Daughters WLE results and SLNB results

Hi , that’s a difficult worry to have, at least those nodes are now removed and with every year that passes your nine year old will hopefully benefit from any new treatment that comes along and get nearer to the age they feel the existing drugs can be used. The wait for result is never easy but we get more practised in our own coping strategies. 

I was thinking any cancer in children is quite rare and after writing the above I’ve paused and relistened to the melanoma patient conference talk by Professor Bruce Morland.

https://youtu.be/SJ8RrSbPQbo (I’ve put the link in again)

He mentions age 12 a few times (not sure if that’s an example or hard and fast rule) and that he feels the adult drugs for melanoma could be used in children but that the numbers have been so low that he hasn’t had experience of it. I’ve relistened to see if it’s been ruled out and I’m not sure. I’m therefore left wondering if they would prefer to use systemic treatments like immunotherapy and targeted therapies when they are definitely necessary rather than as an adjuvant (preventative) treatment. I think that’s a question I’d like to know the answer to. I’m hoping that there is some optimism around things.

Hi

I’m sorry they’re not the results you would have wanted to hear. I can imagine that’s a lot of worry for you all. That must be incredibly frustrating knowing there are great drugs out there that aren’t an option for her. I’d not really considered that when you posted previously, but of course they won’t have the required safety data on children yet for these treatments to have been approved.

How is your daughter coping with it all? Does she understand enough to be worried herself?  9 is scarily young to be having to deal with this.

Lots of love to you all, and fingers crossed it’s all safely gone already. X

Big hugs

Thanks KTatHome and for taking the time to reply to me. 
My daughter is coping well but she will just crumble at points. Shes never had anything other than a broken leg before this so it’s all been really scarey for her. The first time she even cried at having her blood pressure taken! So much has happened in the last 6 weeks and to be fair they have moved quickly on her but now we’ve got a breather in treatment, and my daughter is preparing to go back to school, it’s all starting to sink in and hitting the whole family. 
To be honest I still don’t feel that it’s all real. She was told that as she was 1 in a million she was special but as she said I wanted to be special for good reasons! I’ve had to answer questions like is my sister going to die? and What if it goes to my brain mummy? It’s the hardest thing I’ve ever had to deal with. Kids are amazing though, she doesn’t dwell and just wants to play her games and see her friends. She’s a bit worried about going back to school but I’m sure it will do her the power of good.

Im struggling with the uncertainty as I’ve always been a planner rather than a live each day person. My way of thinking is deal with the facts and I almost feel like I’m in denial by trying to be overly optimistic while not really knowing whether there’s still something lurking . After having the rug pulled out a couple of times now other people’s optimism is just irritating me! It’s just a whole new chapter for our family just hoping we can feel normality again in time.

Thank you again and Apologies for pouring my heart out here but don’t feel there’s much understanding around me. Friends and family just don’t know what to say.

Oh , Your daughter and yourself sound amazing with how you have had to handle things. The optimism thing is funny isn’t it, we have to feel it ourselves but also inevitably have low points, and at our low points if someone else is optimistic too quickly it can sometimes sound dismissive of our anxiety and uncaring. I also identify with that feeling of it seeming so unreal. I see from your profile that your daughter has had CT and MRI scans and that she’s going to have regular monitoring which can bring about those feelings of blips in confidence, but sometimes also that feeling of wanting to get on top of things and rally forward until we can get out of puff with positivity. 

So Im glad you felt able to post, I’ve no experience of my children being seriously ill, but my youngest had an abscess on her neck twice within 2 weeks when she was 9 months old and needed two operations. I wasn’t worrying until the hospital seemed to send a nurse to talk to me about worrying, and that planted worries in my head rather than alleviating anything ! 

I’m hoping the follow up becomes just routine for you, and that you identify what support you and your daughter need to help you through the uncertainty. I was wondering as well as this group if the parents group might be of help. I’ve put the link below.

https://community.macmillan.org.uk/cancer_experiences/parents_of_adult_children_with_cancer/discussions

I was also wondering about www.clicsargent.org.uk as they are a charity dedicated to young people who have been diagnosed with cancer. They seem to help with going back to school, amongst other help I’ve also heard about sunsafeschools.co.uk, through skin.org that had a stand at one of the melanoma patient conferences that I went to. 

I hope today is a better day for you.