The thread you neither want to join, nor leave.
We send our love to Minmooch whose son Will sadly died this week. Min, we hope you feel able to contribute to this or future threads when you feel able.
My son Alex, 4, was diagnosed with Acute Lymphoblastic Leukaemia on 26 July last year. I don't think anything can describe that moment when your world falls apart. You think of suffering, pain, and the very real possibility you may lose your child. Mumsnet has been a wonderful source of support and I have "met" some lovely people through these threads.
If you are in the same situation as us, or wish to show support please do join us. Sometimes people have questions on how to support a family who have just received a diagnosis - we are very happy to help.
Much love to all xxx
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Children's health
Children with Cancer
Twunk · 28/02/2014 13:39
Finding things hard today. I is back in hospital with a neutropenic fever. I know for most of you this is a relatively normal thing- we haven't had it before. His bloods already came back with an infection 
and the consultant was talking darkly about taking his line out again.
His dad and i take turns to stay over, so we can keep in touch with the other children. I'm at home tonight. My god i miss him. Everywhere in my house there are reminders of him and his condition- his feed pump, the towels all around the bed in case he's sick at night, the meds, the testing strips, the tape.
Week 14 of 34. I don't know whether to wish it away or wish it went slower, so i have him forever.
Thinking of you all and of better times ahead.
Xxx
Oh Unbuckle the one night DH took Alex to hospital I found it really hard.
Glad you got a good night's sleep.
And you never get used to neutropenia.
Alex has completed his second week of school 
. He's doing really really well. He has spots on his face (like a teenager!) which must be the oral chemo. The only other sign is leg weakness, and I don't know if this will improve whilst he is still on treatment. Something to ask the doctor when we see her Monday.
Hugs to all xx
Happy Mothers' Day
I hope you've all been okay
It's not mine - it's in May but I sent some flowers and a card to my mum.
Saw my GP today for the first time since that day I saw her with Alex and she sent us straight to hospital. I finally had the chance to thank her and also tell her how well Alex is doing. I only cried a bit.
DS1 is being referred to an audiologist owing to problems he is having with his speech. After 3 years I am finally being taken seriously! Of course suddenly he's made another leap and is a hundred times clearer than he was, but even if it's going to be something that will sort itself out with time, I'll be pleased to finally have an expert opinion. It's all been complicated by the bi-lingual thing and us speaking English at home, but no other expat child has had issues with the language as much as DS1.
Anyway, gives me something else to worry about 
Woah! Back up there! You have TWO sets of twins?
I am nominating you as "person of the year"
Hi lovelychops
My DS was neutropenic for an awful lot of his early treatment and had many delays due to it. He had a period of about 4 weeks were he didn't get above 0.1 neutrophils. The excitement when that 0.1 appeared was immense!
It is totally normal and is a sign that the chemo is doing it's job - if the blood counts weren't affected by the chemo, they would be scratching their heads a little. I can remember the worry though. Obviously be more aware of temperatures, but it really is part of it all really. I was planning on writing something a bit more profound then, but completely forgot what I was saying mid sentence! 
Oh! When DS was very neutropenic and in the intense phases, we avoided places like supermarkets, cinemas, shops etc. Now when he is neutropenic, because he is otherwise well in himself we pretty much continue as normal - he goes to school, swims, supermarkets etc.
twunk I am AMAZED by Alex's fantastic day!! F has now decided he wants that for his wish, even though he hates the film!!! I am so glad he had a lovely time xx
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Twunk I'm really glad Alex enjoyed his day. I know what you mean about never thinking you will need to use it. It's one of the charities I have had a direct debit with for years, ironic that they will be granting D a wish soon. I delayed sending the forms for such a long time, I don't know why really, it's a bit late for me to be into denial!
Hi lovelychops I'm sorry your not coping so well at the moment, it's still early days so go easy on yourself. The neutropenia is quite scary to begin with but as Tabitha says, it to be expected unfortunately. It is a real balancing act between avoiding unnecessary risks and helping them lead as normal life as possible, and one that I struggle with, especially with regard to school (I know your DD is too young for school at the moment but just using it as an example) D has got so much out of being there, I think it was the right decision although a very difficult one at times.
Hope things are good with you and F Tabitha x
unbuckle I hope little I is doing well and has avoided any more hospital stays. How are you feeling now?
mmmmsleep so glad you'll be home soon, can't wait to catch up when you've settled back in.
D had his last chemo 2 weeks ago. Exciting but quite frankly terrifying to think there is nothing to stop the cancer coming back. He has an end of treatment CT scan in May - we don't get the results for a week, not looking forward to that wait 
. I'm struggling a bit with trying to return to some sort of normality when the threat of relapse always looming. How have you coped with the end of treatment Trazzles?
Much love to everyone else I've missed xx
Hullo lovelychops. I remember when Alex was neutropenic and I was also very anxious. It was a real low point for me too - suddenly I was terribly frightened after having calmed down a bit finally.
All I can say is that it does mean the chemo is doing its job. Alex did get ill, and that was quite scary, but they responded very quickly at the hospital and he was much improved even by the next day.
I've had highs and lows...highs with good news, lows with extreme stress or grinding boredom. Changes as well have been hard.
Nocake Alex hasn't finished treatment but the heavy hospital and IV chemo bit has ended (which is why we've done make a wish now). You think you're going to be delighted, and I was, but it leaves a worry and a hole. Maybe it's a bit like Stockholm syndrome but I got used to the constant support from the hospital and suddenly we're on our own!
I also worry that the low level of treatment he's getting now it isn't enough, even though it's good really that it's far less toxic than he'd otherwise be getting.
The wish day was fabulous though! We were collected in a limo, then they sat in a tractor as it was driven, then taken to the train station in a truck, got to check real tickets of real passengers on a real train, then sat with the driver, then had lunch at McDonald's after making a burger and getting a milkshake, then a ride in a Campervan and a beetle, then a ride in a boat, and THEN a race back to our house in a Lightning McQueen to a finish line and a Piston Cup!
The police even took part and pulled McQueen over for speeding after that giving us an escort home 
.
Big love everyone xxx
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