Please please help with my son's never-ending illness

[Twunk]

I honestly think I am losing the plot.

Brief synopsis

DS2 has just turned 4. He was premature and had all sorts of issues in the first 6 months but has been healthy since then. He was breast fed until he was 3 and had normal run of short illnesses.

June 10th he developed a fever. His throat hurt and muscles ached. The fever lasted about 5 days. He recovered but looked pale and tired.

A week and a half later it came back - much worse. I took him to the doctor because he had a lot of pain in his legs and couldn't walk/stand. He had blood tests and I was called and told to take him to hospital, they thought he had leukaemia. Thankfully after a couple of retests they concluded it wasn't. He got better and started walking after 5-7 days.

One week later he got the fever again, but this lasted 48 hours.

Another week and he got it again. Stopped walking and hasn't done since. He fever lasted about 24 hours. This was the weekend before last. However, he's looked much better and been laughing and playing and crawling about. Eating normally too.

This morning he has another fever. I've made an appointment at the doctor but I am just at my wits' end.

His blood tests showed that it is probably a virus. He's anaemic (blood iron fine). Anyone had/heard of this? Please help I'm close to going crazy.

Thanks

Twunk......ds recently had surgery that lasted that length of time, so I can empathise with that. Can you get out for a walk or something?

Nocake is the one with the long surgery - we've "just" had a biopsy and LP. Well over an hour since I was called down he is fast asleep! I really need a pee now.

I actually don't know what outside looks like any more. It's still there isn't it?

starfish hope your DS has made a good recovery.

Can you ask someone to stay with him whilst you go to the loo?

The outside is still there. If you like I can google it to double check though? . Point out what you can see from the window?!

MsGee I can green things, moving things with wheels and boxes made of bricks, concrete and glass.

I did actually run to the toilet and he didn't wake for another half hour!

He's fine, a bit spaced but fine.

Fingers crossed for you for the results xxx

I wish your beautiful boy the best possible test result, Twunk.

My thoughts are still with you, Twunk... Will keep my fingers crossed for good test results.

It's definitely ALL which is probably the best news we could have expected. This has been a very very hard day and my heart has broken in several places.

Treatment has started this evening. And so it begins.

Twunk, that's great - my dad had AML and I remember reading up on it. Only great in the given circumstances of course but overjoyed for you. Hopefully all will be well xxxxxxxt

I'm so sorry that its turned out to be ALL but I'm so pleased they are starting treatment tonight. Hang in there. Have they said anything about timelines of treatments??

Just wanted to add my support here too. I hope the treatment is going ok tonight. You know where I am. xxx

Oh my lovely... I'm glad the news was as good as could have been expected, but i know what a strange, painful mix of emotions it brings (we were in a similar situation with DS's diagnosis).

I hope Alex tolerates the treatment well.

Thinking of you and with you every step of the way xx

We have just over a week of steroids and then a blood test to see how the leukaemia is responding - I think we'll have a strong indication then on how treatment is likely to proceed.

Then chemo starts and we can go home. DH is re-jigging the rooms so Alex and I (or DH) can stay in together (it's also a room that we can keep clean easily).

DS1 spent the day with a friend and seems all the better for it.

Our boss has leant us his car - and is going to get me a company car for at least 2 years. He's been brilliant, has quite surprised me with his kindness and generosity (though is possibly terrified we'll head back to the UK).

And in fact everyone's generosity has been amazing.

Alex is still awake. I can't be bothered to fight him.

Yes they just said they "might effect his mood" but yes I think that might be a slight understatement.

DH is stocking up on food.

I'm dreading it tbh.

Hi, hope you all got some sleep in the end.

I'm so glad that DH's boss is being so supportive, I've been hoping that they're being decent but the car is very kind of them.

Much strength for today, hope Alex responds well to treatment and isn't too ratty. Make sure you're eating some is the food stockpiles too. xxx

Ok I'll try not to dread. It's all so overwhelming I'm scared of everything. I'm living in the moment but my mind does wander if I let it.

I think it's good to be forewarned but sometimes I quite enjoy ignorance.

I asked our boss about a car. He said, let me know if there's anything I can do? And I thought fuck it, there is. DH would never have done it so I was pleased I did. If I get a company car it will cost maximum €130 a month, we won't have to worry about petrol, road tax or maintenance and it will be new and (hopefully) reliable.

Blood test this morning went a lot better but his blood is a lot thinner owing to hyper-hydration so he bled quite a bit. I'm not great with blood. but we both did a lot better this time.

Hang in there Twunk. You are doing ok!

Re blood tests I don't know whether they try and distract Alex? At our local hospital's children's ward they tend to put the emla cream for an hour then take the blood. When they are taking the blood they seat DS on me/dh and there's a video playing on a tv at his eye level. And we hold him, the person he's sitting on has a big book (like a where's Wally) to keep him occupied and when they decide which arm they'll take it out from, we shift the way we hold that book so it blocks the view - does that make sense?

Good luck.

I'm afraid I don't have anything constructive to offer, other than my thoughts and prayers. I'm lucky in that I don't have any experience of what you are going through, but I couldn't just read the post and not send my support.

If there's anything a stranger can do from afar, please let me know. I imagine Holland is pretty good for English books and DVDs but if you want any kids magazines (or grown up ones in case you have waiting to do) I am happy to send a parcel from England. Any favourite English sweets or treats too.

Delurking to add my voice to the chorus, i can't begin to imagine what you are going through, but i must say you sound amazing and strong and Alex is lucky to have you in his corner. I hope that treatment is gentle on Alex (but tough on the cancer) and, well, just bearable really. Thinking about you. X

Hi Twunk, ALL is the type DD had all those years ago, the treatment is longer but not as intense as AML I seem to remember. We were in hospital for about 3 weeks to start with, then had day visits etc, so hopefully Alex will respond well and you can be home in a couple of weeks.
Don't be afraid to ask questions, I remember asking if my then 2.4yo would ever be able to have children because of the chemo (answer - no more unlikely than anyone else).
Has he had his Hickman line put in yet? It does make it a lot easier than having cannulas put in. Sorry, rambling a bit, hearing about Alex just takes me right back there. Be strong. You will get through it. xx

Takeaway yes we had the full distractions on - one of the child development people (who is impossibly pretty and nice) was talking, playing, distracting. We now have a reward chart and it helped with the oral medication earlier. He actually helped the nurse flush out his cannula!

Today we had positive news (which I'm cautious about) that the lymphocytes in his blood are down 50%. Hopefully that means it will respond to treatment. The (junior) doctor seemed pleased anyway.

My parents are in NL. DH has just gone to let them in to the house and will bring my mum back if she wants to come.

My period has started. A week early! That's what proper stress does to you.