Phoenix Agalos

Phoenix Agalos

Our little warrior began his fight in the womb…. at birth he was found to have Poland Syn...

United States, Bakersfield


WARRIOR Story

Our little warrior began his fight in the womb…. at birth he was found to have Poland Syndrome where he was born without one of his chest muscles , his right arm under developed, and a metabolic Carnitine Transport Disorder. His metabolic disorder requires taking a Carnitine medication for the rest of his life. Phoenix just turned 7 … and has been an amazing little boy … full of life … happy, loving and has brought the most beautiful joy in to our lives. In May of 2017, Phoenix came down with the flu. In the following couple of weeks, we took him to the Emergency Room twice and to his pediatrician three times. It was the last weeks of school, he was to graduate from Kindergarten, and he just couldn’t seem to get over the flu with recurring head aches and vomiting. He was so excited to finish school, get his graduation gift which was a Titanic building set, and to spend the summer at the water park. On June 02, 2017, the day after Kindergarten graduation, he was having to say goodbye to his 14 year old wonderful dog Bella. He asked if it was time for her to go to heaven? He seemed to understand. After our goodbyes… He went in the house to build the Titanic… but suddenly got extremely sick again… We headed to the Emergency Room feeling something was not right. We entered the hospital, had blood drawn again, hours later, a CT Scan was ordered… and the Nurse Practitioner came and gave us the news that he had a mass in his head. We called Stanford where Phoenix’s Genetics doctor is located, to update them on his condition and to ask how and a time frame that they would want him transported. Thirty minutes later, two helicopter pilots walked in the E.R. asking for Mr. Phoenix Agalos. They strapped him to the gurney with his stuffed Flipazoo Gru and his Mickey Mouse blanket… then he and his Daddy boarded for the flight in the helicopter headed to Stanford. The surgeons were waiting for him upon arrival at Lucile Packard Children’s Hospital at Stanford in California. He was taken to surgery where an ED tube was inserted in his skull to relieve the pressure on his brain. First thing he asked was, what happened to my hair? What is First Grade going to think? All of this was followed with a two hour MRI, and later that afternoon he asked me what was going to happen to him. He asked if he was going to die. I told him he was going to have a procedure to help him get better. The next day he went through an eight hour brain surgery to remove a 5cm tumor. The following day he had another two hour MRI that resulted in the surgeons deciding they wanted to go back in to make sure they got it all. Two days later Phoenix went through another seven hour brain surgery. The surgeons felt that they had gotten it all. He was so strong and amazing throughout. In the beginning he could still speak… we would say i love you… and he would say… I love you too. As the days passed, his voice seemed to be leaving him… and Phoenix could no longer get his words out… he was left with mutism and in an ambulatory state. He was transferred to Rehab, and then back to Lucile Packard Children’s Hospital for more therapy, a spinal tap that caused head aches and more vomiting, and a medical port installed in his chest for administering anesthesia and chemotherapy. His first word after about three weeks of having no voice was…. “good”. He was so happy. It was a GOOD day. He is fighting all the way. He has completed 30 Radiation treatments. This last week, Phoenix started Chemotherapy. We are spending every available moment helping him eat, drink, play, and working at as much happiness as we can…. to help him get better. We appreciate everyone who is supporting our Love Beats Cancer Fund. Thank you for considering our little warrior for sponsorship. Sincerely, The Agalos Family

Updates
  • Phoenix1
    Posted an announcement September 2, 2017 12:25 am

    … after the 30 Radiation Treatments… we got to go home. It is so nice to visit our cats… and build Legos. We were gone for three months. We were sad to be away from home. It is really hot weather here… but it is still nice to be home for a while before having to leave and go back for the start of ChemoTherapy

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Susan and Jeremiah O'Flaherty
$50
  • Phoenix1
    Posted an announcement September 2, 2017 12:25 am

    … after the 30 Radiation Treatments… we got to go home. It is so nice to visit our cats… and build Legos. We were gone for three months. We were sad to be away from home. It is really hot weather here… but it is still nice to be home for a while before having to leave and go back for the start of ChemoTherapy

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Phoenix Agalos
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$50
Susan and Jeremiah O'Flaherty

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