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.

I've just seen this thread www.mumsnet.com/Talk/childrens_health/1716869-Low-lymphocytes-19-month-old?msgid=38055251#38055251

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

Thanks.

I just posted on that!

Well done little Bea!

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.

Oh min that IS exciting news! On both counts.

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

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?

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.

GE holding hand here too

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

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

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

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?

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)))

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.

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.

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!

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

Hi all! All going ok here. B is still tolerating feeds. He's a bit more sleepy and occasionally seems uncomfortable, but it's so hard to know what's going on/where it hurts with a 4.5 month old! He had his stem cell infusion today and now we're waiting for the counts to drop and side effects to kick in. It's pretty scary, you just don't know what you're going to get. Every time they take his temperature and it creeps above 37 I get jumpy! I just have to try and distract myself. Been playing endless scrabble and candy crush.

My sister was here from Australia for 2 weeks but she left today . She was a huuuuuuge help.