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.

[Nocakeformeplease]

Oh Min - poor DS and poor you. I really hope things settle down soon, it must be very scary. I can only imagine how drained you must be with everything, I just wish there was something I could do

whatsgreatname - that is really kind. I'll PM you shortly if this okay.

Hi Twunk, Unbuckle, Carebear and everyone else x

[carebear13]

minmooch- i'm so sorry things are not going too good (an understatement i know but i do not have the words). try and stay strong, you ds is going to need you rested but it's easier said than done i know.

i am feeling a little bit more positive and i dont hate everyone really. we are waiting for imogens neutrophil count to come up but in the meantime we have been given the all clear for school so she is going back tomorrow along with everyone else. i think its going to be a difficult day seeing her in her uniform with no hair. this time last year we had a normal life!!
Car still isnt bloomin fixed and we are still stuck with poxy corsa.
Finally plucked up the courage to ask the diana service to do a referral for counselling and when i spoke to my gp she agreed it was a good idea and she has also changed my medication to one that helps more with anger and anxiety.

nocake- wont be long now, it must be so frustrtating that its been delayed and perfectly normal i think, that you would be feeling there was a different reason for it to be delayed.

[unbuckle]

Minmooch - hope you can get some rest despite the hourly obs, and that your ds gets some respite from the constant procedures. It must be so very draining.

It is amazing how much you have a new reality after diagnosis i think. I can barely remember isaac's birthday, a week before he went into hospital, it is like it never happened.

Thanks what for your offer, and so glad to hear your dd came through it all.

[Twunk]

Minmooch what a shitty time. I have everything crossed that the infection is defeated and you can go home soon.

Big hugs all round in fact.

Tomorrow we have Alex's first MRD though we won't know the response until week 12 of his treatment (just gone into 5th week). I have to get up and to the day ward for 9am but hoping we'll be back at home tomorrow evening.

[unbuckle]

Twunk, how are you doing? Are you home yet?

[Twunk]

Yes we got home that afternoon! Alex slept for an hour after coming back from theatre but then had the hump - screamed the bloody place down! Other than that it was uneventful.

How are things with you?

Spoke to DS1's teacher - actually she is Alex's too this year (they often put years 1 and 2 together and this is a small school). She and the other job-share teacher are coming over tomorrow to see how we are before term starts on Monday. Understandably they are shocked but were very kind.

We're also going out car shopping tomorrow. Want a second one as DH will have to do a lot of school runs and also visiting us at the hospital. His boss is lending us the money.

Minmooch, Nocake, Carebear and hazlinh, hope things are okay with you xx

[Nocakeformeplease]

I hope everything is okay now Minmooch and you and DS are safely back home.

DS's teacher is supposed to be coming round too next week Twunk but I think we'll still be in hospital then. I'm so sad that he is going to miss his first day at school. I know it doesn't really matter in the scheme of things but I feel so sad for him.

We're all tucked up at the hospital now watching Spiderman. I'm trying very hard not to think too much about what is going to happen tomorrow. Strangely I actually feel a little but better now we're here and getting on with it - I've been pretty awful the last couple of days. Also keeping DS happy and entertained doesn't leave much time to think which is probably a blessing!

We haven't told DS what is happening yet - we're going to leave it until the morning so he has less time to worry about it. I know a lot of children would feel better if they knew whaf is going on but he is the opposite. He would fret and get very upset and be up all night worrying about it.

Hope everything is okay with everyone else x

[Twunk]

Nocake I'm the same with Alex - I don't keep discussing everything beforehand. Actually as he's had 4 anaesthetics so far I now just say (on the day) that we have to go to the "sleep doctor" as really all he knows is he's going to sleep. I agree with you totally that it's easier once you're in hospital in the run up to something like this.

I will be thinking of you tomorrow. My tip is to do something mindless like solitaire, but you may have your own ways of at least trying to switch off.

We'll be in hospital too - he may or may not have the start of his next treatment - depending on his blood results.

Tomorrow is also Alex's first day at school. A letter is going home letting the other parents know. Very kindly they have included a request for "play dates" for DS1, especially on Wednesday afternoons as there's a half day then.

I hope you manage to sleep okay nocake - much love and best wishes for tomorrow. Un-mnetty hugs ((())).

[minmooch]

Thinking of you tomorrow Nocake hope all goes smoothly.

We are home now, infection source never found. Terrible problems with cannulas and veins collapsing. DS had MRI scan on Saturday so now the anxious wait. I'm very tired and emotional so off to sleep.

Waves at everyone!

[unbuckle]

Will be thinking of you tomorrow nocake and twunk. The school thing must be really hard. I have one starting next week too.

Hope you get some rest minmooch.

xxx

[Twunk]

Minmooch I hope you got some rest. Same to you Nocake - I will be thinking of you. I hope today is over quickly and your wee lad is back with you soon

How are you doing unbuckle?

Well treatment is going ahead - his blood counts were fine so we're onto protocol 1B. 6 hour drip today they will start at 11am.

[unbuckle]

We are ok, i is really well actually. Ct scan this week to plan surgery, under ga as he is a baby. It is dawning on me though that this is the easy bit, and that post op he might well be on much stronger chemo or radiotherapy, as he has tumours on both sides.

[Twunk]

I don't know much about Wilms - got a boring day in hospital so I will do some reading. Big love to you both xx

We're getting quite good at Alex have a GA. I don't sob anymore, but I do get very nervous. Distraction helps.

[Twunk]

We're going to need a new thread soon. Sadly.

[unbuckle]

Yes, we are. Hope today went as well as possible, twunk and nocake.

[Nocakeformeplease]

Hi there. It's been a long difficult day, feeling very drained now. DS went down for surgery about 10 and we got a call at about 3.15 to say he was back in PICU. The surgeons said the surgery went well. They removed the tumour and also two little spots that had broken away from the main tumour when it shrunk. However there was a small olive sized piece they were unable to remove safely as it was too need the major blood vessels. The surgeon said it look liked dead tissue left over from the chemo and even if there were any remaining cancer cells he is confident the post surgery chemo would kill them off.

If I take what he said at face value it's good news (and he said to me no tears, we're very pleased how it went) but I have really struggled today and feel very tearful. I think I just got my hopes up that they would get it all out after chstting to the surgeon before the op. i know i need to pull myself together, it could of been much worse. He seems to be recovering well after the op and seems quite comfortable.

I hope Alex got on okay today Twunk. Much love to minmooch, unbuckle and everyone else.

[Nocakeformeplease]

Sorry Twunk just seen your update on the other thread. It must have been a very long day. I hope you get a good nights sleep tonight x

[unbuckle]

Nocake, what an incredibly hard and stressful day. hospitals are so hard to cope with and with having him under for so long, no wonder it was tough. How big were the tumour pieces they could remove? Does it feel at all good to know this part is out? I think you do have to take what the surgeons say at face value, you can drive yourself mad second-guessing.

[Twunk]

I can completely sympathise with your wish for it all to be gone Nocake - but surgeons/doctors rarely give reassurance if they're not pretty damn confident.

It sounds like it went really well. You're doing brilliantly too.

Well done Nocake and littleNocake xxx

[Twunk]

New thread, can't link on my phone

www.mumsnet.com/Talk/childrens_health/1842907-Children-with-Cancer

[Twunk]

Nocake for how long will DS have chemo and radiotherapy? I've read up a bit on Wilms but couldn't see anything about that part of the treatment

[Twunk]

Sorry just chemo!

I hope he's doing well today. And I hope you got some rest xx