If your child is newly diagnosed use this board to ask questions and connect with other parents.
Why are ther no coments in any of the four sections am I doing something wrong, or are these forums VERY unpopular?
my daughter is newly diagnosed so i came on here to talk to someone but it appears no one discusses it as i cant find any forums on it
We discussed the use of forums such as this at our support group recently and several of us found them difficult to engage with in the early stages.Some of the stories were heart-breaking and not really what you wanted to hear. This is the first time I have been back here for three years and only now that we are nearing the end of treatment do I feel that I a) can cope with the stories and b) feel that I can offer any support via this forum.
Do keep trying - just writing down what you feel is helpful even if no-one replies.There's always someone at the hospital (do you have a CLIC nurse or social worker?) if you really need to talk.
I hope that by now you are coping better. We are always amazed at how quickly you become an expert and just get on with things. Easy to say now, I know, but somehow you do.
Hello to all those who access this.
I am a mum of a 16 year old soon to be 17 on the 23rd of this month.
My daughter was diagnosed with A.L.L. at the age of 6.
We had some difficult times but she has never looked back. She has applied to University to study Law this September.
We always took one day at a time, otherwise it was hard to cope.
I know how fortunate we were.
Always keep hope x
My grandson has been diagnosed with NHL this week and we've been told that the prognosis is very good but I'm finding it very difficult to deal with at the moment as everything seems to have happened so quickly and he appears to be so well!
If they say the prognosis is good, hold that thought close. They wouldn't say it if they didn't mean it. The fact that he seems so well should be a good sign. When our son was diagnosed with ALL his consultant told us after 14 days that he thought things were looking good.That really helped me cope with his 3 years of treatment. I know you will be worried but you need to be practical and there for your own child as well as your grandson. Your own child has enough to worry about without worrying about you being worried, too, so please try to be guided by them. If they accept the diagnosis, please try to do the same. Family support is so vital but there needs to be a balance. We were expected to give daily reports when we really just wanted to deal with it in our own way. In the end we had to say something as grandparents were fearing the worst instead of listening to what we were saying. You are in shock at the moment but once you see how well children cope with it all, you will be fine. Take care.
Donna I am so sorry to hear about your grandson's diagnosis.
Please remember that modern day treatment is very good. All will be done.
Stay positive. Don't think too far ahead. I wish him Well.
Give yourself time and get involved with the practical things that need doing if you are able to.
My wonderful mother in law used to visit and play board games with my daughter to give me and my husband time to chat. She also helped care for my older daughter who was eight.
A very practical thing to do is to offer to speak to other family members and keep them up to date.
My own mother has never liked hospitals, never visited and that was fine to. Everyone is different and how they handle things is different to. There is no right or wrong way.
Just one day at a time. x
Thank you Jane W and oneday@atime for your reassuring comments. I am now feeling much more positive with all the further information I have received from both the doctors, nurses and my son! We have had everything explained and I can now look to the future! It's not going to be easy sometimes but I can see that with a positive attitude we will get through this as a family. Many thanks once again x
Hello All, I agree with lovingmum, what is going on with these forums, they seem useless, no-one is on here, I really thought they would be a source of advise and support for each other but it seems no one uses them. Disappointing :-(
Hi Alice79. It is a shame that more people don't use a forum like this but they do need to be ready to do so. It might help to write about what you would like from the forum and people will then know whether they feel that they can reply and be helpful. Lots of people are involved in local support groups so don't feel that they need this forum. Is there one near you? A few of us set up our own, with the help of our CLIC nurse, and that has been helpful, although not everyone attends. Some people just like to get on with it first then join in when they feel strong enough. (That seems to defeat the object but seems to be how it works!) I'm happy to help if I can - post a comment and let's see what happens. Take care. Jane.
My son was diagnosed, over the phone at work, last week with Hodgkin's Lymphoma. He was desperately upset at the time and apologised to me for being ill. Now he is so laid back and dealing with it all very well. He is planning his health with supplements, healthy eating etc.
I on the other hand am falling to pieces. I've just finished being carer to my mum, I am currently a full time carer to my youngest son with spina bifada and special and complicated needs. I am exhausted and fraught with worry.
He has been told that at 23, no symptoms other than a lump on his neck, now removed, that things are positive with treatment. He is waiting for scans etc and has to start chemo. We are four hours apart and I am driving up and down to him to be there for him. I saw the consultant with him. He says he hasn't taken the diagnosis in.
I feel terribly angry that this has happened. As a family we have all been thru so much together..there are five sons, no dad. I am trying to be upbeat and positive, but I am getting upset all the time which can't help him really. I don't know anyone in my area, and have no friends. Being a carer is a very lonely life and unfortunately I am left on my own with my thoughts a lot.
Looking for some encouragement really. Sorry I'm so miserable today!!
Back in December is when my daughters journey began. 5 months old and diagnosed with hydrocephalus and stage 3 posteria fossa ependymoma. My baby had a 4cm mass growing on the base of her brain stem. 10 weeks on she has had 10 anaesthetics, 8 various surgeries and is on her 3rd set of chemo. I'm so proud of her, she's been through so much and continues to smile, giggle and not let the pain she's in affect her.
Her big sister is missing us terribly, at 3 years of age, until baby's diagnosis she's never been away from me for this long, and has never spent an night apart from her baby sister. I'm extremely proud of her and she's having to deal with so much more than a preschooler should have to cope with.
I get angry and want to cry every day, but I have to stay strong for my girls! We've a long road ahead of us be we're going to travel it together.