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Children with cancer

(998 Posts)
KinkyDoritoWithFairyLightsOn Thu 22-Dec-11 09:31:50

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.

minmooch Tue 07-May-13 23:42:16

Queen it is heartbreaking. And cancer does steal our children's futures. If they survive it their lives have been changed beyond recognition. Big hugs.

As for us - scan tomorrow and results next week. Please, please, please let there be good news for my DS. My anxiety levels are high and I'm feeling rather manic.

min, sorry to hear about the hay fever for both of you and your other health issues. Have the scan results come back?

Queen, that is very tough. On the hepatoblastoma FB page some parents are talking about similar long term effects so we just don't know. It is horrible to think about some of these things taking years to come out.

For us, the news is good so far. Ultrasounds and chest x-ray are clear. Her blood tests are up and down; she's still anaemic but hasn't quite needed a transfusion. Magnesium is good enough, just, so no more medicine! Her eosinophils are up so doc wants a parasite test of her poo <boak>. Her appetite is improving but her sleep is still awful -- she's really unsettled in the evening and the night, so I'm shattered. But of course I feel really guilty for complaining about it because of course I'm so, so happy that she's here... I'm also stressed about measles because many of my friends don't vaccinate. Grrrr.

Big hug to everyone.

Trazzletoes Mon 13-May-13 22:21:11

Sorry to have been away, totally lost the thread for a while...

P4B so glad that everything is going well for you.

Kinky also so so happy that you are now at the end of treatment, and min too. My fingers are tightly crossed for outstanding results for all your lovely DCs.

Queen that's so horrible. To have treatment is no choice at all, but it's a special kind of torture knowing what you are "choosing" for your DCs.

We're back in hospital on Thursday and Friday for a re-scan to see whether the relapse has spread (very much expected) or by some miracle has gone away (happens very rarely). We are trying not to think about it and at the same time desperately hoping and praying for a miracle. If its gone away again, Joe is straight in to radiotherapy on Monday said none of this had ever happened. Suffice to say we are all over the place.

minmooch Tue 14-May-13 07:42:34

Morning all.

We have scan results this morning - I feel sick, tired as I couldn't sleep and very, very frightened. I fully expect them to say tumour is still there sad and then what? No more surgery for DS possible, no more high dose chemo as he went into renal failure before and kidneys not recovered enough, no more radiotherapy.

Am feeling so very frightened as our options now are limited to trial drugs only. Please let there be some good news - 18 months of treatment, Drs didn't think we would get him through it so that in itself is a miracle, but I want it to have worked, to have killed the tumour, for my son to have a chance of living.

Sorry for the me, me, me post but I can barely think straight.

Love to all

Trazzletoes Tue 14-May-13 07:50:58

Oh min I'm holding your hand very tightly and hoping and praying for the best news possible. I'm always "me, me, me" so don't worry about that!!! xxx

Fivemoreminutesmummy Tue 14-May-13 08:59:27

Min, de-lurking to wish you luck for today. I'll be crossing everything hoping you get the result you want. Your honesty, courage and devotion to your boy are humbling.

minmooch Tue 14-May-13 17:49:26

Well it wasn't good news sad. The tumour has shrunk again but it lights up under the MRI which means it is still active.

They cannot and would not do any more surgery - the damage would be too extensive or kill him outright.

There are only two options:

1. Stop treatment and hope the chemo still in his body kills off the rest of the tumour. Re-scan in 3 or 4 months. If it is still there or has grown they will not be able to do anything, he cannot re-start treatment.

2. Find a different maintenance chemo as he cannot stay on the one he has been on as it is too damaging for his kidneys and bone marrow. Try and give him 6 months of treatment if his body can take it. Hope that that is enough to kill the remaining tumour. If it has not there is nothing else they can do.

It is my son's choice whether he feels he can face further treatment.

I am heartbroken, again for him, for his brother, for me, for his Dad.

I fucking hate fucking cancer and the devastation it causes.

Trazzletoes Tue 14-May-13 17:58:45

Oh God min I don't know what to say. You've been so incredibly supportive to me and so many other people. I wish I had the right words to being you some comfort.

That is so unutterably shit. I'm so sorry.

Fivemoreminutesmummy Tue 14-May-13 19:37:08

I'm so so sorry to hear that. I really don't know what to say, you'll be in my thoughts, hugs to you and your DS

Isitjustmethen Tue 14-May-13 20:00:14

I hope you don't mind me intruding on this thread. I just wanted to say to Minmooch how desperately sorry I am that it wasn't better news. It is just so so unfair after all your poor DS has been through.

I can't even imagine the hell you must be going through at the moment, I wish I had some words of comfort. I am thinking of you and your precious DS and praying with all my heart for the strength to get through the next few months, and for a positive outcome whatever option you and DS decide on.

Much love to you all xxxx

pinkhousesarebest Tue 14-May-13 21:06:27

Oh Min I have been thinking about you all day and am so sorry to hear this. Your lovely boy deserves so much more, and so do you.

minmooch Tue 14-May-13 22:02:25

Thank you for your words of support - they are much needed and appreciated. My son's chances are so very slim now. I feel tired and broken. sad

Trazzletoes Tue 14-May-13 22:11:18

Sending you a massive hug. I know it's not enough.

minmooch Wed 15-May-13 08:50:53

I don't know how to keep strong for my son. How do we keep going? Do we carry on as normal or are we preparing for very little time? My son is 17 - there is no pretending.

I am totally broken.

Isitjustmethen Wed 15-May-13 15:25:04

Oh darling sad. I wish I could take away your pain, even for a bit. No wonder you feel broken. What you have/are being asked to endure is simply unbearable. Do you have anyone with you to support you at the moment? How is DS coping?

I'm just so sorry, everything I want to say us just woefully inadequate.

Fivemoreminutesmummy Wed 15-May-13 19:46:47

I'm so sorry for everything you're going through. You will get through this one way or another. You sound so open and loving, your son is lucky to have you on his side. I'm really sorry if this all sounds crap, we'll be here online for any support you need. You will be close in my thoughts and prayers x

DianaTrent Thu 16-May-13 10:14:45

Oh min, I am so sorry you didn't get the news you deserve so much. Massive hugs. This is so very unfair. Bastard fucking disease thanks.

minmooch Sat 18-May-13 09:12:24

So it's official - they are no longer treating my son as curative sad. It's not palliative care yet but somewhere in between.

Fuck sad

pinkhousesarebest Sat 18-May-13 09:24:11

Oh Min that is unbearable. Do you have anyone to lean on? I wish there was something I could say or do to help you.

Trazzletoes Sat 18-May-13 10:40:41

min I really hope there is someone around for you to lean on. You really need to make sure that you are taken care of at this time as well.

Is there anything that we can do? Anything at all? Whether its sending stuff, a shoulder to cry on or any practical help?

How is your DS taking it all? It must be such a difficult time for you all. Sending you huge hugs.

TabithaMcKitten Sat 18-May-13 13:57:27

I'm so so sorry, Min. This is incredibly unfair and I'm angry for you. I have no words that will make this better, but I am thinking of you and your lovely boy xx

minmooch Sat 18-May-13 15:07:12

I'm on my own - 2nd husband could not cope with DS illness so I am a single parent. His dad is good but I do the lions share if his care so I do most of it on my own. I have good friends but I am normally too tired to see them. It's a very lonely road and I am very scared.

minmooch Sat 18-May-13 15:24:44

My son is coping amazingly and is doing a charity day sailing today raising funds for The Brain Tumour Trust - he has raised nearly £700! I am not sure if he is in denial or trying to protect us all. He is going on holiday next week with his Dad, dads partner and brother so he is looking forward to that.

min, I'm so, so sorry. I wish I could say or do something to make a difference. All I can say is that I'm praying for your precious boy every day.

X-post. Good on him for the charity sailing -- what a trooper! I hope that he has a great holiday and that you can get a little breather too.

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