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Remembering Ruby Lana White: May 2, 2019 ~ February 9, 2022

Thank you to Ruby's mom, Debra, for sharing her journey with us.

     Ruby was the most amazing, beautiful little girl. We had 19 perfect months with her before totally out of the blue she had a seizure and became very ill. After a month in and out of the hospital, she was finally diagnosed on New Year’s Eve 2020 with a brain tumor that required immediate emergency surgery. After a long 12-hour surgery and an agonizing wait, we got the news it had gone well and 70% of the tumor had been removed. She recovered well from the surgery, but we soon got the earth-shattering news that it was one of the most aggressive pediatric brain tumors called ATRT. The prognosis terrified us, but we were going to fight this with everything we had.

     She had her Hickman line and Omaya inserted with chemo starting shortly after. She coped so well and was an incredible warrior. After every infusion she bounced back and would be chasing her big brother around the garden. After she completed her high dose cycle, we thought we had beaten it. She was so happy and had no symptoms.

     Sadly, another MRI showed a new tumor in a new location, Ruby went in for a second brain surgery to remove this new site, unfortunately we did not know she would never be the same again. The surgery left her very disabled, and she was never to walk again. She fought back to us every day and learned to talk and crawl again.

     Even through this, she was such a happy little girl. She loved being with her family on our farm, and her favorite time every day was feeding all the animals.

     We kept going with Ruby’s treatments. We tried Alisertib and a wide range of further chemo treatments. In total, she had 17 different drugs. But we were destroyed again after her October 21 scan showed the tumor that had been removed in August had already grown back to the same size, and no treatments were having any effect.

     There was no more the NHS could do and palliative care was started. We did not want to believe this and searched the world for any options. We started to put a plan in place to fund traveling to Germany in January for proton beam therapy. We had an amazing family Christmas, that we are so grateful for, but sadly Ruby started deteriorating in January. We were out of time. She was rushed into hospital yet again for an emergency shunt to try and give us a few more weeks, but it was not to be. Our beautiful Ruby Roo took her last breath in our arms on the morning of 9th February, our hearts are forever broken and we miss her so much.

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