Chemotherapy in babies....would like to know what to expect.

[hackneyzoo]

Have just found out my 10 month old DS has a tumour at the top of his spine, the DRs are still investigating, but we have been told, after the results of an MRI, that due to it's size and position he will probably need a course of chemo to shrink it before they remove it.
I have looked on the Macmillan site but would really appreciate some insight into how babies deal with chemo and what to expect. I know there are many types of chemo and each case is different, I'd just like an idea of how babies handle this, and how parents and siblings handle this too.
This is still early days and we will know more next week after a biopsy and more test results, but the MRI was a bit of a shock. DS is oblivious and perfectly happy, but the thought of him having to go through operations and chemo scares me beyond belief. We are int he care of Royal London and GOSH and the DRs seem great and completely on the case, I'd just like to hear some first hand accounts so I know what to expect.

No advice at all, just hope everything goes well and good luck.

I don't have any advice i'm afraid but i do hope very much that everything goes well. x

I'm sure someone on here will ahve some advice for you, just keeping it bumped until they come along.

Hope your ds is ok and you and your dh get all the support you need.

bump

bump

just keeping this bumped for you and saying that I was you and your ds all the best through his treatment.

sorry meant to say wish not was.

bump, best of luck.

Bump

Best of luck for you and your ds.

I don't have any experience of chemo, but I do have some of some pretty nasty drugs that are slightly comparable to chemo.

On the whole babies deal quite well with harsh treatments as they don't have the psychological baggage that older children and adults have. They aren't aware that the treatment they are having MAY make them feel ill, they go with what they physically feel, not what they THINK they should feel. I hope this makes sense and I hope someone comes along soon to answer your questions.

I can say this,

There may be times when your little one looks very very ill. You will be beside yourself with worry BUT within days he will be bouncing about like a lunatic and giving you no end of cheek

The little ones are like that. As soon as they feel better, they act better.

I wish you everything you need to get you through this (big unmumnetlikehugs)

Maks sure you stuff him with every food he likes when he can eat. The more fat and calorie laden the better.

Be prepared for him to play up rotten (in a nice way). The little ones used to turn into right little princes and princess. All the attention went to their heads (and so it bloody should).

You are in good hands.

Just to add. The little ones tend to do very well compared to the older ones.

I hope havent said anything to upset. Not my intention. All the best.

no advice either - just thinking of you and your DS and hope he gets better really soon x x

Thanks Chegirl and Iliketomoveit, its reassuring to have an idea of what to expect and to have some idea of what I can do to help and get him well again. Will stock up on lots of good food for DS and stuff as many bottle of milk down him as possible. Thanks you everyone else for your kind wishes.

DS is being a trooper about it all (DD is a bit miffed that her brother is the centre of attention for a change) and we are trying to keep it all as normal as possible for both DCs. Not sure how much DD understands as she is only 2.7 but she's been good so far. I am trying my best to keep it all together, I just want to know what will happen next and to get on with making DS better, it just seems like we've had two weeks of endless waiting for appointments and test results and more appointments, but the Drs and nurses have been great.

Do you have anyone DD likes to take her away and spend some time doing the normal things with her, grandparents or aunties to take her to the park, etc.? Not to take her out and spoil her with new toys, but just time for her to let off steam and be herself without a distracted and tired mum and dad to bother her?

Sorry to hear this and hope everything goes well for DS. Can I ask how did you know he had a tumour, could you feel it?

hackneyzoo - I have no experience of chemo but do have of a young child being in hospital for a long time and with siblings on the scene.

As MoveIt and chegirl say the little ones tend to just go with the flow and ds will surprise you I'm sure by how much he puts up with and how quickly he bounces back. Just keep doing what you're doing. If you can keep dd in her routine I think that really helps. My mum did a sterling job with my other two. Do you have good family support?

And don't forget to be kind to yourself too. Take care.

I don't know about chemotherapy but my little boy had neurosurgery at 14 months. We were beside ourselves but he bounced back, literally, amazingly fast. As someone said, they don't have all the hang ups and fears that we do.

Wishing you all the best.

Nappyaddict- He started to lose the use of his left arm and hold it in a 'waiter's tip' position. It fitted in with the symtoms of Erb's Palsey but he had no nerve damage. The continuing weakness in his arm adn the fact that he seemed unable to have solids without gagging or being sick led to the MRI and the discovery of the tumour.

miumiu sorry you had to go through a similar experience and gld your lo bounced back, its very reassuring to keep on hearing this.

Thanks math and saggar, am goin gto try to stick to DDs normal routine as much as possible. Don't have much family near by, but have friends who are willing to help out with nursery pick ups and stuff like that.

Thanks for all the good wishes.

Also wanted to add my best wishes for your DS and whole family. Hope he recovers quickly.

Wanted to add my support and very best wishes to you and your family.

Hope you are all bearing up ok. Thinking of you and am around if I can help at all xxx

bump. I have no experience of this but I hope everything works out well - just being his lovely mummy and showering him with love will make a difference to how he feels.

what kind of things would u like to know? my son had 6 months of chemo for Retinoblastoma, so ask away!! its tough but kids bounce back amazingly well, Ryder hit every stumbling block he could but hes doing fab now and a cheeky little toddler!! wishing u all the best! will check for replies.x

my 2yo dd is having chemo at the minute and has just started her 3rd cycle, her chemo will last over a year. So far she is taking it all in her stride, she really is amazing. She can be quite sick straight after chemo but that is more tougher on me and dh as she bounces back straight away.
Ask away and if I can help I will.

I just wanted to send our good wishes to you. My DH has been really stressed out with work and I have just shown him this thread and it has put all our worries into perspective.