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Original poster

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

368 replies

Twunk · 25/07/2013 10:47

I honestly think I am losing the plot. Sad

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

OP posts:
Are your children’s vaccines up to date?
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Caster8 · 26/07/2013 20:05

Aah Tabitha. Hope your son enjoys school in September.

inneedofrain · 26/07/2013 20:18

Twunk

I don't think there is a mum alive that would rather take on all the treatment in the world than watch there kids going through it

I am unbelievably sorry that Alex is going to have to face this but he is going to have the support and l

malteserzz · 26/07/2013 20:21

Sorry to hear this twunk thinking of you all x

inneedofrain · 26/07/2013 20:27

Twunk

I don't think there is a mum alive that wouldnt rather take on all the treatment in the world than watch there kids going through it

I am unbelievably sorry that Alex is going to have to face this but he is going to have the support and love of his wonderful family.

At the moment you must feel like your world has been turned upside down, it such a shame that for the moment you don't have any real life support. I am sure your family and friends will rally round ASAP and give you both practical support and a emotional support

Until then I hope it offers a very small amount of comfort to know that people all over the world are thinking of your family and especially Alex we are sending positive vibes and prays for you all

Thinking of Alex and your family and wishing you all my strength and sending you all my love and hopes for a good prognosis

SconeInSixtySeconds · 26/07/2013 20:30

Twunk, I am so sorry to hear about Alex. Fingers crossed that the hospital will get him feeling well and better soon. xx

Nocakeformeplease · 26/07/2013 21:02

Oh my darling. Six weeks ago we were where you are today - our gorgeous four year old was diagnosed with a kidney tumour (Wilms). There is nothing that can prepare you for that sort of news. For days I expected to wake up and find it had all been a terrible nightmare. At that time I really thought I would never smile again.

I spoke via PM to a lovely MNetter who said something that stuck with me and really helped me in those early days - she said "please know that this is probably the worst stage". And she was absolutely right. I'm not going to pretend its all a bed of roses now, but in my experience, once you know for certain what you are facing and what the treatment plan is, it's much easier to deal with.

You will get through this. You will find a strength you never knew you had. DS's consultant assures me it is much more traumatic for us as parents and that at this age they are unlikely to even remember much about it (bar remembering being in hospital a lot). Even six weeks in he has astounded me with his bravery and acceptance. I am so bloody proud of him.

We are all here with you every step of the way.

Tabitha - its lovely to hear how well your DS is doing Smile

minmooch · 26/07/2013 21:06

I am so sorry to read of your DS' diagnosis. It is very frightening indeed. My DS was diagnosed with a brain tumour just days before his 16 th birthday, nearly two years ago. It is a long hard journey but he is still with us. Cancer is so horrid but desperately so when it hits a child.

There is a support thread on here titled Children with Cancer. There are other parents there whose children are going through treatment for various cancers. Please join us if and when you feel like it.

I hope that Alex's treatment starts soon and that it is gentle on him. Xxx

Queenmarigold · 26/07/2013 21:10

I know how you feel.
Pm me if you need to talk.

You can and will get through this- and so can he. The initial shock and next few days are tough, but you will settle into a different routine. Make sure you understand the therapy plan and protocol.

tinypumpkin · 26/07/2013 21:12

I just wanted to post and say that I am keeping you, your son and your family in my thoughts. I have no wise words but I have been there when as a parent you hear news that is just indescribable (not cancer in our case).

I hope that you can feel the MN support around you and that you have some great medical support when you get transferred.

Sparklyfeet · 26/07/2013 21:13

I'm so sorry to hear you are going through this. Such devastating news for you. Thinking of you and sending lots of positive vibes and strength for you and Alex in the weeks ahead. X

sybilfaulty · 26/07/2013 21:13

So sorry to hear this. Thinking of you

Whatevertheweather · 26/07/2013 21:17

Oh Twunk, another hand to hold. I'm so sorry this is happening to you, Alex, ds1 and dh. Hold each other close. Alex will amaze you I'm sure. And bloody well done you for keep going back, you played a big part in making sure it was diagnosed as early as possible xx

clippityclop · 26/07/2013 21:23

Sending prayers and best wishes to you all. Hope you're able to rest tonight.

SuzySheepSmellsNice · 26/07/2013 21:34

You should be very proud of yourself for getting him proper testing and medical attention, as now he has access to the best possible treatment. He is very lucky to have you. Lots of love to you, your family and your brave little boy Thanks

idiot55 · 26/07/2013 21:44

You have had some lovely words of support, I'm another one thinking of you. X

Howstricks · 26/07/2013 21:50

My love and prayers to you all. Hang in there.

Original poster
Twunk · 26/07/2013 22:29

Nocake thank you for taking the time to post when going through your own son's treatment. I hope he continues to progress well. I really do appreciate the encouraging words.

My sister is making plans to come soon, and I will ask my parents what their plans are tomorrow. My mum nursed my sister through some horrendous breast cancer treatment only 2 years ago, so I'll bet she's in a bit of a state not wanting to go through all that again.

Alex is now sleeping peacefully. His fever has subsided and he seemed a bit happier before bed.

We're all bunked up together and I'm so pleased we are. DS1 was very happy that we didn't notice all the biscuits he ate, plus he got to play with the uppy-downy hospital bed he's sleeping in. DH is, apparently, defeating the Greeks in "civilization" Hmm on his MacBook.

I'm trying to stay positive in between bouts of numbing despair. I'm frightened to sleep because I will remember when I wake up.

OP posts:
Original poster
Twunk · 26/07/2013 22:30

And I appreciate every bit of MN love and best wishes, thank you all x

OP posts:
BeaWheesht · 27/07/2013 00:33

Oh Twunk I'm so sorry you must be in absolute shock. Well done you for pushing for a diagnosis though.

Lots of love

MrsFrederickWentworth · 27/07/2013 00:42

Poor poor you.

But well.done for spotting it and insisting on addressing the issue. And I am sure Dutch hospitals will be brilliant.

Will think of you.

lisad123everybodydancenow · 27/07/2013 01:36

This reply has been deleted

Message withdrawn at poster's request.

Nocakeformeplease · 27/07/2013 01:55

I remember saying exactly the same thing about not wanting to go to sleep because I didn't want to forget and remember again in the morning.

I'm so glad you are all together tonight. Cling to each other and your friends and family for now. Mine literally pulled me through those first few dark days. I wish with all my heart I could make this bit easier for you.

Children generally respond very well to treatment and iim sure your gorgeous boy will amaze you with his strength and resilience. It sounds like this was caught very early too which is really positive. You will get through this - I know that is probably hard to believe now but you will.

I hope you get some more answers tomorrow. Thinking if you all xxx

bamboostalks · 27/07/2013 08:31

So very sorry to hear this Twunk. All your fears. I wish you all the best.

Original poster
Twunk · 27/07/2013 08:45

This morning he's in a good mood and has eaten 2 sandwiches! Smile

His hand hurts so he's using the hand with the canula in to move everything - I had to feed him his sandwich. His hips are also painful.

But he's been playing with my bed and now he's playing with his cars.

OP posts:
QOD · 27/07/2013 08:55

Ah I was reading this and thinking glandular fever etc etc and then my heart lurched.
I'm sorry, I hate that this happens to children. Sadly there are too many families on here affected, but we are all here for you and each other x

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