DS needs 4–5 months of treatment in the US, complicated family situation

[kaatee]

Urgent advice needed because I honestly don't know what to do I'm really struggling with this and don’t know if I’m overthinking everything, so would really appreciate some honest opinions.

My son is 15 and was diagnosed with a disease about 3 weeks ago. I was obviously really scared at first but after speaking to his doctors and getting all the tests/reports done, they have reassured us that it isn’t dangerous to his life and he is safe, BUT he needs treatment fairly urgently otherwise it could become serious.

They have recommended a specialist hospital in Los Angeles. My ex husband and I have been in contact with them, they have seen all his reports and spoken to his doctors here and they are saying treatment will probably take around 4-5 months. They are expecting him to be absolutely fine after treatment, so thankfully the doctors aren't making us think the worst.

Money isn't really the issue, we can afford it. It’s the whole logistics of it which is making my head spin.

My ex husband and I have 50/50 custody of our three children. They are very close to both of us and honestly they aren't children who can just go and live with one parent for 5 months. They are used to having both of us around and are very attached to both of us.

So we are thinking that me and my ex husband would take all three children to LA. We would rent a house there and my son would have his treatment, while the other two would go to school there for the few months.

That part is pretty much what we are planning.

The problem is my husband and my stepchildren.

I am remarried. My husband has two children from his previous marriage, they are 15 and 13. Their mum sadly died, so they live with us full time. I’ve been in their lives for a long time and basically I’m their mum now. I do all the normal mum things with them and they are very attached to me.

My husband has a job here which he can't just leave for 4-5 months, so he can't come to LA with us.

And this is where I honestly don't know what the right thing is.

If I go to LA, it means leaving my husband and my two stepchildren here for nearly 5 months.

I feel horrible about that because these children have already lost their mum and I am the person they rely on every day. The thought of suddenly being away from them for that long makes me feel incredibly guilty.

But then my son needs me. And I can't really take only him because I share 50/50 custody with my ex husband and our other two children need us as well. They are just as attached to both of us.

My husband actually says I should go.

He says he will manage here with his children and that it makes more sense for them to stay in their home, continue school and have their normal routine rather than everyone being uprooted. He doesn't seem worried about me going with my ex husband because obviously this is about our son's medical treatment.

But I just feel torn.

On one side I have my son who needs treatment and two other children who need both their parents with them.

On the other side I have my husband and two stepchildren who are also my family and who depend on me.

And then there is the fact that I would be living in LA for 4-5 months with my ex husband and our three children while my husband stays here. I know why we're doing it and neither of us has an issue with it, but it is still a very unusual situation.

I keep thinking maybe I should find some way to take my stepchildren too, but then their dad has to stay here for work and they can't just be separated from him either. And moving five teenagers around the world for months sounds completely chaotic.

I honestly don't know what I'm asking here apart from maybe what would other people do?

Would you just accept that this is one of those situations where I need to go with my son and my ex husband and leave my husband and stepchildren at home?

Or would you be trying much harder to find a way to keep everyone together?

Could you come back to the UK a few times to visit your DH and DSC? If money is no object, during times when your son is not having intensive treatment come back for a weekend and leave your ex to look after that end, it seems like he is capable of looking after them all by himself for a while.

You absolutely do not all need to go, that is ridiculous. 1 parent should go and switch each month. You’re massively over complicating things and making them more difficult than they need to be.

Well, you’ve massively over-complicated this situation!

You take the unwell child to LA and focus your attention on him and his needs.

All the other children remain with their fathers who both sound perfectly capable of managing.

Your current solution seems focused on addressing your needs without any consideration for the massive, unnecessary, disruption this creates.

The last hope ones where the parents have to raise hundreds of thousands for unproven (and almost always futile) trials are genuinely upsetting. They prey on desperation and I wish they were more tightly regulated.

There will 100% be a specialist centre in the UK for treatment. The Royal Family etc don’t have to go abroad for treatment. Have you properly looked into that?

Dragging everyone to the US for 5 months is insane. Of course the other two will manage being at home without you. You're honestly being incredibly overdramatic.

Would you even be able to take your stepchildren there with you? Presumably they don't have US citizenship so would need visas and do you have legally established PR so you can consent to medical procedures if they get ill or in an accident while there?

Why don’t you talk to your husband about him and your stepchildren coming over in the holidays. The rest of the time you can FaceTime regularly

You really cannot drag a 13 and 15 year old away. It would completely mess up the 15 year old's GCSEs, and if they are in state schools there is no guarantee that their school places will be kept open for them. For the sake of five months with their dad, they will cope fine. If they can come out to visit you at Christmas or vice versa, that would be a plus.

Doesn’t the 15yo stepchild have GCSEs this year so obviously he can’t just go to LA for 5 months. That alone should make you realise that it makes much more sense for your H and stepchildren to stay put.

Same. One parent and the other kids stays home for a month and the other parent goes with the child needing treatment. Parents swap places monthly by month. Least disruption for the other children and your husband.

They are very close to both of us and honestly they aren't children who can just go and live with one parent for 5 months.

Obviously they can and they should do exactly this.

This is what I find very hard to believe.
It's difficult without knowing what the issue is but I wouldn't automatically believe that there is only one (expensive) hospital in the world that can offer this treatment.
Sometimes hospitals in the USA say they have a miracle cure for a fatal diagnosis and people pay hundreds of thousands to go but sadly those cases don't always end well and it doesn't sound as though OPs son has a life limiting illness.
I wish you well OP you sound like a loving mother who wants to do the best for everyone but I would urge caution.
If you are determined to go with your ex husband and all three children I think you should come back to visit your husband and step children regularly. Presumably you don't have to be in the USA for five months constantly. With regular visits and zoom calls you will be able to keep in touch with your stepchildren and husband

Madness to uproot anyone bar the child and one parent with them, swapping about every few weeks if you must.

Imagine if YOU were the one needing treatment for 5 months, your kids would have to survive without you then. Plenty of parents go away for periods for all sorts of reasons. You aren’t thinking straight.

I don't see why all the children except the sick one can't stay where they are for such a short period and you and the boy's father do week and week about with him in the US.

This is no different than dozens of families have to cope with when children have to go to GOS in London because it's the only place that can treat their child and they live in, say, Edinburgh or Newcastle.

Taking a 15 year old to another country will be massively disruptive to their schooling. Your kids will cope - millions of people cope with separations. You and your xDH should swop in and out. Both parent do not need to be there - you have said it will be sorted. TBH sounds like you just want to be in the US medical system. Other than some very specialised cancer treatment (which it can't be as you have said they will be fine) the US is rarely the only option.

Yes your step children and husband should stay. You can maybe visit them or they visit you couple of times. Talk to them and explain and frame that they have school and their dad here so it’s best they stay and you visit.

Have you done your research and know for a fact this treatment is definitely not available in the UK? It sounds like some kind of elaborate scam by the LA clinic.

Only go with your DS. Your DH can hire help, your other two kids can live with your ex DH. They’ll adapt. You are making things far, far too complicated. They can visit in half term etc. Your priority is your boy. Other people are perfectly capable of organising around you.

Adding to the opinions saying not to take any of the kids. It will really disrupt their schooling, the US curriculum will be really different from the UK one, unless you’re able to get them into a school which follows the UK curriculum? It will put them at a big disadvantage for their GCSEs etc.

I would go alone and tag team with your exH, maybe do a few weeks at a time then swap.

I’m very sorry this is happening, and wish your DS a full recovery.

I think his father should go with him and you look after the other children. Maybe fly out for a week or two so he can see his siblings and you can see him too

You aren’t thinking clearly. Your plan is completely crazy and very unfair on the DC. Only go with the sick child. The other DC all stay at home.

I'm struggling to believe that there is a disease which could become life threatening if not treated, where treatment will take 4-5 months, but can't be done in the UK and isn't offered by the NHS.

The NHS has its flaws, but when it comes to life saving treatment for children it's absolutely brilliant in my experience.

In any event if you go you don't need to upload the entire family. It's not a family outing, it's a treatment for a sick child. You'll need to focus on that child not settling other kids into school and juggling their needs.

If their dad wants them to stay in the UK and can’t come himself then they have to stay. There isn’t really an option.

Makes plans for holidays and visits and do a lot of face timing it will be fine.

Also wishing your son the best recovery x