/2023 08:09

@TeamLoganHuntzberger , I'm not sure that thread exists anymore, I hunted for something similar a while ago.

Whilst he's stable now, my son has a brain tumour and has been through chemotherapy, happy to chat x

Humanswarm · 01/03/2023 17:35

Hi @familyissues12345 , sorry to jump on the thread op but, we have an MRI on Friday for my 7 year old ds. Symptoms point to possible tumour, I'd be interested to hear your story. Crazy thoughts right now.

Cuckfancer · 01/03/2023 22:06

Hi beaandforrest, I'm sorry to hear about your baby having cancer. My DC has a different type of cancer and we are much further down the road, had chemo and radio. I know a couple of retinoblastoma mums, one who was a baby when treated and is now a teenager. She was an amazing child never remembered her treatment though she was put off eating for quite a bit. She lost of her sight in one eye but it had only known it that way. It must be so hard with such a young baby, and I think there's a bit of travelling involved for treatment now isn't there. I hope she tolerates the chemo ok and you get lots of support.

Cuckfancer · 01/03/2023 22:08

Teamloganhuntzberger, I'm sorry I missed your thread. What type of leukaemia does your son have,and how is he doing at the moment?

C152 · 04/03/2023 14:26

I'm very sorry you and your little one are going through this, OP.

I don't have experience of that specific type of cancer, but my son was diagnosed with a medullablastoma last year and has had 2 rounds of intensive chemo, 6 weeks of radiotherapy and will need another year of chemo. My main advice would be to listen/talk to other parents about their own experiences, if you can; and to research absolutely everything and don't be afraid to ask questions (even when the Drs look at you like you're crazy or wasting their time for asking).

For the first round, my son had 5 days of intensive chemo (2 different types of chemo each day, adminstered via a hickman line. The first ran for an hour; the second ran for 5 hours). He wasn't confined to bed during the chemo, he could move around, play, eat and drink etc., as long as we were careful with the drip stand. Some hospitals will have play specialists, who will visit your child or see them in the playroom (if you wish) and either play with them directly, or provide you with toys/games/activities that you can borrow for the duration of your child's stay.

As he was still on steroids (to alleviate swelling) at the time of his first round, it actually went very well, as far as these things go. He wasn't nauseous, ate like a horse and had zero side effects. The absolute worst thing was the injection he needed 24 hours after the final day of chemo, to help encourage the growth of white cells. It does into the muscle and he found it unbearably painful and it did result in on-going bone pain.

I was told by Drs that the first round of chemo is always done on an in-patient basis, as they like to keep a close eye on the child, to make sure they don't have a bad reaction to the chemo.

All in-patients at the hospital we were at (GOSH) have private rooms, to reduce the risk of infection. Both parents could stay during the day, and have other visitors, but only one person could stay with the child at night. Patients have 3 x free meals a day, parents staying overnight with patients do not (unlike at out local hospital). However, some hospitals will give in-patients familes vouchers to spend on the in-house canteen (about £7 a day), but you have to specifically ask. No one volunteered this information to us - like most things, we only found out about it by talking with other parents.

He had about a week's break after the first round, then had a second round of intensive chemo. However, as he had suffered no ill effects during the first round, at our request, he was allowed to be treated as a day patient. This was much better for us, as it meant he had a proper meal at dinner time (let's face it, hospital food is dire), could sleep in his own bed, play with his own toys etc.

Unfortunately, he was off steroids by the second round, so did feel very ill this time and although still eating and drinking real food (as opposed to liquid feed fed through a tube), was nauseous / vomiting throughout that entire period. Again, the injection after chemo was shockingly painful and the nurse stabbed him three times before she finally got the needle in, so he had blood pouring down his leg by the time she'd managed it.

He didn't need a platelet transfusion or blood transfusion after the first round, but needed both after the second round. Both of these sapped his energy and made him very ill (the exact opposite of what the Drs told us would happen).

With your little one's age, any scans will be done under GA. They can try different types of anaesthetic drugs / combinations, which is important to know if your little one starts having a very bad wakeup experience. For example, my son was fine the first half a dozen times, then each time he woke up, he was absolutely furious and physically aggressive (punching and kicking the sides of the bed or anyone who went near him, screaming in rage, trying to leap from the bed). The time he took to calm down was taking longer and longer and I spoke to at least a dozen Drs/anaesthatists about it until one finally said, 'you know there are different types of drugs we can try?' So they changed whatever they were giving him and, as if by magic, he was awake and coherant quickly after each GA (and he's just finished 30 of them over the last 6 weeks), not confused about where he was, not angry or aggressive.

It is very scary, because everything is unknown. At every stage, I have been terrified, yet we have got through this far. It sounds obvious, but you are the mother; you really do know best. There will be times where you have to fight for your child and you will be "that parent". Steel yourself for it. You can do it.

Drop the arsehole 'friends' who tell you rubbish things like "be strong" (as if you aren't fucking tough as nails already) and keep those who simply listen without judgement or do thoughtful things unasked, like buy you a Deliveroo voucher or offer to come and collect your laundry and do a load for you while you're at the hospital.

Sending you lots of love, OP. XXX

Humanswarm · 06/03/2023 13:32

@C152 I'm so sorry you all had to go through this. We are waiting for MRI results as I type. Can I possibly ask what symptoms your lo had? And how quickly it was dealt with initially?

C152 · 06/03/2023 14:19

Humanswarm · 06/03/2023 13:32

@C152 I'm so sorry you all had to go through this. We are waiting for MRI results as I type. Can I possibly ask what symptoms your lo had? And how quickly it was dealt with initially?

Hi @Humanswarm . I'm sorry you are in this situation; you must be extraordinarily worried.

First of all, everyone's situation is different, even if your child has the same type of cancer as someone else's - they may exhibit different symptoms, suffer different side effects (or no side effects at all) from treatment etc. That said, I did (and still do) wish I had someone to talk to about their experience, just so I had SOME information about possibilities, even if they may not be exactly the same. So, with that said...

Aside from chicken pox and the odd sniffle, my DS was never ill. No one believes me when I say that, but I always thought I was so lucky to have such a healthy, robust child - he was a happy, healthy baby; never off sick from nursery or school, never broke any bones, barely even had scraped knees. So when he did get sick, it was very obvious to me something was wrong.

It started with headaches in the morning that were so bad they made him cry in pain. A few times he woke in the middle of the night crying in pain. (And not the crying of a child whinging, if you know what I mean, the crying that says something is seriously wrong.) This happened 7 days in a row (only vomited 3 mornings out of those 7). On the 7th morning I took him to A&E, where he was actually seen surprisingly quickly and put in a private room so he could lie down and get away from the general noise and hustle and bustle in the waiting room - in highsight I think they suspected what was wrong. He had an MRI the same day and we had the results back within 2 hours - brain tumour. They admitted him immediately but, as it was a Friday, nothing happended until the following week, when he had a craniotomy to remove the tumour on the Tuesday.

So, the initial symptoms and first stage of treatment all happened relatively quickly. I have since heard stories from other parents who weren't so lucky, and returned to their GP or A&E several times before finally getting referred for an MRI, by which time their child had significant disabilities caused by the tumour.

Feel free to PM me if you want to chat some more.

OP, I hope you're doing as ok as you can be, given the situation. Don't be too embarrassed to ask for help from those around you. I have found people don't quite know what to say/do, so for fear of getting it wrong, they stay silent. But most people want to actually help, and will help when asked.

Humanswarm · 06/03/2023 16:29

@C152 oh, what a journey! Unimaginable, how life can change so rapidly! I'd love to pm, just can't work out how? I'm on the app, if that makes any difference?

C152 · 06/03/2023 16:49

Humanswarm · 06/03/2023 16:29

@C152 oh, what a journey! Unimaginable, how life can change so rapidly! I'd love to pm, just can't work out how? I'm on the app, if that makes any difference?

Hi @Humanswarm - I've sent you a PM, which hopefully you can see and reply to. I don't use the app, but on the web version I can see three dots at the bottom of each poster's message. When I click on the dots, it brings up a list of options, one of which is "PM".

Humanswarm · 06/03/2023 18:07

@C152 I can't access on the app, I will log into desktop later , thanks so much

Guidedogowner · 06/03/2023 18:25

OP, I have extensive experience not from myself but because as someone with a VI I went to a specialist school, and I have known several people over the years who have had RB.

Firstly, the short term prognosis now is much better than it used to be. Diagnosis used to mean automatic removal of both eyes and immediate blindness. But now the treatments are far less brutal.

Retinal Blastoma is genetic, and can be screened through PIGD IVF, so if you’re planning to have more children this might be something you’d want to consider.

Good luck with his treatment, and don’t be afraid to ask your consultant questions about the longer term possibilities. But get the facts from him, and stay away from google.

New posts on this thread. Refresh page