New to the group

Hi Ac87 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

If you don't get any replies here, it might be an idea to also post in the kidney cancer group, which I can see you've joined, as you may find people with the same type of cancer as your son there. 

While you're waiting for replies, it would be great if you could put something about your son's diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi Ac87, I'm so sorry you find yourself here. My adult daughter has just finished two years of cancer treatment. She's single so I've been her support. It's been very tough but has hopefully been successful.

I have no experience of Wilms tumour but do know that the medical team will be skilled, experienced and will want the very best for your little boy. You have to trust them. This is the toughest time, when it's all so new. I know - I was beyond desperate. Once a treatment plan is in place and starts, you will cope. However tough it is, you will know it's fighting this horrible disease.

Do keep talking to the medical staff, CNS nurses are wonderful. Other parents will also be a good support. Keep posting here.

Sending you love, strength and a big hug. xxx

Hi Ac87 , my 2.5year old has been diagnosed with Wilms tumour early December. How is your little one getting on? I noticed you first posted 9 months ago, hoping all OK now? We are a few weeks out from surgery to remove her tumour and kidney so any info you're able to share would be greatly appreciated. Thank you

Hi my son is doing good thank you, he is not at the end of his journey yet. Unfortunately his cancer was more advanced his tumour came back as a stage 3 but we then found out it had spread to his lungs. He has had to undergo more intensive chemotherapy and radiotherapy. This week his scans have shown the treatment has worked and there is no cancer on his lungs. He has 4 more treatments left then he will finish. Have they staged the tumour yet? It isnt an easy Journey but im sure your little one has already shown you what a fighter she is. My son is my hero. There are loads of charities avaliable so take as much support as you can they do help you through. 

Are you in the UK? Had they seen the spread in the pre-surgery scans or did they find this out post surgery? I'm sorry you're having to go through but pleased to hear that it's gone from his lungs. We don't know the staging yet - will only know once it's out of her. Her tumour is 11.6cm almost spherical, when I saw the CT scan I couldn't believe it took up her entire side of her body.  She has been absolutely amazing, she refers to her Hickman line as her wiggly and likes to keep it safe in her little bag. We're finding bath times a challenge and she is very guarded at the moment when she has no top on. Does your son have a Hickman line? Any tips for bath times? We've been made aware of Young Lives Vs Cancer. Have you found any ones that are particularly helpful? Thank you for responding, we're still very much in shock but are so grateful the NHS has moved really quickly.

Yes i am in the UK my son is treated at alder hey. They knew the spots where there before surgery but they where very small so they thought it was just left over from an infection. It was the mri just before surgery that showed they had changed shape so they had to investigate further. He has a central line i think it is a Hickman line thats just what they have always said its called to us. Bathtimes can be challenging coz obviously you know they can only have a shallow bath. My son didnt like it at first alot of the time I had to give him a sink wash. He is use to it now n is really careful not to get it wet. The bit before surgery is the worst as its alot of unknown but once its out they can stage it and they will give you a treatment plan. Young lives vs cancer has been a great support it depends on what other charities are in your area but you will get to know them. The health visitors have been good aswell they sorted me out with a pram because my son was getting to big for the one we had. That came from another charity. You will get to know parents in the hospital and hear their stories. You are not alone with this. 

Hi Ac87 sorry for delay in coming back to you. Hope you're doing OK? Thanks for your reply, I think we need to persevere with the bath times. We have had our reassessment scans this week and hoping surgery still goes ahead next week. Such an anxious time. Finding positivity that things get better and easier post surgery. Sending well wishes your way