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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.

Jokat Fri 22-Mar-13 18:26:29

Oops that was my one year old.
I am a long term lurker and often think of all of you and wish you strength to carry you and your dc through the horrors of dealing with this evil disease. I am in awe you and your wonderful children. X

Praying4Beatrice Fri 22-Mar-13 21:13:58

kinky is your washing machine sorted now? That's hard enough to cope with at the best of times...

I'm happy to say that Beatrice is on the mend. Her fever has abated and neutrophils have pinged up nicely after GCSF. The hospital lost a blood test yesterday, though, so by the time they repeated it her potassium and magnesium were dangerously low... DH was checking the results from home (he works for the same trust) and was ringing me in a panic to tell them to get it sorted.

We should be home on Monday, all being well. Meanwhile my poor big ones are really missing us (and me them). My eldest was doing some washing (yes, I'm amazed too) and was apparently taking Beatrice's clothes to everyone for a kiss. Awww.

Trazzletoes Mon 25-Mar-13 16:35:22

I've just seen this thread

Are any of you parents of children with leukaemia able to put this lady's mind at ease?


TabithaMcKitten Mon 25-Mar-13 17:03:40

I just posted on that!

TabithaMcKitten Mon 25-Mar-13 17:04:12

Well done little Bea!

minmooch Mon 01-Apr-13 16:52:45

So we are off to hospital tomorrow morning for my DS to have his PEG removed. He's pleased as punch as it is such a visual sign of his illness. I feel slightly anxious as it is a comfort to know that there is a method of feeding him if his weight drops. I know they would not remove it unless they were happy. If course his platelets have taken a dive for the first time in a year so he may require a transfusion before the op.

In yesterday's Daily Mail You Magazine there were articles on brave children - my DS was featured!

Love to all - hope everyone is holding up ok.

Trazzletoes Mon 01-Apr-13 16:58:25

Oh min that IS exciting news! On both counts.

Nothing new here. Still sat in the same airless room...

Praying4Beatrice Thu 04-Apr-13 19:28:59

min, hope it went well. Fab for your boy to get some recognition.

Trazzles, much much sympathy. I was only in for 8 days the other week and that was bad enough.

We've got last chemo today. Just heard Beazy's AFP (tumour marker) is 4 -- was 48000 on diagnosis. Die cancer.

GreatExpectation Thu 04-Apr-13 22:19:41

Hi all, I've been lurking for a while. My 4 month old son is in the midst of treatment for high risk neuroblastoma. So far the treatment is working. We start high dose chemo on Monday.... Hold my hand?

Trazzletoes Thu 04-Apr-13 22:52:35

Great I'll let someone else hold your hands. I'm giving you a massive bear hug.

P4B great news!

At our end, the Drs have started to mention the "h" word (home!) though several hurdles still to overcome first.

Praying4Beatrice Thu 04-Apr-13 23:17:27

GE hand holding here. Hope you've got some good RL support. My 18 month old is just coming to the end of treatment for hepatoblastoma. Happy to give any help I can from the baby with cancer (albeit older) POV.

KinkyDorito Sat 06-Apr-13 17:03:22

GE holding hand here too thanks

minmooch Sat 06-Apr-13 18:08:18

GtExp - hand holding from me too. We are coming to the end of 18 months of surgery, intensive chemo, radio and maintenance chemo for my 17 year old DS and his medullablastoma (brain tumour). It's a terrible journey for our children and for us as parents. To have to watch our children suffer is devastating and to be able to do so little for them is horrific. I hope you have good real life support but we will help you 'virtually' when you need us.

As for us DS is really good after his op. no pain, no sickness and eating well. Endocrine test next week followed by last maintenance chemo. Then scan to see where we are at. It still feels never ending as we don't know what will happen next. Anti depressants seem to be keeping my anxiety levels on an even keel - just never ending exhaustion.

Love and strength to all. Xxxx

GreatExpectation Sun 07-Apr-13 12:12:38

Thanks everyone. Just packing now for hospital. Here we go....

minmooch Sun 07-Apr-13 20:02:21

Best of luck for tomorrow GtExp I hope it goes as smoothly as possible for your son. I shall be thinking of you and your little one xx

Praying4Beatrice Sun 07-Apr-13 22:45:05

GE - hope it all goes according to plan. Big hugs from here.

GreatExpectation Mon 08-Apr-13 20:46:59

Dose one complete. Here we go. It's horrible waiting for it to kick in.... He's so well at the moment, I'm dreading watching the decline.

P4B- I think I read you were at GOSH- we're on Elephant ward. How's Beatrice now? Did she have High Dose chemo?

Trazzletoes Mon 08-Apr-13 21:15:48

Enjoy these days while he is so well. Get his smile and laugh fixed in your head so that when he is very poorly, you can fix your mind on the day when you see that smile again.

You will see it again. He will cope with this.

(((Huge hugs)))

DianaTrent Mon 08-Apr-13 21:31:38

Sneaking in to send good wishes to you all. I hope the high dose goes as well as can be expected, Great.

Fingers crossed for tumour markers of a big fat zero from now on, P4B.

I hope your DS is proud of himself, min. Nice for him to get some recognition, I hope it gives his self esteem a big boost.

DD is doing well, 18 months out of treatment, and DH's last MRI was NED, so we're doing grand.

Much love and success to all of you and your wonderful DC still in the trenches.

Praying4Beatrice Mon 08-Apr-13 22:17:45

Thanks, all. min, great news about your son. Hope you can find some respite.

GE, yes! We were all over the place actually (Robin, Fox, Lion and finally Elephant) -- Elephant was actually the nicest.

Beatrice didn't have high dose chemo. Not in the protocol for hepatoblastoma. 4 x cisplatin, resection of tumour at King's, then 2 x cisplatin. That's it now, just hearing test MRI, CXR and USS. (Get me with the abbreviations.) And then sweating over the results of every blood test.

She is very up and down today -- like she was after the 5th dose of chemo which ended up with a week in hospital with neutropenic sepsis. Her blood counts are holding up so far but her magnesium is dropping again so we're upping her oral dose. She is expert at spitting it out, she hates it so much, poor darling.

Lots and lots of tears here from the older ones today. Think everyone is a bit post-traumatic. They've been such absolute troopers, at last they can relax and let some of the tension of the last few months out.

Sorry, unnecessarily long and waffly answer. Are you allowed visitors? Are you stocked up with ready meals? Have you been brought coffee from the ridiculously trendy coffee bar across the road?! Good luck.

GreatExpectation Mon 08-Apr-13 23:17:42

Yes to visitors. I have my sister visiting from Oz at the moment, sadly she's leaving just as they predict things are going to get difficult. The fridge box is topped up with Waitrose ready meals from the Brunswick centre and hubby is mainlining caffeine from the Coffee Room. I like Elephant the best. We've spent the most time here, although we also spent 5 weeks on the ICU from the day B was born. We've been on Squirrel and Lion too and had a couple of trips back to the ICU with infections. Oh, and a few stays in our local. Basically we've been in hospital since he was born on 29 Nov with a few precious days in between. We had the whole of last week at home, it was amazing.

I'm just knackered really. But thankfully the treatment is working well so far and he's going into HD with little sign of any remaining cancer, so as good as it gets.

Praying4Beatrice Tue 09-Apr-13 00:14:44

Oh my goodness GE, that's a whole different ball game... Really glad that the treatment is working and you've had a little time at home. How long is this phase predicted to last? How long is your sis there? Even more unmumsnetty hugs coming your way.

GreatExpectation Tue 09-Apr-13 08:38:40

We will be here for 6-8 weeks probably. Chemo all this week, then waiting for counts to recover. What the Trazzles are just beginning to emerge from.

Sadly sis leaves on Monday, going back to Australia where all of my family are. Mother in law is lovely and helps. But I miss my family so much right now!

Praying4Beatrice Mon 15-Apr-13 00:21:36

How is it going GE?

minmooch Mon 15-Apr-13 08:12:43

Hello everyone

Firstly Trazzle my thoughts are with you today as you meet the consultants. So very distressing and even though I have some experience, different cancer, but I still don't know what to say - that's because it is all so wrong, so wrong. Just know that you have so many people thinking of you and your family. Xxxx

GE how is your son doing? How are you coping? Wishing it goes as smoothly as possible. Xx

P4B - how is Beazy doing? Have her magnesium levels been sorted? I hope your older children are doing ok. It's so hard to look after an ill child and also your healthy children. It is so unfair on all of them. Xx

Kinky - how are you doing? And your daughter? Hope work are not putting you under undue stress. Keep on keeping on! Xx

Waves at everyone.

As for us Will has his last maintenance chemo today. I am grateful that he has had a relatively smooth passage through this part of his treatment but now what? Scan in 3 weeks and then we will know what is happening to the tumour. I feel very anxious about no chemo as at least it was fighting the cells. Without it what is going on?

I am plagued with distressing thoughts, as we all are.

Love and strength to everyone. Xxxxxxx

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