Scaniexty

[banabak]

Anyone else got a scan coming up in the next month? I could do with a place to chat away the nerves with people who get it. Lead up is always tough, but there's headaches going on atm which are making it even tougher.

Sometimes/all the time, I really do hate this way of life.

@banabak I will keep my fingers crossed for you re the results. Very glad to hear the headaches have stopped.

Hanging on at this end too.

@C152 it's not good news here I'm afraid. DS was admitted to hospital for chemo on Friday, but in the early hours of Saturday he suffered several seizures. His scans showed more spread which is starting to penetrate his brain. He eventually came round in intensive care after a massive dose of steroids to help the swelling which was causing the seizures.

Yesterday we decided to stop treatment and take him to hospice to spend the rest of his days. We have since decided to bring him home as he felt uncomfortable at the hospice. We aren't expecting him to live for more than 2 weeks. I'm hoping it happens in his sleep, but he could have another seizure. We have meds to keep him comfortable. He's 13.

Oh god @Downtoyou , that's awful. I have no words. I am so dreadfully sorry.

@C152 thank you. I feel strangely at peace at the moment, just enjoying time with him, he's completely himself, you wouldn't even know anything was wrong. He understands what's happening and is more worried about how we are going to cope without him. He is incredible!

@Downtoyou your boy sounds like a wonderful soul. And so do you.

@Downtoyou I'm so sorry to read this. glad he is at home with you and feeling comfortable. Hope you have good care around you. He sounds like a lovely caring boy. It's so hard to process that this can happen to kids this age and we haven't found cures.

Thank you both. It's just hard to get my head around how he was a normal, healthy teenager just 8 months ago. He's a lot more sleepy today and the team have been with a care plan. They will visit daily and are on the phone if we need them, but for now we just wait.

So very sorry to read this. Shocking how things can change so fast.
May I ask what made him feel uncomfortable at the hospice? My daughter is the same age and I can anticipate her not liking hospice either, but interested to hear a 13 year old’s view.
Is the team from the hospice or community nursing? You sound amazing and I hope it does happen in his sleep as you say. Have you got anyone else at home to share this with (partner/other children)?
Here to chat anytime

@ScaredOncologyMum I think we were expecting the hospice to be a quiet sanctuary where Jake could feel like he was home from home. I'll be completely honest, we weren't expecting to be so exposed to other children there who have neurological problems and we could hear them screaming and crying, and there machines beeping etc. The hospice is primarily used as respite for parents and carers and that wasn't explained to us. The staff were lovely and the surroundings are beautiful but it was too much for us. At the moment Jake appears completely well and we are expecting him to decline quite quickly so we felt we would manage better at home. We have the community team and another hospice outreach team looking after us.

Thank you @Downtoyou for replying. Will certainly check on that when the time comes to make that decision. Quiet at home sounds much better especially if the weather is good where you are.
What do the various teams do? We have a big bag of ‘emergency’ meds already, various types of pain killer and dex, but not needed yet.
Has your son been able to maintain friendships? Does he have visitors? is he mobile? So many questions, so sorry but so rare to find someone with same age child.

@Downtoyou I know what you mean as the children's hospice near us is the same. It's about an hour away from home which feels too far.

@ScaredOncologyMum I think the community nurse team is more to administer meds and the hospice team is more for emotional support. We have a huge bag of emergency meds on top of the fridge. Dex is literally keeping him alive right now and they will keep him on it until the disease breaks through it, it's scary as we just don't know when that will be.

I think Jake has found friendships difficult because he hasn't spent much time at school with chemo and infections. He does speak to them on social media and when playing his Xbox. We are visiting one of his friends at home tomorrow to get out of the house. We haven't had too many visitors, we are an army family so don't live near relatives, just a few acquaintances where we are. My husband and I separated 4 weeks before his diagnosis but are amicable. He is staying with us at the moment so I am not alone if anything happens in the night. My family are coming down next week. My sister is a palliative care nurse so that will be comforting to know she is here.

Jake is quite mobile, slightly wobbly occasionally on his feet but other than the fact he has no hair you wouldn't think there was anything wrong. We had some supercars visit our house today from Lotus and they took him out for a spin, then we had tea in a pub. It's really hard to understand how incredibly poorly he is. He has had an amazing day today.

The split between how things look and how things are is so hard for our brains to comprehend. Am so glad Jake had a good day today.
Having a sister with such a skill set must be a great comfort. You sound amazing and am sending all best wishes.

This is heartbreaking. Im so so sorry x

@Downtoyou I’m so so sorry. I’ve been debating whether to write this and I’m still not sure so very sorry if this is too soon and morbid

we lost our daughter at the end of January, I won’t burden you with the details

what I wish I had now are videos of everyday things like a video of us having a conversation, a video of us watching one of her favourite shows, a video of her waiting for dad to come home from work. I have two minute long videos of things but they aren’t long enough now

I have a video of her gripping my finger with her toes and it helps me remember how it felt so I wish I had ones of her jumping from the steps to me and hugging and holding hands and running round the house

sorry again, this is probably very personal and way too much. Not expecting a reply and please do ignore if not at all helpful, everyone has a different way of doing things and you are probably getting advice in real life

thinking of you xx

@SoManyQuestionsSoMuchSadness thank you for that advice, I think that is really helpful. I am so very sorry for the loss of your daughter. I am happy to hear about her, if that helps you.

His dad is wanting to do all these amazing things on his bucket list, but I just want to do regular stuff like watching a film or dancing in the kitchen when we tidy up after a meal. Jake wants to see his sister catch a fish, so that is what we are aiming to do today, he still appears well for now.

Thank you so much @Downtoyou that’s really kind, I’ll leave this thread to scan support but feel free to ask me anything you think might help you

I agree, it’s the real life everyday things that I miss but I’m sure it will be lovely to have those bucket list items too. Sounds like a brilliant way of spending a Sunday!

Wishing you all many many many many happy everyday day moments xx

Stable scan for my dc. And so we live on until the next one with as much normality as we can. Thank you for the handhold, I'm here for anyone else who is going through scan worries

Glad to hear @banabak . How often are they done?

Good news @banabak . I hope you have a little bit of peace before the next one.

Fantastic news @banabak . Will there be a point where the scans are less often for you, or do they ever stop? For us they go from 3 monthly down to 6 monthly at some point, and then after 5 years maybe every year?

The tumour is still there but my dc has recently gone from 3 monthly scans to every six months. The oncologist talks about seeing the tumour as a chronic disease that will need multiple treatments, so far my dc has had one chemo protocol and multiple surgeries.