Hi I’m Heidi! I’m 10 I found my avm this year. I hope to get to find some supporters!
My mom is going to die in about 3 yrs From breast cancer. I have to have radiation to remove my Avm. I’m excited and terrified to start 6th grade. Have a good day!!
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Hello Heidi @HeidiP
Welcome to the group. Sounds like you are going to gamma knife for AVM.
I am so sorry to hear about your mom and about your AVM.
I am in San Francisco and have my treatment done at Stanford.
Angela
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Wow, Heidi, you’ve got a lot going on.
As Angela says, it sounds like you might have gamma knife radiotherapy or you might have proton beam radiotherapy to treat your AVM, neither of which are scary by my reckoning. However, whatever you are concerned about, feel free to ask. That’s what we are here for.
You’re definitely not the youngest person to be going through this, though I think you’re the youngest person who has logged on to the site at the moment (we have parents of younger people than you; and we have other people here who are older now who discovered their AVM at about the same age as you).
6th grade is just fine. I assume it is the year in which you move up a school? My son moved school at what in the UK we call year 6. But it is really just a bigger school. You’ll still have friends that move up with you and more people to meet from other schools. He is now in the top year of the school, about to start his final exams and he has had a really good time through that school.
Anything we can help with, just let us know.
Very best wishes
Richard
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Hi Heidi, and welcome. You do have a lot going on for sure. How was your AVM found? I had gamma knife for my AVM in November of 2016, and has been successful.
Very sorry to hear about your mom. Take Care, John.
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Hello! Thank you for supporting me!!!
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Thank you!!
Just letting you no was also 10 when I had my AVM discovered. Keep strong and let all of us no how things are going.
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Hi Heidi, great to meet you, and I support you! 6th grade is an exciting time, I hope you learn a lot and make lots of friends. So sorry for what both you and your mother are going through. Looking forward to hearing updates from you!
Best,
Jay
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Thank you!!! I will keep you updated!!!
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Hi Heidi,
I am sorry to hear about your mum (fingers crossed she will recover. My mum had a very aggresive cancer and I was told that she would die but she is still living a happy life 20 years later, you never really know what could happen x).
When I was told that I had an AVM it was spooky (especially because I googled it, don’t listten to google!!! we are all diffrent and the Doctors know so much more now about making you better). You are lucky that you can have radiation, it is exciting, you will meet some great Dr’s and Nurses, you will learn so much about all the cool things they use and how it works. You are also speeking/texting people from all over the world, so cool, I am in Australia. I was spooked too but the more I learnt I realised that I was also lucky. I am all better now and teaching nursing you never know maybe one day you will be a Dr or nurse.
Big hugs to you and your mum.
Katusha
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Thank you! I was scared to when I found I found out I had an AVM. But I’m very brave and confident now that I’ve had some angiograms and brain MRI’s. I will keep you updated!!! - Love Heidi
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Heidi, you will be absolutely fine. Take it as a fun ride, It will make you stronger eventually. My mother suffered from breast cancer at the age of 40, now she is doing great. I was diagnosed with a spinal avm 15 months ago, at a very advanced stage, spent months in a wheel chair, now I am better than ever.
Believe my dear, you will beat this, it is just a bad patch 
You are in my prayers
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HI Heidi. I’m Lulu and I’m in the UK. I just wanted to give you a very warm welcome and let you know we’re all here to support you whenever you may need it. We rely on each other and are rarely disappointed. I wish you all the best with your new grade at school and your AVM treatment. Also all the best for your Mom. You will both be in my thoughts x
At Stanford huh ! So our were a lucky one to have had Dr. Steinberg right ?
@mselaineious1 I have met dr Steinberg but only needed an embolism so Dr Marks who is the founder and head of the dept did it.
Dr Steinberg is the one doing the surgeries for stem cells in the brain so who knows maybe one day he will work on me.
PRAYERS for YOU, Heidi!
Thank goodness you came to this site here, & I bet you will find good answers that you might need as the future moves on.
LIsa
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Hi Heidi!
It is great that found this website. Feel free to ask whatever goes through your mind there is !always! Someone that can help you.
I hope a miracle happens and you just as your mum become healthy!
Best wishes
Jonathan
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Hi Heidi,
I just wanted to send you lots of love and I hope you are coping OK. I’m so sorry to hear about your mum too. You sound like a very brave girl. I was terrified when I found out I had an AVM but 18months after my gamma knife and its nearly gone now. You will get through this just fine, just try to stay positive and take things easy. Gillx
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Hi Heidi:
Welcome to our group! I’m so happy you found us. As you can see from all your replies, we care and we share. We are full of information that we can pass along to you. No question is too hard for us. Reach out when and if you need to. I’ll keep you and your Mom in my heart and in my prayers. You are one brave 10-year old!! Wishing you all the best.
Sharon D…
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Heidi,
I have no idea why I missed this when you posted this, but let me welcome you to a group of quiet warriors.
We are quiet - because we aren’t all in the same place and aren’t undergoing the same procedures… and we don’t scream and holler and throw protests and drive cars into crowds and other wild things like that.
But we are warriors. Every single person you will meet on this group is a warrior. We’re all fighting the three lettered monster and what it is doing to us. We’re fighting daily battling symptoms and side effects, we’re fighting misconceptions - you don’t look sick?
And at the same time, we are the peace keeping force. We try to walk the line between getting our circle, our friends, our family to understand even just a little bit about what our lives are like with constant headaches, with a voice that won’t let me talk in a loud room, with…
And that line is at the top of a sand dune and the sand falls very steeply down both sides. One side is bitterness, despair, depression and a whole host of other problems. The other side is family and friends and the pain that comes from losing some of them and having others say things that make it worse. Things aren’t the same because you aren’t the same.
And that’s hard. And it makes me sad that I have to go through it at the age of 54, let alone at your age. I have four daughters who are older than you and it hurts to think about what you’re going through.
I wasn’t 10 when my AVM was first found, I was 13. And that was way back in the stone ages so no one knew what they were.
I lost my dad 18 months ago to cancer. He had cancer 5 times. Between his cancer and my major fights with the AVM 4 times (and countless small skirmishes, we’ve been through a lot of medical stuff together). Every day, I find myself wishing my Dad was still around to talk all of this over with.
I’m going to end with some advice that I wish 54 year old me had been around to tell 13 year me (in random order):
- If you don’t already have a counselor, get one. Tell your parents that you need someone outside the family to talk to. You need someone who is trained in helping kids (aka anyone under 21) with major trauma - because you have two major traumas going on at once. I have two also (actually three - but that’s a different story)
-Make a bucket list with your Mom. The top 5 or 10 or 20 things you want to do with her. I say that assuming that she’s in good enough health to do some of those things. - Tell her you love her, every day. Show it every day, even in some small way. You won’t regret it.
- Don’t let anyone else besides for your parents and your counselor tell you that it’s not okay to be sad.
- Read the book of Job in the Bible - even for non-Christians, Job had a very valuable lesson. Job got hit with all kinds of trauma all at once. He lost his entire family, all of his wealth… In Israel in his time, if you were in mourning, you sat on a pile of ashes and sprinkled ashes all over yourself. Some of Jobs friends came and they didn’t say a word. Let me repeat that THEY DIDN’T SAY A WORD for the first 7 days. They sat with their friend in his pain.
Do that for your mom. If people ask, “Is there anything we can do?” Tell them that what your mom needs is company. What you need are a few close friends who you can talk with but also be quiet with. When you find them, hang on t them because they are worth their weight in gold.
And then they started talking and 34$#%#%@#$ the whole thing up.
One last question - do you know what “type” of people like middle school?
TEACHERS!!!
Everyone else hates it. They might not say it but they do. You’ve got a whole bunch of tweenagers and teenagers all trying to figure out who they are, what they believe, what they want and whether Jeffrey in the third row likes them or not. It happens, you’ll make it. If all 5 of my kids could make it, I know you can as well.
Heidi - it’s been a pleasure rambling on (I can’t say talking with you yet) and if you benefit even 10% as much as I have from my friends who I’ve never met, then you will do well.
Richard will quite often sign off with “cheers” which makes me wish I could go visit an English pub. I think this time, I’m going to borrow a farewell from another nationality. I’ve been reading a number of books written (biographies and also fictional accounts) of the Jews and some of the amazing things that they did in some horrible situations.
And so I leave you with this:
Shalom, my friend. In spite of the trials you have, may God grant you peace.
TJ
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