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Original poster

Children with Cancer

833 replies

Twunk · 03/09/2013 18:04

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.

OP posts:
Nocakeformeplease · 25/11/2013 14:23

Trazzles I'm so glad that you're home and the awful injections are finished. I really hope Joe feels better soon.

twunk glad you're home, hope Alex is doing well

Unbuckle it must be very hard to take in such mixed news. I hope the meeting with the consultant brings positive news with regard to the next step. In much bbc such a relief to be home, snd I'm so glad I is eating and feeling better

Min I'm so glad DS was well enough to celebrate his birthday with all your friends and family on Daturday. He has...well you both have been through hell these last two years and I am desperately hoping and praying for good news tomorrow.

D is neutropenic so has been off school last week and today. I didn't keep him off last time he was neutropenic but he ended up in hospital the following week - don't actually think the two things were related but I'm not taking any chances this time. We are both going stir crazy though, cooped up in the house! He's having bloods done again tomorrow so hopefully they will have picked up a bit by now.

MarnieMadden · 25/11/2013 19:50

Minmooch just wanted to say 'good luck' for your sons test results tomorrow. Hope they are the best they can be for you all. X

upto11 · 25/11/2013 21:27

Minmooch De-lurking to say I'm thinking of you and your DS, and crossing everything for good news tomorrow x

Sillybillybob · 26/11/2013 07:13

min everything is massively crossed for you and DS today x

Trazzletoes · 26/11/2013 07:14

Stupid name change fail...

Original poster
Twunk · 26/11/2013 07:32

I like the name change though, Bob Wink

Adding to the army of people with everything crossed for today Min.

I'm glad you had a nice weekend, but completely understand the comedown from it.

Hugs from me xx

OP posts:
Stinkyfeet · 26/11/2013 07:42

Thinking of you today min

minmooch · 26/11/2013 17:59

We are back from the hospital. The scan results show his tumour is stable. I think we were all shocked, the consultant included, as he has been so poorly, vomitting, losing weight and little to no energy so we were all expecting the tumour to have grown. They are going to hold off giving him any more chemo (he has 3 more cycles worth left to him) until such time as it may be needed (if the tumour grows). Consultant said again that this is not curable but the aim is to keep him stable for as long as possible. They want to try to find out why he is still being so sick so different anti emetics given and referral to gastro team to see if he has a blockage.

I feel a bit numb really. I think it's the best news we could hope for in the circumstances but it does not feel like a celebration. Re scan in three months time.

I need a glass of wine.

Original poster
Twunk · 26/11/2013 18:07

I've been checking in all afternoon to see how it went Min. That is the best news you could hope for and I'm pleased it is stable.

I really hope they can find a drug regimen that has him feeling a bit better.

Hugs again xxx

OP posts:
unbuckle · 26/11/2013 19:33

I'm sure it doesn't feel like great news, but I am so glad he's stable, and hope they can tweak his drugs to even out the side effects.

Is there an overall limit to how much chemo he can have?

Hope you are having the wine now!

Xxx

minmooch · 26/11/2013 21:25

Yes Unbuckle there is only 3 more cycles he can have. It has not been an easy 6 months on this chemo for him and I think they are reluctant to give him the last few unless things deteriorate. To be honest I'm glad they haven't given it to him. I feel that his body has had enough and mentally it's too hard for him to continually feel ill, weak and tired. I can't watch him being poisoned any more - not if it is neither going to cure him nor give him any quality of life.

Nocakeformeplease · 26/11/2013 21:53

Oh Min, it must have been an incredibly hard day. Im so glad your DS is stable but completely understand that it doesn't feel like a celebration.

I really hope that a break from the chemo gives him time to regain strength and that he is well enough to have done quality time with you over Xmas.

Much love to you all xx

Trazzletoes · 27/11/2013 06:36

Oh min I am so pleased he is stable. Long may that continue. I really hope his meds can be sorted now so that he feels as well as possible.

Sending you huge hugs as always x

Obviously I have no practical experience but I sort of know what you mean about not being able to watch him be poisoned anymore... I was saying to DH the other day that if DS has relapsed I am not sure I can put him through such harsh treatment again seeing as it won't save his life. It is so hard to see our children like this, hey? But I really hope you can have a bit of downtime and enjoy Christmas together.

Trazzletoes · 28/11/2013 20:21

Back in hospital tonight with a likely chest infection.

I'm having a little stampy tantrum on my own in the corner. Just so tired of all this.

unbuckle · 28/11/2013 21:11

Boo hiss, sorry to hear you are back in so soon trazzle. I starts his new chemo on monday. No rt though, which is positive, and apparently the relatively dismal survival rates for kids with blastemal tumours arose from when they were treated as standard risk - so the high risk protocol should give him an excellent chance of recovery.

Hope you are out soon, you must be counting the days.

minmooch · 28/11/2013 23:08

Trazzles hope you and Joe are home very soon. You're entitled to a stamps tantrum xxxx

Unbuckle good luck for I's new chemo on Monday. Positive news about rt. xxx

Keep on keeping strong xxxxxx

mmmmsleep · 29/11/2013 00:01

hello ladies. I've decided to face facts and join you for some general hand holding if that's ok. after a month of waiting post first scan results we finally found out our 2 yr old ds has rhabdomyosarcoma. he has a big tumour in his skull. all rather grim and now it's turned out not to be what they thought it was he needs yet more procedures/staging before we can get cracking with chemo.
today I've done angry, gutted, google and exhausted. ...so tired of all the waiting and now more tests. bad day :-( I'm sorry you are all having bad times too. I truly wish there was no need for this thread :-(

minmooch · 29/11/2013 07:21

mmmmsleep I am so sorry that you have had to join us but I am sure you will get much support from others going through similar. I had not heard of your DS cancer and looked it up - you must feel it is incredibly unfair when it is so rare. My 18 year old has a medullablastoma which is an aggressive brain tumour. Although it is one of the more common brain tumours it is rarely seen at the age my son's decided to activate itself.

You have a long hard road ahead of you but we will be here to hold your hand, answer questions if we can, listen to your fears, anger and hopefully sometime help you smile amongst the horror.

Waiting for a proper diagnosis and then treatment is agonising. Are you at home or in hospital?

I hope that when treatment starts it is not too harsh on your DS. Xx

Nocakeformeplease · 29/11/2013 11:36

Oh mmmmsleep, have been thinking of you, I'm so sorry. This stage is is horrific and it must be incredibly upsetting to have to wait for the results of further test before you can start chemo. I hope you get the answers as soon as possible so that treatment can begin.

As Minmooch says, we are all here for you every step of the way xx

Original poster
Twunk · 29/11/2013 18:20

Adding my support mmmmsleep.

The waiting for test results is the hardest part.

Xxxx

OP posts:
mmmmsleep · 29/11/2013 20:18

thank you for the support.
ct today showed slight extension of the lesion but no spread. bone scan, lp,bone marrow and his line all next week then chemotherapy starts Friday hopefully with results of all. He's getting more tired every day and just wants to "sleep on mummy" which is both lovely and exhausting. feeling guilty for my 9 month old too but I imagine I'll just have to get used to that :-(

Nocakeformeplease · 30/11/2013 21:22

Good news about no spread. I hope the remaining test are not too uncomfortable for him.

My DD was just over a year when D was diagnosed. I felt terribly guilty in the beginning - not just that I was away from her but that even when I was with her, my mind was always with D and I would be counting the minutes until I could get back to him. She doesn't seem to have suffered any ill effects though and actually I'm grateful she was so young as I think if she was older she would have found it a lot harder.

Xx

mmmmsleep · 30/11/2013 23:39

thanks no cake that's reassuring to know. x

Original poster
Twunk · 02/12/2013 08:54

Ah yes the guilt. DS1 is only a year older than Alex (they are 4 and 5) and are like twins. They sleep in the same bed and are very close. DS1 hates us going into hospital (we're on our way then again today) and I miss him horribly when I'm there. It's all very disruptive to family life, but you do get in a rhythm of sorts.

OP posts:
minmooch · 02/12/2013 09:05

Mmmmsleep my youngest DS was 14 when I went from being there every day to only seeing him when I came home one night a week for 5 and a half months. It was easier in one respect as he was old enough to understand but but also old enough to understand the seriousness of it all. It is difficult whatever the age if your other children but there is no choice and guilt is yet another burden we carry on this journey.

Very pleased that the ct scan showed no further spread.

As for us we are nearly a week in the new anti sickness tablets. I think there is a little improvement and his wee is definitely a better colour. Fatigue levels still very low and exH was in tears last night about the whole situation. This morning though DS actually looks pink when I took him a cup of tea. Not yellow/grey/waxy looking but pink! But oh so skinny - he got up to go to the loo and there is nothing to him :-(.

Today feels like a bonus as youngest DS has an inset day and eldest wants to go in for last lesson of the day so I have both boys at home nearly all day! Yayyyy!

Hope everyone has a gentle day xxxx