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Original poster

child cancer

34 replies

charlie4321 · 20/10/2007 16:42

my 4 month old boy has been diagnosed with retinablastoma (cancer of the eye) but he has it in both eyes. First noticed there was something wrong when i saw a phototgraph of him with one red eye and one greyish eye, i remembered seeing something on tv about this and went to the docs. I was referred to a specialist on the nhs but it could have taken up to three months for an appointment so i went private, and thank god i did i went to birmingham childrens hosp the next day, worst fears confirmed he had multiple tumours in both eyes. they are starting chemo on tues. hes only four months and he looks so healthy and fat, it hasnt sunk in yet i feel im running on over drive i havent really cried yet, and usually i cry at the slightest thing. has anyone been through anything simular and acted diffrent to what they would except. p.s i have also got a two year old and im trying to keep everthing together for him

OP posts:
3madboys · 20/10/2007 16:44

i have no advice but i wanted to let you know that i had read your thread and am thinking of you and your little one xxxxx

sending lots of positive vibes.

TotalChaos · 20/10/2007 16:55

very sorry to hear this. Not been through anything similar, but I imagine that you are still in shock/denial mode, struggling to take everything in. Best wishes to you and your family.

Pinkchampagne · 20/10/2007 17:14

Sorry I have no advice, but couldn't read without posting a message to say how sorry I am that you are going through this, and that I am thinking of you & your little boy.x

AttilaTheMeerkat · 20/10/2007 17:19

Am very sorry to read about your son.

Would suggest you contact CHECT (Childhood Eye Cancer Trust) if you have not already done so. They should be able to help you and your family further; they also have a support network. Their web address is www.chect.org.uk.

NAB3 · 20/10/2007 17:25

I am so sorry to hear this. Your boy sounds like he has a great mum fighting his corner so good luck to you all.

Original poster
charlie4321 · 20/10/2007 17:44

ive just read all your messages didnt expect so many people to have written so soon. thankyou for all youre well wishes and advice on this it does mean a lot. x

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Saggarmakersbottomknocker · 20/10/2007 17:47

charlie - I'm sorry to read about your little boy. Another useful ling for you is Sargent Cancer Care I think you'll find that the Children's hospital will be very supportive.

As far as not reacting as you'd expect - I think it's perfectly normal. My dd was diagnosed with a life-threatening condition at four months and looking back I acted 'strangely'. I think your head only allows so much in so that you can cope. It's a sort of autopilot and you'll probably find it hits you weeks or months down the line. I was unbelievably calm at the time, even to the point of walking away from her in the hospital (she was with her dad) and just going home. I barely left her side for the whole of the following year but at that moment it was what I had to do. Don't beat yourself up for not acting how you think you should, there's no right or wrong.

I hope everything goes well for you. dd is looked after by the cardiac team at Birmingham. They are fab and I expect the oncology team will be just the same.

Take care.

Original poster
charlie4321 · 20/10/2007 18:02

im also sorry to hear what youve gone through (going through) i will try that websight. i feel some comfort in the fact that you to had simular feelings and that im not weird. oh well ill see how i feel next week as hes having a op to put a line through his neck and then out through his chest for the chemo and then hes starting chemo next day so i think it may dawn on me then the extent of whats happening to my little boy, when i tell people whats happened and i say hes got cancer out loud i feel sick to my stomach. thanks again for taking the time to help x

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needmorecoffee · 20/10/2007 18:10

I'm sorry to hear this. Thank goodness you didn't wait for the NHS.
Your reactions soundnormal to me. When dd got serious epilepsy at 11 weeks old I didn't collapse until the main crisis and treatment were over. I went into 'cope' and 'organise' mode.
Good luck with the treatment.

chonky · 20/10/2007 18:13

Oh Charlie, I'm so sorry to hear your news.

My dd has seen the opthalmology surgeon at BCH, and he is FABULOUS (as are the rest of the staff we encountered there), so your ds is in the best hands.

Sending you tons of positive thoughts xx

Blu · 20/10/2007 18:17

Charlie - so sorry you are facing this, but than goodness treatment is starting so soon.

There is no such thing as the way people should react, and no one can know anything, not a jot, not a bean, until they have experienced it. You are getting through it because you have too. Why would you react in any way except what you have to do to care for both your children? Doubtless adrenalin and shock are playing their part - but actually that is what they are there for.

The very best of luck as you prepare for chemo to start.

Keep posting, won't you? there is always someone on MN who has some relevant experience and can understand what you are going through, and give practical advice if you need it.

2shoescreepingthroughblood · 20/10/2007 18:28

so sorry to hear this. sending you all lots of love

needmorecoffee · 20/10/2007 19:39

Forgot to say, I believe you can claim DLA plus the hospital should give you a parking pass so you don't rack up huge fees. Or if you have to use buses/taxi's there's a charity called PACT who will help with the costs.

Original poster
charlie4321 · 20/10/2007 20:01

oh my godnees im so touched from all your messages im so glad i joined and wrote how i felt as cant speak to familly memebers about the way im feeling as there going through enough upset. im away in hospital as from tomorrow so i will let you all know how his little body responds to the bad things of chemo. thanks again by writing this its made it all a bit more real and that has helped me face the next week

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Mitchell81 · 20/10/2007 20:02

Wishing you and your family lots of support during this difficult time. Hope your baby makes a quick recovery

curseofthemummylin · 20/10/2007 20:03

this is just to wish your little one all the good luck in the world.I sorry i have no advice for you

Saggarmakersbottomknocker · 20/10/2007 20:07

charlie - are you sleeping at his bedside at the hospital? If you intend on getting a bed in the parent's accomodation make sure they know that as soon as you get there so they can call the relevant people.

Original poster
charlie4321 · 20/10/2007 20:22

hi there ill be staying with him all week do i need to request a bed,i just assumed id get one i couldnt imagine sleeping on a chair all week but its good advice ill ask them when i arrive thankyou

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Original poster
charlie4321 · 20/10/2007 20:23

i think i miss read your post ill be staying by his bed hopefully they will accomadte for that if not ill be sleeping in the chair x

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needmorecoffee · 20/10/2007 20:49

Some children's hospitals have beds by the child's beds. Bristol does.
Trying to think of helpful advice....we just did a 4 week stint in hospital with dd aged 3. A good book for when he sleeps, essential oils to make the room smell nice (and I washed down the cot with hot water with lavender and tea-tree in). There should be a parents room with a fridge so take food to cook with you as the canteen bills soon mount up and the food is vile anyway. Don't be ashamed to ask for help or accept any and make sure people come visit you (who's caring for your other lad? He will need talking too and made to feel part of caring for his little brother. He might be feeling confused or unhappy)
Do you have a close friend you can call from the hospital if you're upset or even just lonely and over-whelmed?
Bombarding you here so sorry. Hope it goes well.

mymatemax · 20/10/2007 21:27

So sorryt o hear this & thinking of you & your little boy.
As the others have said there is no normal way to deal with such a worrying time.
But you don't have to be brave all the time, the nurses will expect tears & IME are very good at caring for the entire family.

Saggarmakersbottomknocker · 20/10/2007 22:42

Sorry charlie - yes they'll provide a put-up bed for you but they also have a separate parents block too Edward House and a small amount of parent accomodation within the hospital.

Blu · 20/10/2007 23:03

Charlie - I do have experience of being in hospital with a small child, but not 'your' hospital. We had 'put-u-up' beds by their cots on the ward. Take something you can walk about in - track suit style pyjamas, and slippers / flip flops - there will be a shower for you. ime parents do get to know each other and support and help each other a lot on children's wards - but it can be very emotional.

I know what you mean about not being able to talk to relatives etc. There have been times I have not been able to open my mouth to talk about my DS's operations (he has orthopaedic operations for a non-health threatening condition) in RL, I just can't speak. But MN has ben great at those times.

chonky · 22/10/2007 10:17

Charlie, I've stayed at BCH - they definitely have put-u-up beds so that you can stay with your ds. The staff have always been fantastic, many of them still recognise my dd several years on from when she was first admitted as a baby, which I think says a lot about how they care for their patients there.

There's an M&S Food Hall about 2 mins from the hozzy (not cheap, but good for a pick-you-up treat). There's also a well stocked shop in the hozzy, so you should be fine for mags (and chocolate!) but take a good book - as NMC says there's invariably a lot of waiting.
Likewise, an i-pod/ walkman is great if you have one for you to be able to shut out the noise of the ward and unwind when your ds is asleep.

Saggarmakersbottomknocker · 23/10/2007 09:26

Charlie - thinking of you today. Hope the treatment goes well.