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EJ's Battle against brain tumor

$21,092 of $100,000 goal

Raised by 249 people in 15 months
Imagine getting the scariest phone call of your life.  On December 13th of 2015, I received that very call.  Doctors told me, my Son, EJ has a brain tumor, and they could not operate on.  It could not "just be fixed". My four-year-old son was and still is facing death. During the last two years, we have worked with Doctors to find the best treatment methods for him.  With the help of Green Roads, New Health Horizons, and several incredible doctors, we have been through this tough journey. Our family is running out of resources to help him, and this is why we are reaching out to you. EJ is the toughest fighter I know.  He wants to be a Ninja Warrior when he grows up!  Since his diagnosis, EJ has consistently endured many painful seizures every day.  Over the last two years, we have been able to work successfully with Doctors.  Finally, EJ was getting better!  EJ was walking, playing and finally enjoying a quality of life that he hadn’t since his diagnosis. Now, however, the tumor is bigger than before, and he is beginning to have many challenges again.  His ability to walk is deteriorating because the need to shrink the tumor is dire. In January of 2018, EJ is starting necessary Chemotherapy treatments, to shrink the tumor.  Despite successful pain and seizure management treatments, EJ’s tumor is growing and time is running out to shrink it. If the tumor size is not reduced EJ’s ability to walk and even talk will only get worse. The insurance covers most medical fees involving chemotherapy treatment.  The problem is insurance will not cover the cost of his continued immunity and pain management treatments.  EJ’s immune system is very fragile!  Without these treatments, my little ninja warrior, may not survive the harsh side effects of chemotherapy.   Green Roads has been so generous to us in providing some of the medicine EJ truly needs, free of charge.  One of Green Roads founder’s himself, Arby Barroso, has helped make sure all EJ’s treatments are lab-tested and thoroughly checked for safety. Many of these expenses however still add up to a large expense.  EJ needs these treatments to live. We are spending every penny we can to make sure he not only lives but is happy and healthy. I am here to plea to anyone else who may be able to help. Please assist us in overcoming this challenge.    These treatments cost approximately $250 - $500 per visit, and doctors recommend at least 3 treatments each week.  Doctors have said we must try this for at least 3 months now to best help keep him as healthy and happy as he is now.   The initial three months will cost just over $18,000.  Money, we just don’t have. Please consider helping EJ stay happy and healthy the rest of his life! #TeamEJ With love & gratitude, Jen & EJ Update: EJ's first day of treatment    https://youtu.be/3BbDx6vOUY8
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Hello everyone,

EJ’s Celebration Of Life Memorial will be held this Saturday June 23rd, 2018 at:
Greynolds Park
4819 17530 West Dixie Highway,
North Miami Beach FL 33160
Between 1pm - 6pm @ Pavilion #2.
Reflection Of Life and Prayer will begin at 4pm
Parking is $7 per vehicle.
Please come dressed for a day at the park!

EJ was loved by many people all over the world! EVERYONE is invited to attend his celebration. Thank you all for your love and support!
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Hello everyone,

This is Kimberly O'Neill, Jennifer O'Neill's cousin. It is with a very heavy heart that we have to inform everyone that last night EJ's battle against his brain tumor came to an end. He was surrounded by family who loved him dearly and showered him with warmth and encouragement. At this time, the family is asking for privacy and peace to reflect and mourn during this difficult time. We ask that all condolences and well wishes are posted here so that when Jennifer is ready she will make a statement. EJ was loved by many of you, she will be posting the arrangements for his memorial soon. Jennifer thanks everyone with her entire heart for all of your prayers, kind words and donations that have been given for EJ. It is because of all of your love and generosity that she was able to give EJ the best care and extend his life for as long as possible.

This picture was taken yesterday as he was passing, she never left his side.

#HeIsHealed

#EJGotHisWings

#TeamEJ

Thank you
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Hey everybody,

This past week has been a busy one. Last weekend EJs congestion got really bad to the point where we had to take him to the ER on Monday. He was gasping for air. I had to keep him on oxygen, constantly suction him. It was terrible. In the ER they did a CT and Chest Xray which showed some fluid build up on one of his lungs, so they sent him home on antibiotics and a breathing treatment.

I must have made over a 100 phone calls between Monday to Wednesday trying to get authorization for his medications. But finally, late Wednesday night I was able to get them all thank God.

So far, he is now off of oxygen , praise God . He will be on the meds for 10 days, I am hoping this will make him feel better.

Aside from all of these shenanigans, conventionally, we are waiting on the results of the genetic pathology testing. Which will see if there is any specific medication that they see good results in with his exact tumor. Alternatively, we are going to be starting a more aggressive treatment which they use in Germany to treat terminally ill cancer patients. This treatment alone is going to range between $1300- $1500 per week. On top, of the other vitamin and mineral, cannabis, oral supplements, and dietary treatments that cost roughly $7000 per month. The man who has agreed to match whatever money I raise, is still on board and will continue to match as long as he sees others are helping as well. Please share this post with as much people as possible. His incisions are healing beautifully. He has not been awake much at all or doing much. He will still move around here and there. We haven't done any therapy this week. I am really hoping the antibiotics make him feel better and get him back on track.

Once again, please please share this post with as much people as possible. The more awareness the better. Please invest in my child's life that I am trying so desperately to save. My faith is at it's strongest. Please continue all of ur prayers, all of our faith will be rewarded. This illness has come not unto death, but to glorify His name. To show the power of Christ. He is the same then, now, and forever. He is able. And I believe in Him.
Love you all.

#teamEJ
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He is out, not awake yet. Breathing on his own. He moved his left arm and leg slightly. Movement on both sides of his face. When they extubated hun, the nurse said he was irritated moved his head around and was able to cough on his own!Praise Godddddddddddd!!
Dr. Spader you will never know the amount of love and appreciation I have for you. She removed a decent sized chunk of the tumor from the temperal lobe and not as much from the frontal lobe as she planned on due to certain circumstances. We will see how he is when he wakes up, we will do an MRI either tonight or tomorrow to see what it's looking like inside. We will be in PICU for close observation.
I chose to shave his hair for the procedure in efforts to help keep his incisions clean and prevent infection anyway I can. I couldn't believe that EJ's hair was a very serious topic discussed in our pre-op convo. Dr. Spader hated to do it, she was stroking his head as we were discussing it, and mentioned how it is what he is known for here. It will grow back and she did save it for me, it is in that bag on the picture on the right. Along with a little buddy they gave him.
Thank you all for your prayers and support. Most of all, I am thankful for our awesome, powerful God for allowing a smooth procedure and for allowing my little strong ninja warrior to continue to fight for his life. We love you all.
God is able, and I believe in Him. All the praise and glory belongs to Him!
The next chapter of #teamEJ begins...
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Raised by 249 people in 15 months
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