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

Nocake I was terrified of leaving the hospital. It was safe, and I didn't have to face my house (my "old life") with all this fear and anxiety. I cried to the nurse that I didn't want to see my neighbours and I don't want pity. I know it will become obvious when Alex loses his hair, but I will cross that bridge when I come to it.

Crikey, I saw this thread last week and meant to come back to it so added it to my watch list.

Sending you my thoughts and best wishes

Sorry to hear about your mum - I'm sure she didn't mean to, but the last thing you need is anyone adding to your problems at the moment. It is all too bloody draining without having to tread on eggshells over other people's feelings. Hopefully she will think twice next time.

I remember saying exactly the same thing- that I didnt want everyone pitying me. For a good few weeks I just couldnt face/didnt want to see anyone other than very close family and friends. I actually felt quite introverted which is not like me - I think I just needed time to process it myself before I dealt with anyone else. Even now i cry every time I see someone for the first time since finding out - I went to football on Saturday and the poor men in the pub didn't know quite what to do when I started blubbing!

Actually though, in the main people have been wonderful. I hope you find the same x

Thanks flat (great username)

Nocake poor man in the pub!

I feel like I should be wearing a sign. I feel irretrievably changed...a bit like when I got married, or had DS1. I've left behind the me I was.

Maybe that's a tad melodramatic, but maybe not.

It is probably meant with the best intentions, but I would find it intrusive too. Most of ,y friends have made appoint of saying thy don't expect a response and I appreciate that. I always reply but sometimes I cannot face doing so immediately. As for going on about her illnesses, you are def not being unreasonable. Of course she is still going to get fed up about things, but it is insensitive to bend your er about them at the moment. If it makes ou feel any better my step mum rang the other day to see how DS is and then spent the rest of the call telling me how she is going though hell with her mobile phone insurance as thy wont pay out of a new phone.... If only.....

How are you feeling today? x

You're getting some good advice here Twunk, though it's dreadful that so many on here are able to talk about their first hand experiences.

I know what you mean about feeling irretrievably changed - I can relate to that after having ds1, and especially when I retuned to work. This is another monumental event in your life and that of all of your family members. It is bound to have a profound and lasting effect on you.

Still thinking of you.

Xx

Just wanted to add that it's totally ok not to answer text messages or fb messages. Having said that a couple of 'friends' have distanced themselves and it maybe because we didn't reply... Or we haven't had time to visit/meet up.

Dh's attitude is - well it goes both ways - if we don't visit they can always visit us. And if they are real friends they'll totally get it. Thankfully most of our friends have shown that they are real. And those who have buggered off.... Well they aren't missed.

Thank you! You start to doubt yourself.

Back to the hospital tomorrow, for chemo session 2 - Asparaginase (which is near impossible for me to say in Dutch).

Today has been good, the boys went to a playground then

...then we went to McDonald's. lots of hand-cleaning etc but I was otherwise calm.

Argh!! Chemo didn't happen because even the anaesthetist couldn't get a needle in this time. She said there was only one good site left and she didn't want to risk it. So my poor steroid-fueled boy is now nil by mouth until they can knock him out to do it.

All done.

His blasts from day 8 were 0%

But just as I was celebrating that news the nurse came back and said he needed a transfusion (funnily enough MrsDeVere I did think "hmmmmm he's looking a bit pale" this morning).

So we're here a while.

That is great news .

Shame you cant go home now but I hope the transfusion perks Alex up x

We got home at about 9.30 last night - so a pretty long day.

2 things I've learned

1. always take hospital bag even for a short visit
2. put phone charger in said bag

We all slept very well and Alex is walking so much more. So he was just knackered really.

Just catching up on things.

You sound so very strong, I know it probably doesn't feel that way but you really are - I hope that doesn't sound patronising.

People (myself included) will ask how you all are but anyone worth their salt will understand if you ignore questions or communication in general - you need to focus on the important shit.

I have no idea what you are going through bit it's definitely not melodramatic to feel you've changed. In my own (non comparable) experiences I went through a period where I felt very detached from people - as if the world was divided into those who had experienced the same thing and the rest. I did feel angry too at the rest of the worlds lack of understanding. I dont know if that is helpful to share but just wanted youto know you are not being dramatic.

Just read this thread and wanted to let you know how much something you wrote resonated with me. My DD2 doesn't have leukaemia but has a life limiting genetic disease, she's almost 18 months old now. I just welled up when I read how you said you had irrevocably changed - I just completely understand. It's like you have to say goodbye to the person you were and become someone you never thought you could be. I saw somewhere once that you never know how strong you are until being strong is the only choice you have.

Anyway, thank you for putting into words what I have been feeling for so long. Truly hope that Alex continues to do well.. Thoughts are with you and all that! Know I shouldn't but wanted to send a (hug) so I have! :-)

A bit slow in catching up but I understand about being changed forever. Different circumstances (this is not about me!) but what you said makes perfect sense.

Catching up here too and sending much love to you all. x

((((Twojumpingbeans)))) I'm sorry you know how it feels.

We had a lovely time today - been to the Euromast in Rotterdam and it was nice to get out the house.

I'm obsessing over cutting Alex's hair, it's pretty long and I keep thinking it ought to be short before it falls out. He doesn't want me to .

It doesn't matter really, I can't bear it to come out and really it just doesn't matter.

I'm so glad you had a lovely day.

I think your feelings about Alex's hair are very natural. Of course in the scheme of things it doesn't matter but it upsetting because of what it symbolises I think. I found it very upsetting when it first started but I honestly got over it very quickly though. He still has a very very fine layer of fluffy hair - he looks like a little chick! DD (15 months) loves rubbing his head! We did chose to get it cut very short when it started falling out but then it was already pretty short to begin with. The strange thing is that although he has noticed it, he has never questioned it. I think he thinks she just cut it very short the last time - it's a wonder he doesn't want to sue! None of his little friends have commented on it either which also surprised me.

Very good advice from MrsDeVere (meant to do this after the first admission, didn't realise we would be back in within 12 hours so hadn't got round to it!). It just takes the pressure off when you're rushing around trying to get everything together. I have the basics in the bag and then a list in the bag of last minute bits I need to grab (charger, DS rabbit etc). And touch wood, since I packed it, we haven't needed it!

I third the pre-packed bag - it's also a good idea to take it with you to the hospital when you go in for seemingly random appointments when there's no reason to keep you in - you never know when he might have crazy potassium levels or something and need to be kept in.