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

Oh no, thenew

We have had a massive row with RMH and our local, because they've put I's line replacement back again and he'll be late for chemo. We've both been so angry we've been on the verge of tears.

It is hard to keep rational/proportionate i think. And very hard to be grateful for anything at all.

Really sorry to hear that Thenew and Unbuckle -how awfully frustrating! Glad you got home Lovely , hope your baby is feeling better.

Oh bloody hell Unbuckle - when are they going to do it?

Thenew I'm so sorry you're dealing with an infection.

It's King's Day today and we've been out - went early to avoid the crowds. Saw our old neighbours who made the mistake of asking how we are! They are fine though

Alex's skin is really suffering in this heat (it's been warm and sunny for a good bit of the past few days!) - the methotrexate gives a nasty rash which is much worse in the heat or sun. Nothing seems to help. Doesn't bother Alex though. He wears a cap and sunglasses when he's outside but it makes no difference.

we're out! I'm certainly very grateful to those who donate blood and platelets. my little ds is personally trying to break the blood bank. He's much brighter now his blood levels aren't all in his boots and the heavy duty antibiotics have worked their magic. phew!
any news on the line unbuckle?

That's great to hear thenew, you must be relieved! We're doing ok, he tolerated his first chemo all right but is refusing to eat and vomiting since. Do you have any tips for dealing with the line? I tried to give him a bath the other night but chickened out. They showed me in hospital but it feels so daunting-so nervous of that bloody thing.

Isaac's port (yippee! More screaming, but no infections - a good deal i think) is going in on Thursday. He'll be a week late for chemo. I think the thing that really upset us is that the delay now means his treatment will definitely last the whole summer hols. It was always likely, but we had a glimmer of hope beforehand.

I am probably the worst person to give line advice given how many infections I has had... But pre-op he was completely clear, and we bathed him every day he would tolerate it. We didn't wrap /tape it up, we found that unreliable - we just kept hold of them and kept the bath v shallow. He got used to it. I have an amazing video of him enjoying the bath line-free though, from a couple of days ago.the hospital didn't give any advice except to keep it out of the water.

brave how old is your ds? we made our own bathtime wiggly bags. a prototype has now been made by the lovely group of ladies on the fb wiggly bags group and I'm sure they'd do one for you or I can ask my aunty to make you some? pm me if you like. essentially we used waterproof fabric and the bag hung upside down with wigglies kept in with prestuds. I have photos so can pm you. it saves the whole taping up with nappy bags thing as ds hated tape. shallow bath still but means ds can relax.

the other thing you can get for trips to beach is aquaguards. it's essentially a big dressing that's water resistant and goes over your dressing and wigglies in case of splash whilst paddling/ playing in one of those water fountains they have for kiddies.

hope that helps x

and if your ds is nauseous (shown by refusing foods etc ) then call your onc team and ask for regular antisickness. our ds needs at least one antisickness for at least a week after chemo but often all the time!

Joe had a normal wiggly bag, we would tie it up short and put it behind his back and put the ends in there to keep dry. His hair was just washed with a soapy flannel.

You may well have an insuflon on his leg too for the g- CSF injections... V shallow bath as that also has to stay dry :s

Joe technically never had an official line infection (they found bugs in his line twice but once of his consultants says this isn't actually a line infection... I can't say how he managed it. Luck I think. Though we were ANAL about weekly dressing changes, weekly smart-site changes etc. that won't necessarily protect him but according to our nurses most people don't bother with them that often. Which seems odd to me - if it can help protect your child from infection surely it's a no-brainer...

Having said that, we drove from Scarborough to Leeds with an open line in his chest where it broke, having grabbed at it with dirty hands when it snapped, were told it would certainly be infected and it wasn't...

Def ask for anti-sickness meds. J was on ondansetron and metaclopromide I think. You'll get there x

Thanks for that unbuckle and thenew. He's just turned one and was a total waterbaby before all this. Loves to roll in the bath so I think the dressing would definitely need to be waterproofed too. Those wriggly bags sound perfect thenew, could you send some photos if you get a chance?

Re nausea, I've got some Zolfran which he keeps spitting out but seems to help a little. Refusing to take the formula prescribed by the dietitian (Fortini and SMA) and refusing his usual formula...

Unbuckle , apologies if this is a stupid question but is the port replacing a line due to recurrent infections? Poor you and him-all these complications are so unfair on top if everything else.

Alex's line is out thankfully (was in for 7 months) - he never had a line infection I think mostly because he had a portacath under the skin. Downside was they had to access it every time he needed chemo. When he had chemo 4 times a week they left the needle in (it was in a plastic disk thingy). One time I managed to get it caught and managed to pull it out and it went back in but in a different spot. We didn't realize until the next day but it explains the screaming he did at the time

Glad to hear the line is going ahead unbuckle (fingers crossed).

Big love all.

brave Joe stopped eating the moment we first went to hospital. He went from 17kg to 14kg in a couple of weeks. He got an NG tube quite quickly!!! Really honestly it takes away so much stress. He can't refuse meds or food. I hope he starts taking his meds for you, at least x

Iirc Hickmans are much more likely to get infected than ports but some people are just unlucky and get tons of infections regardless. I think it's just one of those things.

Yes, he's having a port because he's now got some fat so they can put one in, and his line was irretrievably infected. If he was thinner though they'd put another hickman in. His previous line came out post surgery because of some gunk around it that he came out of theatre with, and they couldn't get rid of it. Because he was skinny, it was another hickman that went back in. He's just been suffering the interflon(?)- we didn't try and bath him with that.

It's fine with the insuflon, just as long as they insert it reasonably high up, so if the child is sitting it won't be automatically down in the water. They are in almost permanently for the first 3 months of neuroblastoma treatment.

You will work out what works best for you as a family in time.

Hope you have more luck with the port unbuckle

Did it happen unbuckle?

Hope it went ok.

Yes, port is in, and because he's not having chemo today we have spent the morning doing normal person things for the first time since last july - twins club, sainsbos, museum. Wonderful feeling!

Yay!

How is everyone?

We're having works on the house. Could not live with the dreadful kitchen any more. Half of it was in a wooden extension which has now been demolished. I have a big hole in my house. But hey, it's less stress than we had last year....

Alex is very well right now and that's what matters. DS1 is going for a 2 day speech assessment soon. Life moves on.

I'm struggling after seeing a friend who really has no understanding of what we've been through. I can't go into details as I'm not really anonymous on here, but I'm finding the hurtful things she said very hard to deal with.

Love to all xxx

Hey twunk! Sorry to hear about your friend - or ex friend? I think that having a child with cancer is so beyond normality, most people have no conception whatsoever of what it's like. But that's no excuse for being hurtful.

We are ok, i had chemo a week late after the port was put in, and is enjoying proper baths again.

But god, this is never ending. Just over half way through. Not sure if the end of treatment becoming possible is more terrifying than the treatment.

Xxx

Hello everyone.

Twunk, sorry about your friend I'd heard tales of people acting strangely then it happened to me. It beggars belief really. Hope you're ok? Good luck with the kitchen!

We're doing ok, still in the gentle phase I'm gearing myself up for next one. It's delayed intensification, consultant said it would be intense and to expect hospital stays and infections.

DD received a gorgeous blanket from the amazing people on the Woolly Hugs thread. I don't know if anyone on here was responsible, but it was unbelievably kind.

Hope everyone else is getting along ok?

Unbuckle how are you finding the port?

Port is fine, he is ok with it being accessed, and it is great seeing him in the bath normally, splashing enthusiastically.

Sorry to hear about your friend Twunk , some people are just amazingly insensitive. Struggling with some people in my own life who don't seem to understand that I can't be a ray of sunshine when all this is going on... But you must be a lovely person because a little bird told me that you were the person who nominated us (and I'm guessing Lovely) for a woolly hug? It should arrive any day now and I'm very excited. It was such a kind, thoughtful thing to do, thanks so much! Your kitchen sounds very exciting, love Dutch design (and their amazingly efficient builders!)

We're doing ok, round 3 of chemo on Wednesday and he's tolerating it reasonably well so far. Can't imagine how crappy he must feel at times, and yet he's still so smiley and cuddly. Keep coming across helpful and not so helpful stories about neuroblastoma so need to stop reading about it for a while.

Unbuckle that's great about the port. The bath sounds lovely, I'm still finding them so stressful and he used to love splashing about. I still find everything about this terrifying-going to hospital, leaving hospital, the start of treatment and the end of treatment. I feel so deskilled and disempowered as a parent. I don't trust my own instincts and hate leaving him. He's so heartbreakingly sweet but I sometimes feel like I need to distance myself from him...just in case.

Sorry about this-another grim post from me. I swear I'm actually not like this in real life or at least I wasn't.