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]

He's back by the way - he'd just gone upstairs

[ajandjjmum]

Trouble is Twunk, men often seem to struggle to talk to others about anything that's upsetting this - and his worry about Alex is clearly a big upset. Maybe he's just allowing himself to be down, now that he knows your Mum is there to support you? Does he have any close friends you could talk to, and ask them to meet up with him for a drink, or something? He might feel that he doesn't want to open up to you too much about his worries - as they're your worries too.

As you are, he needs to draw on every bit of support available.

Glad Alex has been bright today.

[HaveIGotPoosForYou]

I am so sorry you and your son are struggling with this.

I am thinking of you and hope the rest of the treatment goes just as well as it has so far. :)

He sounds like a lovely little character!

[LoveSewingBee]

Hope you get a better night sleep today! Bet your sons had a wonderful night though, nothing beats sleeping in mummy's bed I sometimes think ..

[Ebb]

How long is your Mum staying? Is there anyway you could afford a nanny/mothers help to give you practical support when your Mum leaves? I can't begin to understand how stressful it must be for all of you ( although my DS,5yrs, has a heart condition but hasn't required any treatment - yet. ) I hope Alex continues to improve and that DH gets some support from his boss and best friend. He may open up more to his his friend. I can imagine him not wanting to stress you with all his worries about the situation on top of your own thoughts and feelings if that makes sense?

[Twunk]

We're going to get a cleaner, just once a week. I think we'll cope otherwise but I think there'll be a lot of favours to be returned!

Mum is here until the end of the week then dad comes Tuesday. That takes us to the end of the summer holidays.

I had some good news yesterday - spoke to the (really very kind) consultant - she said that his bone marrow biopsy was really very good - 0% blasts visible under a microscope

We won't know his "risk" level until 12 weeks into treatment, but high-risk isn't really at all likely now.

I slept much better last night, but actually felt better yesterday than I do today. Perhaps I am sleeping too much.

[Quangle]

Oh gosh that's great about the blasts (although I have no idea what it means!)

I know it's a long, horrible road but it sounds like you are in good hands and have lots of love around you.

[ChickenLickenSticken]

Sounds like good news.

I'm envious of you and your DH is separate beds as my DH is a loudly snoring fidget

[Twunk]

Yes chicken it's the secret of our happy marriage only it's me who snores

[Twunk]

Quangle briefly, the blasts are the cancerous cells - they are immature white blood cells that take up all the room in the room in the bone marrow, leaving no space for it to produce all the other blood cells you need. And it hurts too because they don't stop multiplying and it becomes horribly crowded.

[InSpaceNooneCanHearYouScream]

Hello Twunk, hope you don't mind me commenting, but I just wanted to say please ask the doctor for help coping if you need it. I recently started anti-depressants after years of horrible anxiety about one of my children, and they have helped me enormously and I now feel much happier and able to cope. Good luck

[Twunk]

I have PMT now - can really feel it. I am even more tired than I normally am at the moment, and even more snappy.

Today is one month since we were given the initial diagnosis. It's been such a terrifying month, and I still feel like we are living under siege. But I am getting used to the "new normal" and also thinking ahead a little bit.

DS1 starts back at school on Monday. I've told a few parents (it is a small town and you bump into people) to make life a bit easier. Hopefully the school will read my note before Monday - as Alex was supposed to be starting at it will break my heart if his chair is there.

[Twunk]

Space thank you. I've spoken to the dr recently as she phoned to see how we are. I'm on 10mg of paroxetine anyway, so we'll see how it goes and if I need more.

[InSpaceNooneCanHearYouScream]

Oh good- my starting dose didn't really help me so my doctor doubled it ( 40mg of fluoxetine) which has made all the difference.

[ShiftyFades]

Thinking of you Twunks, you are coping brilliantly, Alex is lucky to have you x

[Twunk]

We had another GA at the hospital yesterday but he was just a day case - he had his first bone marrow taken for an "MRD" test which will determine what course of treatment he has after 21 weeks. I won't get the results until the second one at 12 weeks.

The next phase of treatment starts Monday - I'm to be at the hospital 8am which means missing taking DS1 to school on the first day back

Depending on his blood tests he will or won't get this treatment, which means I may also miss picking up DS1 too.

[Twunk]

I've had a few messages with personal details removed, in case anyone was wondering.

[takeaway2]

Hi Twunk
Been away on holiday but so pleased the drs sound positive.

It's difficult when you have another child and you feel torn to want to do things for them too. Our family split up briefly when DS was in gosh as we don't live in London. So dd was rather confused as to where I was (or perhaps more importantly where her boob was!!!) .

Hang in there. Do you get respite time? X

[Twunk]

Hi takeaway! Did you have a good holiday? How is DS?

Today was the long day but at least they could start treatment. Woke at 6, left at 7, hospital by 8 and straight to lab for blood test. Then he had a drip that lasted from 10 until 7. I had a half hour break when one of the specialist play workers came and spent some time with him.

DH arrived 6.30pm. He left to get DS1 in the bath and Alex and I finally got home 8.30 zzzzzz

DH picked up the new (2nd hand) car. It's dull but it will do the job.