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.

bumping

Always around with nothing better to do.

Hi Kinky, How's it going?

Still hanging around! She's not too bad at the moment, just had monthly vincristine so we have the sickness/tiredness for a few days. It's her birthday on 16th so that's something we can all look forward to.

I'm just hoping we all have a smoother start to new term at school than last few months.

How are you?

OK... ish.
Scan coming up so as usual am driving myself mental by reading too much into falls, grazes, won't eat certain things etc. It is torture of the kind only those who have been through it will understand, I don't know why I can't be more positive but I guess it's some kind of self-protection thing. Sort of.

Plus yet MORE time off work - have got to the point where I feel I just can't tell them - I'm just so high maintenance for an employe and that makes me so vulnerable.

We seem to have growth problems too, and starting school is making me really anxious. The damage cancer has done is visible facially, plus radiation has caused hair loss and cisplatin hearing loss, and I'm terrified of bullying. Also I'm terrified of my own reaction - an angry tigress has nothing on me when I'm fighting for a DC who's already had to fight so hard. I'd take a bully into my own hands I think and that's not good!

Just popping in to say hello.
Want to wish you all the best and let you know I am thinking about your DCs and YOU.
X

Hi all. Sorry for absence - busy busy busy trying to sell and buy and move house.

My son is due to return to school on a phased basis. He wants to enter the 6th form with his peers. I too worry about bullying - not from his friends who all know the fight he has had - but I guess from any newcomers into his year. He too looks different now, op scars all over his head, patchy downy hair, in a wheelchair lots but walks very unsteady and a very weak side. He tends not to use his left arm, although he can use it but it just hangs by his side :-(. I will be staying at school with him until we are all happy that he is safe. Not really what a 16 year old wants, his mum at school with him, but no alternative at the moment.

He had his tri-weekly vincristine on Monday and sleepy too. But fingers crossed no sickness today so far - first day in months bless him.

After his op DS was on steroids. These have given him terrible stretch marks all over his back, bottom and legs. He does not seem bothered about them but wondered if any one elses child had these and used anything that was good? Although he is not bothered now he may be in the future.

Hope everyone is OK. I am tired and emotional all the time.

Queen I hope the scan gives you good results and hope. We have a big scan in October. Dreading it too. I am sorry you feel vulnerable at work but there is nothing you can do about needing to be with your child. Big hugs.

Big hugs all round to everyone on this hideous journey. May we all remain strong for our brave children.

Just returned from hospital the lad I work with has spent most of his summer in there. He made me cry (after I left) as he grabbed my keys and asked to go. He also grabbed his big bag the one with his clothes in and asked to told me and his mum bye whilst he walked off to the front door. He was well within himself and was happy to see me. I just think I was somebody different for his mum to chat to. He just smiles through it all though!!! Hope you are all ok?

Queen I feel for you where going to school is concerned - I worry about bullying too. DD actually has lunch in SEN room as she is autistic, so struggled before the cancer with mixing. She has had nasty comments about no hair/short hair, as children are very ignorant at times. I have repeatedly told her this says more about them than her, but admit it is tough to hear . She is getting quite hard about it all now - I suppose it is the least of her worries . Perhaps send them in on steroid rage, then nobody will mess with them?!

min we have the stretch marks from hell here, all up her arms and across her chest where they are very visible. Steroids have given her 'toddler' arms - consultant's words - as she has laid down so much fat. She is also now clinically obese even though she eats very little - again, steroids have caused it. She doesn't want to go shopping and feels quite rubbish about it all. She turns 14 this week, so I understand how horrible it must be for her. Her autism means that looks have never been her priority, but even she is struggling with it all at the moment. If you find a solution to the marks, please share.

Hello to everyone else.

cry with relief with me - scan was No Evidence of Disease!

I need some help sleeping - I have such bad insomnia now. Any tips from anyone? Im' only getting about 4 hours a night and I look like death.

Queen that's brilliant!

Tablets would be the best option, though if you want to avoid chemicals try all usual - no caffeine a couple of hours before bed, milky drink, bath with lavendar bubbles? Personally, if the stress has done it, think a helping hand from tablets might be best for you. Sending love.

What a relief Queenmarigold Sorry. No tips on beating insomnia. I have resigned myself to looking horrid for pretty much the rest of my life.

Very best wishes to everyone on this thread.

I just popped in to say it is the last day of home meds for my son. His last day of Methotrexate and Mercaptopurine. 3 years, 3 months - done. May the leukaemia never bloody return. Fingers crossed tight.

Raising a massive glass of for queen and msnobody! Congratulations to your little warriors, these little victories along the way are so very sweet.

Are you going to celebrate, msnobody? We thought we wouldn't but when the time we came had a sleepover for the friends who visited DD in hospital and had a cake made with 'no more chemo' on it. You should have seen the lady in the cake shop's face .

I use Kirkland Signature Sleep Aid tablets, I got them on Amazon or they sell them in Costco, but I need to take them early and usually only half a tablet or I'm still good for nothing the next morning.

Thank you Farlo. Apologies for not knowing your story, btw. I will review this thread after posting.

We had a party this weekend after his last vinc injection and because it was also my DDs birthday. We had a massive cake from Costco iced to say happy b/day to DD, and congratulations to DS.

My sons carer has given him his last oral meds a few hours ago (he has a carer due to his other SN so I can get a break)

I kept his meds in a wicker basket on the kitchen counter top. I am going to burn that basket now - no joke. I hate it and that basket will NEVER grace my kitchen top again.

Again, best wishes to all who have a DC with cancer. I don't mean to be flippant, I'm just in turmoil. It's finally over. Thank God.

Massive congratulations to Queen and Msnobody. How wonderful for you both - I am crying tears of happiness for you both.

My son woke from a horrible dream last night, sobbing. He had dreamt that we were back at the hospital for his MRI (in real life is coming up in October) and his consultant told him he is going to die. He was sobbing hysterically, telling me he does not want to die. I stayed with him until he went back to sleep but when he woke this morning he burst into tears again

I've done the it's just a dream talk, told him dreams allow our fears to come out. But I'm terrified he's had a premonition and I can't stop crying (not in front of him).

The horror of this is all consuming :-(

minmooch I absolutely understand that fear. Your poor son, what a horrid dream. Fingers well and truly crossed for you both in October. x

How horrible for you and him, min. DD never expresses her fears, but she is asperger's. She wouldn't tell me dreams, even if they were like your son's. I wonder what goes on in her head. This whole thing is so scary and overwhelming for them.

DD is 14 today.

Can't wait for 15, as all this will be finished and we will be on our way home after a lovely fortnight in Florida. I will also be much thinner and looking fabulous .

Ms I'm really pleased for you all and I hope you get a chance to celebrate. I can't wait until we get there.

Oh, minmooch how horrible! I still go through phases of having recurrent nightmares about DD so I can only imagine how it must feel for him .

Belated Happy Birthday to your DD Kinky, I hope that the next year flies by and you have the holiday of your lives that you so deserve after all this!

Everyone, I am going to start a thread about Gold Ribbon Awareness Day (www.bechildcanceraware.org/how-you-can-help-2/gold-ribbon-awareness-day/) and share our story, I'll post a link here and if anyone's interested in putting their tuppence worth on it please do so. Let's see if we can make this a big one in the UK. I always hope that one day gold will match the sea of pink for breast cancer awareness.

In the meantime would everyone like to pop over to this thread:

www.mumsnet.com/Talk/_chat/1544335-The-playroom-in-the-childrens-cancer-ward-where-Aillidh-was-treated-is-to-be-closed?watched=1

and sign a petition to try to stop the closure of the play room in the children's cancer ward in Glasgow, Scotland?

Have signed the petition xx

Just heard that one of the children we spent months in hospital with passed away 4 weeks ago. She was so vibrant ..... This world is so cruel ...... Oh god how sad :-( why children? It's so unfair? :-( :-(

I am so sorry minmooch. I wish I had the answers to those questions. DD's friend passed away at the start of the summer, she was amazing and I hate cancer's guts for taking her away. Thinking of you and of her family.

minmooch. We lost so many recently. It is horrible.

I hope you are okay.

Hi everyone, hope you're OK. Our recent test results were clear. Phew.

I heard a sad story though, in our hospital there was a 6 year old with advanced neuroblastoma, who had basically been abandoned in there by her parents, they were never there during the day nor to comfort her sobbing with pain in the night - the rest of the parents did their best to help.
Anyway she died recently, I was really sad. I bet her family weren't even there with her. The family had all sorts of other stuff going on - other children, social services involved et; so it wasn't deliberate abandonment but all the same they were crap for her.
I just feel quite down about it - what a poor little girl, what a sad sad life. No love, pain and hospital and hospital test; on her own. What a shame.

Hi Queen, I am so pleased to hear that the test results were clear!

Very to hear of the little one in your hospital. Neuroblastoma is such an evil thing, that is what took DD's friend too. Luckily DD's friend's parents were always incredibly devoted to her and she was rarely alone even for the shortest time. It is simply heartbreaking that any child would have to go through that torment alone. to you and all the other parents who did what they could for her.

It is a very good point that you raise though, the incredible agonising pain that children with cancer go through. It is so humbling, what they have to put up with, and I do wonder could the medical teams not do more to control their pain levels? I remember DD screaming in pain many times and getting her adequate analgesia from the doctors was often a very difficult task and could take hours even whilst on the ward. What is everyone else's experience of this issue? I have often wondered if the fact that children cannot demand pain relief in the same way as adults leads to them going without more than an adult would do, even with us there to advocate for them.