Children with Cancer

[Twunk]

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

Hey unbuckle sorry you're in hospital, and how sad no siblings are allowed.
We're still in hospital too. It's been a week today, think we'll be here a few days more. At least it's quiet on the ward...

I hope everyone gets to go home very soon. Big hugs all round xxxx

Good news, they will let I home in between ops! So he should be home tomorrow. The infected line is out, finally. So it has been a happy easter.

How about you lovely - any closer to discharge?

Great news unbuckle. Hope your hospital stay wasn't too unpleasant. Glad the infected line is out.

We're still in. DD seems to have turned a corner today, so fingers crossed. I'm trying not to getting my hopes up though. Temp has stayed down since last night, so we'll see how tomorrow pans out.
This stay has been our longest yet. I've found it really hard mentally. We've been on a ward and some of the other families have been so draining... It's probably a thread on its own though!

Anyway. Hope everyone is good.

Oh that's good news unbuckle, something at least.

lovely is he having his line in this Wednesday coming? Or has he already started chemo? I hope the temps are nothing serious.

We were in for Easter last year and I remember being so disappointed at everyone else spending a lovely long weekend with their families while J and I were stuck in an air conditioned room... He was in protective isolation then too so DD was banned. It is really hard. It's just another shitty thing in this whole shitty situation.

I hate the way cancer invades everything, every part of your life. I found out this week that I will have to be demoted at work for a while come the end of the year because I have a special qualification to supervise others but won't have worked enough hours in the last 5 years to actually supervise them. So someone else will have to do the qualification in the meantime and get promoted above me. It's not work's decision. It's what has to happen.

But still. GAH! I'm really peed off with it. I just want some nornality. But It's not ever going to be back how it was, is it? bitter sorry for the rant!

Hope you're both home enjoying lots of chocolate Unbuckle. Glad to hear your little one has turned a corner Lovely. We had a difficult family staying beside us in the last ward too-everything else seemed so awfully miserable that I started to consider them entertainment.

Can they actually do that Trazzle? That's crap. I'm worried I'll have similar issues regarding professional registration if I'm off for a long time. It's strange, I was dreading going back from maternity leave but now I'd give anything for that 'normal dread'.

We're going into hospital tomorrow to have the line put in on Wednesday and then start chemo. It feels like the edge of something horrifically momentous-like an awful countdown. We have to give our lovely nanny her notice tomorrow as we can't afford to keep her and pack DS2's bags as he's going to stay with my parents for a few days. My sister is altering his baby vests to hide his line from his inquisitive little vests. Meanwhile it's a beautiful day here and the beach is full of happy families and I'm struggling not to feel very bitter...

*little hands not vests

Yes. brave they can. If it was down to my employer I don't think they would. However (I'm a solicitor) to be a supervisor in my area of work, the Law Society says I have to pass an exam and work a certain number of hours over a certain period, which I haven't (2 years off on maternity leaves followed by 6 months off dealing with J and very very sporadic hours for the next 6 months. I'm still only working 1.5 days per week until he starts school in September.

There's nothing wrong with feeling bitter. Life has dealt us a very shitty hand. I have some lovely neuroblastoma mum friends who listen to my rants, pat me on the head and then remind me to get up, get the over myself and get on with it and be grateful for what I have it seems to work!

Hope the surgery goes well x

I actually nearly lost my entire immigration registration as can't have more than a year off at once. I was able to arrange a couple of days in the office before my registration ran out to protect me for another year. Is that something you may be able to do?

Thanks Trazzle ,work will support me with whatever work I can do. It's more my professional body have brought in new requirements re CPD and logbooks etc. I'm sure they'll be fine-I'm probably just looking for some distraction from tomorrow. Keep reminding myself one step at a time but I'm better at giving advice than taking my own.

In positive news, I think we should be able to get some money from a life assurance policy I've had for years which would be so helpful given that I'm not earning and really don't have time to rob a bank .

Oh Trazzles it really is adding insult to injury. Can you get it "back" or do you need to start over?

All these little bastard things add insult to injury.

A smaller thing by far, but we got a bill from our insurers last year for one of Alex's drugs it was the straw that broke the camel's back. It completely sent me into a downward spin for a few days.

((((Brave)))) it is a bit like that. Alex was diagnosed on Friday at our local hospital and the children's hospital said to come on Monday. I didn't go home that weekend because Alex was quite poorly still but also I couldn't face seeing my house and looking at everything that was "normal". It's surprising how fast you get used to the new normal though. Courage mom amie xx

In hospital with an over exhausted baby who is refusing to sleep. I just know the minute he does, a nurse will barge in to do something that seems unnecessary. Hospitals are absolutely not conducive to encouraging sleep are they? Add to that, a swollen scar site and a chesty cough and the possibility that surgery will be delayed tomorrow. The oncology ward is newly refurbished so lovely and modern but it feels quite isolating. Or maybe the problem is me-I seem to have the rage today with everything and everyone...
Apologies, rant over...need to rescue all the things that he has thrown out of the cot. Hope you're all having more restful nights!

Oh brave it is so tough xxx we all remember so well how bad the start is. I promise you will both get used to it, sadly. In the end J used to sleep with a blood pressure cuff and O2 monitor on so that his obs could be done in his sleep. If you tap his elbow while he's sleeping, he lifts his arm up high for the thermometer (I can laugh about that now) and has had nappy changes in his sleep too. He used to wake at any noise - not anymore. He's also now able to sleep anywhere provided he wants to. He could definitely fall asleep on a clothesline. You will both get there.

I'm sorry his scar is swollen. I'm sorry he's under the weather. It's so frustrating when things get delayed but probably for the best if he's not quite right. When they start chemo for Nb they don't really stop it for much. You'll find other parents saying chemo's been delayed for low blood counts or something - not for neuroblastoma. Once they start that's it, so probably better if he's feeling more like himself.

I hope you both manage some sleep.

Twunk I will get it back as soon as I've done the specified hours and I'm not sure how long that will take. Fortunately I won't have to take the exam again but still. I'm bitter at losing my responsibilities!

Thank you for that Trazzle and I am so sorry to all of you for being such a miserable whinge (I swear I'm not like this in real life!) I had a well-meaning but very misguided nurse trying to comfort me by telling me how lucky I was and that there were people much more unfortunate than me...er thanks . Right going to try to sleep while he does, thanks again!

Trazzle -your little boy sounds so lovely. Improved sleep would be a much desired side effect

Do not apologise! This is our safe place where we can say the unsayable. Where we can have bad days. It took me a good 3 months to come to terms with J's diagnosis, to the point where I stopped breaking in to random tears or feeling like I was the unluckiest person ever to have lived. (Who's melodramatic? Not me... )

And that nurse is a fucking numpty, if you'll excuse me. You'd think working on a cancer ward would have taught her some empathy. Evidently not. Ignore her (or him).

Totally agree with trazzles. How is it remotely helpful to compare you with the sickest child on the ward. When i've had that, i've asked the nurse to think of a healthy child they know and compare isaac to that instead.

Wrote a long post which disappeared about hosp routines etc, will repost after school run!

So, what I meant to say was that i hear you, brave, about the lack of sleep and interruptions. The first two weeks i was in hospital i felt close to a breakdown - in large part because of that (rather than just the diagnosis). The lack of rest, the intrusion, no privacy...

So what made it better was

• the hickman line and a little bag which could be poked out of his vest at night
• ng tube so he didn't have to be woken by being forcefed meds
• knowing the hospital routine - so obs are 10 6 2, meds are 12 6 12 6, or 6 2 8.
• refusing obs if they're at a bad time
• knowing that nothing is going to happen 2 hours either side of handover, so if you want to put the baby to bed by 8, you need to start demanding they do stuff by 6, or else they won't come until 10
• pushing back on the doctors. They genuinely have no idea how long it takes to administer a drug or how disruptive it is. If you explain, there might well be a combination of drugs they can give together rather than separately to minimise the disruption. Or they might agree to waive a pointless protocol - eg, the child might have be in with an infection and have a fever, they might refuse to prescribe calpol as it masks a fever,, so they only give it if a fever persists for an hour. So the child gets woken twice for something they could have done first time round, if they thought about the fact they already know there's an infection and are treating it.
• turn the beeping off. Press the mute button, call the nurses. Changes a noise that annoys you into one that annoys them. Can't believe more people don't do it.

Fantastic tips unbuckle , DH particularly likes the changing annoying noise suggestion! I fear the nurses won't know what hit them later .

Re my 'helpful' nurse-she actually wasn't comparing our lives to sicker children (I could actually cope with that). No, no, no-I was luckier than her as her husband had left her so she was a single parent and had to come abroad to work. I am praying that something got lost in translation as her English wasn't great but her revelation actually shocked me out of my distress so it did serve a somewhat useful function!

My god that is an astonishing thing to say!

Wow! Yes you are definitely better off than her

There's so much to get used to brave - rant away

Blimey Brave, what a strange thing for the nurse to say! You're being nice to give her the benefit of the doubt... I hope your further experiences are much more positive and supportive.

Loving the extensive list of tips trazzle.

We returned home yesterday, we did ten nights in total. Feel drained. Then our baby got tonsillitis....

Sorry - unbukles list. Need to sleep

Oh FFS Lovely! What a time you're having

Glad you're home though xx

back in hospital with temp and poorly ds. less than 2 weeks back in the uk and already picked up an infection having had 3 months without any in usa :-( I know I should be grateful for last 3m although they did involve daily GA and treatment but just feel bad for ds who feels so sick. having a humpf moment