Children with Cancer

[Twunk]

The thread you neither want to join, nor leave.

We send our love to Minmooch whose son Will sadly died this week. Min, we hope you feel able to contribute to this or future threads when you feel able.

My son Alex, 4, was diagnosed with Acute Lymphoblastic Leukaemia on 26 July last year. I don't think anything can describe that moment when your world falls apart. You think of suffering, pain, and the very real possibility you may lose your child. Mumsnet has been a wonderful source of support and I have "met" some lovely people through these threads.

If you are in the same situation as us, or wish to show support please do join us. Sometimes people have questions on how to support a family who have just received a diagnosis - we are very happy to help.

Much love to all xxx

Sorry yes I disappeared off mumsnet for a while there - busy with life! Christmas shopping, Sinterklaas (a Christmas-like thing here in NL) and other stuff.

Alex had: decreased appetite (spleen enlarged), weight loss, was unable to walk, pain in joints especially arms and legs, recurrent fever, and he looked grey. The only thing he didn't get was the rash because his platelets stayed relatively high. I know one child who only had the rash and no other symptoms.

Anyway, despite that they were looking for several potential illnesses (mostly because unusually the ALL did not show up in blood tests).

Alex is doing so well now it is incredible. at Christmas it will be a year since he last had an acute hospital admission!

DS1 is also doing brilliantly. His reading and schoolwork are much improved (with a lot of help) and he had his 6-monthly test at the speech therapist this week - all scores are up, though spoken language structure is still way below normal. His comprehension is now way ABOVE normal.

Alex also needs speech therapy but it's more a pronunciation and clarity thing.

My son had blood taken a week or so ago and they came back as him having a low white cell count. I am so worried i feel sick. His were 5.8 (doesn't mean a thing to me). The lymph glands on his neck are still swollen too, he has a scan for those on 26th December.

coldwater generally leukaemia cells do show up in blood tests - Alex's were there but it had to be checked by a human looking rather than the machine.

This is a scary time for you, and nothing I say will alleviate your fears - but usually it isn't cancer.

Thinking of you xx

btw I believe his WBC is in the "normal" range though at the lower end of it (4 to 11).

Thank you. Would they have found cancer cells if they were present? Would they have mentioned them? Do you think theres a good chance my little boy is ok?

My daughter had acute lymphoblastic leukaemia, coldwater. Her blood counts were normal at diagnosis but blast cells were seen on the blood film which is how she was diagnosed. I do know of two children whose leukaemia did not show up in blood tests at all but needed a bone marrow biopsy to determine it. The cells would have eventually shown in blood but hadnt at that point.

Thank you. What other symptoms did she have?

She had a sore leg that started the day before she was diagnosed. Took her to gp that day who referred to A&E as she started to develop a slight temperature. Because of the temperature and bone pain we were admitted overnight and bloods taken but discharged the next day as bloods were fine (her hb was 10 which is slightly low but they put hat down to poor diet and gave me a condescending lecture on feeding her better!!). That evening they called us back to tell us about the blast cells on the blood film and that they indicated leukaemia.

Thanks. If they had a worry they would have called us by now yeah?! And they would have noticed if anything was in his bloods and called me wouldn't they?

I'm sure they would have by now coldwater

Thank you.

Hello all. Haven't posted on here for so long, but have had a look in from time to time and have thought about you all often.

Hope you're all well and staying reasonably sane.

Things have been going well with DD, she even started nursery in September and it's done her the world of good. It's certainly a point I didn't see us at when she was diagnosed at the beginning of this year.

Unfortunately I tempted fate and remarked how long it had been since we had an admission - and wouldn't you know it have ended up in hospital today. We're here till Christmas Eve at least but fingers crossed we won't be here much longer. Love to you all x

lovely I'm glad to hear your daughter has been doing well and I hope you're out of hospital as quickly as possible.

We've had some good news, DS's genetics results show that the cancer was sporadic and non- heritable which means he doesn't have an elevated risk of future cancers. I worry so much about something happening to his seeing eye and further tumours were my biggest concern. He will still be checked every few months which is very reassuring.

His artificial eye doesn't look great at the moment as he's had a huge growth spurt since it was fitted, however he has a custom eye on order which should arrive in January and will hopefully look much better. I'm a little sad that he hasn't had it in time for Christmas and that his first Christmas photos will be with a very obviously artificial eye, not because I'm uncomfortable or embarrassed by how it looks but because I don't want the memories of the cancer to dominate every time we look at them. But maybe I'm being silly and the memory of what he's been through will be there anyway.

Just seen on FB Lovelychops that you've made it home! Delighted for you!

MissMargot I'm as pleased as punch that you have received such amazing results! I understand completely about the photos - last year I had a bald child who was very thin and suffering from mucositis. But this year I have a happy, healthy child with a full head of hair and now I don't mind so much.

I hope the new eye comes soon and looks terrific!

Much love to one and all.

Thinking very much of Minmooch xxxxx

Yes - min, if you're around, you are in my thoughts today.

Whatever happens to him in the future, it's great to see Isaac enjoying christmas like a normal toddler, especially given where we were a year ago.

Much love to all who are in the middle of it all today. Xxx

Hi all,
Hope everyone had a lovely day and the LOs stayed well. We're doing ok, finished radiotherapy and starting immunotherapy on the 13th January. Delighted to see the end of treatment in sight but terrified also. He's doing great, running riot and finally starting to eat again so hope he copes ok with immunotherapy. Can't believe how intense this year has been but seeing him running around today made it all seem like a bad dream!

In other news, just found out that we're expecting dc3. A complete shock, totally unplanned. We had always hoped to have three but planned to leave it a while! It's very early days but I'm already terrified about how I'll cope with A's treatment and scans being pregnant...He has an MIBG in two weeks and I won't be able to go with him. Plus we both already feel stretched emotionally and we were looking forward to some "normal" family time after treatment ended. I was also due to go back to work around the time I'm due. So great news but conflicting feelings about it all . Anyone have any advice/experience in dealing with pregnancy/little babies and dc in treatment? Thanks!!

congrats Brave!!

It's lovely news, if obviously a bit of a shock. I'm sure you will cope with it - I know quite a few who were already pregnant when they received the diagnosis. All have coped fine xx

Wow congratulations Brave! I can understand why you're feeling so conflicted but I think one of the things that a cancer diagnosis does is shows you that you are capable of so much more than you think and unexpected circumstances become the new normal very quickly.

Congratulations brave!

As miss margot said, I'm sure you'll be able to cope with so much more than you give yourself credit for. I'm sure once the shock has worn off you'll find a way of making things work.
As my year has taught me, things rarely turn out how you'd expect them.

Thank you for your lovely messages Twunk, Lovely and Missmargot. All still feels very surreal. Realised I will have to tell A's medical team before most of my family as I can't accompany him to a few scans scheduled the week after next and the drugs I have to give him daily in the next phase are very dangerous during pregnancy.

Hoping I can feel excited when all these details are ironed out but head is fried with all my worrying! Sounds so silly but we had been agonising about when we could possibly have a third and it has been taken out of our hands. Hated the idea of leaving ds1 as an only child if A relapses. And now in a totally illogical way, I'm terrified that his pregnancy is a sign that he will relapse...ridiculous I know. Thanks again!

Congratulations brave - I understand it must be scary but I hope that the pregnancy brings you all joy. Xxx

Thanks for your lovely message unbuckle. It seems my worries were a bit unnecessary as started bleeding a few days ago and things don't look great. Drs were unable to definitively say that it's a miscarriage but I'm not very hopeful.

Because of A's MIBG, I can't be around him for 48 hours so have gone to stay with my parents while DH manages the boys. Seems so unfair not to be with them when this pregnancy is unlikely to continue. Such a mixture of emotions, he's due to start immunotherapy next week and it seems so daunting. Not a great start to 2015 but thanks for your lovely messages

Oh Brave I'm so sorry. Crappiness all round. Just sending you a (((((hug))))

Brave I'm so very sorry. Thinking of you and sending love.

Hey Brave,

So sorry to hear your news. How are you holding up? Hope you're being kind to yourself. Take care