Medulloblastoma

[TeamAH]

Hi everyone, my name is Anthea and my son was diagnosed with Medulloblastoma at age 3.5 in September 17. He is now nearly two years out of treatment and we are on watch and wait. I’m here anytime if anyone has any questions and am also keen to hear from anyone about how they are managing late effects and anything we can be doing to give our little guy the best life possible. Stay safe everyone x

[Wales1988]

Hi Anthea. I can only share my experience in the hope it helps someone like yourself essentially sharing my negative experiences hoping no one else has to go down the same path. My experience maybe helpful to you when your son is a lot older.

My mum wrapped me up in cotton wool from the age of 8 when the tumour was discovered and this cotton wool approach highlighted to me that I was different from all the other kids. I got bullied throughout the time I was at school because of my height. I was short due to the tumour stunting my growth and I take alot of medication so when I was at school I would have to leave class so I can have medication at reception and I had to pass water alot meaning many trips to the toilet.

My mum had the best intentions for me but her cotton wool approach was wrong. I wasn't educated that due to me being different is a recipe for being bullied at school. I wasn't taught to stand up for myself. I was never taught how to embrace being different as a positive thing. I see it as a negative being different which has made it very difficult to grow as a person.

I hope this helps you in some way 🙂 if you have any questions then feel free to ask.

[TeamAH in reply to Wales1988]

Thanks so much for sharing and for your honesty. As a parent you feel so helpless and just want to take it all away but I have slowly learnt that this is now a part of what makes up my son and he, like you can hold his high knowing that he is brave, resilient and strong. Something that some people take a whole lifetime to learn x

[Wales1988 in reply to TeamAH]

He is certainly a brave, resilient boy.

Having a website like this is a great thing because this kind of thing wasn't available in the nineties for my parents.

If you don't mind me asking what is a medulloblastoma? Thanks.

[TeamAH in reply to Wales1988]

Definitely agree, there’s comfort in the fact that people know what your family are going through and hopefully we can all help each other, even in some small way. Medulloblastoma is a high grade, malignant brain tumour. Treatment is brutal and leaves a lot of late effects unfortunately x

[Wales1988 in reply to TeamAH]

Just relating to the situation can be a huge help. What part of the UK are you from?

I'm really sorry to hear that. What a rough start. Yourself and your family must have had a tough time.

The tumour I had wasn't malignant but due to it being on the pituitary gland it's caused complications by removing the tumour. For me the tumour removal was just the start. I have a complex hormone disorder now where 5 hormones don't function so I have to take replacement medication multiple times a day.

[TeamAH in reply to Wales1988]

We are based in the South East. Our son has regular testing to ensure he is still growing as expected. It is expected that he will need to take growth hormones when he reaches puberty. I have a huge respect for all who are going through this, it’s a tough road.

[Wales1988 in reply to TeamAH]

I originally come from southeast. Southend in Essex but I lived in London for a few years and now live in Wales.

The main thing is your son is being monitored. It took years before they discovered the tumour in my head that was possibly present from birth, due to doctors not knowing what they were doing. It was caught just in time before my sight was taken.

Well take care and message me if you need to talk 🙂

[zukism]

Hi Anthea, hope you are keeping well.

I am a 28 year old survivor of a medullablastoma. I had the tumour at the age of 6, which was removed and then followed by intensive chemotherapy and radiotherapy and I am a firm believer that the positivity from parents, family, friends has helped me get through this.

The journey is not easy, but please keep strong and try to be as positive as you can be through these hard times, as a survivor at such a young age, this is what I remember the most.

Wishing you all the best and do not hesitate to ask if you have further questions.

[TeamAH in reply to zukism]

Thank you for sharing, I really appreciate it and it really helps to know how the person who has actually gone through it feels. As a parent you are a bystander but I will try my best to stay positive as I think you’re absolutely right. The way the people you look up to handle the situation, shows you how you need to. Thanks again, I will be sure to post if I have specific questions x

[Bella2468]

Hi my son was diagnosed with glioblastoma at 4 months his treatment plan last two years . He now been off treatment 8 years with no sign of it coming back which is really good my son does really well he has extra help in school and with this is doing really well. Unfortunately he suffers emotionally and in past year lots questions about what happened to him which me and doctors have answered as best we can for him . He knows I will answer any questions he ask as best I can and i just give him time when he need it also space when he needs it for my son he older sister has help alot with him she nearly 6 years older then him she sits reads with him which he likes. My son has amazing me how he came through it all .

[TeamAH in reply to Bella2468]

Thanks for sharing and great to hear your son is doing so well. I think this will definitely come up for us and our son as he gets older too. We have come to appreciate that he knows a lot more than we have given him credit for. They are truly amazing these kids. Every time we think that our son may not be able to do something, he proves us wrong. They show us what it is to be brave. Stay safe x

[Scarlett0H]

Please do join the successcharity.org conferences - this year's will be virtual (in November) and it is always an opportunity to meet the young people and their families and hear from those who have 'been through it' - each year (this will be the fourth) we have 4/5 young people speak and it is always the highlight and a great way to hear the honest voice of the young people themselves!

As Scott has mentioned, many young people (and their parents) talk of the balance between 'cossetting' and being allowed to develop independence and also the feeling of being alone after cure...and 'bullied' by their peers who don't understand

Its something we are trying to get a bigger handle on at successcharity.org and the films of previous conferences there might help you see the longer term strength and determination these young people have ! its very impressive . Do have a look at the website which is currently going through an overhaul and we will post details of the next conference!