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My baby boy has Neuroblastoma

(18 Posts)
s88 Mon 08-Aug-16 17:56:14

As the title says really ..

We found out a month ago, after a month of misdiagnosis from GP & hospital.

Only around 80 children per year in the UK, you never think it'll be you .

I am looking for other people who have experienced the same

s88 Mon 08-Aug-16 17:56:43

He is 2 and a half and has stage 4 high risk

hanselandmarge Mon 08-Aug-16 18:03:19


What awful news!

I'm hoping you get the support you need.

My friend's little boy was diagnosed with Rhabdomyosarcoma 2 years ago. Which I believe is rare.

Sending you a virtual hug and hand to hold.

s88 Mon 08-Aug-16 18:15:58

Thank you . How has his treatment gone ? Well I hope . Poor babies

hanselandmarge Mon 08-Aug-16 18:47:26

It was 2 years ago, he is now 6. And cancer free!!

It had spread from the tumour so the initial op turned out to be more drastic. He had proton therapy in America.

What has the consultant said re your ds? Regarding a treatment plan.

Keep posting and let off steam here!

Would you like to say a bit more about your ds? How is he currently?

s88 Mon 08-Aug-16 19:06:50

He will have a minium of a years treatment.

He has a tumor of around 12cm x 6cm x 6cm in his tummy , 2 in his head (bones not brain) 1 in his groin and 1 at the base of his spine . One of the tumors in his head was very visual . Around 6cm x 3cm but this has shrunk from 1 round of chemotherapy.

Were currently in hospital starting his 2nd round of 5 .

It'll then be more chemo if needed , surgery , stem cell transplant, immunotherapy.

Just so hard to digest it all .

ImperialBlether Mon 08-Aug-16 19:14:26

flowers for you and your family. Such sad news.

Have you done an advanced search on here? I know at least one MNetter has had a child with Neuroblastoma.

hanselandmarge Mon 08-Aug-16 22:30:52

You must be feeling terribly overwhelmed. Do you have other dc?

How long will you be in hospital for?

Please don't feel obliged to reply. I don't mean to bombard you.

Hugs to you and your ds.

s88 Tue 09-Aug-16 07:05:06

Yes we have a DD7 , she has been amazing throughout .

We were in hospital for the first month , we've just had 4 days at home and now back in for round 2 of chemotherapy. We should be home at the weekend if he is feeling well enough and then have 2 weeks at home but it's likely he will have a fever in this time which we have to be in hospital for if it reaches 38 , for Atleast 48 hours .

QOD Tue 09-Aug-16 07:09:04

Sadly far too many people on here are in your shoes

Big big hugs to all of uou

hanselandmarge Thu 11-Aug-16 09:05:26

Op how are you and how is your ds getting on?


fanniboz Thu 25-Aug-16 01:36:55

You're all in my thoughts, OP. flowers

s88 Sat 03-Sep-16 20:45:21

we are just finishing round 3 of 5 induction chemo and it's knocked him a bit . having to stay in longer than planned as he is quite sicky

BlackSwan Sat 03-Sep-16 21:34:12

Utterly tragic to read this. I hope you are bearing up ok. My son had a brain tumour,but is now doing well. Hospital is so hard on everyone. I will keep you in my thoughts.

bunniJ Mon 12-Sep-16 20:19:33

Huge hugs to you mama. You are very brave and strong. Please remember there is a lot of support around and you arent alone in this.
Huge hugs to you and your family.
i will keep you and your little man in my thoughts

do keep us updated


overwhelmed1 Mon 12-Sep-16 20:28:17

Sorry to hear your little chap is struggling with the sickness sad

My 7 year old is a year through 18 months of chemo for a brain tumour. PM me if you'd like a chat flowers

Shorty1983 Mon 12-Sep-16 21:22:44

Sorry to hear of your little mans diagnosis s88. How is he progressing? Keeping you in my thoughts flowers

fanniboz Thu 22-Sep-16 08:20:29

How are things OP? Thinking of your family flowers

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