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 nocake...am so sorry....keep us updated...hugs...brings me back to when our oncologist told me that dd had leukaemia agin ...

bit of news from my end...the c section went well, i lost abt a litre of blood but wasn't too bad. i was petrified and shivering fr fear but got an amazing anaesthesiologist who took such good care of me and calmed my nerves by talking to me throughout...unfortunately the blood loss meant that there was not much blood left in the cord to bank.but am happy as i have a lovely gorgeous son now.slight jaundice but doesn't need treatment. he is doing so well, only 2.66 kg at birth but 3.1 kg two weeks after...am so happy...

oh no nocake...am so sorry....keep us updated...hugs...brings me back to when our oncologist told me that dd had leukaemia agin ...

bit of news from my end...the c section went well, i lost abt a litre of blood but wasn't too bad. i was petrified and shivering fr fear but got an amazing anaesthesiologist who took such good care of me and calmed my nerves by talking to me throughout...unfortunately the blood loss meant that there was not much blood left in the cord to bank.but am happy as i have a lovely gorgeous son now.slight jaundice but doesn't need treatment. he is doing so well, only 2.66 kg at birth but 3.1 kg two weeks after...am so happy...

oh btw the only thing that i noticed abt my ds is that he has what looks like two bums....i googled and it is apparent'y a sacral dimple, which the paed confirmed on monday...has anyone else seen this in their dcs????? it seems it is a mild form of spina bifida. i am pretty sure i tried to take my folic acid religiously, in between all the vomiting and nausea...

Congratulations on your new baby boy, how are you both doing? I've not heard of a sacral dimple before, is the doctor concerned about it?

How is everyone else doing?

DS had his first six weekly check up last week and all good, no tumours in his seeing eye. We have our first appointment with the artificial eye service on Wednesday. I really hope we see an improvement with the new eye, DS is oblivious I'm starting to get upset with people staring when we are out and about.

That's great news about the check up missmargot, you must be delighted.

Congrats on your baby boy Shits. Ds1 has a sacral dimple also but it hasn't caused any problems. I think it needs to be quite deep to be an issue if that makes sense?

We're ok, still in isolation after transplant as A developed VOD after transplant. Seven weeks today . He's finally turned a corner and started to improve which is great but still no idea when we'll be home. All a bit wrecked and suck of hospital.

How are you doing Nocake? Have been thinking of you, x

Brave I'm so glad he's turned a corner. You must be physically and emotionally exhausted after so long in hospital.

We are over the moon with the clear scan, this will be every six weeks for the next few years so nerve wracking but hopefully the good news will continue.

Hi everyone, I thought I would introduce myself, a couple of kind people directed me to this thread.

Basically I am looking for people to talk to who are sadly in a similar situation to myself.

I am a single Mum and my son was diagnosed with Leukaemia 18 months ago, and I just feel very alone at times.

I have a great family who cannot do enough to help me and my son, but I feel like I don't really have any real friends any more. I just feel like none of my current so called friends have made enough effort to support me and my son, and no one really understands my situation. In times of trouble you really do see who really cares.

For the past 18 months, we have lived a happy life, I try to make my sons home life a very happy one, and I am very proud of my son. He is very intelligent,strong and happy boy given the awful situation.

Most of the time I am a very strong person myself, I just have my down days now and again. But lately I just feel like we have become very antisocial, we don't mix enough with other children etc. I am a worrier as my sons immune system isn't good most of the time, and last year he was admitted to intensive care for contracting the flu, so I do worry probably more than I need to, but its my sons health that is most important.

I wanted to know how everyone else felt/feels anyone that may have gone through the same thing, or perhaps you're in a similar situation?

Thanks for reading

x x x

Welcome nikki. I'm so sorry that you and your son have been through so much. May I ask how old he is?

DS was only diagnosed in September so we are still in the early days but already I am finding that whilst many people have been incredibly supportive many others don't seem to know what to do or say and therefor do or say nothing. I've often heard the recently bereaved say that they felt alone because people didn't know the 'right' think to say so started to avoid them and I think cancer has the same effect on people. Some people seem so scared by the word that it actually seems to frighten them away.

Oh gosh sorry I've been gone a while.

Firstly to Shits and congrats on your son! You are amazing and I hope that you are both well. I don't know about the dimple, but I hope you've got the information you need now.

Brave that truly truly sucks. Have some too.

Nikki Alex has ALL. We are 15 months into 24 months treatment (shorter here in NL). I too feel very isolated at times. I know I became very insular which is most unlike me. I think also it's that no-one really understands what you're going through, as luckily not that many have to hear "Your child has cancer". It changes you forever, and I feel the new me has to readjust to people and how I interact with others. Can't explain it, it's just the "differentness".

Miss Margot also hoping the good news continues [grins]

missmargot, thank you. we are doing great, couldn't be happier. doctor doesn't seem concerned at all. he didn't even mention it.and i only noticed after i got home and had to change his diapers, so i mentioned to the doc at the two -week checkup and he said it was nothing to worry about..
good to hear yr ds is clear..

Bravelittlesoldier, hope you are home now. oh i had never heard of sacral dimples before, am relieved my ds isn't is not the only one if u know what i mean, yes his is not deep at all thank god.
and i suppose ot is a good thing it is at his bum??

nikki, am so sorry u have to join us. u know, in the eaerly days when my dd was diagnosed with ALL, i had a really good friend who suddenly stopped calling me or contacting me and ahe totally avoided me and ignored me...i felt really puzzled and hurt as we had known each other for what felt like most of our lives, we had met in school, but the funny thing was that people who i wasn't even close to and barely knew would come by and play with dd or donated blood or gave money and all sorts of things. but a feq months later she came round qith lots of food and huge presents for dd and later on she finally revealed that she was so shocked and atunned and saddened and felt at a loss as to how to come and talk to us and she said she cried everytime i posted dd's photos on fb...
so..don't take it personally...some people don't know how to handle it...i don't blame them really...whereas there are a small number of other 'friends' who will ask if dd is contagious, yes i had one. and i also had a colleague who started blaming me for not being productive at work, which was completely untrue. i also have another friend who also feels so disturbed and upset at dd's hosp photos on my fb that she either deletes them or unsubscribed to me...anyway i hope you get more aupport iirc and you will definitely get lots and lots of it on here...x

twunk thanks so much...hope Alex is doing well...
my biggest problem now is naming my beautiful baby boy...dd wanted to name him but nobody likes the name even though i loved it...and now i have another name for him but h doesnt like it..again. am feeling very depressed. i mean who the hell gave birth to him. me or the rest of the freaking world.
sorry am ranting but am feeling very unhappy about it...
anyway. i need a freakin holiday.
hugs to all xx

Hi Nikki, glad you have found us. My son's in remission at the moment after 16 months of treatment and I hear what you're saying about the isolation and friends distancing themselves. It's not right but I think it is sadly normal- but what I've found is that other people surprise you in how they support you, people you might never have thought of as friends.

Love to all. Xxx

sorry but i need to ask a quick question here as am not sure if anyone outside this thread would understand...dd has caught nits from her cousin and i think i may have caught them too...apparently the cousin got it from the girl sitting next to her in school, has had treatment but it's come back. h got a shampoo containing dimethicone from the pharmacists...is it safe to use on dd? given her medical history of having had two different types of leukaemia...i don't want to use pesticides on her if it can be helped...i also want to know if it is safe for breastfeeding..as i am currently fully bf...help....!!

Dimethicone is just a form of silicone - really nothing in it that could do any damage. It's in many (in fact most) shampoos

I'm thinking it makes the hair shaft slippy for the little buggers?

Just looked it up - it suffocates them! You learn something new every day. I would use it myself, I would use it on alex and I would use it if I was breastfeeding. Chemically it's pretty inert.

Lots of info here on the different treatments

en.m.wikipedia.org/wiki/Pediculicide

ahh thanks so much twunk! feel a bit reassured now..

On Thursday we have Alex's last bone marrow test and lumbar puncture. I don't think they do one at the end of treatment. Can't believe how long it felt at the beginning and now we have 8 and a half months left.

Hope you've banished the nits shits (I rhymed!). I'd forgotten to de-flea the dog and we've had those recently. Thankfully got it under control pretty quick but it was all a bit itchy for a while. The vets has a text reminder service so I've signed up for that - and now you get tablets to use every 3 months so I don't have to remember that often...

(Not that I am suggesting nits are anything like fleas )

Hi all. I just wanted to ask those whose children were diagnosed with Leukemia, what were their symptoms that made you take them to the doctor? Sorry to ask. My 3 year old son has a swollen gland on the side of his neck, i took him to the doctor about it before but she said its fine and will go down. It hasn't. Plus he is pale, dark circles under his eyes, doesn't eat as much as he used to and doesn't play as much as he used to either. Wish i hadn't googled but not i'm in a panic.

Hey everyone.

I saw this thread and I'd like to join. Not as a parent of a child with cancer, but as a former child with cancer... Well I say child, I was 17 when diagnosed.

I had something called osteosarcoma, which is a form of bone cancer. I needed 9 months of chemotherapy and a distal femural replacement. I'm not 25 years old, cured and pregnant with my 2nd child.

I just wanted to let you all know that there is hope. You're ALL amazing and that if anyone would ever like to talk as they are experiencing osteosarcoma or any other form of cancers within their family, and would like some advice from a different perspective. Please get in touch xxx

Long message just disappeared....

Coldwater - i don't know about leukaemia but many others do - the thing I have heard though is that you should be persistent if you have concerns. But remember - it nearly always isn't cancer.

Snave - genuinely lovely to hear from someone who's come out the other side. How did you deal with fear of recurrence and coping with follow up etc?

The thread's been quiet and so have I. I hope things are as ok as they can be for you all.

Xxx

Unbuckle- it was very difficult, I actually fell pregnant one year into remission, when I was still supposed to be getting checked for recurrences every 3 months. It was a very difficult time.

I was forever back at my oncologist being assessed between my usual follow ups as I was so paranoid. You definitely aren't prepared for that during treatment. After a few years I managed to reason with myself that there was no point worrying about it until I was told it had come back. It's not come back so it's saved me a whole host of worry.

I think it depends on the age of the person who is being followed up. As a mother myself now, I think that if I had a child in that position under the age of 12 then I probably wouldn't explain to them the importance of the follow up appointments, just deal with whatever outcome as and when it happens. It's slightly trickier the older they get as they're more aware of the implications of an unsuccessful check up ect.

I know no one has posted on here for a bit but I'm a bit worried about my 3 yo daughter she's been very pale breathless coughing continuously she's had a cold that's not getting better had it for 3 weeks now she's been complaining of a sore tummy a lot and having pain in top of leg she also has 6 red small spots over her abdomen I've read that these are all symptoms of ALL but my doctors are useless and will tell me it's viral her tummy seems quite hard and swollen aswell any advice on this would be great thank you! Xxx

Sharon - if you're worried, and you don't trust the gp, then go to a&e. It probably isn't cancer. But if the gp isn't reassuring you, then I'd have her checked out properly.
Hope she feels better soon. X