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

Thanks all.

He's really struggling to walk but bless him he's trying. A few wobbly steps here and there.

The junior doctor came in this morning and said everyone is in love with my sons as they are so cute together. I must admit I've given way to maternal pride.

The café in the lobby does fresh orange juice and it's delicious. Plus I get to ask for "sinaasappelsap" which is one of my favourite words .

Popping in to see how you are all doing. How lovely that everyone is in love with your sons, they both sound amazing.

Glad too that the doctors are finding this tediously familiar, that is all good :)

Keeping those positive vibes coming x

Today is Alex's first (and second) chemo . At the end of the day we may be able to go home .

Hope all goes as well as possible today and that Alex is able to cope well with it. How will they give the chemo to him?

Also very much hope he can go home tonight.

Fingers crossed everything goes well today.... big hugs xx

Thinking of Alex today - and fingers crossed that you can 'escape' tonight.

Hope it all goes smoothly and you manage to get home.

It's not going smoothly - an anaesthetist was required to find a vein (after several traumatic attempts in the department) and we're only onto drug one right now.

They've not managed to get blood out either.

So looks unlikely we will escape today.

:( sounds hard Twunk

hope you escape soon

I'm digging a tunnel...

WE'RE HOME!!!!

I was beginning to get used to the idea of being incarcerated for another day but they said we could go after the chemo.

Alex is doing well and seems quite on form.

I've found out we have the Portothingy fitted next week (not a Hickman line).

Back Friday for second dose of chemo. Go in Tuesday for line, lumbar puncture and biopsy.

DH is just putting the boys to bed, because he does that normally. I'm a bit overwhelmed and everything is a bit loud and busy (mum and dad are here) but it's good to be back.

Glad to see you are home and all doing so well. I cannot begin to imagine what you are going through but you are in my thoughts. Hope you manage to get some rest tonight.

Lovely to hear that your back home and that Alex is in good spirits. How far are you from the hospital?

DS has a port-a-cath (we weren't given a choice). He does still get a bit upset when it is accessed but is getting more accepting of it week by week. The nice thing is he can have a bath with DD and we even went swimming on Friday as his blood counts were good.

I hope you have a nice couple of days at home before the second dose on Friday x

It is weird yes. But I was worried it was going to be weirder than it is.

I've had a gin and tonic and a glass of white wine and a helping of fish pie.

We're 20 minutes from the hospital. Even less in the middle of the night. So glad we didn't opt for Amsterdam as more like 45 minutes.

Welcome home, Twunk & Alex

Thanks MrsDeVere - it was just so lovely to see him behaving like every other care free 4 year old for a bit .

I have to be honest that when we first got home after two weeks in hospital I actually felt a bit odd, almost a bit flat. I think I expected to feel over the moon but when it came to it i felt a bit nervous about leaving the ''safe' environment of the hospital where they checked on him every 4 hours. It soon passed though and I've even managed to stop taking his temperature every 3 minutes

I'm glad you're not too far, I think that really does make a difference.

Not much! we have three now and invariably they all give different readings. The most recent one was a Braun one recommended by the hospital. It is a bit more reliable but still often gives different readings minutes apart.

They use the ear thermometer at our local hospital but I'm sure they must have some disposable ones - will ask then next time we're there.

Hope Alex is doing okay and you're enjoying being at home twunk - it must be lovely for DS1 too.

I have a "brother Max" thermometer which actually seems ok. Quite impressed with it so far - it's been right when he's been checked at the doctor subsequently.

Well Alex has had no noticeable reaction to the chemo. He's sleeping, eating, playing - just a bit tired.

Fecking pharmacy had not had the fecking fax from the fecking hospital so I was having to sort that out earlier. Hospital don't give the drugs themselves but they had given a couple of doses. I got very annoyed and quite forceful (for me) with the ward as the pharmacy did not have prednisone, or either antib. We sorted it out and I got things delivered to my house in time. But not a fun start to things.

Mum threw a wobbly earlier. She's great but she does get oversensitive and it's a bit exhausting when you're a bit of a state yourself. Both me and dad said (separately) "this is not about YOU!". Dad never says stuff like that.

She did apologise. We kissed and made up but really...haven't I enough to cope with?