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.

Hi everyone, have not been on for a long time. Hope everyone is ok. DD has been well most of the time but she has been having a cough for the last week and we are not sure what it is. Doc reckons it is a mild virus. Lots of viruses going around with quite a number of chemo kids being warded apparently. She doesn't have any fever or anything. But she does have watery poos, although we also have no idea what it could be. She is not having any stomach cramps. Doc says it could be the phosphate supplements she has to take so she has stopped it for now. Her platelets and neutrophils are also dropping a bit, but not so much that the doctors are worried. Thankfully we are not warded. She still needs weekly checkups and yesterday her calcium and magnesium levels were low so we had to stay in for a 3-hour infusion. Apparently it is common for cord blood recipients to have their blood counts start dipping a bit around this time, she will be Day +100 on Jan 5. Apart from that I have been struggling with major domestic issues.
In other news, am also finally feeling ready ttc (is that the correct acronym??? have not ttc since we had dd 9 years ago.) Have an appointment for a checkup tomorrow. As I mentioned, I have been out of it for 9 years...Just out of curiousity, and bearing in mind that dd is an extremely rare case of having developed two different types of leukaemias within a short space of time (and she was expected to have been cured the first time she had leukaemia as it was a low-risk type, well they were wrong as it turned out), is there some sort of prenatal genetic screening which I should undergo? Or something? I just want to make sure I am doing all the right things and covering all the bases before I begin so to speak.

Hi Mmmmmsleep, sorry you had to join us...but as minmooch says this is a great place to get support from others going through similar situations. Wow treatment in the US! That is indeed great news that they are offering you the best treatment available. We are also away from home, and I struggle a lot of the time with no family support, especially since I can't go out and get groceries (prepare for meltdowns when we run out of eggs!), and with dd on steroids she was constantly hungry and I was basically cooking her meals and disinfecting the house 24/7. She has just been taken off her steroids thank god, so her appetite has been decreasing although now I am worried she is not getting enough nutrition into her body!! sorry to hear that your ds has an infection in his hickman, dd had that in her chemoport twice previously. Luckily she didn't need to have her port removed or changed. Hope your ds gets out in time for christmas. And you have probably mastered the art of giving him his meds by now, but when dd first started treatment, we mixed hers with juice or yoghurt drinks. Bizarre now that I think of it, cos the hospital we are in now, does not allow yoghurt drinks while they are having chemo haha.

Yikes Twunk, hope Alex's head is better! Fantastic news re MRD!! Wow you have a new car! (Well not so new by now! Wish we had a car too. I very stupidly told dh we didn't need one when he offered to get one before dd had her sct, but i was only saying that in order to save money. Am beginning to realise that was very stupid of me and I desperately want a car now! It would be nice to be able to pop in and out of places quickly with a car, and not to have to wait ages for a cab during peak hours and also to be able to take dd for a drive around to see the xmas lights or whatever, when she gets bored at home!!

Unbuckle, hope Isaac gets his line and you get to go home soon too!

Trazzles, hope the MIBG goes well. You talk about feeling greatly upset about Joe missing out, I feel exactly the same way. I look at dd and I just feel so sad for the 'normal' childhood she has been robbed of. Playtime with her friends that she has missed out on. Holidays. Even daily trips to the shops or just going swimming. When I hear other people complain about their 'miserable' lives, I have no patience or sympathy at all. When dd was one year off her ALL chemo, I took her on a holiday to celebrate and we went to Disneyland Paris (we celebrated her birthday there and had a cake although I was a bit disappointed that I couldnt get a character to bring it out! lol) and then we went sightseeing in Paris, and we went skiing (our first time on a ski holiday! haha) and then we went to Dubai to stay with sil (she was working there at the time). We had such a lovely time, and I am so glad I went because at least we have that now. Having said that, now is an extremely difficult time for me right now cos I keep seeing photos of all my friends and their kids going on holiday and it's making me desperately sad and upset and frustrated and angry because me and dd are stuck in this shitty time. Even though I have no right to be. And dd is doing so well so I should probably be more positive and think that never mind, we can do whatever we want once she gets the A-OK from her docs. Bah.

Nocake, ooh hope he enjoyed meeting Father Christmas! Last week we had a surprise at the hospital. There was a Disney Musical show in town and Mickey Mouse and Goofy dropped by the hospital to meet the kids! A bit babyish for 9yo DD but she was still entertained haha. Apparently Beyonce also dropped by a couple of years ago and sang to the kids! Justin Bieber was in town a while ago, pity he didn't drop by also hehe.

Hi to Velvetbee, so sorry you have had to come here too. My dad had a high grade glioma in his brain. I was told that the prognosis is better with children, hope that your ds' is indeed just cyst activity.

Really really hope everyone gets to go home for christmas. Much love to everyone else I may have accidentally missed x

God I can't wait for all this to be over. Although it never really will be over will it.

Sorry missed a few things I see!

Nocake!!! That's horrible!!!!! Hopefully his counts will go up soon and you can go another day.

Minmooch, dd got exposed to chickenpox twice while she was on chemo for ALL, and the doc gave her immunoglobulin shots each time.

Unbuckle, I had a mouse in the house last year and first I tried to get the cat to catch it, well that plan didn't work. In the end, I spotted it one day and I don't know what came over me, well I guess it was a case of 'NO WAY IN HELL ARE YOU COMING ANYWHERE NEAR MY DD' and I threw the catcage over it and ermm stomped on it til it died. Eeek.

Twunk, dd decided to keep her chemoport even after her 2 yr treatment ended. Which turned out to be a good thing in the end.

Oh and meant to add Twunk, hope your dh is less moody now

We get mice all the time due to one of the cats, but they're usually half dead . We had a very lovely one once and it took several days to get it to freedom but it managed to find the door in the end just as I was trying to pick it up with a towel!

Had one living in the roof once which was dealt with by Rentokil.

Other cat brings in worms(!!!!!!!!!) - garden, not intestinal.

hazlinh I hope DD's feeling better soon.

Nocake so sorry about the failed plans. I hate it (as you well know!) obviously your child's health comes first but it just SUCKS! I hope you are able to get your money back. I don't usually play the cancer card, but for £400 I would! You never know, they may even allow you to go back another day instead if that's possible to fit with his treatment.

Re: lines, J has a Hickman line (thank goodness as it turns out he's scared of needles...) but even if he gets NED I think it stays in til he's 3 months clear. I long to see his little chest without it in. I don't see his NG tube now because it's always there and so visible but the line is, to me, a very visible sign of his illness.

min any update on the dog?

Ps. Yes I know I'm crap at name-changing!

Nocake, actually Trazzles idea is a great idea. I would try and do that. When dd first had ALL, it was just days before our flight to London so I had to cancel it, and had to move hell and high water to get a refund for three tickets. Managed to in the end but it took a year and countless hassling on my part to the airline. They were cheap tickets on a budget airline so technically no refund was possible but I played the cancer card hard. Well it wasn't my fault we couldn't fly and there was no way we could have used the tickets in two years. When dd was diagnosed with AML, again unfortunately it was just a few days before our big holiday to Italy (God likes to laugh when I make plans). This time (thanks to the previous experience!) I had booked normal price tickets on a full-service airline so refunds were a lot easier.

Thanks trazzles! she looks well at the moment, dont know if that is worse or better! no idea why she is having watery poos. the cough is better today though

is there some sort of prenatal genetic screening which I should undergo?

I know there is mutated gene which has been associated with familial AML but it's pretty rare I think and unless there is a history of AML in your/your DH's family screening would be pretty pointless (I believe there is a pre natal screening available for at risk pregnancies but I don't know how wide spread/available it is), I don't think there is screening of any kind for other forms of leukemia.

^^the best people to check with would be your DD's oncologist to find out if it's possible that there's a genetic component and/or try and find a medical geneticist and get their opinion.

I'm going to be ttc too Hazlinh! It's been 5 years just about, we were meant to be trying in the summer but...well that didn't work out.

I don't think there's any screening. I will be having every test going (I've only done the routine scans in the past). The hospital we're in now tends to cover a lot of those - it has high-risk birthing unit too. Hope not to end up here!

Final lumbar puncture under sedation done today! And final high dose MTX started so yay! Only 2 LPs to go - and both are under a GA. I won't miss them - it's quite the hardest bit of this as Alex looks completely out of it and then does cry in pain. He never remembers though thank goodness.

Andro, Ah I see. Thanks. Hmm not sure if it was AML but one of my cousin's dc had leukaemia. and one of dh's uncles also had leukaemia. I did sort of raise the issue with dd's transplant doctor and she suggested I see this gynae, so am seeing him today. Googled him however and he seems to be an expert in infertility and ivf so not sure if the transplant doc understood me correctly. Although she did say that the gynae will have to see what dd has and then see whether there is anything he can do. Not sure if there is a geneticist at the hospital we are at now. There was a paed geneticist at the previous hospital and he did work with dd's previous onco closely.

Ooh Twunk, good luck. How exciting! Ooh yay re final LP and final high dose MTX! Time flies eh.

hi hazlinh. .where are you? in uk you'd see a clinical geneticist usually first. good luck with it all.

Hi mmmsleep, we are in singapore. Ok went to see him, he said there is no screening for leukaemia. He did a whole bunch of other prenatal blood tests...should i try and see a geneticist??

you might want to see one if there is a strong history of cancer in your family as there are tests for some genetic problems but mostly just to tell you if you have it then you can use that information to see if you want to ttc. this is the route we're going down at the moment as for the genetic problem my family may have for me I could not ttc again as the chances of my next child getting cancer too would be too high to accept the risk. but that's a very personal decision. most leukaemias are not familial but you are obviously concerned so yes I think it would be useful for you to see a getetics consultant so you feel you have all the information you need to make choices. once you know you can never un-know. genetic testing is such a tricky area :-(

Oh dear... sorry to hear that mmmmsleep yes i agree. It is tricky...

Alex was very poorly when he was born (infant respiratory distress syndrome followed by some seizures) and it took me a while to recover mentally from that. Having a child is a risk - it does open you up to potential heartbreaks - miscarriages, scans, scary shit - though obviously I still think it's worth it. Because the chances are everything will be fine, and if it's not we can deal with it.

Well we're back in hospital too now. We spent the day at the Marsden for a long chemo and then half an hour after getting home, D spiked a temperature so we had to head straight up to our local hospital. Poor things little face just crumpled when I told him we had to go in - he was begging me to let him stay at home . He missed his first nativity today and will miss the school christmas party to tomorrow too, so gutted for him.

He's fine now he's here though, he just gets on with it bless him and I bribe him a lot! His temp has gone but he's started on the ab's and we will be in until they get the cultures back at least.

On the plus side I had some lovely company - by bizarre coincidence I was in the cubicle next to mmmmsleep! Thanks for the chat last night - was great to meet you and your lovely DS.

Lovely to hear from you Hazlinh. How is DD today? I don't know anything about genetics I'm afraid but I hope someone is able to put your mind at ease.

I hope I's new line is in and he's doing okay Unbuckle

Hope all okay with you twunk. Very glad to hear the last LP under sedation is out of the way now

I hope Trazzles and Min that you are both bearing up.

Love to anyone I have missed x

Oh sorry to hear that nocake - what a complete arse. I'm sure lovely to meet mmmmsleep though! I miss the opportunity to meet other cancer mums here - not knowing the language it's hard. Plus also we are all in very separate rooms and the family room is tiny.

I hope you are out ASAP. But it will probably be the usual 4 night stay....

so glad we're out again. was lovely to meet nocake though :-) I should have left you the choc cake sorry! when they said we could go I packed so quickly it looked like they'd told us they were releasing a lion into the room in 5 mins ;-)

twunk where are you? that's tough not to be able to chat with other mums on the ward. mumsnet wins again I guess. I agree with your approach re having kids and accepting what happens and we've been pretty chilled out parents but I just can't get over a 90% chance of my next child having to go through all this if they inherit the gene but the whole having babies and genetic tests things are both v personal choices. and ours is v rare situation.just rubbish anyone has to deal with cancer at all.

I feel terribly ungrateful as I should be happy we're home but having a down day. ds' hair started falling out mon night so yesterday we shaved it and then today we found out he's lost some vision in his eye and we need to start the battle of getting him to wear a patch (neuro problems due to his tumour). they're such small things but just looking at my little boy whose lost weight with his line in his chest, shaven head and patch feeling angry at what this cancer has done to him and I know there's more to come. I do know we're lucky, I've already met people in much worse positions and a dodgy eye isn't a biggy in the grand scale of things it's just one more thing and I'm sure a good night's sleep will get me some perspective back!

Oh mmmmsleep it's not a stupid thing to worry about at all! In the first month of treatment Alex put on 3.5kg (from 16.2 to 19.7), had a huge face, started losing his hair and became utterly miserable - I knew it was the steroids and chemo but it was hard because he didn't look like him any more. It's a lot to take in.

And it's funny how our parameters change - 'normally' losing some sight would be a massive thing in itself. Have a Thursday hug ((((())))).

We also always leave the hospital as if a lion is going to be released. I think I am always slightly scared they will change their minds .

wish there was a like button twunk. thanks x

nocake sorry that you are back in hospital but how nice to meet mmmmsleep. Hope you are back home soon. Xxxx

I still find it hard 2 years on that my son has to miss so many things, even things like the carol concert because he is too tired/disable/sick/in hospital/someone else is ill. Watching his friends take their driving tests, drive to school etc. every little thing is a reminder of what my son has missed out on, is missing out on and will continue to miss out on. One of my major fears is that he will die before he has had a chance to take a girl out, share a first kiss etc. it makes me incredibly sad that he can't do these normal things.

And mmmmsleep it is a big thing, sight problems. It's yet another thing our children have to put up with. I feel so utterly fucked off with people saying to me to be grateful he is still here. Of course I'm grateful he is still here but what a price he has had to pay, two years of surgery, treatment, sickness, disabilities, having to be in a wheelchair, not being able to do things on his own, not being able to get anywhere on his own. Having to have his mum help him get dressed. Even using the disabled toilets at school is something I can't get used to for him. Getting the wheelchair out of the car, fixing it together everyday, doing it in the rain so the seat doesn't get wet, getting soaked through myself so I keep my son as dry as possible. Pushing the wheelchair up hills because my son can't walk up them. Seeing my son crawl up the stairs because he is too tired to walk safely up them and at 6ft 1 I can't carry him. And the thought of a stena stair lift filling us all with horror. Wiping my 18 year old's bottom after he's done a poo as he's frightened of there being blood. The fact that we can't go out walking the dog together as easily. My son feeling the cold so much and wrapping him up in blankets, scarves, hats and gloves. Having to help in in and out of the bath and shower, and not leaving the room if he's in the shower in case he falls. Constant worrying the whole time.

His friends have gone off on the CCF winter camp. The thing my DS loves to do and he can't. He has barely spoken the last four days and I know it is because he is struggling with everything. How his life is not his life anymore. And I can't make it any better for him all I can do is help him through it.

On a positive note my son has just gone 9 days without being sick. 8 whole days in a row - this is the longest in 2 years. And it posses me off that the things that are positives are still pretty shit anyway - most people don't have to worry about their child being sick every day.

Still trying to be positive (not sure it's working) is that the dog does not have a tumour in his foot - just an infection between his pads. I'm tired always thinking if the worst case scenario. God this is all so interminably tiring.

Ok, kick up the backside time and time to get in the shower, walk the dog, find my Positive Mental Attitude and face another day.

This was meant to be a supportive post but had turned into a bit of a rant. Let's hope nobody wishes me a Happy Christmas or says cheer up it might not happen might just get a mouthful from me!

oh minmooch thank you for your support and I wish I could give you a massive hug. it just isn't fair. I'm totally with you on the people that try the "smile it might not happen" line. last week a bloke signed through his car window for me to smile....he was lucky he was in a car! I was on my way back from ds chemo with him crying in pain in the car but then jolly jimmy didn't know that did he :-/

amazon man today very sweetly offered to carry the heavy parcel in for me as he didn't want me carrying it "in my condition". I just laughed as I took it off him and reassured him it was just my stubborn baby fat. there was a time it would have bothered me. now it truly doesn't matter. bigger fish to fry than my belly. I had thought the stress might shed a few pounds but it appears the cake and chocolate diet is a fair match ;-)

onwards and upwards. ... and have a blanket of mumsnet love to wrap yourself in minmooch xxxx

Thank you mmmmsleep. Xxxx

I had a little smile from DS last night just before he went to sleep - he hasn't smiled in a few days :-( - and he said 'maybe I'll feel a bit better tomorrow'. It makes my heart break. He was meant to go to his Dad's house last night and decorate their Christmas tree there but he just wasn't up to it. My other son went but I don't think he was interested in the tree!

Hope everyone is holding up ok. I think Christmas is particularly hard as everyone is celebrating and there is this pressure to make everything lovely and exciting. And I can't let myself enjoy any of it (not that anyone else would know, especially the kids). I suppose it's a form of punishment to myself for being healthy whilst my child is so ill.

Thank you for providing a place where I can let out my thoughts and fears. Being on my own through this means every night I am left to my own thoughts.

On a lovely note though I hope that those of you TTC are showered by fairy baby dust and are able to add to your precious families soon. It is a daunting prospect but we've all faced daunting with our ill children and a new baby is like a little light of hope and happiness. Xxxxx

We got out last night about 7, so a relatively short stay - yah! Seems as though it may just have been a reaction to the chemo this time. DS is still a bit sicky but otherwise fine and has been hindering helping me clean today

mmmmsleep we all understand what you're saying. They are not stupid things to get upset about at all. Of course none of them individually are a big deal in the scheme of things, but its what all these little things represent. I think we've all struggled over the hair thing - it's the one thing that screams 'cancer'. I hope you managed to get some sleep and lots of cuddles with your babies.

Hazlinh how is your DD?

Oh min rant away. We're always here to listen, I just wish there was something practical we could actually do. What you and your family are having to endure is simply beyond reason. The one thing I am grateful is that DS is still young and so doesn't really realise the seriousness of his condition or when he is missing out on things - he still at an age where a new car or dinosaur fixes most things. I know it's not that simple for teenagers. My heart aches for your poor boy, its all just so bloody wrong and unfair. I hope with all my heart that he does feel better tomorrow and every day after. And I think you are just amazing - you really couldn't do any more than you already are for both your sons and despite everything I am sure that they both know they are surrounded by love. I hope the all come across the way it was meant, I'm rubbish with words x

Hello to Twunk, Unbuckle, Trazzles, Stinkyfeet and anyone I have missed.