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.

Thanks though I just noticed I made a mistake at it's ALL they think he has

Hi to you all and a sad welcome and sympathy to Twunk, NoCake and Carebear.

I am so sorry to hear that you are all at the start of a journey which none of us wanted to take and probably all still in shock to some degree. At this stage it feels like a nightmare and you just want to wake up and it be gone! My Dd was diagnosed in 2010 at age 16 with Acute Lymphoblastic Lymphoma and had the same treatment as for ALL leukaemia. 2 years and three months in total, finishing in February this year. I remember those first days very well. A new world of hospitals, nasty invasive treatments, a fear of the effects of the chemo, a confusing list of drugs and side effects, frustration of delays long waits and cancelled plans. (I remember thinking it was all a mistake too Twunk) But the positive is that many children completely recover! The children themselves are very adaptable and seem to soon adjust to this new world. We, the adults find it all much harder in some ways...even now as I attend a post treatment seminar, many are still in post traumatic shock.

Twunk, the best thing is that your son has been diagnosed quickly and can start treatment soon. From our experience the first three months of intensive treatment is the hardest, then things get a lot better (and by then the cancer should be in remission). My Dd managed a lot of school and did not lose her year. She coped incredibly well with hair loss and wearing a wig. In fact, she has now completed her first year at Uni. The kind ladies here have lots of advice. There is also an amazing support network in the UK of charities for children and they helped us and Dd.

Sending hugs and prayers to all your children. Dd and I are very close because of all we have been through together. Keep strong for them and take care xxx

Carebear you are doing nothing wrong. My DS had the worst side effects to each chemo, picked up every bug going, went into kidney failure, got fungal infections. We were in hospital for 5 and a half months and DS only made it home one night in all that time. Some children just have it worse than others and it is so not fair. Keep strong. Xxx

Nocake my DS was much chattier yesterday. He only got out of bed once though but the big news is that he went into the bathroom and had a shower all by himself - the first time in nearly two years! His trip has given him confidence. Hope your DS remains happy. Xx

Twunk I am so sorry that you have had to join this thread. I have left a message on your other thread. You will be in shock for sometime to come. For a parent to watch their child seriously ill is the biggest living nightmare. When you have other (healthy) children to look after too it's a very difficult balancing act. Accept all the help you can from friends, family and even strangers. The kindness I experience from complete strangers still floors me. I hope treatment starts soon and that Alex has a smooth ride. Xxx

My DS keeps being sick. Not sure if it is an increase in the chemo this month but is a chemo that is not meant to make them sick. In my mind I am terrified that the tumour is rapidly growing now he is on a much more gentle chemo. Scan is due in September. No point in having it any earlier as they can not do any more for my son. It is a never ending worry. I am frightened that he will die in his sleep when I am not with him. Every morning I brace myself before I go into his room. I have spoken to my GP about my fears and I am on Ads so nothing to do but just keep hoping that a miracle is around the corner for my darling boy.

Thank you minmooch for your kind words.

I've not read your story (am on phone and not a great connection) but I am so sorry you are going through this. Ironically I was trying to come off my ADs but obviously that won't be possible. I don't think they can stop the thoughts but I hope they are some help for coping xxx

Hi Twunk. i also read your other thread and i am so sorry to hear that he has ALL. I'm not surprised that you wonder if they have made a mistake after what you have been through. It wasnt that long ago that we were in your position. the best advice i can give you is just to take it one day at a time and ask them not to bombard you with lots of information. its very difficult to take it all in especially when you are sleep deprived. you will know when you are ready to know more. you must also make sure that you look after yourself and try and eat properly. i made the mistake of not doing that and made myself very poorly and had to leave my dd on her own for 2 nights. i am also on ADs and was ready to stop them but have decided to carry on with them, and they do help a little bit. keep strong, you (and us) will get through it, your son will give you the strength you need.x

Minmooch - I'm so pleased that DS enjoyed his trip and particularly that it has increased his confidence, that is lovely to hear. I am so sorry though that he is being sick now though - it must be absolutely terrifying . How is he now? There could be so many reasons for the sickness but it is completely natural as a parent to think the worst. Is there anyone at the hospital you can talk to? I wish with all my heart I could take away the worry and stress if only for a bit. It must be incredibly draining. Not sure where you are based but I'm in Surrey so if you're anywhere near there and need a friendly ear, I'm always here.

Twunk - i have posted on your other thread and I am so sorry you find yourself here, especially after twice being given the all clear, it must be unbearable. How are you all bearing up? Silly question i know. Have you heard from your parents yet? We're all here for you every step of the way.

carebear - I'm so sorry to hear your poor DD has been admitted with infections again. It really is so frustrating, especially when they appear well. I felt the same as you, that I must be doing something wrong for DS to have been admitted after the first two rounds of chemo. When I think about it logically I know it's unlikely but I think as parents we always blame ourselves. It must be very hard with three other DC to look after. Sorry to hear things are difficult financially too - we really don't need any worries on top of everything else but unfortunately the day to day stuff still has to be taken care of. I hope your DLA claim is accepted soon - it should also mean you are able to apply for carers allowance too? The Clic Sargeant SW recommended that I apply for DLA too, but i just dont think it will be accepted. I should give it a go though. I left my old company and was due to start a new job the week DS was diagnosed, so consequently I didn't get any paid leave at all. Things should be okay for a month or two but after that I'm going to have to remortgage (very difficult with no job!) or borrow the money from family.

chocolateorange - thank you for your lovely post, its great to hear how well your DD is doing

Touch wood DS seems to be doing okay after chemo on Friday. I really hope he has a good week as he has a triple dose next week and it knocked him for six last time so am nervous about next week. We have been given a provisional date for surgery of 21st August - I can't even bear to think about it

I feel like an amateur at the moment because I just don't know anything about chemo or anything that can help anyone. But then who wants to become a pro at this?

At the moment I feel like I am acting in a drama. I am having such real and painful emotions that they become almost unreal when expressed. It's like I can't believe they're really mine.

I'm so sorry to hear about money worries. Last thing you need on top of it all.

My parents come next week - I cried a lot down the phone to my mum (in the corridor) and she said she and dad will support us every step.

Alex has had a better day, and is far more comfortable. I just keep thinking I am going to see him go downhill and I can't bear it.

Twunk - I still sometimes feel this cant really be happening to us - maybe it's just our minds way of protecting us a little. I'm so glad your mum and dad are there for you. I truly could not have got through this without my family and friends.

I found it very hard when DS was so poorly when chemo started, especially as he hasn't had any symptoms at all before then. He is well at the moment but I know it is going to get worse before it gets better - I have to keep reminding myself it is a means to an end.

minmooch - I really hope DS is feeling better now. Have been thinking of you x

Hi to Carebear and everyone else. Hope you had peaceful, unevenly full weekends.

DS had a lovely day at his cousins birthday BBQ and is now snuggled up beside me - god I love him so much. I simply cannot imagine life without him.

Uneventful not unevenly full!

My favourite song is "no surprises" by radiohead. It's how I'd like it to be at the moment but it would seem I'm going to be on this rollercoaster for a while. I'm just ordinary and I hate drama of any kind.

Glad your DS had a lovely day. We had a nice day yesterday as Alex walked a bit and really enjoyed himself. And just now we were all racing round the playground - he was laughing his head off.

Hi Twunk. Sorry to hear of you're son's diagnosis. My daughter was diagnosed just over 2 years ago with ALL. She was also 4 years old. She is being treated on UKALL2003 protocol on regimen A and is due to finish treatment September 20th this year. She has sailed through most of her treatment with just 4 admissions for temperatures where she otherwise felt well, and managed to keep up a fairly decent school attendance (68%) this year. She did lose her hair twice and wore a wig which was her choice (I'd have preferred that she didnt) but due to her age and the age of her classmates this was never made an issue. Most children with ALL do very well and can live near normal lives. My daughter goes swimming, to rainbows, drama and takes part in school pe lessons. I know it's a huge shock to receive this diagnosis. I took it incredibly badly but you do learn to cope with it. There is a very good Facebook group called children with ALL (leukemia) that I have found helpful for support and information.

I shall seek out the group and join it - thank you.

Wow that sounds really amazing labtest! I have been so terrified it's not occurred to me that he can live a normal life (at least in part).

We've had another good day really. It occurred to me I have never really talked with him enough and we've had some super chats. He's ever so funny. I knew that before but I took it for granted. And his brother has just been fab. I'm so damn proud of them both.

I've never been closer to both my DS' too Twunk. It does bring you closer together. I'm glad Alex has had another good day.

Can I just shout out that my DS has not been sick for two days running!!!!!!! The chemo he is on should not make him sick but this cycle has been hard. I'm too frightened really to talk to anyone at the hospital as there is not much they can do for my DS. We have completed the standard treatment and are now in unknown territory. I have enough anti emetics at home to give him but we are trying to find a balance of enough medication to stop him being sick without it being intrusive (after 20 months if medication my DS wants to try not taking too much meds as this treatment is meant to be about quality of life. ). Argh it's all so hard.

How lovely to hear about your little chats with Alex, both your boys sounds adorable Twunk. Since he was in hospital, DS has got in the habit of been staying up late most night. I really must try to get him to bed at a more reasonable time but he is so cute in the evenings, I just love spending time with him. Although it breaks my heart a little as his favourite game at the moment is doctors, which involves him changing his stuffed rabbits 'wiggly' and yesterday instead of building a boat with the sofa cushions, he made a CT scanner for his animals!

You really are doing so well. I would never have believed it was possible to live with this level of fear and uncertainty and still enjoy life, but somehow of do. You will have good days and bad days, but please believe you will be happy again.

Minmooch - wonderful news that your DS has not been sick for two days. I know this chemo is not supposed to make him sick but everything I read suggests that everyone reacts differently. I will keep everything crossed that the no sickness continues anyway and that you both have a couple of days to relax just a little. You sound incredibly close to your boys Minmooch, you must be very proud.

labtest - lovely to hear your DD is doing well

Hope all is okay with you Carebear

Hello to everyone else x

minmooch that is indeed excellent news re your DS. I'm glad both of you have relief from all that sickness. I hope he stays comfortable.

I'm developing a sense of humor about it all. Which is how I cope with just about everything.

Sorry I did read your message properly earlier (thought the MRI scanner very touching) but it's just been such an exhausting day. After the doctor had spoken to us, then to Alex, I could no longer hold it in and just ran outside to the rooftop playground and screamed and yelled and sobbed. Then phoned my parents and did the same. I think I needed that.

Ffs this child will not sleep!

Gah CT scanner!

Hi everyone...my I have missed quite a lot...quite a few newcomers too. so sorry you have to join us. :(

we have been busy...dd completed her second round of chemo for her secondary AML on 13 July. It was cytarabine and adriamycin and etoposide and valproic acid...Her MRD from the first round of clofarabine was 1.7 %. ok but not what they are aiming for. she developed a fever at the beginning of the chemo but it resolved by itself. We were at home for quite a while and beginning to feel pleased and relieved at not having any infections then her counts started dropping and she started to need some transfusions. last wednesday she had a haemoglobin transfusion then that night she suddenly started having a fever. so we had to rush to hospital at around 2am and get admitted. Turns out she has streptococcus in her blood, it was really nasty, her fever kept spiking to 40+ for several days and she kept having nausea and vomiting. She refused to eat for a week, developed ulcers, and was really anti-social and didn't want to play. It was really scary. She had never had a temp so high before. She kept having chills at night. It then slowly went down to 38-39 for several days and is only beginning to look like its settling today although she still gets fevers, but at around 38. But they put her on some really strong antibiotics and antifungals so she has been having really bad diarrhoea because of that I think. They took her stool samples but apparently nothing grew.

The transplant thing is coming along, we had a potential matching donor but then it turned out he is unavailable. Not sure why. They replaced him with another potential matching donor, but he is in his 50s so I am wondering if that is advisable?? They have also found another potential match in the US who is 29...hopefully everything will work out for us! The doctors initially said it would be quite unlikely to find a matching donor, so the fact that they have found three potential matches is a miracle in itself! In the meantime I am continuing to take it one day at a time....

hugs to everyone....

Twunk, sorry you have to join us. I just had to agree with everything labtest and chocolateorange have said. My DD had ALL 3 years ago and did the 2 yr chemo and everything, and after a while, it became routine and she went into remission pretty quickly, and once it is all over you can sort of live normal lives. DD only missed a year of school and after that she breezed through school and was n the top class last term. We tried to go on short breaks to the beach when we could in between chemo and so on. As the doctors kept telling us, ALL is the "best" type of leukaemia and very treatable for most patients, and we should try to live our lives as normally as possible. Once it was all over we went on a big holiday to celebrate! Hopefully you will get there soon too!

Best wishes for all suffering from cancer since childhood. All is doing well do not worry about anything and hope for the best.

Thanks marrythomas

Hi hazlinh - so sorry to hear your daughter has been so unwell. It must have been very scary. I hope she is more comfortable now? Very encouraging about the potential donors though.

How is your DS now minmooch?

I have been really struggling the last couple of days. I think it is a combination of DS's impending surgery and because I stupidly started googling again. I really must stop it, it always makes me feel worse whatever I read. I'm getting fixated on the fact that his tumour is stage 4 (he has nodules on his lungs) even though the on consultant has assured me this is not uncommon with Wilms and that his prognosis is still very good. I'm frightened she is just saying this to make us feel better.

I keep looking at my darling DS and wondering how the hell I could ever live with out him. That sounds terrible as if I am giving up on him and I am really not... I'm just so scared.

Hello to Twunk, carebear and everyone else - hope you are all bearing up x

Just a quickie, but nocake I know a little girl who had stage 4 wilms that had spread to her lungs and she is just fine

Wishing you all lots of strength and best wishes