Children with Cancer

[Twunk]

Sadly we need a second thread :-(

My son Alex was diagnosed with ALL (Leukaemia) in July and we are making our way though the 2 years of treatment that are given here in the Netherlands.

If you want support, or wish to share your story, or can give support please do join us.

It's a shitty journey but together we'll get through it.

Please do stay with us Trazzle. I think sadly we are all coming to understand that then end of treatment doesn't mean the end of this journey. I was so naive before all this, I really thought if the treatment was successful, you got the all clear and sailed off into the sunset! I realise now you never really get the all clear. The best most of us can hope for is NED and then years of agonising scans/tests. I think we're all going to need each other for support for a long while yet x

I hope the LP and everything else went okay twunk.

The Christmas/new year is such a difficult period, big hugs min. I hope your DS was well enough to enjoy it? Are the new anti sicknesses still working?

Oh mmmmsleep, it's heartbreaking to have these thoughts about our babies isn't it. I pray that all our babies have many New Years to come x

I hope the first day back was okay unbuckle. In some ways I am looking forward to going back to work as I think it will make things feel a bit more normal and all being well D will be at school during the day anyway. My new company have been great about hours too so although I am doing 4 days, I will do two longer days and two shorter ones so I can still pick him and L up from school/childminder 3 days out of 5. My worry of course is when he is unwell/in hospital. He is such a mummies boy, I will feel awful if I can't be with him all day.

I meant to say that we finally made it out about 4pm on NYE. Was so lovely to spend the night with both babies under one roof

Having a massive tidy up today. D & L got so much for Christmas, god knows where it's all going to go. D is in great spirits though and is being such a little cutie at the moment

Hope all those returning to work have a few days to ease back in. I was due to start a new job on the day DS got diagnosed but it was with a friend so not feasible to keep place open for me. I can't work anyway as DS requires too much care.

Trazzles don't leave us. We all need support whatever section of the journey we are on. Xxx

I have two girlfriends coming over for dinner - my first bit of socialising over the holiday. Looking forward to having a glass of wine with them as they both understand where I am - one has breast cancer and the othet's husband has pancreatic cancer. Sounds as if we would be miserable but we find a comfort in each other that others can't give.

Love all round xxxxx

If any of you are on Facebook... I just wanted to let you know about a charity I've come across. They're called Supershoes and they basically paint and give a pair of Converse to children suffering with serious illnesses - mainly childhood cancer but also other illnesses. The artwork looks fantastic and they put on your child's favourite characters etc. they have photos on Facebook anyway. Just in case these might brighten your child's day.

Ooooo thanks trazzles! I wonder if they will help us as we live overseas. I can but ask.

Yes trazzles also you must stay with us. Alex has a 2-5% chance of relapse/secondary cancer but that's enough to keep the cancer cloud over our lives for a good few years. I have everything (fingers, legs, eyes) crossed that Joe is in that 20%.

Minmooch totally get what you're saying. It's like there's no elephant in the room, which is why I like talking to you guys.

Actually there is an elephant in my room - it's a 4'6" leather elephant called Gertrude. I insisted DH buy her for Christmas one year - and now we struggle to find a home for her in every house we live in .

I have an elephant in my room too Twunk in fact I have 3... They are in a painting. I love them.

hello ladies
I'm on phone and despite attempts my brain appears to be too frazzled to name check but I am thinking of you all.
We're in again. quick day chemo turned into long day for transfusion which was followed by spike near the end and admission. had down day yesterday after chat with radiotherapy consultant about likelihood and extent of learning difficulties and hormone damage etc etc post radiotherapy to brain as ds is so young. I know if he survives to have ld then as long as he's happy he's survived and I should be grateful but it's just yet another bit of our bright little button that cancer wants to take from him and it's just unfair and sad. sorry it's another down post. it's just been one knock after another recently and I keep a brave face on most of the time.

and I love the idea of the 4'6" elephant in your room!!! ;-)

(((mmmmsleep))) hoping you get some sleep tonight and the cultures grow nothing at all.xx

mmmmsleep big hugs. It's all so horrid - disease and treatment. Before his diagnosis DS was predicted straight As at GCSEs and at A levels, predicted to go to Cambridge/oxford. Tumour, surgery, chemo and radiotherapy all taken a slice of that away. It's taking away what should have been their future that is very hard to deal with. And although we should be grateful that they survive and that should be enough - actually it isn't. Plain and simple it isn't enough. And I feel horrid saying that but my DS is old enough to know how much he has lost if himself, his future, his life.

And (I'm on a roll now) it's the unknowing that is so frustrating. No one can tell us/you how all this will effect his brain. How it will effect learning, memory, thought processes, mobility, hormones etc etc. if we knew what we were dealing with it would be easier.

Fucking bastard disease. Cancer it robs us of so much.

And breathe.

Rant over.

Hugs and more hugs.

hugs back to you minmooch. Thank you for sharing your rant. and thank you unbuckle and all of you. it is lovely to have somewhere to rant and be understood. ds brighter today. still have to stay in awaiting cultures and now also some fears that line might be displaced :-( dd has vomiting bug at home so on bright side at least being here we might escape it....silver lining to every cloud ;-) poor hubby though.

Minmooch - hope you enjoyed your catch up with your girlfriends.

No wonder you were having a down day mmmmsleep. Minmooch sums it up perfectly with its taking away what should have been their future. It's all so bloody unfair . Sorry too about the line worries. Hope DD is feeling better soon

Hi to Twunk, unbuckle, Trazzles, Hazlinh and everyone else.

Got results of 4th blood cultures and they are showing positive for staph infection again so that's neg, pos, neg and now pos again. And I found out he was given the wrong (considerably lower) dose of antibiotics for several days, I don't know if that has anything to do with it. His neutrophils are still zero too - it's been about 5/6 days now. I just feel quite anxious at the moment. He's absolutely fine in himself (and no fevers) but I'm so worried about infection with no neutrophils . I'm just sick of being so worried all the time. I just want to go to bed and sleep for a week...

((Nocake)). Even when they're well, i think we worry anyway, in case they actually aren't, or shouldn't be. I am stressed as i has too many neutrophils following chemo....! There's no pleasing me!

Hugs Nocake it's a horrid anxious wait for neutraphils to start climbing. But like Unbuckle I used to worry when his counts didn't fall incase the chemo wasn't working. Aarrggghh frustrating times for you.

Last day before my sons return to school. Youngest one looking forward to it. Not sure Will is really. Sickness has been much better the last few weeks and I can see that he is much faster going up the stairs so energy levels are gradually returning. I'm dreading going back to school, trying to sort out the wheelchair in this rain, keeping DS dry, pushing it up the hill in the mud, waiting around whilst he is in his lessons that he can manage. Ah well, perhaps this term he will have more energy and it will be a bit easier.

Keep strong everyone. Keep on keeping on xxxxxxx

unbuckle I was doing some filing of all J's paperwork last night and was looking through his counts from when he was on chemo - now he had G-CSF injections to boost his neutrophil counts but alternate cycles he usually stopped them early because his counts were so high. At one point they were 9.something!!! And his initial chemo did just about everything it was supposed to, except for clearing the pesky bit in his leg. But it got rid of a whole load of disease.

Hi all. Sorry I have namechanged. It's me (the one with the dd who has had a transplant and was ttc). sorry for not coming on here for a while. have had major issues to deal with. i think h is leaving me for ow. I haven't been paying him enough attention and he has been having miserable life and marriage. Well i too have been having miserable life with sick dd for the last 4-5 years but hey.
moving on. quick update. dd having bone marrow aspiration tomorrow for day 100. hopefully she will still be in the all-clear and no cancer cells, and she is 100% donor cells! doc says she can have her hickman line taken out if she wants. she is not keen on going under GA again for it, and also the idea of having needle pokes after that for subsequent blood tests. she does still hv her port fr before tho and doc says maybe we can use that bt previously they said they wanted to avoid using it because she had strep in it before! BUT not having the line will be easier and she will be able to have proper showers and go swimming again. i am also worried abt what if she somehow needs another transplant again. trying not to think negative thoughts but hey..my life has been shitty so far...of course everything that could possibly go wrong will go wrong..though i hope not in dd's case...
anyway hope everyone is surviving...i am just on auto mode at the moment. am just hanging on for dd's sake.

welcome back shits. hugs to you. sorry you are facing such a tough time. hope dd's results are the positive news you need. marriage breakdowns seem to be one of those long term side effects of cancer that they don't cover in the chemo brochures unfortunately. it's such a strain on us and difficult to have an "active" married life when one parent is always in hospital or exhausted from being up all night with dc. my thoughts are with you.

minmooch I hope school restart goes well and this blasted rain stops so that walk with the wheelchair is easier.

cxr showed ds' line is thankfully in the right place. surgeons are due to review to see if they can resuture it to keep it in place and stop it falling out further. fingers crossed. no more spikes so just waiting for culture results tomorrow am then hopefully for escape!

thanks mmmmsleep. yes they don't advertise that side do they.
hope the culture results are negative and you can escape soon..

((Shits)), fingers crossed for the aspiration. Your husband sounds like he's being a nob, that must be so hard on you.

Good to have you back

X

Thanks unbuckle. Bleah.
Hope you and Isaac are doing well. You were right of course. 2013 is shit. 2014 can only get shittier.

xx

Sorry Shits to hear about your marriage. My second marriage broke down soon after my DS's diagnosis - an ill step child wasn't in his plans. Illness of any sort puts so much strain on a marriage. My sons illness put paid to any further babies for me and my then husband (had 8 miscarriages and lost twin girls in late pregnancy due to TTTS). It was yet another thing to grieve. I find now that I am glad to only have the boys and myself to think of. I hope the aspiration goes well tomorrow. Xxxx

mmmmsleep good news line is in the right place xxx

(((((Shits))))) what a pathetic excuse for a man. So sorry he's too weak for what is needed. My blood is boiling for you.

Sorry my first message disappeared - I'm convinced half my messages don't post

Hope today went well shits let us know when you can.

Sorry to hear re potential developmental issues mmmmsleep - it must be very hard having another layer of uncertainty in these uncertain times.

Hugs to all trazzles, unbuckle, minmooch et al

xxxx

Minmooch thanks..oh my god...eight miscarriages and lost twin girls...i am so sorry...xxxxxxxxxx

thanks Twunk...yes he is so weak...I don't know why I never saw it.

long day today...dd slept whole day after the bma...she vomited on her self just after i had woken her up and given her her morning meds at 3pm...she had to go home in a hospital top. she decided over the weekend to let them take her line out but in the end there was no surgeon available so it will have to be another day...still catching up on the day's meds....so exhausted...bma results will probably be out later this week or next week. her blood counts are good though, thank god. except for magnesium so she had to have a magnesium infusion. and also iv ig. slight scare towards the end of the day when she suddenly had a temp of 38! but after an hour it went down phew! probably caused by the ivig! could not deal with being warded i think. but then again that would mean i would get a break from h.

much love and hugs to all...xxxxx

I think it's hard to see anything beyond a sick child and while i try and meet my other kids needs, i am a crap sister/daughter/employee/ wife/friend and don't honestly care at the moment. So sorry things are so bad being on the ward could be a break, even as a joke shits.

((Min)), what heartbreak. I had 2 mc in 3 months and struggled a lot with that, no-one should have to face what you've faced. I hope our little band can send you some strength.

Xxx