Children with cancer thread

[Jemimapuddleduk]

Hi - I can't find one running st the moment, the last one was last posted on in 2013. It would be great if anyone is in the same boat.
We found out last week that our gorgeous 16 month old has bone marrow failure. Initially they thought is was myelodysplasia but have now found leukaemia cells so have indicated aml. We are in on Tuesday to fit his Hickman line and do another bone marrow test. Chemo is likely to start imminently. We are all in shock and constantly up and down. It's easier during the day with the distraction of the children but nights are long. I am so worried for my baby and I don't want him to be in pain. I am so scared too.

[hackneyzoo]

Jemima I am sorry to hear you are going through this. My DS, who is now 7, was diagnosed with a tumour at 10 months and it was terrifying. The appointments and doctors meeting and the thoughts spinning round in my head were totally overwhelming for a while. However things did settle down and we got used to the 'new normal' of being in and out of hospital and coping with DS's condition.
We were lucky in that his tumour was benign, however it caused health problems and have just found out a secondary tumour has grown around his spine and aorta and he will have to have major surgery in the next few weeks.
The best advice someone gave me on here was to take it all one day at a time. Try to access the support available to you at the hospital and take up offers of help from friends and family once you work out what your DS's treatment will involve. I am sure someone with direct experience of Leukaemia will come along soon with more relevant info to AML.
Sending you virtual hugs and hand holding, its a very scary time but you will get through it. xxxx

[Jemimapuddleduk]

Hi Hackney- thank yo so much for replying to me. I am very sorry to hear about your ds and also that he will need surgery in the next few weeks. I hope it all go's well and sending you all my best wishes.
I am lucky to have some great friends locally and further away and family on both sides who have been providing lots of support. We visited the ward on Friday and met our Macmillan nurse who seemed great, it was just a lot to take in during one visit. We also have a dd who is 2- 3 in March and I want to try and keep things as normal as possible for her. It's hard to think how the logistics are going to work but there is a Ronald McDonald house that hopefully we can get a family room in so we can all stay close. Every so often I forget that this is happening and then the shock of remembering again. I am not very good st articulating it but it feels as though my heart is exploding at times.
Anyway thank you again and all the best for your ds's surgery x

[hackneyzoo]

I think it takes a long time to sink in, and even then it seems very surreal. I feel ok in the day but once the DC are in bed it is harder to stop my mind exploding with 1000 different scenarios. Just take it one step at a time and try to pull yourself back from panic. Easier said than done.
My DD was the same age as yours when DS was first ill and she coped fine. I think young children are amazingly resilient and we made sure she didn't feel left out. It is exhausting though. I'm in the NE and we are lucky as we are very close to our hospital where treatment happens, but if you are up this way and I can be of any help, even if you just fancy a coffee and a chat, please feel free to PM me.
I hope the hickman line op goes smoothly and things start to settle a bit for you and your ds. Sending you lots of positive thoughts for a hard week ahead. x

[Jemimapuddleduk]

Thank you so much. We are in the North West and ds will be on ward 84 at Manchester Childrens'. The team seem lovely there. Ds has only just fallen asleep, it's been a long evening but at least distracted! X

[hackneyzoo]

Hope the week has gone smoothly for you and your DS is coping well. x

[Jemimapuddleduk]

Thank you. He has just had his first of 20 chemo drips for this first round of chemo. He is doing ok but seems to be in quite a bit of pain and has had high temperatures and an infection!
How is your ds doing? Do you have a date for surgery?

[hackneyzoo]

Poor little chap, hope the docs get it all under control and get him comfortable. Its horrible to see you DC in discomfort, sending lots of love to you both. How are you doing?
No date for surgery yet, just a ton of appointments and general mounting anxiety on my part! DS absolutely fine and plodding on as usual. Think it will probably happen over half term, which is good in some ways as I work in a school so will be off, but I have 2 other DC so its logistically challenging, am sure we will work it out.

[Jemimapuddleduk]

Oh that does sound hard logistically. How long will he be in for?
I am doing ok I think. My dh and I have been alternating days and in a way it's easier when I am in the hospital with ds as at home there is more time to think and dwell. We will be in at least a month for this first round then with a week break at home if we are lucky. This is unlikely from speaking to other parents as it's rare for aml patients not to continue with temperatures and or infections. I spoke to a parent with a 20 month old with aml who has been in since December 2014!
I hope the next few weeks go ok for you. The waiting is awful isn't it? That awful constant churning stomach feeling, inability to concentrate on anything and feeling powerless. Best wishes to you and your ds x

[KinkyDorito]

Remember to take care of yourself too at this time. Take all help offered and be kind and gentle to yourself.

Practical things: talk, as much as you can to people who will listen, express your fears. This is okay. I didn't and I don't think it has done me any favours. Keep this thread going if you can: it was a haven for me five years ago. Water and hand cream - hospital dries you out. Try and get outside for a breath of air on your in-days. I know this can be hard when waiting for specialists/drs etc to turn up, but it will be good for your mental health.

Yes to continual infections. My DD had ALL, and we were in a lot. The little girl with AML had been in for several months without a break. However, every child is different. She responded very well to treatment and made a brilliant recovery, even though they had a tough time going through it.

Sending you all much love .

[Jemimapuddleduk]

Thank you so much Kinky and sorry you went through this too. Some great tips there. I have had done lovely handcream given to me- it's remembering to use it! We had a lovely weekend after a hard week. My ds is much better now he is on regular doses of oramorph for the pain and on s higher dose of anti sickness. His appetite is back, he is sleeping better and playing during the day. We are over half way through the first 10 days of chemo and then he will have 3 weeks recovery. If we are lucky we may then have a week at home before round 2 (not holding my breath!).

[KinkyDorito]

DD actually became very well on first bout of intensive chemo - I think she'd been so poorly before (3 months and a huge faff to get her diagnosed). She didn't get an infection then, even though we were told it is almost certain.

I'm pleased he's doing okay - he so titchy . DD was 12 and on the children's ward initially, until she turned 13 and was allowed onto the teenage unit. We were in with so many little ones at first. At least I could explain things to DD and she understood. It was hard to see and I'm sure hard to manage in hospital.

If you are happy to share, where are you? We were LGI in Leeds.

[Jemimapuddleduk]

Hello- we are at Manchester Childrens hospital, it's been amazing so far. I am from near Leeds originally! The children's ward is for all ages at Manchester but there is separate teenager bay and lounge. I really feel for the older ones, as if it isn't hard enough being a teenager anyway.
Similar to with your dd my ds seemed better at the weekend than he has been in months (constant infections, writhing in pain, given up trying to toddle and very slow in starting to babble). The last few days he has been crawling round, taking some steps and shouting! It's lovely and I am holding onto these good days (and taking millions of pictures) as I know there will be lots of tough days too. There seem to be quite a few AML patients in the ward which surprised me as I thought it was relatively rare.

[Filmstar01]

In the grand scheme of things, it's rare but you are seeing it in a concentrated way now on the ward you are on. I'm a HCP in a specialist area and have to keep reminding myself that not everyone in life sees what I see - it's just what I'm exposed to!

This is such a frightening time for you and I'm so sorry you are having to cope with it. I think you will get some fantastic advice and support from other mums here so I hope you can keep the thread going.

Take whatever help is coming! Consider keeping a diary to help you remember what's going on day to day as it will also help you to reflect and structure questions and help you need from the hospital staff. Take a look at CLIC Sargent charity too to see if they can help you at all.

My heart goes out to you all who've experienced this. Wishing you all the very best.

[Trazzletoes]

Hi, is anyone still here?

We've had bad news. Joseph has relapsed (neuroblastoma) and starts chemo on the Beacon trial tomorrow.

[Jemimapuddleduk]

Trazzle I am still here and available to chat on this thread or your other one. I am glad you are one cycle down and the chemo hasn't affected Joseph too much. How old is Joseph? My ds is only 21 months.
We are home after being in hospital with ds since late January for 4 cycles of high intensity chemo for AML. Ds is doing well but still neutropenic and we are waiting on a bone marrow biopsy in around 6 weeks to confirm that the leukaemia has gone. We met quite a few families of children with neuroblastoma during our stay at RMCH. Has Joseph had radiotherapy or immunotherapy or just chemo so far? It sounds such a complex type of cancer each child was on a slightly different treatment plan or trial. I do know a little girl the same age as my ds who was initially treated at 4 months then relapsed at 13 months and is doing ok so far after radiotherapy.
Sending lots of strength and understanding. It's such a horrific path to be on with a child. Xx

[s88]

Please can someone tell me how you cope with having being told your baby has Neuroblastoma. We have a 25 month old ds and we're told last night. Were distraught

[Trazzletoes]

Hi ss8. My son was first diagnosed with neuroblastoma (stage 4 high risk) just after his 3rd birthday. I'm so sorry you're going through this.

How do you cope? A day at a time. An hour... A minute... A second when it gets really bad. But you do cope. You will cope xxx where are you based? My son is treated in Leeds just in case you are... We are all here though to support you xxx

[fernzmal]

Hi everyone, I have not been on for quite some time, I used the name Shits, but forgot my login! I was looking for the thread that was around last year, but could not find it, then found this.

How is everyone doing? Would love to hear some updates from you all.

Jemima, am so sorry you are going through this. My DD, 12, has ALL at age 5, and then AML at age 9. We have been through hell and back but she has been back at school for a year and a half and is doing so well now. I have a 20 month old boy and I just can't imagine being told that your little baby has cancer. It just seems so unfair, they're so little.

Trazzletoes, oh no I am so sorry to hear about Joseph. Hope the trial gives him the best outcome. DD was on a clinical trial too for her AML, as it is so rare to have ALL, and then get AML.

S88, am so sorry to hear that :( I don't know really, I just took one day at a time. I still do, after 7 years :( I found that what helped me, especially with the millions of texts and messages I received from friends and family, was to write a blog which really helped me. It was cathartic, for one, and secondly, it helped me keep track of everything that happened during the treatment, the drugs taken, how DD felt, how her body reacted, and finally, it allowed me to share her progress in one place for everyone to follow so I didn't drown under all the messages and be forced to repeat every gut-wrenching detail when I was still feeling sick to my stomach or in denial...

[verystressedmum]

Massive hugs to everyone on this thread no one wants to be on!
My dd has Hodgkin's lymphoma and had her second round of chemo. So far she's doing well but we obviously don't know if it's working. But one day/hour/minute at a time.

[fernzmal]

How is everybody doing? Not sure if there is another active thread...

[Sunshinesaz86]

I haven't found another thread. My son was diagnosed with ALL leukaemia in October 2016 he's just finishing his last stage of intense chemo before he starts long term maintenance next month. We've had numerous hospital stays so far so really hoping things settle down a little soon.

Sorry to everyone else who is on this threat.
fernz how is your dd doing? X

[fernzmal]

Hi Sunshine. Yay to your son finishing last stage of intense chemo! That seems pretty fast!

My DD is just settling into the year and new school (still!). She is a bit sad as she hasn't got many friends in her new school, just one so far. Although she is now 3 years post-transplant, she often misses school, either due to doctor's check-ups or because she is tired or down with some illness. She still has 3-monthly blood tests to make sure she doesn't relapse. She sees an endocrinologist for her late onset side effects of osteoporosis, ovarian failure and growth problems. She suffers from fatigue and leg aches a lot. She was warded recently for a week, for Rotavirus and then while she was in the ward, she developed Mycoplasma Pneumoniae. Her new classmates have been attacking her for skiving school all the time. They don't really know her medical history unlike her friends at her old school. I had to meet the teacher and complain about the kids bullying her, and he said he knew about it and told them off. I said please tell them off again! But apart from that, she's doing ok, I guess!

[fernzmal]

One setback we had earlier this year was that, after seeing two endocrinologists and undergoing various tests to check for growth hormone deficiency, and finally confirming that DD is indeed growth hormone deficient (she has not really been growing, and is 13 but the height of a 9yo), the doctors then tell me they will not give her growth hormones as she is at too high a risk of developing malignancies and some scientists think that growth hormones can cause malignancies. So she will not be receiving GH. I was absolutely gutted. And not only that, they want to start her on estrogen, to kickstart her periods and boost her bone strength. BUT estrogen will also cause her bones to fuse and she will definitely STOP growing. I am going to try and delay her taking estrogen for as long as I can as I really want her to grow as much as possible before she starts taking it

[fernzmal]

Can I just add that the tests for growth hormone were really traumatic as involved taking blood and NOT from her chemoport, and her veins have collapsed from all the chemo over the years

[Sunshinesaz86]

Hi fernz it sounds as though your daughter has really gone through the mill with treatment and after effects. And it's a shame she's having problems at school hopefully things settle down for her. Kids can be very cruel.
My sons consolidation phase was only short due to his counts not recovering hence us getting to maintenance fairly quickly. He's not walking yet as he'd only just started before diagnosis so it's set him back, but hoping he'll get back on his feet in the next couple of months fingers crossed. X