Out of my mind with worry part 2

[YourRubyMaker]

for anyone who was on the original thread sorry it’s been a hectic few days . Intensive care was horrific he kept trying to wake up and pull his ventilator out his bp was unreal so they kept having to sedate him ,. Managed to get back onto the ward on Tuesday, weds a blur but yesterday was really positive he got his own wheelchair and managed some light physio,. Today we’ll back to shit really we had planned to leave the ward for the first time and have dinner in the onsite canteen he’s since been sick and his heads swollen,. Waiting to see if he’s gonna get an emergency scan or not , just feel like it’s a rollercoaster and as soon as you think you’re getting somewhere you don’t . Still waiting on biopsy results which won’t be until next week , toddler is so unsettled won’t leave dh alone which is making life really hard as I can’t leave ds but need to go do washing etc , it’s a nightmare

I had to speak to my doctor yesterday about a sick note for work and I asked her for his name and have told her I want someone to call me back to make a official complaint about him , il also be looking into medical negligence if it does turn out the symptoms he has now are ongoing

So glad it's benign and your son is home!

Absolutely make a complaint against the GP! It's shocking he wasn't concerned about the symptoms and had you not advocated for your son and relied on the GP advice, the tumour would just be growing bigger and bigger.

My son went through similar in the fact that everything happened really fast and a year later, I'm still processing it all.

He had a blood cancer called non hodgkins lymphoma. It started with vomiting and tummy pain, just like a sickness bug but just hours later he became very poorly and had to be transferred to a hospital with a children's intensive care as we didn't know it yet but the tumour was in his bowel and it had twisted it.

He's had lots of ups and downs including been so unwell the first time, he couldn't have any chemotherapy and his tumour was all removed surgically. It came back 4 months later when he was stronger and this time he was able to have chemotherapy and has now been in remission for almost 6 months.

He's also learning how to walk again due to his twisted bowel causing septic shock. He goes to physio and hydrotherapy to help with that.

He'll need check ups every month for the 1st year of remission and then for the 2nd year it will go to every 3 months but he will be under oncology for 5 years in total. He'll need heart scans every 5 years for the rest of his life as children who have gone through chemotherapy are more likely to develop heart problems.

It's a lot to get your head around, be kind to yourself and give yourself time. I'm so happy that it was benign, that's wonderful news.

I think we all breathed a sigh of relief reading your update! I am so pleased that it’s benign and you are home.

I know there are battles ahead, but right now the biggest one is won. Breathe, take a moment and look after yourself x

So glad you are home OP and that the tumour was benign but I'm sorry to hear that it's going to keep coming back. 💐 Definitely sounds like it's worth putting in a complaint in about the doctor.

I’m so relieved for you all.
Your toddler will be more settled now you’re at home, and when you can, I would arrange some nursery time as it really helps tire them out.
In the meantime, do anything that makes life easier. Screen time doesn’t matter in the scheme of things.

I’m so glad you are making a complaint about the original doctor. It is more than justified and may save another child’s life.

Aww this is amazing news, glad you are home too, thank you for updating us throughout. X

What amazing news! And what an amazing mum. He’s only in this positive situation now as you pushed to make it happen. You are his guardian angel. xx

You are home. Your own pillows !

You must all be stunned and in shock. Please take things mentally gently. There's alot to process. Therapy sounds like a very decent idea.

So glad you are all home together

You are one amazing mum your children are lucky to have you, so pleased that you are home.

I wish nothing but the best for your family going forward x

One piece of advice I had that I found very helpful in a similar situation was

Keep your head over your feet

its weird, but oddly helpful

sending a hug

Thank goodness you're home and the tumour is benign, even though it may return. My son's was benign and he had radiation to address recurrence. That has been successful thankfully, but still lots to deal with. This is all very traumatic. To be honest my GP kindly offered access to therapy but I opted for anti-depressants instead. Which helped a lot.

Try not to think about the long term, it can be overwhelming. Take it one day and one step at a time. You have him home with you, that's wonderful.

So so pleased to hear it’s benign and that you’re all home together. I’m sure finding a new normal
will be a challenge but you’ll all rise to it like you’ve all done so far. Sending love!

I’m so happy to hear this update and am sending lots of positive thoughts your way.

This is such incredible news OP.
Your son’s body is incredible. It functioned for so long, so well in spite of this horrible tumour, and the recovery journey he has been on over the last 2 weeks I hope gives you hope that in time, the other parts of his recovery will follow.

If your husband gets sick pay, and needs more time to process everything, do get him to sign off with stress. You’ve been through more in the last few weeks than many experience in a lifetime. It’s ok to take a minute and process everything. Lots of love, hope and positivity for continued improvements for your DS xx

Happy to read your update and so glad you’re home!
Take one day at a time, you’ve all been through so much.

I would definitely go down the route of a complaint against the gp. I know they cannot know everything but it seemed like they really fobbed you off.

I’m so glad he’s home, things are always more comfortable at home. I know your lives have imploded and the last few weeks will feel a blur when you’ve been running on adrenaline. We had similar but different senario when ds fell ill with meningitis which has caused brain damage. Lives changed overnight. Important things- look after yourself, arrange some therapy cuz when the dust settles it can hit you like a tonne of bricks. Also get a dla claim in, it takes ages but when it comes through it helps with all the costs of appointments etc. it also will trigger the school to help with plans they need to put in place or even for them to access funding.

OP, just coming on here to say my friend had a benign tumor 10 years ago and nothing has grown back yet. It might not grow back 🙏🏻 Thank God it was benign. Thinking of you and sending you lots of strength!

So pleased to hear your latest update and that you are now back home together ❤ Please take care of yourselves & accept any help you can, you've been through a huge ordeal in a short amount of time which would knock anyone for six xx

I am so pleased, that's brilliant news, OP. Xx

so glad your DS is in recovery and back home with you. Take care ❤️

Another one having a little cry of relief for you. 🥰🥰OP🥰🥰. You have been through so much and will continue to do so but it's incredibly good news it's benign. And wonderful (though I bet quite scary) that you are home. Sending every bit of love to you and your amazing boy.

So pleased to hear your update. Hospitals are so strange - one minute you’re there and feel like you’re never getting out - and the next you’re out and home. I hope you get plenty of opportunity to catch up on sleep over the next few days. Take care.

so relieved to read your updates...just at work so can't write loads but wanted to point you in the direction of these charities that might be helpful in terms of community in future and for your son's hospital apts: https://www.starlight.org.uk/ and https://www.thebraintumourcharity.org/