Out of my mind with worry [Please read the OP's updates before responding - Title edited by MNHQ]

[YourRubyMaker]

Someone please just give me some hope I’m so stressed I can’t function , my 10 year old since sept has had a limp in one leg then it became a weekness in his arm and hand on the same side , doctor was useless and made me do it as two separate issues and make another appointment!!! Didn’t take me seriously and Had X-ray on hips all fine (obviously 🙄 ) I went to see another doctor who said im referring it for urgent peadeatric appointment (great so helpful ) and he wanted to refer for mri but couldn’t , appointment comes thro and it’s in fucking June !!!! And that’s a urgent referral , in the mean time it’s got worse and now he can’t run and often stumbles and falls doesn’t use the arm hardly at all , have taken him back and they’ve now booked a mri brain scan for next weekend , which happens to be on his birthday of all days 😭 he’s mental health is shit as is mine and he’s obviously worried , how long does a brain mri scan take please ? And has anyone ever experienced issues like this and it not be something life threatening, I also have a toddler so am still having to be normal and do normal stuff where as I just want to lay in bed and cry

• [Message from MNHQ - please see OP's updates before responding]

OP I’m so sorry. I’ve only just come across this thread. I have nothing helpful to add, but I am so sorry.

Sending you all so much love OP

Oh OP big hugs. Its just shit isn't it. Without outing myself I remember being in the room when our family was told similar news in what feels like yesterday and a lifetime ago at the same time. You've also got your toddler to deal with so as much as it's easier to say you've probably gone into shock and start with a practical approach. Get an understanding of what type of tumour ,where it is and start researching. Your going to have to gather what little strength you've got atm and armed with the information go to brain tumour charity forums, whatever lakes u can fidn and sift through the emotional stuff and find the different treatment options available here and abroad. They'll likely start him on treatment straight away so be ready and ask questions about what's coming next re radiotherapy / chemo if he can be offered it. Depending on where your based there are some great local charities that offer support to families to some of the treatment centres in terms of getting youbready for what's to come treatment wise etc. And I think the single most thing I can say is ...don't lose hope..surround yourself by people who are going to rally around you in positivity and anyone negative you don't need that right now and he doesn't. Not to say you won't have those moments you very much will but it makes it easier having those around you lift you up. All the best OP

I couldn’t read and run and want to let you know my thoughts are with you x

Oh goodness op I'm sending you all so much strength and love

You fought for him and you got him scanned faster. He is so lucky to have you on his side.

Dear OP, I just wanted to send waves of support and strengths your way. Also, just wanted to encourage you to keep hope and faith. You are now in a place where the specialist care will be given. My poor friend received news of an aggressive cancer diagnosis for her 5 year old. There was spread too. When I looked into it (I never told her, on paper it looked bad). They had a gruelling year in hospitals for treatment and now her little boy shoes no evidence of disease. Also second going out to charities, specialist children brain tumour charities especially, they are great resource of information and support. Sending prayers to universe for you and your son.

My friend is going through this at the moment. He's just had a tumour removed and will now have further treatment. The NHS has been absolutely brilliant at getting him into surgery quickly, and then setting his future treatment. It's an overwhelming shock at first. Take every bit of support you are offered from the hospitals, charities, friends, family; you need to look after yourself too. He is lucky to have you as his advocate.

Medical advances are happening every single minute of every day. Even with all the positive stories here there is even MORE hope than when they happened.

Thank goodness he had you to keep fighting for him xxx

I've just come across your thread and read all your updates as per MN instructions. My eyes started leaking the more I've read.
You are so strong and we are all with you sending virtual hugs in what must be a terrifying time.
Be brave Mama, you can do this...
(I know this is not really going to help you, but really wanted to let you know we're thinking of you & really wish you didn't have to go through this!)

You are in shock and your brain will not function as it normally does whilst it tries to understand your new reality.

Take notes or record conversations as there is an information overload and the fear that grips at 3am will scramble conversations you try to recall.

Overnight bag, socks, a book to try to distract, chewing gum and cordial as hospital water tastes grim after a while.

Things will happen very quickly from now on, my wife was diagnosed and less than 24 hours later had neurosurgery to debaulk. Then there was a lull before chemo began which was very hard.

Stand your ground, if you think there is an alternative way present it and advocate for your son. The NHS has a one size fits all approach, you know your son better than anybody so find your inner strength.

Your world has been turned on its head, cry away from your son, don't let him see your fear whilst you navigate the early days and digest where you are.

Do not google, there will be a time for that but it is not now, just take each hour at a time and keep breathing.

I shall take you with me in my thoughts whilst I walk the dog xx

I couldnt pass by..I am and hoping, praying and sending you love.

op I know it might not feel like it now but the extra push you gave the doctors to get him in sooner could have made all the difference. Sending so much support to you x

I have just read your updates OP. I'm so very sorry, to hear your news. I can't even comprehend how you feel. We are all here, to offer support. Sending you much love ❤️❤️❤️

@YourRubyMaker I'm so sorry to hear that you are dealing with this. I just wanted to send love and . Take care there.

Can’t stop thinking of you and your boy. Sending all the love and thoughts - really praying the tests today are positive in terms of treatment options etc. 😘

You’re a wonderful mother- I understand that you’re crumbling inside but you have pushed for your dear son to be seen and you were right that this couldn’t wait. Your devotion has got him into the hospital and I hope and pray that you will have treatment that goes well.

This is different I know but a friend of mine is going in for brain surgery next week. She has a benign tumour that has been monitored for a few years. it’s now grown to a dangerous size and she needs surgery. She’s a young woman and prognosis looks good. I know this is not the same but I’m just trying to think of anything that’s slightly positive that I can tell you.

I hope and pray that your son can be treated. Words can’t express how much I’m thinking of you and praying for you.

I wish you and your family and your dear son all the love and hope and luck in the world.

Sending love to you all, you have been in my thoughts all day xxx

I'm so sorry 😞 thinking of you all x

OP, I know from experience with friends who have been through something very similar with their child that there is nothing anyone can say right now that will make you feel any better. You will be in survival mode and living minute to minute. But it will get better. You will get a plan put in place and your DS will get the help he needs. For now I just want to commend you for trusting your instinct and advocating for your DS and not just waiting until you were told. You have done an amazing thing for him.

Just wanted to say that I’m sending you love and hugs.

Keep breathing. Slow your breathing down every now and again.

I know it will be the last thing on your mind but don’t forget to drink and eat (even if it’s just small snacks). Is there a friend or family member who can come and be with you?

If you can get up and just stretch every now and again. Get out into nature for five minutes if you can.

I know it sounds daft but doing these little things will help regulate your body. It won’t make this easier but it might help to get you through these difficult days.

I will be thinking of you a lot.

Heartbroken reading this, I’m so sorry about the path you’ve found yourselves on. But very proud of you for knowing something was not right and advocating so hard for your beautiful son. Really hope there will be some positive steps that can be taken to get him on a path to healing ❤️‍🩹

I can't find the words to express how sad I am to read this. Sending you all love and strength and prayers to any gods who will listen that your DS makes a speedy and full recovery.

I wish I had something constructive to add, I don’t want to read and run but my thoughts are with you all 💐 xx

He's lucky he has such a fantastic mum in his corner.
Thinking of you and wishing you all strength x