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Our kids inspire us to fight to defeat DIPG.

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Donation Total: $60.00 One Time

May 17, 2011 – January 3, 2015

Diagnosed: May 20, 2014

Written by Azzy’s father, Dee

May 17, 2014. Azalea had her 3rd birthday. She had a nice birthday party, and she had a lot of fun. The next day, we realized Azalea was limping a little, but we weren’t that concerned. On May 19, she was limping a lot more, so we were going to take her to the local urgent care. When we told Azzy to put her shirt on, she was having problems lifting her right arm up. I was worried, but I just was thinking she had fallen at her party, so Azalea’s mom, Delilah, brought Azzy to the hospital a few hours later, at about 12:00 am on May 20. Delilah told me that they thought it might be something with her brain, but they were not sure and were waiting for the doctor to come. So, about 6 hours later, Delilah told me I had to come to the hospital now because they had to do an MRI. I went there and talked to a few doctors, and we had to wait in the waiting room. When they were done, about 4 doctors came in the room to get me and Delilah, and the first thing the doctor said was, “I’m sorry. We were hoping that Azzy had a stroke.” I remember hearing him saying that it felt like my heart stopped beating. He continued and told us our daughter had a brainstem glioma the size of a golf ball, also known as DIPG. He said it was the worst tumor you can have and the only tumor you don’t have to do a biopsy on. Tears ran down my and Delilah’s faces. I asked them how long she had to live, and he said they did not know for sure, but because it was so big, 6 to 8 weeks max, if we were lucky. They said all we could do was radiation and chemo, but the radiation and chemo was just for Azzy to live comfortably – the tumor wouldn’t get smaller. I couldn’t believe what I was hearing. A lot of different doctors came in and said the same thing . . . “I’m sorry. She’s so beautiful.”

So, our friends were telling us about cannabis oil, and I should look it up. I did, and a lot of people were saying it was helping their cancer. We got a medical marijuana license and then started to give Azzy cannabis oil, and she did the 6 weeks of radiation. Azzy was feeling really sick. She stopped eating, talking, and walking. When we gave Azzy the oil, she started back walking and talking, and we went back to the hospital to do the MRI, and her tumor had shrunk 67%. They couldn’t believe it and asked us what we did. Over the months, Azzy got a lot better. On the 3rd MRI, the tumor did not shrink anymore, but it did not get bigger. After Azzy’s 6 weeks of radiation were done, none of the doctors could believe she was up singing and dancing. We got low on money, and the cannabis oil got very expensive, so we opened up a gofundme account to pay for the oil. But when people saw Azzy was getting better, they stopped donating – not understanding you have to keep giving her the oil or the cancer will come back.

Late December, Azzy’s symptoms came back. I believe it was December 20 when Azzy had her 4th MRI, and they said the tumor was as big as when we first took her and she did not have much longer to live and we had to call hospice. I couldn’t believe what I was hearing because, no matter what, Azzy kept proving the doctors wrong. Azzy was so happy for Christmas to come. We woke her up on Christmas day, and she opened a couple of toys. A couple days later, on December 28, Azzy was breathing a little funny. The doctor said she had maybe a day or so to live. We went home and called everyone/

Beginning on January 2, 2015, Azzy was breathing really hard. We called her hospice doctor, and she told us Azzy was in the process of dying. Maybe she had an hour or two and that we should call friends and family now. She gave us more medications to give Azzy every hour so she was not in pain. All of our friends and family that could make it were there – about 60 people – everyone just watching Azzy as she fought to breathe. Eventually, people started to leave, probably thinking she was tough and going to prove the doctors wrong again. My father and Delilah’s father gave Azzy a hug and a kiss and said “see you later.” Delilah was holding Azzy. I was on the bed next to the couch falling asleep, and Azzy took one deep breath and then went with the Lord on January 3, 2015. My cousin tapped me and calmly said to me, “Azzy’s gone.” That’s the saddest day of my life. It was a few hours later when they took my baby’s body.

We want to find a cure for this horrible disease.

 

What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

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