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

Noted. Bag is packed!

Alex is so well he doesn't think he's ill. I feel terrible having to remind him that he can't feel it because it is in his bones . Hospital tomorrow for the portacath and more chemo. My dad arrives tomorrow too.

I've cut his hair - actually he looks adorable

Horrible day. Surgery was predictably late, then when he came out he was screaming and crying. I had to get into the bed with him to calm him down as he had to lie flat for the chemo drugs in his spine.

They were then very worried about his low heart rate and an arrhythmia. So, trying to cope with all these people coming to look at him, take X-rays etc whilst lying down and not 100% understanding their Dutch was no fun at all.

He was very distressed too. So I was trying to calm him down too.

Eventually they called the cardiologist who said he wasn't worried at all and so we went back to the ward! 3 hours later...!

Poor love was starving (hadn't eaten since he went to bed last night).

Horrible.

Sorry to hear that you have both had such a hard day. Very much hope he feels a bit better now and is able to go home soon.

Im so sorry you and Alex had such a bad time today. Will you have long to stay in this time? Big hugs. Xx

Ack poor little fella. Horrible day, onwards and upwards x

I'm so sorry Twunk - it's just shit isn't it . The only consolation is that he is unlikely to remember any of this in years to come....I know that probably doesn't comfort you much at the moment. I hope Alex is feeling a bit better now x

Thanks all, he's finally asleep! I am looking forward to going home tomorrow. I know he won't remember it nocake but I'm not sure I will be so lucky .

I know Twunk - DS's consultant said pretty much the same thing x

Twunk, been offline for ten days (Wales on holiday but might as well have been Mars for all the phone reception I had!) and was thinking of Alex and you. Glad to hear that the drs are happy with how Alex is doing and that he is responding well despite horrible day today. I do hope tomorrow is better and the chemo is doing its thing.

Quangle welcome back from Mars!

MrsDeVere next time he goes to theatre I will ask the anaesthetist to give pain relief before he wakes, thank you.

Nocake I will remember everything I think. I had a hard time when he was born...but what did I know? This is taking it out of me like I never thought possible.

Good news though! Just as I was reaching a real low the doctors came in to tell me that his initial response to treatment has been "excellent".

I have to admit I cried. I didn't know how worried I was until they told me they were really pleased.

I've only just found this thread. I'm so glad to hear that his initial response to treatment has been excellent. You sound like you're being incredibly strong. Thinking of you and sending 'get well vibes' to Alex.

Wonderful news that his initial response is excellent - I'm not surprised you cried

Thank you Ebb - when you have a child with cancer you very quickly realise your life is no longer your own. I cannot make simple decisions about him without considering the impact. But then it also keeps you going because there is so much to do! Medicine 3 or 4 times a day (at least), hospital visits, keeping friends and family informed, then just living.

It was nice to shed happy tears today, especially after yesterday was such pants.

Wonderful news about Alex!!!! Woo hoo! What are the next steps then?

We had our usual blood tests this week and meet with the consultant. He was v happy with that progress but DS for some reason decided to faint. Twice. At the hospital. Never ever happened before. Obviously freaked us out. Dr did all that tests and said he thought he was just plain exhausted (very possible as he's not really had a rest since the summer hols started...). He's been at camp, because we both work full time.

Anyway we go on holiday tomorrow and I hope this means the start of some relax time... We are doing things like legoland etcetc but hopefully because its all fun stuff and with us it'll be fun and not too exhausting.

Whoops sorry to go on about me. I just wanted to say how very glad I am to see how well Alex is doing!

Oh goodness takeaway that would have scared the bejesus out of me too!

Pleased test results were good. Enjoy your time off. It sounds lovely.

We were supposed to be going on holiday next week - just down to my sister's in the south west of France. We were seeing DS1's best friend on the way down (they've moved to near Limoges for a year). Such a shame, still - having a child with cancer means people throw holidays at you, though none of them offer 2 weeks in the Caribbean....

Next steps are more chemo then another bone marrow biopsy on day 33. Then we have lots more chemo in month 2 before it is completely decided whether he is standard, medium or high risk. That's "induction" finished.

Then comes "delayed intensification".

milestones - it's milestones. you just need to get to the little milestones... big hugs

We've hit a year on drugs - consultant said another year, but will concede to what GOSH suggests so my next milestone is getting to October and going to London. I'm hoping they'll wean him off it....! :)

I'm not around for the next two weeks and will prob not get to go on MN or any internet... but fingers tightly crossed for you, Alex and the family.. xx

I've been very down. I know why, but that doesn't help. Today as been particularly bad. Alex is fussing for food every 20 seconds, I'm exhausted and aimless. I want to do stuff, but even making a sandwich seems like an impossible task.

My mum arrives tomorrow, and I'm so pleased about that.

Thoughts are with you Twunk. This must be so unimaginably hard - three weeks ago we were discussing what might have been post viral symptoms and you've been plunged into this other world that you didn't ever expect to be in. I can't imagine what it must be like. But I can understand why you might feel exhausted and aimless - everything that your mind is having to process at the moment means a sandwich is just too big an undertaking. Hope your mum arriving helps. x

So glad your Mum will be with you today - you'll have someone to take care of you too.

Thanks all. Mum is here and it's so lovely to see her. Alex has been cheery and has been playing (and eating!).

I'm doing a little better today but yes it's hard to stay positive. I am just so tired I could sleep all day, and then I can sleep at night too.