Need a handhold - multiple palpabale lymph nodes and weight loss toddler

[Wobblyheart]

I am crumbling. My 2.5yo have had vague symptoms for a few months now but having been to a private paed was assured he looks well.

Anyway... he had hurt his leg a week ago on trampoline and A&E thought it was a fracture, put him on a cast. Then ortho team reviewed him and confirmed no fracture and cast came off on third day. Since then he had 2 days of unknown viral thing which left him spiking 39-40.4. Took to a&e. They only did very basic check and sent us home saying it's viral.

However we went to GP today as his previous vague symptoms have been persisting and increasing in frequency (mainly eye pains / Discomfort) and they noted several palpable lymphnodes, potentially reactive in various locations. They are now asking our referral to a pead (we have one that has been made a month agp) to be regraded as urgent and to ask for bloods( including liver tests)... they asked us if he lost weight and I said no as he was weighed in a&e and it was fine (albeit he was fully dressed and holding 2 toys!). But I just rechecked him at home and he went down from 13.7kg on 20 June to just 13.1kg today. And i we didn't tell that to the GP. However this was after a week of poor appetite due to his leg and then fever...

On top of that... I just saw on Google that palpable lymphnodes just above the collar bone almost always mean malignancy and I definitely feel them there. There are not big there but palpable and I understand they shouldn't be palpable in healthy children.

I don't know how to wait till the appointment at the hospital. I am a mess. I am supposed to be strong and parent my child but I am teary and definitely not as a fun mum as I normally am.

I am just hoping for a handhold and maybe for people to tell me that they had something similar and it wasn't malignancy.

I am also going through a miscarrying right now and my emotions are through the roof.
A very worried mum who can't deal with the wait.

Wishing you luck for Wednesday x

Hopefully you get some answers then (hugs)

No experience of this, but I am sending hugs your way and hoping everything is OK.

Such great and difficult news, all at once. It’s so incredibly hard for you, OP. But Wednesday will give you clarity and a pathway forward. ❤️

Yeah, I’d have offered a RAC slot for that. Not worrying enough sounding to bring straight up to the ward, but enough anxiety to not want to leave it potentially months for a routine appointment. Sounds like a good way to get answers.

Wishing you all the best @Wobblyheart - I hope you get answers and all is well with your darling boy. Keep strong (easier said than done), but once you know what monster (if any) you are fighting, you will have a plan and the support you need x

It's the hardest thing. I know there are enough red flags here to warrant this but when your fears get validated it just..... I hope there will be a benign explanation to this all.

Thank you ❤️

Having answers will help, I promise. Not knowing is so much worse.

Either way, you will soon know. Hopefully there is a benign answer but if not, cancer treatments have come so far over recent years and there is so, so much to be hopeful about.

Just wanted to say I can feel your pain coming off the pages. I’ve been there and still go there from time to time with spiralling worry. One technique is to write down what you’re worried about and what is fact that you know to be true. So on here already you’ve several experiences of similar symptoms being harmless
For what it’s worth my son went pale and had pale inside his eyes at various points over 6 month period , sweats and after a virus actually lost the ability to walk for a couple of weeks - also with lymph nodes up.
He would often have random fever - usually I then found a new tooth.

He was often soaked through with sweat and dried out by morning
his paleness episodes were always followed by a big growth spurt
His temporary lameness was post viral arthritis and he was running around again shortly afterwards but I was in bits about this
It is good that you’re going Wednesday. They will and do see children as quick as they can. Maybe there was a cancellation. Maybe there was just a space free because someone cancelled. It happens. It’s not necessarily that they’re doing all they can to fit you in because they’re worried but because they want to help.
it’s so hard especially when you have a partner who is of the mind that there’s no point worrying when you’re sick to your stomach and can hear your heart beating.
I get it. You need to break down the time and do little things for distraction. Wash up, read a book even if only 5 pages. Listen to a podcast. Do a breath work exercise. Listen to a meditation. You can’t run on extreme adrenaline so have ask Chat GPT to give you some distraction methods. I found it very helpful especially in the night when I was worrying and it’s never more lonely
You are stronger than you think. It’s often the things we never think of that are what we have to deal with. Allow a bit of worrying time then do something else. You will be ok !

I'll be thinking about you on Wednesday. Maybe your phone call prompted them to look at the letter and give you a quick appointment so you wouldn't keep calling them, rather than it being mega urgent.

But that's the way to get things done, keep badgering people. Be the squeakiest wheel. You're doing a great job advocating for your son despite your anxieties. He's lucky to have you.

Write down everything you want to say before your appointment and take a notebook to take notes so you don't forget anything

And will you keep your Thursday scan appointment? Maybe you could cancel that now then you won't have the worry of getting there and back. The journey sounded stressful.

Hi OP I have just found your thread. My daughter had palpable lymph nodes in her neck ,clavicle and groin when she was your son’s age . She was also drenched in sweat after being asleep for a while,every night .I was absolutely obcessed because she was also underweight.
As a nurse I was convinced she had every imaginable illness. So bloody scary and stressful.She had blood tests and scans ,all NAD .
Any way she is now a healthy adult with 2 children of her own. Sending positive vibes.Xx

I just wanted to say thank you to each and every one of you. I am so touched to have so many supportive messages. I am always in awe of the kindness people show to strangers here. You are all wonderful people.

Seeing your stories makes me feel some hope although I must admit I am feeling like I am standing on a cliff edge and someone will push me over tomorrow.

I am going to cancel the Thursday scan as we have the appt now.

I am hoping that maybe it was so quick since they took a whole week to actually open the letter so maybe there target is to be seen within 2 weeks of referral?

I'll be thinking of you tomorrow.

Just be prepared as well that before giving you any definite answers, they may want to do more tests first such as bloods, biopsy etc

You've got this, I promise.

Just to add, whilst we are all hoping it's good news, if it's not, you'll be stronger than you realise you can be.

I'm someone with a needle and vomit phobia. There was a time when my child was vomitting 20 times + a day when in hospital. Normally (and again since) I can retch at even the thought of vomit, but when it came to that crisis I didn't even flinch. Same with the needles.

Pack a bag for you both just in case, on Wednesday. I didn't because I didn't think anything was very wrong and was just being precautionary. I didn't go home for several months. I'm not saying to pack for that, but an overnight bag so you know you've got a toothbrush and clean pants is sensible. Same for your son. Pack your phone charger.

Hope it's all a false alarm!

I couldn't agree more.

I'm sure you heard it a lot too but when someone, usually a parent, said ''I wouldn't be able to do what you are doing'', ''I don't know how you can be so strong'' etc I always said that they would absolutely do the same thing because you have to, the alternative is hiding away from the world but that just isn't an option when your child has cancer. As much as you want to at times.

I didn't pack anything either, as far as I was concerned he had a tummy bug and had become a bit dehydrated, they even told me at first that we'd be home later that day or tomorrow. We ended up transferring to another hospital miles away from home and arriving with nothing but the clothes on our back at 4am, we also didn't go home for months.

Yes, I am totally aware of it. As it at the CAU I think they can do bloods right then and there. I understand there might be wait time for other tests and results.

I guess I am being naive but whilst i am fearing the worst I am still hoping they will just say it's nothing to worry about!

You definitely aren't being naive. In fact, that is probably the most likely situation. Most children they will see at these appointments won't have cancer.

Hoping for a ''It's nothing to worry about'' tomorrow.

@Wobblyheart thinking of you and your darling boy today. Praying that everything is benign and they are reassuring. Keep strong 🌷

We are at the hospital. They are not overly worried. He doesn't seem to have a true supraclavicular node, rather a low cervical node but I think I am going to check that again.

Had many nodes everywhere though and some of them matted together (which isn't good) but they said doesn't matter. It's the size and the feel they go by. They said he doesn't need ultrasound but are doing bloods now.

Seems to be good news. That's wonderful.

Hope the bloods went ok.

Everything crossed, with all of my love, OP. ❤️

Sending you lots of love, it is horrendous waiting for investigation/treatment for your kids.. Minutes feel like hours!

My son had the swollen lymph nodes, we were rushed to A&E and had lots of tests. He too had lost weight and was generally unwell with pains in his joints and chest.

After a few trips back and forwards to A&E he was diagnosed with glandular fever. He has made a full recovery.

I hope everything works out well for you... Always trust your gut and if you don't think the medical team are right, question them... No-one knows your child like you do xxx