My DD3 has stage 4 Cancer

[ToddlerMumma]

We are in shock, horror, disbelief. Last week she had a sore leg and went to A&E, now she has stage 4 Neuroblastoma and chemo starts on Tuesday.
She's only 3 but she's taking it in her stride. She cried the other night and said 'I don't want to be sick, I just want to go to nursery with my friends' it broke my heart.
The implications are just hitting, our whole lives are turned upside down for at least a year. One of us will have to give up work, how will we cope? Financially, emotionally.
I have a black lump in my stomach and can't believe this is happening to us

No wisdom to offer, only hope and love across the Internet for you and your lovely daughter

Thank you all for your kind messages and very good practical advice. We saw the consultants yesterday and the cancer is all through her abdomen but also in her skull (bone, not brain). She'll be infertile which is the worst part for me (apart from her dying of course). They will remove an overy when they do surgery on the tumour and freeze it so she has a chance of IVF later 😣 we've decided my husband will take a sabbatical from work and try and claim carers allowance. Chemo starts tomorrow. She is so strong and brave. Keeps talking about all the things she will do when she's not sick anymore and how she will get rid of monster Teddy (the name she has given her huge tumour in her abdomen). It still feels like it's happening to someone else, it's just not real. My sister is coming to visit tomoz which will be a huge support. Again, thanks for your kind words, it really helps at the moment x

I am so very sorry, @ToddlerMumma.
I have a 3yi DD as well and I cannot imagine the pain you must be going through.
I will be thinking of you and your little girl and the reat of your family x

As someone further up mentioned, Clic Sargent are a great children’s cancer charity. I work for the Macmillan support lines where we can help with benefits advice, emotional support, nurse advice, financial guides and work support (if you need to know what your employer’s obligations are as well as your rights). The number is 0808 808 0000.
Sending lots of positive vibes x

I have no words really. I can't imagine how hard this must be for you all.
Wishing you all the luck in the world for a successful outcome 🙏🏻 🌹

I cannot begin to imagine how this feels I am very sorry.

My only advice is to say yes to absolutely every offer of help, to cook you dinner or do a shop, let your loved ones entertain your little one, find out if nursery can help at all - long shot but I know some do help families in crisis - I am a social worker and it does happen.

The hospital can help with forms and finances - in my experience with my mum in a cancer hospital everything needed to be chased so prepare to 'shout' a bit, you'll become daughters advocate.

Try Home-start too for support if you need help. I became a volunteer after DS finished chemotherapy and we've supported families with parents and children going through cancer treatment. I'll be thinking of you tomorrow xx

Goodness I'm so sorry. Sending strength and love to you all 🌸

I'm so sorry op. There are no words for how awful it is. I honestly don't know what to say but couldn't say nothing either. Stay strong ♥️

A colleague was able to work periodically from home/hospital for a while, when her baby DS went through similar treatment. Could this be an option for either of you? Eventually it became too stressful for my colleague and she was signed off sick herself, but it meant she remained an employee, and retained all employee benefits. Hope it all works out for your DD.

@ICouldHaveCheckedFirst

A colleague was able to work periodically from home/hospital for a while, when her baby DS went through similar treatment. Could this be an option for either of you? Eventually it became too stressful for my colleague and she was signed off sick herself, but it meant she remained an employee, and retained all employee benefits. Hope it all works out for your DD.

This is a possibility once you get into a routine. We really started to see a pattern of how many days post chemo DS was really rotten, how many days later his counts would hit the ground and he'd be at risk of being back in hospital. I didn't work through his chemo (I was very part time before) and DH controlled his longer work days/trips away around the days we knew DS was likely to be ok

Love, hugs, and prayers for strength and endurance for you all.

Write to my friends mum

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God bless you all

So sorry

How frightening. Shock like that takes some time to subside. Getting to grip with such an alternative new reality is like learning your way around a foreign town. I wish you all health and peace.

What a horrible shock OP. I’m so sorry your little one is so sick. Go easy on yourselves for a long time, accept all the help offered.

My goodness op, my heart truly goes out to you. I have a 3 year old and can't begin to imagine how I'd cope if I were in your shoes

Oh my goodness what a horrible shock. I can't really add anything to what others have already said, but you must accept every offer of help you get. Take that casserole, that hour of babysitting, that offer of picking up your shopping or whatever else you need. People who offer want to help, let them, and save your energy for your DD. We're here if you need to vent.

Oh I'm SO sorry xxxx

Lots of strength for getting rid of Monster Teddy & all his evil little mates!

Lots of love to all of you
Xx

@ToddlerMumma just to add, make sure if you possibly can to cut her hair short before she starts losing it, it's painful to lose hair and it's easier for you (and her) if you don't see massive clumps of hair on the pillow. Most wards will have a pair of hair scissors and clippers for later. But it feels like when you've had your hair in a tight bun all day and your scalp is sore, but all over the scalp.

Good luck for tomorrow, she'll bounce back after a few days but please take every single bit of help offered on the ward and in Ronald McDonald house if you're staying there. We try and look after our parents but we can only help as much as they allow. As a children's oncology nurse I can refer families for counselling, for therapies at Maggies at the cancer hospital near by us, they help with finances and emotional support, however sometimes it's hard to know when to offer this referral so please if you're struggling or interested talk to your child's nurses and therapists you need to look after you. On the ward I work on we have family days and parties and discos and yeah it's for the kids but it's also so the parents don't feel alone.

You're not alone. You can do this. X

I can't imagine the terror you must feel. If you're in Merseyside or Lancashire and need anything please feel free to pm me. Sending so much love.

Am actually in tears reading your post…you are absolutely amazing and a brilliant Mum ..I live in the South East if I can do anything 💕💕

A different cancer but my son was diagnosed at 2. We were one of the lucky ones and he's nearly 7 now but I'm still fearful it will come back. We had weekly chemo for 6 months and then fortnightly for 6 months and once in the swing of it, it was easier as I knew what to expect. I remember in the beginning all the news was bad news but then we turned a corner and we started getting good news. I hope you do too.

If she needs steroids hide them in Nutella. They taste disgusting.

Lots of love to you and your daughter xx

Am so sorry your family is going through this. Sending you lots of love, strength and prayers

Oh my goodness this is just awful. Sending lots of love

Hi all, she started chemo today and she has been amazing. No pain or sickness and a good appetite. I'm a bit jaded from playing Peppa pig and paw patrol for 8hrs :) they have the anti sickness drugs spot on. Another 3 days of chemo then one day of fluids then she can come home again for 2 lovely weeks 🎉 I have a true little trooper 💜