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.

P4B I am pleased to hear your DD is doing so well! I did read her story at the time, I think because I was following Lou's Chunt threads.

I have 2 boys but Alex's older brother is 5 and not excessively bothered by it all. There are charities that provide counseling, or is there someone in the family (GP?) who could have a no-pressure chat?

Nocake! Good news re histology! Yes we are waiting for 2nd MRD test, though it's a longer wait than I'd hoped as today his cyclophosphamide didn't go ahead (platelets too low - they were 10!) - so they'll try again Thursday.

Unbuckle I hope the scan went well?

Hazlinh you are very much in my thoughts - I hope the transplant went well.

Minmooch sending a hug to you and your DSs

Trazzletoes I am pleased to hear DS is doing well.

So, the tumours are 'slightly' smaller. After 3 months of treatment, we are on slightly. It was the size of a fucking mango before so perhaps it is the size of a slightly smaller mango now.

Bastard tumours.

Oh unbuckle

Does the tumour automatically shrink as it dies? I only ask because with neuroblastoma it can stay exactly the same size but change to something pretty much benign. Obviously better if it shrinks, but we were told that for Joe, not shrinking much wasnt an indicator of anything. Just wondered if it could be the same in your situation?

Great news nocake

Today is exactly a year since we were told Joseph had cancer. It's so weird looking back at the past year and everything that's happened and how our lives have changed.

Oh Unbuckle I'm so sorry it wasn't the news you were hoping for. Trazzles makes a good point though. We were told at the beginning that sometimes the tumour doesn't shrink but changes consistency which makes it easier to remove. I was worried about this before D's scan but his key worker assured me its not necessarily bad news if they haven't shrunk. I realise though it must be very disappointing though . What is the plan? Are they going ahead with surgery?

Twunk - how frustrating. As if the wait isn't torturous enough. Wishing you lots of luck for tomorrow.

Trazzle - it must be so hard thinking of this time last year. I'm so pleased Jo is doing well at the moment though. Hope the bump on his head has gone down!

Thinking of you Hazlinh, Minmooch, Carebear, Stinkyfeet and everyone else xx

I don't know - they did say that the appearance has changed which is apparently good- it is more cystic. I can't find what this means via Dr Google!

I find the consultant pretty hard to understand, and so although i think she did say that often the tumours filled with blood as they died and so didn't shrink, if I go back and ask her i'll probably find it wasn't that she said at all.

His abdomen is very considerably smaller and softer. And he is an amazingly beautiful baby.

How is J?

Feeling a bit more positive this morning despite i howling and wriggling for what felt like most of the night. Wishing everyone a positive day and thanks nocake and trazzle for the support yesterday.

Hi Unbuckle! Glad to hear you're feeling a bit more positive. It does sound promising that the consistency has changed

Hazlinh I hope things are going well.

I'm having a bit of a hard time - Alex is doing really well but I've been struggling for a few days. I need to get a few things sorted and I keep not doing it, so must get on today. Possibly...

Sorry to hear your news, unbukle, but glad you're feeling better today.

I've just been to the hospital to sign a consent form for ds1's original tumour to be screened to see if he is suitable to take part in a phase 3 clinical trial of a new drug. We'll know in a couple of weeks.

Sorry you're struggling Twunk, sometimes it's so hard to accept that real life is carrying on and other stuff still needs to be sorted. Hope you feel a bit more motivated soon.

Best wishes to everyone.

Thanks for the well wishes everyone...the transplant went well, it only lasted five minutes or so. the preparation took much longer! the first few days were really good, she was in such good spirits, she had excellent appetite but now she has started to develop ulcers, throat pain when swallowing, loss of appetite, stomach cramps, severe diarrhea 10x a day, bum pain. and she had a fever for the past two days. so she hasn't eaten for several days. but the doctors say it is expected and is a side effect from the chemo. and she should improve when her counts go up around Day 13 or so, when hopefully the cord blood will start to engraft. I really hope so! docs say they can give her morphine for the pain. I am hoping she won't need it :(

Trazzletoes, wow two months?! That must have been scary at the time. I thought I would faint that day. In fact I am amazed I didn't.

Unbuckle, I really know what you mean when you say you find your consultant hard to understand. sometimes I feel the same way! sometimes I feel like I know what she is saying and then the next day I feel like I don't. it can be frustrating.

Twunk hope everything went well yesterday. keep us updated...Hope Alex's MRD is negative...

Hugs to everyone xx

Something that might make you all laff though. Silly story of the day. Woke up and inserted contact lenses into eyes. after one minute I realised my left eye was still blurry. Checked my eyeball in case it had slid up. Couldn't find it. Dug around again til my eye went red. Still couldn't find it. Inserted another lens. So either it went to the back of my eyeball or went down the sink without me realising. Should I be worried? Go to an eye doctor???? I'm certainly in the right place for it haha. My eye is ok now. No discomfort. Not so red anymore. I can't feel a thing. Is it likely to still be in my eye???? Hellpppp

Stinky so sorry to hear that you are back .

Trazzles I know those late night arguments in the ward. I had several. They were what made me bone-tired, like nobody was listening to me. I remember the only time I got a decent reaction was when I cried out of sheer frustration. There is a lot of contradiction on there and it is exhausting. Sending you much love.

Min still keeping on?

We're 5 months off treatment but DD still isn't right. I don't think it's leukaemia; I think she has other things. Her immunity is still shocking.

I just wanted to say hello and I'm sad we are onto thread 2.

So, they have decided to schedule surgery for Isaac. Onwards and upwards.

How are your eyes Hazel? I have put two in one eye before and gone all the way to the opticians for a replacement before finding out!

unbuckle, wishing Isaac all the best, when will the surgery be? yikes...I am not feeling any discomfot so I assumed it went down the sink...should I check?? arggg

We're meeting the surgeon this weej, and he's going to have another doxy on Tues so it will be at least 2 weeks

Hazlinh, if your eye doesn't hurt and isn't stuck together i reckon you're ok!

oohh ok unbuckle hang in there, both of you....x
Heh ya my eye seems fine, fingers crossed!

dd is on morphine now for the pain..they have upped the morphine gradually as it didn't seem to take effect at first. she can't swallow her saliva now, she is spitting in a cup. she vomited twice yesterday with some blood, apparently it's her stomach lining and it is normal for it to come out that way . she has some bug in her poo, so she is on three antibiotics.

Even if it's normal, it must be very hard to see. Hope the morphine is having its effect now.

Oh hazlinh I wish I could help. Joe had a transplant of his own stem cells in February so I know it's not quite the same but the side effects sound similar. This was the time when his heart rate was so high because of all the infections. It is such a horrible thing for these children to go through and such an awful thing to watch.

You are very brave. I screamed when Joe's bowel lining came out ( the other end) despite expecting it.

I was looking back through the pages and you said you hoped you were doing the right thing. As awful as it all is, and as awful as the risks are, I'm certain you are doing the right thing. What other choice do we have?

For those in the UK, just wanted to say that this week we have nets with a CLIC Sargent volunteer who is coming for a couple of hours a week to play with the kids or do some cleaning... Basically help out. I can't wait. It might be worth speaking to your local team about it. I ended up being referred through Joe's social worker although I had spoken to them about it before directly.

I wish we had Clic Sargent! Though the hospital care is amazing, no one ever comes to our house.

Hazlinh I hope your DD is doing okay. It all sounds bloody awful, so much strength to you.

Pleased to hear surgery is being scheduled Unbuckle.

I'm currently at the hospital waiting for Alex to be seen. He's poorly for the first time (that's not been chemo-related) - can't hold anything down and has a cold and a fever. His platelets were down to 3 last week, back up to 10 yesterday but everything else was down

Thanks unbuckle. The morphine finally taking effect today after a horrible few days...dd seemed much better and happier today..smiled and laughed a bit...played computer games...and even sang a bit!! haven't heard her sing in ages!

Trazzletoes, oh dear. Hope his transplant was a great success. I tried very hard to stay calm when I saw blood even though dd was in a right state and panicking. I didn't want her to panic further. So I just said I would ask the nurse/doc if it was normal. Thankfully they reassured us and said it was. Wow I wish we had clic sargent too! We get social workers in the wards and outpatients here with the Childrens Cancer Foundation, they are amazing and they come for a chat every weekday and play with the kids or loan them dvds or games or computer games. but no cleaning!! I want that!!!

Twunk, thanks so much. hope Alex gets better quickly. Are they giving him platelets infusions? Dd's platelets were down to 15 and they gave her two infusions this week. Especially since she was vomiting blood, and then on sunday she had some blood in her diapers. Yesterday her lips were bleeding too.

Poor little love! But so pleased to hear she has been singing! I'm not good with blood either. Or poo. Or vomit. I'd be a rubbish nurse!

We've been admitted as he has a bacterial infection. Am here until the weekend - he's already a bit brighter but I was bloody terrified this morning. Funnily enough his platelets have gone up to 25 on their own! Everything else is low though, I think mostly owing to this infection.

I don't think he will end up having his second cyclophosphamide. Oh well.

Im so pleased the transplant went well hazlinh and your DD is feeling a bit better - it must have been amazing to see her laughing and singing

Unbuckle - do you have a date for surgery yet? i know it is terrifying but it is huge step to get out the way. Obviously D had the same very recently so if there is anything you want to know about his stay/the op just shout.

Twunk - I'm sorry to hear Alex has an infection. Glad he is feeling a bit brighter though. I always find it it so much harder to cope when D is not well, it just seems to bring home to me that's he actually ill if that makes sense. Sorry you are having a tough time of it at the moment. I know all too well that feeling of things that need done, but neither the energy or motivation to tackle them....

Great news about the Clic Sargent volunteer Trazzles . I hope Jo is doing okay? How is your DD? Mine is a similar age and is into absolutely everything, climbing particularly - it's exhausting!

How is your DS Minmooch?

Hi Kinky and thanks for starting the original thread. I'm sorry to hear your DD is not right. It never ends does it

Hope your DS us still doing okay Stinky

D started radiotherapy today. He was an absolute little star and stayed perfectly still - I never thought he'd manage it. I found it quite upsetting but as the lovely radiographer said to me, I need to think of it as another step to getting him better. He has to have it done so there is not much point me worrying about the side effects that may or may not happen in years to come.

He has a stinking cold though so am keeping a close eye on him - I'm so worried he will get a chest infection as his neutrophils are so low at the moment. He's at the hospital for vincristine tomorrow so will get them to check him over properly.

Ad I finally got my DLA form in - I had a text to stay they have received it but that it may take 8 weeks for them to make a decision.

Twunk, oh sorry dd's platelets were actually down to 6 not 15!
Anyway, good news, it's Day +12 and her total white cells and ANC are slowly going up, everyone here says they are really excited for dd. I am just nerve-wracked with anxiety and worry...am hoping this is it....
Hope Alex gets better soon and you get to go home.

Thanks nocake! She was so happy yesterday, I was really taken aback! Good luck with the radiotherapy. It's exactly how I felt re side effects. when I read that the pre-transplant chemo could cause permanent ovarian damage and girls would not achieve puberty. It was hard to stomach but being alive and infertile is definitely better than being dead. Periods are quite a hassle anyway. And I figured that the silver lining is that I needn't worry about her getting pg as a teen??? I couldn't decide whether to tell her at first, I was really worried she would be very upset but in the end I decided to break it to her gently, and she seemed ok.

Hello, I know a great charity that has help put smiles on children's faces, whether its the child affected by a life limiting condition or their siblings,by sending cheerful post.
This is their email and website-
[email protected] and the site is www.postpals.co.uk
I think it's been mentioned in the past, but thought I'd say just in case some of you don't know about it.

I hope you all don't mind me posting here - I came to this thread one late insomniac night via active convos and have been keeping everything crossed for your children but have not posted as I had nothing to add.

I'm originally from the Netherlands and just wanted to ask Twunk - you say you wished there was something like DLA to help with the increased cost; have you tried talking to the gemeente where you live? In many cases gemeentes have local funding for specific cases in which residents need help and it is very possible that there is something available for the families of children who are ill. If not, they may well be able to signpost you elsewhere, you may well qualify for various benefits or schemes available for 'mantelzorgers' (carers from the community) which I know exist, although I don't know which ones would apply to your circumstances of course. There is a website here, or you could try the UWV who should also know what is available.