Children with Cancer

[Twunk]

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.

Thank you min and twunk. The first op is tomorrow am but he was admitted today. Surgical registrar more optimistic about saving kidney today, apparently the latest scan was more positive on the less affected kidney. The worse tumour isn't shrinking, is maybe growing, but hopefully will soon be out too.

Just to have our first interruption of the night, meds and obs. Did convince them to do it together. Took an hour to get i to sleep - and he has been asleep for 45 mins..... But hard as the hospital routine is, it doesn't compare to the schedule you have hazlinh.

Min - infuriating isn't it that teenagers don't get hungover! But it sounds like a lesson we all have to learn. Must be hard on your older son though.

Great news on Alex's type of ALL!

Thank you all for thinking of us, I keep thinking of questions to ask you, nocake, but on balance as i overplan i think i am better not knowing or else i will try to deal with every eventuality in advance.

Oh and x post with nocake!

It means so much to have you all thinking of us. I am thinking of you all too. X

Still thinking of you and Isaac unbuckle. I hope the day goes as smoothly as possible!

Thinking of you today unbuckle. Hope the op goes well.

He's in the picu, sleeping not-very-peacefully. The op went well, they still hope to take the large tumour out next week. All your support means a lot to me; hope you are all having as good a week as you can! X

Good news that the first op is over. It must be a huge relief. I hope I settles down and you both get a peaceful night.

Hope the little man is recovering well. We're in this week for some drug treatment. The ward is full so we've been put in a special isolation room and it's lovely - nicer than the normal rooms! Alex had a lumbar puncture yesterday under sedation - the sedation they give is ketamine! So he was pretty out of it for a while .

The methotrexate has gone in fine. Might be out tomorrow, might be Friday. Tomorrow is my DH's 40th so we're hoping! I've bought bunting and balloons though just in case.

Hello all,

I don't know how I haven't found you before, we've been through some very bleak times and it would have been so reassuring to have others to chat to. I'm sorry to read the pain of other families on here, it's crap that it goes on and on.

DC3 was diagnosed with an optic pathway glioma in 2008 when he was 3. We've done Vinc and Carbo, Vinblastine, de-bulking surgery, temozolomide and 36 sessions of radiotherapy.

We've had 18 months of stability but his last scan shows 3 percent growth. They hope this is cyst activity as the tumour implodes.

He is registered blind but has some sight, is on hydrocortisone and desmopressin as surgery and radiotherapy have destroyed his pituitary. He needs growth hormone but they can't give till he's had 2 years of stability and he needs injections to stop puberty. He has a learning disability from the rt.
And I love him.

Hi Velvetbee I'm sorry you have had to join us but glad you have found us. I'm sorry to hear about your son's diagnosis - all of us on here know how harrowing it is watching one of our children seriously ill. I'm sorry that there appears to have been some growth but I hope that it is in fact cyst activity.

My DS was diagnosed with medullablastoma, aggressive malignant tumour. He has been through surgery, 6 months of high dose chemo, 6 weeks of twice daily radiotherapy and 54 weeks of maintenance chemo. Tumour still present and active he has now been on 5 months of Temozolomide but this last cycle has been very hard on him, no appetite, lots of sickness, no energy, so his consultant decided not to give him yesterday's (and 4 further days) chemo. Hopefully he will get a chance to eat a bit and gain some weight. MRI due two weeks today (on his 18th birthday) to see what's happening.

We've been on this journey for two years now and we are all tired beyond belief.

I hope you find some support here to help you get through.

Hi velvetbee, just to echo minmooch i am sorry for what you're going through but glad you've found us. My baby son is in the icu at the moment recovering from an op to remove most of one of his kidneys; he's having the other one out next week.

Hope the drs are right about the cyst.

X

What a long journey Velvetbee - I've just looked it up as not heard of a gioma before (it's amazing how much you learn about childhood cancer once your child has it!). I also have everything crossed it's a cyst.

We are three and a half months into our journey. Knowing that even once the 2 years is over we have years of tests and the constant thought of it coming back is...depressing. But I'm trying to do that living one day at a time thing.

Hello Min I hope DS has a comfortable few days without medicine and gets some appetite back. I assume you didn't manage to move his appointment from his birthday?

Unbuckle how's the wee chap doing? Hope you're managing some rest. Thinking of you.

It's DH's 40th today . I remember his 20th birthday! It was just after we met . It's making ME feel old, though I am a smidgen younger...(1 year, 4 months).

Glioma sorry! I knew what I meant

Hello all, I relate to the 'living each day as it comes', thing. Sometimes it seems such a wearisome slog.
Will be thinking of your special people, big and small.
x

You're right, velvetbee, but it's hard to live each day when some are so manifestly shite! We are on the ward now, it is just how i remembered. Have been waiting all day for the nurses to arrange an ultrasound as i's belly is v swollen and he is doing the green bile vomiting that sounds similar but much less severe than what happened to nocake's son.

Hope you don't mind me posting. There is a mnetter needing some advice here. She doesn't feel ready to join you on this thread yet. Thank you. x

Has he had the scan yet Unbuckle?

Thinking of you xx

Yes, scan was clear which is good, they are likely to repeat it tomorrow though as he is so painfully swollen. His bile is less vile now although i would never have guessed at just how horrible it can be!

Yes, scan was clear which is good, they are likely to repeat it tomorrow though as he is so painfully swollen. His bile is less vile now although i would never have guessed at just how horrible it can be!

Oops my observations on bile were so interesting they appeared twice! Who would have thought it!

Would be good to hear how everyone else is doing, I'm in a hospital bubble but i know you're all still out there!

Unbuckle - that is great news that the surgeon was more optimistic about saving the other kidney. I'm glad too that the op went well. Sorry to hear he has been uncomfortable today, I hope the swelling goes down soon. I sill remember the green bile vividly.....

Hi Velvetbee so sorry to hear what you have been through, it must have been very difficult. Will be keeping everything crossed it is just cyst activity.

Minmooch - I hope the break from chemo gives your DS a charge to recharge a bit. I hope the next couple of weeks passes quickly for you and am hoping desperately for good news from your scan. Your poor DS to have it on his 18th though

Twunk - I hope your DH had a good birthday. Did you get to go out to celebrate?

Hi to **Trazzles, Hazlinh, Stinkyfeet, carebear13, and anyone I've missed. Hope you are all having uneventful weeks.

All fine our end, although DD is coming down with something. And the scan has been brought forward to next week as the consultant is away the following week. I can hardly bear to think about it - please god dont let it show anything bad....

Unbuckle glad you are back on the ward but sorry that I's tummy is so bloated and he is vomitting. I hope both settle over night and you both get some rest.

Nocake glad all fine with you. I feel your anxiety. My DS' s MRI is in 11 days. The build up is horrid and then the wait for results. I get by only on wine and chocolate. Read in the Daily Express today that chocolate I fact helps you to lose weight - surely not the amount I put away each day!

Emotions running very high here, tears very close to the surface. We all deserve good news. Xxxx

What's up min?

Sorry, just reread your post and see it's coming up to scan time. I know how unsettling it is. Sending you strength xx.

Waves at all

Thanks Nocake. We didn't get out for DH's birthday - levels of mtx were too high. We're home now though and I fell asleep and slept all afternoon. I had bought DH a really fantastic camera which was a total surprise for him - got people to contribute then asked his bods to actually buy it (as we share a bank account). My friend made him a cake in the shape of the camera! And loads of people sent cards and gifts. He was very touched.

I hope DD is okay too.

Scans/results/etc are awful. Our next lot is a week Monday, when we're next in hospital. I shake when I think about it as these are critical to the next 20 months, and the years after too as they reflect his likelihood of relapse and survival. I think it's a special kind of torture.

Unbuckle pleased to hear scan was okay. I hope the swelling, vomiting etc all stop soon.

Hazlinh hope DD is still doing well after her SCT. xxx