Mumsnet Talk

Thank you Truly Both DS went to their Dad's on Friday evening for the weekend so I have self medicated with wine and chocolate! It was such a shame as we had had a good week and I shaved my hair off on Tuesday evening (for The Brain Tumour Charity) and we had been having a laugh about it.

I hope this week will be boring!

Oh Minmooch, you are having such a rough time. I worry when I see your name at the moment - can't imagine what it's like for you!

I do hope DS is OK, and that youngest DS wasn't too fazed by it. And that you are calm and being kind to yourself.

Thinking of you so much, with love and hand holding.

X xx

We have had a frightening afternoon :-( DS stumbled and fell at home hitting his head on the (carpeted) floor. He grazed his eyebrow but his vision went funny/blurry. He also felt dizzy and had to stay lying down. After a quick check with his oncologist nurse I called 999 for an ambulance as they wanted him to get checked at A&E. paramedic there within 5 mins and then an ambulance 10 minutes later. Poor DS was very frightened (as was I but youngest Ds was about to leave to sit one of his GCSEs so I was having to be very calm).

A check over at A&E and they said he was fine. Blurry vision was probably shock, fear, adrenalin all hitting his blood sugar level. All very frightening. He came home and slept for 3 hours.

It has made me very shakey and feel very vulnerable :-(

Trazzletoes oh dear so sorry, hope it gets better for you and your ds..

Praying4Beatrice oh no. hope it is not kidney damage and if so that it is temporary. Ah yes she has been requesting the oddest things like mushroom soup. Not really something she would have asked for before.

Well the good news is that her appetite seems to be getting a bit better. She had mushroom soup twice today! Quite an achievement...

Sorry that could be a bit unclear. I mean, if my wishes could come true I would wish we were all out of this situation of course. I'm praying at least.

Thanks haz. We were in for a gazillion more blood tests today because Beatrice's haemoglobin is still going down. Apparently it might be down to kidney damage -- hopefully temporary.

Beatrice really lost her appetite during chemo. It was poor anyway, presumably because the tumour was so massive it was squashing her stomach and also restricting blood flow to it (the blood vessels were really stretched round the tumour). Yuk. She did eat some really surprising things -- esp smoked salmon and olives! I think it was the saltiness/strong flavours. So maybe try your dd on some things she wouldn't normally like IYKWIM?

(Beatrice didn't need a feeding tube but only because of breast feeding -- not an option for most on this thread I know!)

min hope the new chemo is tolerable. I'm so so sorry you are still so worn out despite your holiday. If wishes were horses...

hazlin yes my 3yo has to be fed through a tube as he hasnt eaten properly since he started chemo.

Btw, has anyone's dc lost their appetite during or after chemo? DD still doesn't want to eat much and it has been 3 days since her chemo ended. Am a bit worried. She doesn't even want to eat her usual favourite foods.

Praying4Beatrice, dd had her last dose of chemo yesteray but today she felt a bit nauseaus. The doc said it is a cumulative effect?? She was really constipated last week and they kept giving her lactulose and today she had two watery poos
She is having her mri in a few minutes. To rule out neurofibromatosis. Am not really interested to know. We already have this war to fight, don't think i can deal with another one. And it's not as if they have a cure for NF anyway.
Really hope your dd can have her hickman line out soon so she can a nice lovely bath! I can't believe you are home educating...you are amazing!

Minmooch, thanks I really hope she doesn't have NF. I just don't think I could cope. Am glad you had a good rest at least, although yes I can imagine it being very stressful at the same time. I really hope things get easier for you and DS and that you get good news and that the chemo works...

Hello everyone. I'm sorry I've been absent but I've been hiding from the world since I got back. Holiday was a physical rest but it was very hard emotionally and mentally. I didn't mind being on my own, I didn't want to speak to anyone really. The boys went away with their Dad and they had a wonderful time. dS went parasailing, boat rides, late nights and great eating. He's been desperately tired since coming back and quite distressed at times.

We went back to hospital last week to transfer over from paeds to adult oncology for him. They have decided on an oral chemo to give him hopefully for 6 cycles. It's a tablet taken for the first 5 days of a 28 day cycle. It will mean only one visit a month to hospital and no weekly blood counts so minimal medical intervention. Chemo is active so if we can get some cycles in to him (dependent on kidney function and bone marrow) it still may hit the active tumour.

I'm struggling to be honest. I'm so tired, I'm so sad for both my sons. It's so hard, all the time.

Haz I'm sorry you find yourself back here with your daughter. I hope she continues to tolerate the new drug. I also hope your fears of NF on top of everything else are unfounded.

Kinky glad to hear your DD is doing well. I get your 'funk' - it definitely is life changing for everyone. Hugs

P4B - hope Beezy's bloods settle so that the Hickman line can come out as planned. We were thrilled when DS's came out and he could have a decent bath and go swimming. Crikey - home educating whilst going through this. My SIL has 6 children and she is home educating the youngest 3 - no mean feat.

Trazzles - hope you, Joe and all the family are doing OK. Radiotherapy hit my DS very hard but it was on his brain and spine so don't know if it has different effects on the different areas.

Much love to everyone - keep strong xxxx

Haz hope your dd is still coping ok with the chemo and that you are keeping your head above water.

min how was your holiday and how is ds?

kinky I hear you about the funk!

Beatrice was due to get her Hickman line removed a couple of weeks ago but it was postponed because her blood counts were all over the place. Things seem to be stabilising so it's scheduled for the end of this month. I'm so looking forward to giving her a lovely deep bath.

She's getting more cheerful and not needing so much carrying round which is a relief. But she's still very unsettled in the evenings and at night and as I'm bf that means she needs me. I've been feeling quite overwhelmed and then I feel guilty because I know I've got so much to be thankful for. But as she only naps for half an hour, is unsettled in the evening and I've got four older ones whom I'm home educating... As an ex colleague used to say, I don't have time to fart.

Hi KinkyDorito, yes we are in until Tuesday and hopefully can go back if dd doesn't have a fever or anything. It's just me and DH in Singapore, so am stuck here 24/7 except for the odd 15 min when I can pop down for a quick cuppa or a bite to eat. Thanks for the thoughts, hope all is well for you and DD x

Oh Haz, it sounds like you're all really going through it. Are you in patients at the minute? I hope you are managing to get a bit of time for yourself, although I know it will be of little comfort at the moment. Sending love and positive thoughts. Keep on keeping on. Hoping for a good day for you all.

Praying4Beatrice thank you. Hope your daughter is doing well.

Trazzletoes, thank you. Hope everything is going well for you.

KinkyDorito yes apparently it can be caused by the chemo used to treat ALL. How ironic. Glad your DD is doing well. Thank you so much for starting this thread btw.

The repeat bone marrow test confirmed it is AML and after several long agonising days, we decided to join the trial. She has been randomly selected to take the new-ish drug clofarabine. It is day 2, and so far so good. No severe side effects, just a slight headache yesterday which didn't last long, achy calves at night but they monitored her oxygen sats and bp and everything was normal and the achy calves were fine in the morning. She took a nap today during the chemo which is very unusual for her, but apparently this is normal during chemo. Don't recall her napping during the chemo for ALL though! Feeling very sorry for me and dd today though because the doctors came round to examine her and said she has a number of cafe au lait spots on her body (on her back, her arm, and behind her legs) and said it could be Neurofibromatosis. They even took photos. Like as if I haven't had enough bad news this week to last a lifetime. The eye doctor came and checked her eyes though and said they were normal (no tumours or cataracts or anything) so I hope that's that. Having AML is nasty enough, I am not sure how we would cope with a diagnosis of NF on top of everything

Hi Trazzle. She's doing okay, thanks. She's attempting a full week in school this week, which is great. She is managing things much better, far less tired. Hospital next week. I'm okay, in a bit of a weird funk at the moment hence not been on here much. I think I'm still coming to terms with everything that's gone on and the consequences on us all. It's certainly affected my health, let alone things like work and finances. Having a child with cancer is long-term life changing I think. I need a good shake and to just get on with it!! How are you? How's Joe?

kinky how are you doing? And DD?

min I'm so sorry about the test results . Sending much love.

haz I'm sorry to hear about the relapse. From what I have read, it can as a second instance when the ALL has already been cured.

thanks...

Hi haz I'm afraid I can't help you either - I'm another one with knowledge of solid tumours rather than blood cancer.

I'm sorry to hear your news though.

haz I'm so sorry to read your story. I don't have any experience (my daughter finished treatment last month for hepatoblastoma) but just wanted to write a quick post before someone more knowledgeable comes along.

Hi everyone, I am new to this thread. I have not been on MN for a while. 3 years ago, DD (9) was diagnosed with ALL and underwent 2 yrs of chemo and went into remission for a year and 2 months. After her blood counts dropped last week the doctor did a bone marrow test and informed us that she has relapsed and he said it was AML now. We have been transferred to Singapore (long story, we live in Malaysia) and we are now awaiting results for a repeat bone marrow test. Has anyone heard of an ALL patient developing AML after being in remission for a while? What is the treatment for this? We were told that dd will likely undergo standard chemo for AML, and then probably need a transplant. They also asked if we would like to join a clinical trial instead, using clofarabine. Anyone familiar with this??

I hope you can recharge a bit, min. Thinking of you loads.

min however stressful it seems now, I suspect a break will do you good. I hope you can relax and enjoy yourself to some extent.

Your DSs sound amazing.

Another lurker here.

Minmooch I hope your break offers a little respite from your nightmare (though I'm not sure how anything could). Anything I think to write feels so lame and inadequate but you are in my thoughts.

The anxiety is completely understandable. Anything out of the ordinary is hard when you're low. But if you can get a break, even just a change, it will be so good for you and help you to support your lovely boy.

Heck, what do I know? I'm not in your situation. But I feel for you so much and want you to get whatever comfort you can. Big hug.