2.5 year old has rare kidney cancer

[123jr]

Hello I’m new to this my toddler was diagnosed with kidney cancer in November it was believed to be a wilms tumour but actually turned out to be a rare cancer called clear cell sarcoma of the kidney can’t find many stories on google about people who have gone through this and would like to know if anyone else is going through this he’s my only child and I’m so scared would be nice to talk to people going through the same thing

Sorry, no helpful advice, but just wanted to say I’m so sorry you and your son are going through this, I can’t imagine how tough it is. I wish you all the best with his treatment and hope he beats the cancer.
all the best OP 💐

I'm sorry to hear about your little one's diagnosis.
No direct experience, but I suggest searching for groups on FaceBook just using the FB search function. My son had a very rare tumour and there's an international group on FB which has been really helpful, with other parents and patients sharing their experiences. x

Thank you for the kind messages I will try Facebook thank you x

Sending huge hugs, I have kidney experience with my son who had complex issues as a baby but not cancer specifically. happy to listen and sending gentle hugs. have they caught it early do you know? How is your son feeling xx

Aww is your son ok now or ongoing issues ? And unfortunately the cancer had spread he had a tiny met on his lung now finding out it’s not a wilms he needs bone and brain scans to check the cancer hasn’t spread there so just praying now that it hasn’t. He’s doing really well now he had chemo for 6 weeks and December was a night mare in and out of the hospital with temp , RSV , flu and no immune system he had his operation to remove his kidney with the tumor and the little met on his lung and recovered amazing from that up to now if it’s not spread to bones and brain he’s soon to start intense chemo for 9 months and radio therapy. Thank you for messaging just feels really nice to talk about it driving myself crazy at home x

Oh that is just so much you’ve both been through 😢
here to listen/ hand hold/ talk about anything you want as sitting alone worrying in the small hours is the loneliest place in the world. Your son sounds immensely brave to have got through all this already with you by his side and December sounds unbearable. Will keep everything crossed it’s not spread to brain or bones, and it’s good they removed the kidney and lung spot and he’s recovered well from that, that shows just how strong he is as they’re such big surgeries.
my son is doing ok thank you, they’re trying to figure out what’s causing some odd bladder issues and pain. You just want them to be ok as a mama don’t you xx

It’s just been a night mare the hospital and staff are amazing but it’s just so hard to accept just really hope to have some good news this time. Glad your son is ok and hope they get to the bottom of the issues! Thank you so much for your lovely message x

Im so so sorry. My son was diagnosed with stage 4 Wilms (lung mets) aged 4. I know it’s not the same as what your poor little baby is going through now but I do have some idea of how you are feeling right now. The waiting for a full diagnosis and treatment plan is absolutely agonising, I promise it is just that little bit easier when you know what/how you are dealing with. Please message me on here or Pm if you want to chat or offload xx

It’s such a cruel world I really hope your sons treatment goes the best it can and he’s better soon. It’s awful the waiting and not knowing kills me every time and each time we see the doctor I try my best to go in with a positive head but every time another bit of my heart gets ripped away. Thank you so much and feel free to message me to if you need to talk x

I'm so sorry to hear that you're going through this with your little one @123jr it is so terribly unfair and so worrying. Like @AskforJanice my 7 yo DS was diagnosed with stage 4 Wilms with lung metastasis last summer, and is coming to the end of almost a year of treatment this month.
It is a long road, it feels very lonely but there is warmth and comfort there. I received a lot of support from the team at Young Lives vs Cancer, on both an emotional and practical level. I'm also very happy to chat so feel free to PM.
Wishing you all the very best xx

You are so kind in the midst of your living nightmare just now 💔I so hope that things will get easier once treatments is underway and you have a plan, the not knowing and feeling scared is unbearable. Here anytime for you if you want to talk, don’t ever sit alone worrying, we are here for you xx

I’m so sorry your boy has been through this too @Taranta. Like you say, it’s a long very hard road, but there is light at the end of the tunnel. Just to let you know, my boy celebrated his 14th birthday yesterday😊x

@AskforJanice that's brilliant news and happy birthday to your boy :-). I'm don't know if I will be able to breathe properly for a good few years yet. What I do know however, is that children are incredibly resilient, they can cope with so much, it's humbling x

Thankyou to all of you for your kind messages and listening to me haha! I hope your son had a lovely birthday @AskforJanice you’ve all sent really positive and kind replies and gave me abit of hope back xx