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

It was me with the "special kind of torture"
Because it is

I'm so sorry nocake that's very scary.
Is there a relapse treatment? There is for ALL - usually a stem cell transplant

Yeah, i think it's hard for people who don't have a child with cancer to understand many things, but the scans are particularly bad for that - you're absolutely right about the torture, but it doesn't seem to make sense to anyone else. Isaac's scan was fine and actually our official crapiversary is today (when he had the biospy result and formal diagnosis) and i have only just noticed, which shows how much better i am feeling! It is, hopefully, his last on treatment - although his end of treatment has been booked as an ultrasound - presumably because he was stage II and the tumour was intact when it was removed.

Horrible to hear of your friend's daughter's relapse, nocake - so sad and scary.

Fantastic news about I's scan unbuckle and good news that it's an ultrasound rather than CT at the end of treatment - at least you'll get the results the same day.

Yes Twubk she started the next day on a four month course of high dose chemo and will undergo a stem cell transplant in due course. Poor little thing

We had a bit of a scare this week. D was admitted to hospital in the middle of the night on Tuesday with severe stomach pains. They did an X-ray and could see some sort of bowel obstruction so we were transferred to St George's on Wed morning for a surgical review. They thought it most likely it was adhesions from surgery or even a repeat of the intertussusception he had after the tumour removal, but of course they could not rule out relapse. Once they had reviewed him they were very confident that it was adhesions that fortunately seemed to have resolved naturally which was a relief otherwise he would have had to had another op. They didn't see the need for an ultrasound but I spoke to his consultant at the Marsden and she arranged one to put my mind at rest - fortunately it was clear. He's fine now thankfully. I on the other hand am probably white under my highlights....

I bet, nocake, that sounds terrifying. End of treatment must be so hard, having to have faith that the chemo has worked and that 3 monthly reviews are ok. We're approaching it, but I can't think about it - it's in the box!

Hope you've recovered from that scare Nocake, sounds terrifying!

After a horrendous few weeks we got great results from A's reassessment tests. Our 'reward' is that we can move straight to stem cell harvesting for transplant . I will scream if one more person presumes it's all finished when they hear his results were clear!!! And his NG tube came out today which is the best thing ever. He developed vocal chord paralysis due to chemo so wasn't allowed anything orally...which was torture in this heat! He hasn't stopped eating all day and he was the fussiest eater beforehand so I've discovered the cure for finicky eaters...!

Hope you're all having relaxing times away from hospital and all scans are good!

Yes I get that - "IN REMISSION IS NOT CURED!!!!"

Good results aren't everything!

Survival is the aim, with as few issues as possible.

Well it's now 12.02 (here) and it's one year since Alex was diagnosed. One year since I was so worried about what was wrong with him, but we'd been told it wasn't cancer. But then it wasn't such a bolt from the blue when we were told it was.

One thing I have learned - if it's good news the doctor comes in; if it's bad they ask you to come with them.

I will never ever forget that doctor poking his head round the door asking "can I have a word?"

I will never ever forget him turning to me as we walked down the corridor and saying "it's not good news"

I will never ever forget those words "I'm sorry but it is leukaemia."

But tonight he's asleep with his brother in a bed and his hair has grown back to the point where he needs a haircut! And he's strong, and he's beautiful, and he's here. Thank god for modern medicine, I'm so grateful. I'm so utterly grateful.

Hey there, just popping in to say hello and catch up on the thread.

Brave I guess you've had the harvesting by now. I hope it's all gone smoothly and they got enough stem cells.

We've been in for an ultrasound today as Joe's recent MRI showed bladder irritation from treatment. All looks fine though and they had a good look all through his abdomen and found nothing abnormal. Nice to have that reassurance.

He still has his NG tube (eye roll). Brave you may well find A needs another tube during transplant. The majority of children do.

Hope you and your children are all well. You're in our thoughts.

Sorry I've not been on for a bit.

twunk I remember every single word/second of the awful night we found out D had a tumour. I found it very hard not to relive it on the anniversary of that day, but wonderful to hear A is doing well and lovely to imagine him snuggled up with his brother.

unbuckle how is I doing? You can't have long left now?

brave hope the harvesting went well. How is the little one doing? Great news about his reassessment test results.

trazzles it was lovely to read your update on the other thread. I think of you and Joe often. Hope DD is doing okay? My DD is 2.3 now and a real handful - great fun though and it's wonderful to see her and D's relationship develop.

D has his first scan tomorrow's following end of treatment (he did have an end of treatment CT in May but had only been off chemo a few weeks then). I am swinging between paralysing fear and denial....

Much love to everyone else x

Good luck nocake

DD is well thank you. Yes, it's lovely that the DCs have such a beautiful relationship. She is very understanding of J's limitations and mood swings and loves to nurse him!!!

She gets daily tummy aches though, and night sweats and likes to be carried - all symptoms. We went to the Dr who found swollen lymph nodes. He called J's consultant (who now thinks I'm crazy) who said its so unlikely she has cancer there's no need for a referral so... But he will see her if I get "too anxious". Anyway, we've agreed to take her back to the GP in a couple of weeks for him to check out her lymph nodes again and make a call [scared].

I hate this paralysing fear and the knowledge that everything is never going to be "ok" again.

Scans all clear thank god Lots of for me tonight I think!

Oh Trazzles how terrifying for you. I'm sure there is a perfectly innocent explanation for those symptoms but of course you are thinking the worst, how could you not after everything you've been through. I don't understand why J's consultant finds it hard to understand why you're so worried! Whenever I ask about getting my DD tested they insist it is very rare for a sibling to be affected - given D's odds of getting it in the first place were 10,000-1 it's hard to be reassured by that!
I would insist on a referral when you go back - I honestly think it will be fine, but you will never stop worrying about until they have checked her properly.

I know what you mean about knowing it will never be ok again. I'm so tired of that sick to my stomach feeling every time DS or DD mentions their head/stomach/anything hurts.

Great news about the scan nocake. Having a crap day here - have been away overnight and our house was burgled. They took the ipad i bought for isaac to have in hospital. And some of his meds. And an elderly laptop that had all our family photos on, including nearly every one we took of isaac before he got sick.

I just feel so sad.

Oh unbuckle I'm so sorry. That's utterly shit. What can we do to help? What total bastards xxx

Unbuckle, that's just awful. How upsetting for your family. Some things insurance just can't cover. x

Thanks blackswan, trazzle. It's the photos really - i can buy another ipad. And i can't imagine what the burglars are going to do with prophylactic antibiotics for people on high- intensity chemo.... I'm hoping we can recover some photos from old memory cards - fingers crossed.

Hello wonderful strong women, first message here and I hope its the right place. First of all my heart goes out to you and the little fighters

We (friends) are totally freacking out at a friend's news of dc having AML Leukemia. Both young parents are doing a great job but they feel lost, they are paralysed with fear and cannot ask/get from doctors…

boy 18 months
taken to doc 11 days ago with red spot rush
rushed to hospital for test -- diagnosis as above
had 7 days chemio
fever came on second day, very infection in bowl, boy really sick indeed
doctors say white cell have increase (or whatever is good news on that front) BUT infection far to huh
boy shivers no stop, looks really pasty, looks desperate doesn't eat anything
he was fine up to 3 days ago, we saw pictures
he also head two marks in the brain (emboli) sorry not sure its the correct english term

For people who have experience this, is this "normal" after chemio?
Parents don't even know what to ask
Any suggestion/experience most appreciated thanx!

fever came on second day, High infection in bowl, boy really sick indeed

sorry should read

fever came on second day AFTER CHEMIO, HIGH infection in bowl, NOT RESPONDING TO ANTOBIOTICS, boy really sick indeed

boxing so sorry to hear of your friend's DC's diagnosis. It's all such a whirlwind at the start.

My experience is with a tumour-based cancer rather than leukaemia so I don't know whether it's the same. From my point of view: an infection 2 days after treatment is quite fast. My DS' counts usually dropped about a week after, leaving him more vulnerable to infection, but of course a person can pick up an infection at any time.

As for not responding to antibiotics... Some infections don't. If he is very unwell, I would be prepared for the fact he may be transferred to Intensive Care. I know at our hospital, PICU was viewed by many parents as somewhere they didn't want their child to go to. However, it is often the best place to care for a very poorly child. Just because an infection doesn't respond to antibiotics, there is still every chance that this child will recover on his own.

It is terrifying. If you are able, as parents the things that helped us the most at the start were: offers of childcare for other DCs. Meals cooked and left on the doorstep. Open ended texts so we knew people were thinking of us but no pressure to respond to them. You feel very out of control at the start so it's kind of nice to have someone say ie, I'm going to pop by quickly at 7 on Tuesday. I'm not stopping, I'm just going to take your washing, or ironing, or whatever, and will return it the following day. Or whatever works.

I hope he shows signs of improvement soon.

Sorry I mis-read - the fever came on the 2nd day after 7 days of chemo? That part sounds totally normal to me. That's when the body's ability to fight infection drops and the patient becomes most vulnerable to infection.

Not eating anything is also entirely normal. The Doctors will I'm sure be able to give him a feeding tube or even put him on intravenous feeds if he loses too much weight.

thank you for your reply and sound suggestions Trazzle.
Doctor did warned the parents of the risk but sounds concerned as the fever doesn't drop.
What they are seeing may be totally to be expected but hard to tell, especially as it all happened so quickly and the little one was his usual playful self

I confess last night I found your thread… than I realised it was only the first of a few and I went to read the last. You all sound amazing !

Hi helena. So sorry to hear of your friend's son's diagnosis.

My son also had a solid tumour, not leukaemia. But from my experience, infections are common, but scary, and many are viral, so don't respond to antibs, or resistant, so they have to find the appropriate ones by growing and analysing bloods.

If your friend's in the uk, i'm sure the drs will be answering as much as is feasible - although until you get blood cultures they don't know much, and in my experience they hate talking about the future.

In terms of helping, i'd avoid getting involved with medical stuff but address some practicalities - do they have clean clothes and duvets and something palatable to eat? Can you keep the garden clear/put the bins out/ look after older kids. I'd suggest you say what you could do, rather than saying you'll do anything as that puts the onus and responsibility on them to choose, which, if they're anything like me, they won't want to do.

Oh boxing sorry only just saw your pm - have been to see the Pet Shop Boys this evening!

I'm sorry to hear about your friends' son. Tbh we never had a reaction like this, it took a while for Alex's counts to drop and he didn't get his first fever for a few weeks.

I assume they are growing samples in the lab? Usually they give broad spectrum antibiotics until they can work out what it is, though sometimes they never know.

When they look at the bloods they will check for various things, like kidney and liver function but also:

Haemoglobin (Hb)
White blood count
Neutrophils
Platelets

All the above drop during chemo but it's the Neuts he needs to fight the infection - anything below 1 and they worry more. It took ages for Alex's blood counts to drop to that level but the treatment for ALL is different to AML.

CRP

CRP is a crude-ish measure of infection levels. If it's around 25 they will assume it's a virus, round 100 and they assume bacterial. It can be very high.

It's utterly terrifying I know. Really, nothing is worse than sitting there in hospital with a desperately ill child. They will be doing all they can.

Please let us know how they are getting on, and hugs to you all xxxx

Oh Unbuckle my heart is breaking for you - what utter utter bastards there are out there .

Sound advice on helping - you need so much help when you're first sprung into this world, and tbh all the way through. We're doing ok now because Alex is so well at the moment, but times have been very tough and having meals cooked, washing done, house cleaned, DS1 cared for - invaluable!

I'm just dropping by with some love and hugs for you all and your children. Finding it hard to find the words but I think of you all often. Xxxxx

Oh lovely min you are always in our thoughts xxx

Yes boxing oncology drs are almost impossible to pin down and get a straight answer on ANYTHING. On our ward the stats were something like 80% of fevers they could never attribute to a specific cause so it's really not unusual for the drs not to know why a child has a fever. Yes, I suppose it's not that uncommon then also for a lack of response to antibiotics, but we were lucky and it wasn't something we ever had to deal with personally, although I know other families who did.