Lots of ups and downs this week. Greco is just so cranky when he wakes up after his treatment. He has had fits, just screaming and pulling my hair. I had to pull the car off the road to take him out of the car seat to calm him down on Tuesday. I don’t think he is hungry, he won’t even eat when he gets in the car. Just screams and cries. It is so hard, we don’t know what to do to calm him down. Troy had to be out of town this week, which just made this so much harder and

The routine is to wake Greco up as late as possible and put him into the car. He can’t eat or drink. I have to wake up the big kids, get them fed and dressed before I get Greco up, so he doesn’t realize they are eating. We get to the hospital at 8:45 and are finished by 10:30. The first day Troy and I got to watch the entire process. It was very detailed in his exact positioning. I felt comfortable seeing it, now I will know what is going on. Greco wakes up in the rec

Greco had his port placed in his chest today. It was the longest wait!! So aggravating to make a baby wait when he hasn’t eaten. Plus the other kids were in the waiting room waiting too. Waiting makes me so tired. I am so sleepy! My kids are so good and patient. They are taking all of this in stride. Greco is sick and we are all going to be a part of each and every step of the way. The surgery was only 20 minutes, but the waiting was all day. Today was hard. But it i

We surprise all of the kids with a Disney Cruise! This trip was booked a year ago with our best friends the Spadavecchia’s. It originally was just going to be the big kids. But since Greco got sick, we booked another room so that he could be included as time is short. The children all enjoyed this wonderful surprise, but it was very hard for Troy and I to relax. Sailing on a wonderful cruise ship in the middle of the ocean, somehow made me and my problems feel very insig

We take Greco in to have another MRI and a simulation so that the radiologist can build a mask for him to wear during radiation. It has been 3 weeks since discovery, and the tumor has not grown. Good news. The radiologist thinks it is a very slow growing tumor. The nurse there is wonderful and makes us feel good about choosing to stay at Florida Hospital. Poor Greco will have to have a port placed in his chest, so that he can be sedated for the treatments. So we met wit

Troy’s Mom and brother visit. She brought me Frankincense to anoint Greco with. The pastor at church also used an oil similar at church on Sunday when he prayed for Greco with our family. Trying everything we can think of to make this go away. Reading books on biblical diets, essential oils and all the DIPG websites. I am so frustrated. Anyone that has survived, it has been determined, that they were misdiagnosed. Still praying and begging for prayers from all of my fr

The oncologist heard back from St. Jude’s and they suggested radiation and chemo. They had an experimental drug and no positive results. This would mean living in Tennessee for months without our family and no guarantee. Not sure if we are willing to do this. Other DIPG studies were happening in other places in the world, none had positive results and many required biopsies and wanted to use experimental chemo. Just don’t know if we want to make Greco sick so that he can

#diffuseintrinsicpontineglioma #grecoromanbouzakis #pediatriccancer #livegreco #takedowncancer

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 trie

Greco was admitted to All Children’s Hospital. We met with numerous doctors and nurses and answered the same questions over and over again. People in and out of the room all day, but still no MRI. I had let him eat that morning and so we had to wait. Then we had to wait some more. And after waiting all day was finally given an MRI. The Neurosurgeon diagnosed him with DIFFUSE INTRINSIC PONTINE GLIOMA, an inoperable, always fatal brain tumor found in children. We were gi