Elaine Explains – Has it worked? What Happens Next?

Today we are officially one week away from Angel’s graduation; next Tuesday she will ring the bell to signify the end of her treatment, and we are all really excited for her.

However, I know that people at home, especially Angel’s friends from school, are anxious to know what this means, and what happens next!

I have broken this up in to frequently asked questions (thanks Warren!) and will do my best to explain this for you. If anyone is curious about Angel’s treatment, tumour, or time in America, just contact me and I’ll happily let you know what I can, if I don’t know the answer I’ll try my best to find out for you. 🙂

How many MRI scans has Angel had since she’s been in America?

Angel has had 9 MRI scans in total – 8 at the proton Clinic at 1 at Wolfsons children hospital with dye.

When is her last treatment?

Her last treatment will be next Tuesday (2nd September)

Is her final treatment stronger or longer than the others?

No, because everything has gone as expected, Angel’s treatment has been constant throughout. The few times she has been in the gantry for longer or shorter periods have been because of a machine error or because it took longer to change the precision of the snout etc.

Has she had radiotherapy?

Yes – Proton therapy is a type of external beam radiotherapy using ionizing radiation. (with a particle accelerator used to target tumours with a beam of protons, for more information about proton therapy check Elaine explains protons)

Has she had chemotherapy?

No. Angel has not received any chemotherapy in the U.K or America.

Does Angel still have a brain tumour?

Yes, Angel still has a brain tumour.

Has the proton beam therapy worked? Has it shrunk the tumour? Has having proton therapy got rid of her tumour? Has the proton beam hurt her at all?

No, no and no 🙂  The proton treatment has not shrunk or eliminated the tumour. However, although the tumour has not shrunk in size, it is now stable. Angel receiving proton beam therapy means that the radiation has broken up the DNA within the tumour cells. This inhibits their ability to reproduce (grow – which would make the tumour larger). Having proton beam therapy has not been easy for Angel, but she has not been in pain. She has lost quite a bit of hair and has a sore left eye but has not had any serious side effects. 

 

Does Angel have anything in her head?

Yes, back when she was in Alder Hey Childrens hospital, Angel had a cannula fitted in her head. This is a little tube, which can, if needed, enable doctors to drain fluid or gain data.
If you look at the photos I posted of her head – you can see a diagonal line from the top right – that is the cannula, and you can see how deep down it went to drain the cyst.

Edit: I just proof read this to Angel before posting, as I read ‘does Angel have anything in her head’, she replied: ‘yes, a brain tumour’. LOL.

Will Angel be different when she gets home?

I asked Doctor Danny this today, he said that in the months after the treatment Angel may experience extreme tiredness (as she currently doesn’t understand being tired at all, this will be a shock to her!) Profound exhaustion is common after treatment. She asked if she could do gymnastics, and from a radiotherapy point of view the answer is yes!! So she’s pretty pleased about that 🙂

What happens next?

When Angel returns to the U.K (as well as starting High School – wow!) she will need to have regular MRI scans, probably four times a year for the first two years. She will have to have various tests, including hormone, visual and neurocognitive testing at least until she finishes high school. The results of these will be sent back over to Dr. Danny and he will oversee her progress. Angel is welcome to come back to the Proton Centre for a check up.

 

And last but not least, my most favourite question(s) to date:

Can we please please please pretty please see some pictures of Angel having treatment/Angel in the mask again/ Angel on the table/of Angels brain/of the proton therapy/of the machine?

Okay okay, since you asked so nicely, here you go ❤

First up – this is the brass mold that is used during the treatment (protons can’t penetrate brass!) this is the shape of her tumour!

mould1 muchbetter

 

This is her head from the table!

brain1brain2

So, at this point she is pretty much lying in the machine like this:

viewfromafar

Here she is whizzing round on the table before her mask goes on:

smiley

And then this bad boy takes place:

 maskonmaskedhero

Then she goes for another little spin:

onthetable

At this point…. the proton machine starts turning around to get in to precisely the right place ready for the protons to hit the tumour. 

 

snout protonbeamprotonbeam

And then…. when she is finished and takes the mask of, she has a nice little reminder on her face like this:

What we like to call…. WAFFLE CHIN

 

waffleface

 

Elaine x

 

 

 

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8 thoughts on “Elaine Explains – Has it worked? What Happens Next?

  1. Thank you Elaine for explaining all that to us. Not long now Angel until you ring that bell you’ve been so brave. Looking forward to seeing you when you get home lots of love auntie Mel uncle Andy Abi Tom Jess auntie Doreen Uncle Bill uncle Fred and all the family xxxx

  2. Will be with you on Tuesday in our thoughts. Can’t wait till your home big hugs loves ya millions me lee and Freddie
    Xxxxxxxxxxxxxxxxxxxx

  3. Hi Angel. Have been keeping up with your blog. I really hope that you enjoy your bell ringing ceremony. I look forward to seeing it when you get home and I come and see you and your Mum. Have a great ceremony, safe flight and I will see you when you are home. Lots of love, Rachel from CLIC Sargent x

  4. Pingback: FAQ’s | Angel Gregson

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