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Original poster

Children with Cancer

563 replies

Twunk · 28/02/2014 13:39

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

OP posts:
Nocakeformeplease · 24/09/2014 08:30

Hi CoffeeMonster. I'm afraid I don't know very much about tumour markers but I do know that if they had even the slightest concern she would have been called back immediately for more testing. They would never take a chance if they suspected cancer in a child. How long ago did she have the tests done?

Coffeemonster1 · 24/09/2014 08:39

It must have been 8/9 months ago now. They said they would repeat all bloods once she was discharged from hospital, home and seemingly well, to see an improvement, but we haven't had an appointment through yet. We are due to see consultant and our local hospital and Oxford next month so will chase this up but it's one of those niggles that makes you think.

unbuckle · 24/09/2014 09:38

Nocake, yes we're going to go to the end of treatment day - provided we are actually at the end of treatment - scans and appts are next week.

Coffeemonster - afp is a tumour marker for liver cancer. As far as i know, in children with cancer it is very elevated indeed-hundreds or thousands. If there was any indication of cancer there'd be immediate investigations so please don't worry.

Coffeemonster1 · 24/09/2014 10:57

She has alpha one anti trypsin gene so will have potential problems with her lungs and liver. But by what you have said the levels she had are nothing to worry about. Thankyou all for your replies.

Labtest7 · 25/09/2014 09:09

Hi. Haven't posted for a while. Beth is now a year off treatment for ALL and doing well. Last October she had her wish trip to give Kids The World which was absolutely amazing. This is her with Mayor Clayton at GKTW. Hope all your children are doing well

Original poster
Twunk · 25/09/2014 16:09

Hi labtest Smile glad to hear she's doing well! Alex also has ALL and is on the equivalent of regimen A. He's at school full time and other than some additional tiredness and a mid week surprise vomit, you'd hardly know.

I'm more worrying about DS1 and this language delay thing. Week 4 with learning to read and he's already struggling Sad and as it's complicated by the language issue...

Last night he said it would be better if he lived in England. I think his teacher has said it's making things harder. It's not helping but it's not the problem! The problem is that he's struggling to make the sounds add up to a word.

OP posts:
Labtest7 · 26/09/2014 12:38

That must be hard Twunk. Is he delayed generally or just in Dutch?

Original poster
Twunk · 27/09/2014 10:41

Both - they tested in both English and Dutch and English really no better than Dutch. His English vocab was marginally better but still below normal, sentence structure terrible in both, understanding also poor. They did a non-verbal intelligence test which came out high normal (113 I think?).

OP posts:
shits · 29/09/2014 11:50

hi everyone, sorry i have been away for so long, screwed up my password, plus things have been getting on top of me. a lot has happened, i think i last logged on here in march maybe. just to refresh, my dd 10 had a transplant last year, she developed AML after a year off treatment for ALL. what cursed luck. she has just had her one year post transplant follow ups with a whole bunch of specialists, heart, lung, eye, endocrine, etc and also bone marrow test of course. everything seems fine but we havent done the bone density test yet and her calcium and vit d is always on the low side. she is off all meds now final'y except for calcium and vit d. her bone marrow results so far have been amazing, negative mrd and her blood type has changed into the donor's type. am so happy and grateful but obviously after what we have been theough, i keep asking myself how long will it last? am also 36 weeks with second child and have had all sorts of complications, you name it, i have had it, from bad morning sickness til the 4th month followed by gastric and heartburn, bleeding in the first trimester, small sac, bacterial vaginosis, shortlived hyperthyroidism, and pnd in the first trimester.... and now some swelling in my hands and carpal tunnel..

am now having placenta previa major type 4 since about 20 weeks. was hoping it wd shift bt its obvious it wont now. scehduled to hv c sect in two weeks and i am terrified as i have never had an op in my life, and i stupidly googled and it wasnt pretty.

had light bleeding last week during dd's checkups and had to get husband to fly down and take over. dd's checkups are in a different country as we have now moved as husband wanted to switch jobs and move to be with his fancy woman. he was having affairs while i was stuck in hosp with dd during her transplant although i only found out after. it pretty much explained his lack of interest and commitment during that time.

anyway..just wanted to check in again, hope you all don't mind...needed a place to be where i don't have to pretend to be happy....i won't exactly be a ray of sunshine...as the name says, too much shit is going on in my life right now, but all that matters is that dd and my soon to arrive ds are both healthy...am really hoping that he stays in for as long as he can...he is a bit on the small side apparently, i was just unable to eat properly throughout my whole pregnancy due to all the morning sickness and heartburn. have barely put on any weight...desperately trying to fatten him up in the final leg by stuffing myself with cake...ok will end here ....thanks for listening if u managed to read this far.

Bravelittlesoldier · 29/09/2014 14:57

Wow shits, I think your name is remarkably restrained given all that!! What an awful time but congratulations on your DD's great results. Can only imagine how hard it must be to keep your anxiety at bay. Hoping your DS stays put for a while and you have some support around you, x

Original poster
Twunk · 30/09/2014 08:13

I've been thinking about you shits and wondering how you were getting on. Excellent news on the 1 year check! Smile and that you are expecting a little boy. Smile

I'm so sorry that everything has been unnecessarily hard ((((((())))))) - what a time you've had.

OP posts:
Original poster
Twunk · 30/09/2014 08:14

I'm not sure what sort of cunt it takes to have affairs when your child is fighting for her life in hospital, but your husband is certainly one of them.

OP posts:
unbuckle · 30/09/2014 20:28

Yy to everything twunk said. Good to hear from you shits, what a remarkable year and fingers crossed that next year goes your way. Xxx

unbuckle · 30/09/2014 20:29

I mean 'remarkable' obvs.

Labtest7 · 01/10/2014 12:05

Twunk, I really hope your older son is getting extra help and the situation improves.

Shits, I second the comments about your husband. He sounds like a waste of oxygen.

I had placenta previa when pregnant with Beth. It was also grade four and was posteria. It didnt move and I had a c section a month early. I think they would have done the section at around 38 weeks but I was incredibly anxious as I got nearer term as I'd lost my first child at 42 weeks gestation.
Glad your daughter is doing so well. Mine is now a year off treatment for ALL but I'm a wreck before every check up.

Original poster
Twunk · 02/10/2014 16:11

I've just posted in special needs about it. I'm not coping well with the implications of it - especially as everything I read is so negative about SLI. Reading about ALL was a breeze in comparison Confused

OP posts:
shits · 06/10/2014 14:34

Thank you all...thanks for listening..

thanks Twunk, hope things are improving with your older son...

Labtest am so sorry about the loss of your first child. I can't begin to imagine... :( How did the c section go? It turns out I am having it this wed. i saw the doctor on friday and he said i was having some contractions, and gave me steroid shots and said i better have it done earlier...Am absolutely terrified. I think I have tomophobia...had a complete meltdown the whole day...am so not ready for it..plus i have no one to hold my sweaty hands in ot..am utterly petrified beyond words...pls help me, i need reassurance that everything will be ok...i don't know what will happen to dd if i am not around to protect her from distracted father and stepmother...

Original poster
Twunk · 06/10/2014 16:38

Now I've checked what tomophobia is Wink I can see why you are so scared.

It will be fine. It will all be very calm and you will be looked after. Tell them off your fears and that you need reassurance and understanding.

I've had a c-section and I recovered so much quicker than I thought I would.

Just remember you will meet your little boy at the end it, and your difficult pregnancy will be over.

It will be fine with your daughter, her father will just have to step up won't he?

Big hugs to you (((((((())))))))

OP posts:
missmargot · 06/10/2014 20:43

shits I'm so sorry you've been through such a horrific time, here for as much virtual hand holding as you need.

Some tentative good news from us- DS doesn't need chemo and it looks like the enuecleation took all of the tumour with it. We are still waiting for the histology to understand whether this is heritable and what the risk of secondary cancers is, plus his seeing eye will be screened under anaesthetic every six weeks for any signs of tumour, but for now good news.

DH took DS to a class today run by the children's centre. At the end the health worker came up to him and asked about Jude's eye, he explained and she was great about it but she had asked as she had safeguarding concerns. I understand why she asked and I'm glad she did but it really upsets me that people might think we have hurt him in some way.

Labtest7 · 08/10/2014 13:59

Hi Shits. My c section was fine. Very relaxed and recovery was extremely quick. Beth was 7lb 4.5oz which was quite a good size for one month early, she has slight jaundice but didnt need treatment. Honestly I would elect a section again if I was to have another baby (which I won't).
Really hope all goes well with the birth xx

Nocakeformeplease · 09/10/2014 14:43

My darling boy has relapsed. I am absolutely heartbroken

missmargot · 09/10/2014 16:12

Oh Nocake, I'm so sorry. Does this mean more chemo for him? Sending you lots of love.

Bravelittlesoldier · 09/10/2014 18:47

Oh Nocake I am so sorry to hear that, you must be devastated. Thinking of you and wishing you strength, x

Original poster
Twunk · 09/10/2014 22:24

Oh nocake I am so utterly sorry. What awful news. I just want to send you all a massive hug. This is so fucking unfair. (((((((())))))))

OP posts:
unbuckle · 10/10/2014 12:56

Oh nocake, that is so wrong and unfair. I know there's nothing i can say that will make things better - i wish i could. Am always here if you want to talk.

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