My oldest, my 18 year son was complaining about headaches for a week. We took him to doctor on Saturday and by the evening we had an MRI of large brain lesions causing pressure in his cerebellum and back of his skull. We were shocked and floored. Just tried to keep it together until we had more conclusive info. His health took a sudden nosedive that Sunday evening with severe vomiting, fatigue and head pain. We live in China so went to a famous local hospital but treated like 1 in a billion. Then went to a small international hospital and they saw it as an emergency and he had surgery to remove the lesions. They said they would send it off and we would know whether it was malignant or not in 5 days. They stopped the surgery midway to tell us they suspected grade 4 glioma. Our world crashed. They were able to completely remove the lesions and he is back in the room recovering with us after a night in ICU.
Whats next?
They said wait until his wound heals before radiation. Is there anything I should do right now other positive vibes and loving on him. What else? Supplements? He doesn't really want to eat yet though he says he has an appetite. He's very thirsty.
What do I do? What do I ask? How do I get my family through this?
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Sjdhunt
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Hello, I am so sorry to hear about your son’s very recent diagnosis and appreciate that this must be a difficult and overwhelming time for the whole family. Please do reach out to our children and families team on: childrenandfamilies@thebraintumourcharity.org - they are there to support you and potentially signpost to further information. We also have a parents Facebook support group which you may want to join, to connect with other parents who understand what you are going through This is an international group with members from all over the world: facebook.com/groups/8201493...
As you are based in China, it may also be worth reaching out to local organisations such as the Otto Wong Brain Tumour Centre: surgery.cuhk.edu.hk/btc/#, who may be able to advise and support you too. I hope this helps. Please do let me know if you have further questions. Warmest wishes, the Support Team.
Additionally, with regards to supplements/complimentary therapies, as with any new treatment or therapy, we always advise talking to the medical team before making a decision on what to progress with. Deciding on which complementary/alternative therapy to use is a very personal decision and what works for one person may not be helpful for someone else. Some people do find that the right therapy helps them to cope with symptoms and side-effects.
Information on complementary/alternative treatments:
We do have some information on complimentary therapies, which can be used alongside conventional treatments: thebraintumourcharity.org/b...
I’m so sorry your son and family are going thru this. My husband was dx with a Gr 4 glioblastoma in Feb. His was right temporal and had craniotomy the next morning. He had radiation and chemo. They have a clinical study now called SurVax please look into that. I’m praying for all of you.
I’m with you. I’m also so scared and lost. My husband just had surgery and I don’t know what is in my future. You are not alone sending you positive energy
thank you to all the posts. He has healed really really well and came home 7 days post surgery. He starts radiotherapy / Chemo on January 4th. They are pushing for inpatient during the weekdays for 4-6 weeks and my son's not keen on that but I've told him think of it like a really nice college dorm room without the school work. We just got some good news that he should still be able to graduate on time even if he takes the 2 month break. He met with his guidance counselor yesterday and they completed his college applications. He'll have to take a gap year or semester while he goes through treatment here in China with me but he's so happy that he can finish up with his friends. So now he can do the normal teenager thing of waiting for college acceptable letters to come. And we can do the normal teenage parents thing of freaking out over college tuition. Lol. Feels good to joke
I am very sorry to hear of your Son at such a young age. I am glad that they managed to remove in surgery. Try and keep him positive. My world also crashed last year 2022. I try to keep healthy. Daily walks, I have kefir and probiotic drink with blueberries pumpkin seeds, dates 4 cloves blended with tumeric, cinnamon spices. Cavalo, brocoli I will blend this is morning breakfast.. I have tried cutting out sugary things. Rice,pasta, potatoes. I drink soursop tea, and moringa tea. So far, I have just finished16 months of chemo. I am good. 80% Tumur was taken out. It did grow to 1.5cm, but had been stable. So I think when hes fully recoved from sugery. Try and make things ad normal ad possible. Good luck with treatment. If you have you tube watch Barabara O'Neil home remedies. I go to bed with Castor oil pad in my wholly had.
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