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Adler has inoperable Metastasized Pilomyxoid Astrocytoma brain cancer. His brain has 2 spots that house 10 small tumors. He has a larger (primary) tumor in his cervical spine and his lower lumbar spine is thick with the same material in the tumors.
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6 years ago today Adler had emergency shunt surgery. Adler has a VP programable shunt set at 1.5 to drain the excess water from his brain to his abdomen where it’s expelled naturally from the body. It was set at 2.0 for a few years but changed because of constant headaches. Dr. Dipatri is his neurosurgeon. He also did both of Adlers biopsies. His lower lumbar biopsy that gave us Adlers diagnosis of Pilomyxoid Astrocytoma brain cancer. He also did the cervical spinal biopsy that confirmed the BRAF mutation of the tumor so Adler could be on a trial drug that targets that specific mutation. He has saved Adlers life three times essentially. But the shunt surgery literally did save him, not just give us the the direction in which to go for life saving treatment. He’s amazing. Adler calls him Aquaman. Fitting. He actually gave him and Aquaman action figure and it’s in the windowsill of his office. It all went so fast. From the MRI, to the docs coming in and showing us the devasting results to signing consent forms at 2am and the nurse preparing his head by 6am. Dr. Dipatri came in around 8 and soon enough Adler was in surgery. And that was just the beginning.
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6 years ago today Adler was dying. He was in agonizing pain treated for a misdiagnosis with heavy doses of steroids that made him chubby and ended up causing his adrenal insufficiency. I had been absolutely manic trying to find help for him. He was suffering from severe headaches and dizziness. He would vomit from it. And on this day he fainted, twice. I carried his limp body to the couch after he had already fainted once before and when he came to he thought he was going to puke so Aaron and I got him to the bathroom. He fainted again. I truly thought that was it. That whatever was going on with him was finally going to take him. When I got him to the couch he came to and immediately began to cry and said his head hurt. The frantic call to his doctor was already placed once before and I had called back. They said ER and we quickly got around to get him there. He didn’t want to go again. And neither did I. I took the picture then. We took him. They gave him IV morphine and fluids and said it was pain induced syncope. It wasn’t. No one checked his head. Either time we went to the ER. Had they, they would have seen what we ended up seeing late at night after a full brain and spine MRI at Lurie Children’s Hospital two days later. Adler had three times the normal amount of water on his brain. Adler had/has hydrocephalus. Adler was dying. His brain was absorbing the excess water and he was drowning in it. We took him to his doc the next morning and without hesitation and so much fear on our end he said “you have to get him to a children’s hospital and now, or the pain will consume him”. I cried. Aaron was visibility upset as was my mother who was with us. The nurses were crying on our way out. We picked Lurie Children’s Hospital in Chicago as it was closest and we didn’t want to go back to Riley as we felt they were not the place foe Adler. We were correct in our choice. Adler ended up having emergency shunt surgery to save his life. That was step one. Step two would be the treatment of all the tumors found in Adlers brain and spine. The journey had begun.
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