Children with cancer

[KinkyDoritoWithFairyLightsOn]

Hi all

I'm going to start this and keep bumping it as I don't think there is a thread for supporting anybody whose child has cancer and I know there are others about. In part, this is a good thing as it shows that it is still very rare, however it doesn't feel like that when you are sitting in a children's oncology ward.

I will be around and am happy to chat to anyone who needs it.

My DD is 13. She was diagnosed with ALL in January. She has to have 2.5yrs of chemo in total, if everything goes according to plan.

I also write a blog that is listed on MN. The catchily titled: The Acute Lymphoblastic Leukaemia Diary.

Best wishes to all.

I know what you mean about 'care'. We have had overdoses of chemo (some idiot couldn't record the weight properly), fluids disconnected and not reconnected, meningitis due to unconnected spinal tap - despite me saying 'it's wet, is that right' over and over again. I felt like an invisible person, yet I was the one who cared the most. There was one whole day where I was stood at the end of the bed literally wringing my hands asking for help and I was ginored the entire day. Yes, that's 10 hours I was stood there. I will never, ever go back to that ward. Appalling.

Does anyone know how long fatigue post chemo lasts? We are nearly 1 year out of chemo but tiredness is still a major issue.

Hi Change and welcome - my DD has Asperger's too. She is high functioning though so has understood everything. Plus, she's 13.

Hi Queen.

Please read for Farlo

www.mumsnet.com/Talk/in_the_news/1491541-DDs-beautiful-friend-in-the-news

or see

Toughday - great news on the scan - you can relax for a while now.

Windywendy - sorry to hear ds is unwell - I hope he's feeling better soon.

Changethatbulb - welcome to the thread - how old is ds?

Things are still going well here; ds has now had all the chemo for cycle 4, so we're halfway through. He has an MRI scan at the end of this month. It's just a standard halfway scan, but it's giving me a bit of a wobble.

Thank you for the welcome.

DS is 7.5.

stinkyfeet - I hope the scan is ok. Fingers crossed.

Kinkydorito - I will check the links out when I am not on my phone. I am hoping to get an early night tonight. DS1 has just got back up though. Sigh.

I hope scan goes okay Stinky.

How has treatment been for your DS Change?

despite me saying 'it's wet, is that right' over and over again. I felt like an invisible person, yet I was the one who cared the most. There was one whole day where I was stood at the end of the bed literally wringing my hands asking for help and I was ginored the entire day. Yes, that's 10 hours I was stood there. I will never, ever go back to that ward. Appalling. So true. I ended up in tears of frustration so many times over shitty treatment. I'm not a big crier and I think my height and build (tall and fat ) makes me seem quite intimidating... so starting to cry tended to shock them into actually helping me. It's hard to feel powerless.

If you ever need help in hospital, remember PALS - all hospitals should have a patient service that will help you iron out issues about care, without starting a formal complaint procedure.

I hope scan goes okay Stinky.

How has treatment been for your DS Change?

despite me saying 'it's wet, is that right' over and over again. I felt like an invisible person, yet I was the one who cared the most. There was one whole day where I was stood at the end of the bed literally wringing my hands asking for help and I was ginored the entire day. Yes, that's 10 hours I was stood there. I will never, ever go back to that ward. Appalling. So true. I ended up in tears of frustration so many times over shitty treatment. I'm not a big crier and I think my height and build (tall and fat ) makes me seem quite intimidating... so starting to cry tended to shock them into actually helping me. It's hard to feel powerless.

If you ever need help in hospital, remember PALS - all hospitals should have a patient service that will help you iron out issues about care, without starting a formal complaint procedure.

KinkyDorito the early days were bad, but we were lucky and he only had one Direct Intensification period. I don't know if that is a term they use everywhere wrt leukaemia. He is on Regimen A. Basically it's monthly vincristine along with 5 days of steroids, daily Mercaptopurine, once weekly Methotrexate, weekend Co-trix.

Anyway, the early days were awful - and I was divorcing my h when DS2 was diagnosed so it's a it of a blur. Maintenance has been good. We have had a few scares, temps spikes, but it has improved so much since he got his line taken out. What a relief that was.

How are you doing? Where are you up to now?

Best wishes to all with children who have any cancer. If I had one wish, I know what it would be.

Thank you Kinky and thank you Stinky for posting.

Welcome, Change, I'm glad to hear you are nearly through with treatment. We are 7 months out now and although it's still very stressful each and every time there is a bruise or she feels unwell, I love seeing how much better she looks off all the chemo and steroids.

windy I hope the chickenpox episode is over very quickly and your DS is feeling better.

Queen that is horrendous. We had some issues too including an overdose of paracetamol and a near double dose of chemo so I do know that feeling when you worry you can't trust the people caring for your children at their most vulnerable

Hi all,

I'm so sorry to read all your stories, I can't even begin to imagine what you are going though. I have been kindly pointed over to here by Mackerella as I was looking some advice over on chat. Here is the message I posted.....

Feeling a very useless, DHs friends baby girl (7mths old) is in hospital just having her first chemo session tonight. DH is / was very close to the dad but life got in the way somewhere along the line and they haven't been as close in a few years. We don't really know the mum, I have never met her and DH only a couple of times.

The prognosious doesn't look good really..... And we just feel so helpless. Obviously, no visitors allowed etc and they don't really live close enough for food parcels etc so I would like to send a little gift to the hospital just to show we are thinking of them.

Any ideas of something appropriate (ie not teddies etc) to send the the little girl and would you enclose a card ie get well (??) or a thinking of you card?

Would really appreciate your thoughts, thanks

I'm so sorry if this is a trivial question and if you think it would be better not to impose / send a gift I would like you to say.

Im wishing all of your babies the best possible outcome and please please take care of yourselves too.

Un MN hugs but what the hell,
Betty

Thank you Betty. I'm so sorry to hear about your DH's friend's little girl. I hope very much the treatment will be successful.

My advice to you would be to definitely get in touch and stay in touch regularly. You would be amazed how many people completely abandon you when this happens and the few that stay in touch are so precious at a time when you so desperately need support.

You can send anything that can be easily cleaned really, plastic toys, vinyl bath books, lovely laminated posters. Perhaps even a nice mobile for the hospital cot as.long as it is easily wipeable. If your dh can visit the parents, he could bring something thoughtful like a bag of cold coffees or microwave meals (not normally allowed to have hot drinks on the ward and usually only a microwave for cooking).

Thinking of them and wishing them all the best. They would be very welcome here of course but may not be ready for that for a while yet.

Farlo is right - it can be a very lonely place in hospital. Having contact would be helpful for them, I'm sure. After the initial shock and everyone showing lots of support, it does seem to drift with time. Stick with them and keep offering help.

I could do with a friend or six. DD's chemo got put back up and now her neutrophils are 0.17, so once again she's been taken off it. She's having to have a load of tests as her body has swollen up. I don't know. I'm going to miss more work, just when I'm being most scrutinised. I keep wondering what we've all done to deserve the endless shit.

Bumping with a smile .

How are you Kinky? DS is lying on the sofa watching the football. I know that worrying about a 20 year old with CML is not the same as having to stick it out in hospital with a desperately ill child, but he drives me nuts! He came back from university and didn't arrange his hospital appointments and move them to our local hospital. He's now down to a few days of Imatinib and so I'm worrying that he won't get seen before they run out. All daft of course, as this won't happen, but once a mother, always a mother.
All very minor compared with your experiences, so I hope things are a little better today for you and your DD.

Not great. You'll learn not to ask me . I feel like a little cloud of doom.

She's still very neutropenic and some of her bloods aren't right. They've taken a load more tests (we were there 8 hours today) and have asked me to take her back in a week, unless something alarming shows up and they will get me to bring her back before.

Consultant finally admitted teens struggle more with treatment. Through first bit, everyone told me when we got past intensive chemo, life would be normal. But we've struggled ever since.

I am feeling worn out this evening.

It must be hard to trust your DS with organising things. No offence to him - I am just thinking about my 26 year old brother. I had to ring the dentist up for him to sort an emergency appointment last time I was visiting as he hadn't bothered. He was in agony! I don't know why - my DH always puts these things off too. I don't want to say it's a man thing as I know that sounds sexist, but the men I know are all like this . It has to be a total emergency to inspire action!!

Bumping again.

Been in hospital again. Now out again. Still waiting for MRI results to ascertain whether nasty and invasive treatment is needed for iron overload.

Kinky - of course life is not normal after intense chemo. Apart from all the life changing side effects, it is a life changing experience which will forever clod your vision and change the way you see things.
Well that's what it has done for me.
I am quite bitter and jealous, but then I feel guilty when i remember the families that I know who don't have their DCs . My LO has been sick today - just a bug I htink - but it is a symptom of tumour that is v scary. Brings it all back with a whoosh, haven't been able to concentrate all day as a result.
Looked back at my blog and this time last year my LO couldn't speak with the pain of the cell stripping internally. Its just so horrible and awful to think about it, and now I have to face school and no doubt the bullying that will happen as she looks so different to everyone else. Its so childish to moan that it's not fair, but it isn't. Its shit.

It is shit Queen. DD had some bullying over having short hair. Kids can be cruel. However, I know what you mean about being grateful for having them. We lost yet another little one from our ward a couple of days ago. It is so cruel.

I hope your LO is feeling better now. It is very unnerving every time they are ill. DD still has 10 months of treatment to go, and then we move on to the lifelong worry. I am very tired!

I have updated blog with some advice for parents of newly diagnosed children. If anyone thinks I should add anything, please let me know.

My blog is a MN one, under health, 'The Acute Lymphoblastic Leukaemia Diary'.

Name-changer but lurker here.

Kinky, thanks for the heads up on your blog. The bullying must be hard to deal with. I also remember being on the wards and someone not making it. It is beyond awful.

My DS2 has 5 weeks to go. He has ALL so has had over 3 years of treatment. It has brought back so many memories. In a way I am happy his treatment will end, in another way I am re-living the horrors of it all. The McMillan nurse said this is normal.

I want to feel happy but I don't. It is hard to explain. I expected to feel relief and freedom. All I feel is anxiety. What if it comes back? What if I throw a big post chemo party and he gets ill again?

Sorry for the self indulgent post.

Queen and others, I hope you are ok. I'm just having a bit of a weak moment.

Every that all sounds totally understandable and not self indulgent at all. I think we have this fear for life now . Throw your party, celebrate getting through the last few years because you all have!! Then, take each day as it comes. There is nothing else we can do. Sending you love.

Haven't checked in for a while, but all is fine here. We're in hospital at the moment for chemo - cycle 5.

Ds1 didn't have his MRI scan as they hadn't arranged the anaesthetic and he won't have it without! So that's now been rescheduled for the end of July.

Keeping up to date with Expat and Ailidh - it's heartbreaking how hard this is for them. I really hope there's a breakthrough soon. We're on a 36 bed unit and it's full at the moment, not to mention the daycare patients. So many children going through this. It's just awful.

It is really awful Stinky.

They want to check DDs bone marrow next week as her counts have been low for no reason for a few weeks now. They said they aren't too concerned at the moment, and if her bloods improve by next week, they won't bother. But I'm still worried.

Came over here to check on you all. I know we are all thinking of Ex pat and family now and it brings all the horrible truths of the disease to the surface. I'm hoping your all holding strong and wanted you to know I'm thinking of you all too x

Hi lisa. I hope you are all okay too. I've been following Aillidh for several months now on facebook, and I've been rooting so hard for her. It seems like children are being relentlessly taken from us at the moment, and I am praying that she pulls through. I feel so dreadful for her poor family. It is a cruel, cruel illness. We've lost 3 recently at hospital.

It's a horrible nasty thing and we have lost a few friends over the last 3.5 years of dealing with this disease. It terrifies me as Dh has no match at all, he too has a odd family history.
Hate that another family is going though this and so young, same age as my dd1
Been following their journey from the start, can't believe it's come to this.