LIVE!

Met with more doctors who answered some of our questions. All advised us to LIVE all that we can, take advantage of his Greco’s health now, time is short. We were discharged from the hospital that morning, there was no need to stay.


The week was a blur. We contacted as many people as we could begging for prayers for a miracle. Emails, texts and phone calls poured in. We couldn’t talk to people we had to cocoon ourselves at home with our children. We just prayed and tried to digest what we were going through. We had no answers to people’s questions, we had nothing to say, what could we say? Except, why? The children all knew that Greco was sick, they just did not know how sick. But Nic knew. He could sense it, he could put it all together from our looks and our tears and overheard conversations. He was crying with us. We did not tell him everything, just enough to satisfy his questions. But he already knew more than we wanted him to know.


The Tumor Board met to discuss Greco’s tumor the following week and it was decided not to do a biopsy. This could cause a lot of unwanted damage that wasn’t needed. His tumor looked like a classic DIPG, and the only recommendation was to get 2nd opinions and try radiation to buy us some time. We met with Greco’s oncologist and she was very informative. She gave us a timeline of 2 months to 2 years, depending on what treatment we chose. The visit with the oncologist gave us no hope. We left feeling completely hopeless. She agreed to send our records to ST. Jude’s, Duke and Boston Children’s for second opinions. We were immediately sent to Florida Hospital to meet the radiologist. He explained to us that the radiation would attempt to shrink the tumor and bring back normal for a time. There is no cure, the tumor will grow back he told us. But the radiation will give us more time. Time to live and make memories and time to pray for a miracle. So many decisions lay before us, but we had to research on our own, wait for the second opinions and keep on praying!!!

#diffuseintrinsicpontineglioma #livegreco #grecoromanbouzakis #pediatriccancer #takedowncancer

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