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Original poster

My baby has retinoblastoma

31 replies

scaredmuffins · 05/02/2025 21:48

My baby boy, 3, autistic, has a retinoblastoma. Emergency surgery on Friday to investigate. They haven't confirmed it yet, they will on Friday. But I know, he has every single symptom and the tell tale signs that can't really be much else.

I just wanted to tell someone as I don't want to stress my mum or my friends out, my partner is great but he wants to keep positive.

I feel so guilty, I've always had a feeling something awful would happen to him because I wished him dead when I was pregnant with him and in the mist of PND at the beginning.

He's the best kid I've ever met. How will I get through this? Thanks for listening all

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Original poster
scaredmuffins · 05/02/2025 21:50

The haven't confirmed the cancer I mean. But they showed me the ultrasound, they showed me the growth that 'shouldn't be there'. I saw the tumour😔

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Teladi · 05/02/2025 21:50

Please don't feel guilty. This is not your fault. You absolutely cannot make this happen with your thoughts. I'm sorry you are going through this.

littleteapot86 · 05/02/2025 21:52

This is absolutely not your fault. Massive hugs to you. I think retinoblastoma has an excellent prognosis if it is actually that. Xx

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Families
FromCuddleLand · 05/02/2025 21:53

It's not your fault, a lot of us have had entirely irrational thoughts and fears around pregnancy and motherhood. You are not alone in that.
This thing has happened by chance, sheer shitty bad luck. Keep breathing and be assured that it has been found and treatment will now start.

stichguru · 05/02/2025 21:53

I'm so sorry you are going through this. This is not your fault. Love and hugs to you and your boy.

Original poster
scaredmuffins · 05/02/2025 21:58

Thank you strangers 🩷 he is so special. We never think it will happen to us do we. He has a brother who is 4, I just want them to grow up together.

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Violetmouse · 05/02/2025 22:01

I don't know if this is any comfort but I was in your place 6 years ago when my daughter was diagnosed with a soft tissue tumour. We went through some incredibly tough times but she is now a beautiful wonderful girl and we are on the other side. I know not everyone is as lucky as us - but it is possible that there will be a way through this. Sending hugs

EliflurtleAndTheInfiniteMadness · 05/02/2025 22:03

If you were my friend or part of my family I'd want to know so I could support you. You didn't cause this, it is not your fault, if there is something that guides our lives I'm sure they wouldn't chose to give a LO cancer because their mum had some mental health struggles or wished they weren't pregnant. You really didn't cause this and you deserve support with this, please don't punish yourself because you had these thoughts.

Original poster
scaredmuffins · 05/02/2025 22:06

Thank you @Violetmouse prognosis is very high with this so that's reassuring.

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Goofbawl · 05/02/2025 22:07

I also know a very brave girl who is in remission, having had the same thing. So sorry to read OP, what an awful shock. Take one day at a time x

Original poster
scaredmuffins · 05/02/2025 22:10

@EliflurtleAndTheInfiniteMadness I think I will speak to them when it is confirmed. I only found this out today after 6 hours at the hospital, have been to work to finish some bits, ans now I'm home, awake by myself processing the day. Tomorrow I will work, Friday will be the surgery. Then the horror begins. My life was so normal and lovely this morning. But yes, I think my friends and family will be great at supporting us

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fashionqueen0123 · 05/02/2025 22:13

If it helps at all, I know someone who had this about 20 years ago, she must have been about 4. She’s now mid 20s and doing great :)

nocoolnamesleft · 05/02/2025 22:13

That must be so stressful for you. But yes, the prognosis is generally very, very encouraging. Hoping Friday goes as well as possible.

Jemimapuddleduk · 05/02/2025 22:18

Hi - I couldn’t read and not reply. Firstly please post in the childhood cancer board on here as you will get lots of support. Secondly my ds was diagnosed with AML at 16 months, just as I was recovering from pnd. We got through it (it was bloody tough), he’s now 10 and doing well. He got diagnosed with autism when he was 3. Thinking of you all

BangingOn · 05/02/2025 22:20

I’m so sorry you are going through this. Are you being seen at BCH or Royal London? I assume Friday is an EUA to properly investigate?

If you haven’t already, ask the hospital to be introduced to the Childhood Eye Cancer support worker based at your hospital. The support they give is incredible and there is a brilliant Facebook group that they run for parents which is invaluable for support and advice. You will a million questions and it’s a very safe space to have those answered.

We are 10 years down the line from you and I can remember exactly how you’re feeling. I hope I can offer reassurance that things are going to be ok. The shock right now is huge but there are far, far worse cancers your child can be diagnosed with. My son is absolutely thriving despite losing an eye, which at the time felt like the end of the world but now he describes as one of his favourite things about himself.

Original poster
scaredmuffins · 05/02/2025 22:26

The positive stories are lovely and so helpful. Thank you. I'm just in complete shock. I'm very glad I have this app right now

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Original poster
scaredmuffins · 05/02/2025 22:26

@BangingOn no we are being seen in York

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ChillWith · 05/02/2025 22:30

So sorry to hear this and hope his treatment is quick and successful. Big hug x

han01uk · 05/02/2025 22:31

Hi. My son was diagnosed with grade D retinoblastoma aged 2.5yrs. He is nearly 13 now. He had 9 months of systemic chemo and then intra arterial chemo at GOSH. He has kept his eye and has good vision in it, though slightly reduced and wears glasses. Please, know this is not your fault. It's a pretty long and horrible journey, I hope you have some support. I struggled through, stopped work for a year while my husband carried on, which probably wasn't the right thing to do. He was in and out of hospital as had a Hickman line which can get infected so they are really cautious. The prognosis for retinoblastoma is really positive, and treatment will happen quickly. I am happy to answer any questions you have or give you a handhold through it all. Have a look at CHECT (childhood eye cancer trust) Fb page and website, they have support places and can help with finances, extra holidays etc etc when this is over. Good luck to you.

BangingOn · 05/02/2025 22:33

@scaredmuffins unless something has changed very recently the two RB centres are Birmingham Children’s Hospital and Royal London, so it is likely that you will end up at one of these and I am surprised York haven’t referred you there already.

The RB consultants are fantastic, it’s a very specialist team who really know their stuff. There is a CHECT support worker based at both hospitals, but there is also a lot of information on their website about diagnosis chect.org.uk/about-retinoblastoma/#diagnosis

Notgivenuphope · 05/02/2025 22:47

My friend has this same condition at the very same age. She did lose her eye and had a lot of treatment. She only has very vague memories of the time as she was so young.
But...
She is now 42 years old. She took part in sports, was a very good student, has a pHd, is a nautical engineer and is able sail regatta boats by herself. She can drive but chooses to ride a bicycle. She has got married and had two children, who are both healthy.

She manages just great (in fact better than her brother who has two eyes), and is one of the nicest people I know. No cancer scares since. She has a prosthetic eye, and no joke, I didn't know it wasn't real until I had known her for over a year and we had a conversation about giving blood and she said she couldn't as she had had childhood cancer. Only then looking closer could I see the difference. She had had a slight droop in one eye but tbh pads of people have that.

All the best to your boy OP.

Original poster
scaredmuffins · 05/02/2025 22:51

They literally found the problem today at an eye appointment for a lazy eye. Perhaps we'll end up travelling then? The retina specialist is here on Friday which is why the surgery/Eua is then and not today or tomorrow. Thank you for your help much appreciated

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Amybelle88 · 05/02/2025 23:04

Retinoblastoma has a really good prognosis - I know someone who had it as a child and is 18 this year, absolutely fine!

Please don't be hard on yourself, we've all thought some crazy things when our hormones are haywire - it doesn't make you a bad person.

vipersnest1 · 05/02/2025 23:06

Oh, @scaredmuffins, I can totally understand why you don't want to say anything yet (I've had very difficult situations with both of my DC but the actual circumstances are irrelevant).
It's partly wanting to protect other people, not wanting to be overwhelmed by their reactions and also not wanting to really acknowledge it's real I think?
Do what you feel is right, but don't forget if you don't look after yourself, you can't look after your little boy.
Take care. You will be in my thoughts. X

Readnotscroll · 05/02/2025 23:15

Hello, So sorry to hear what you are going through. I just to also suggest seeking support from Young Lives V Cancer once you have a diagnosis. Great charity that can offer different sorts of help. Wishing you and your little one all the best xxxx