As many of you may know, Gio was diagnosed with an arteriovenous malformation in his brain when it ruptured on December 3rd, 2019, causing a major bleed in his cerebellum and brain stem. He had a normal day at school and as he was getting on the bus to come home from school, he experienced the most excruciating headache. He boarded the bus crying and his older sister, Londynn, asked him what was wrong. He was unable to respond to her and laid down in his seat. Londynn tried to alert the bus driver that something was wrong with her brother, but the bus driver ignored her. When they arrived at the bus stop, Londynn scooped up her backpack and his backpack, and tried to help him off of the bus. As they were getting off of the bus, my youngest daughter Aislynn, came running towards their dad and I and was yelling that there was something wrong with Gio. As we looked up, Gio was stumbling off of the bus and fell into the grass as the bus pulled off. We had no idea what was going on and thought at first that maybe the kids were playing around with us. Rodney ran over and scooped him up and brought him over to the car and Gio began throwing up. We were asking him what happened, did you hit your head, what did you eat??? Gio was unresponsive and his eyes were rolling back in his head. We immediately drove him straight to our local ER. They took him back to get a CT and came back and told us that Gio had a mass in his brain that was causing bleeding and was pushing down on his cerebellum. They then did a CT with contrast and told us that he had an AVM.
An AVM is a tangle of abnormal blood vessels connecting arteries and veins in the brain. The arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart. A brain AVM disrupts this vital process. An arteriovenous malformation can develop anywhere in your body but occurs most often in the brain or spine. Even so, brain AVMs are rare and affect less than 1 percent of the population. The cause of AVMs is not clear. Most people are born with them, but they can occasionally form later in life. They are rarely passed down among families genetically. Some people with brain AVMs experience signs and symptoms, such as headache or seizures. AVMs are commonly found after a brain scan for another health issue or after the blood vessels rupture and cause bleeding in the brain (hemorrhage).
Gio was immediately intubated to protect his airways and was prepped to be life-flighted to the nearest children's hospital. Gio then spent the next four weeks in a coma on life support while his brain was recovering. Doctors thought it was best not to operate right away and to let his brain heal before we started any surgical procedures and we were told that we would discuss surgery at a later date. We watched the monitors constantly and had to watch our son have CT after CT, xray after xray, have a machine hooked up to his body to regulate his temperature, and develop pneumonia from the chest tube twice. As he was being weaned off of the the heavy meds, we watched his body go through withdrawl. The doctors said that they had given him more morphine and versed than they had ever given anyone his age and size to be able to keep his brain from having to do any work at all. He was also failing every breathing trial that they did in order to find out if he would be able to breathe on his own. At about the three week mark, doctors sat us down and told us that we needed to pull the chest tube out and see what happens. If he breathes, then awesome, but if not, then he would have to be re-intubated and then we would have to discuss doing a tracheotomy. We agreed and they pulled the tube. Gio immediately began breathing on his own! It was a miracle! Gio could not walk, talk, move any muscles in his mouth or face, and couldn't move his right arm or leg much. As he finally started to become more alert, he started working with physical therapy, occupational therapy, and speech therapy. Doctors then gave us an embolization and surgery date of February 5th and 6th and we were then transferred to Nemours Children's hospital in Orlando to go to inpatient rehabilitation on January 2nd. We were there for 3.5 weeks and Gio made a remarkable recovery! He is now not only walking, but running, dancing, swimming, and back to eating a full diet all on his own! He still has some balance issues and weakness in his right arm and hand but it is getting stronger everyday!
We prepared ourselves as February grew closer that our son was going to have major brain surgery. On February 5th, Gio underwent a 5-6 hour embolization procedure. The doctor came out half way through the procedure and told us that the AVM was a little bigger than they thought and that they were only able to get it 60-70% embolized at that point, and would have to reschedule the surgery and do one more embolization before surgery. We were then given the next surgery and embolization date of March 4th and 5th. On March 4th, Gio underwent another 5-6 hour embolization and the doctor was able to get it 95-99% embolized! The embolization is a glue that is injected into the AVM that cuts off the blood supply and would make the surgery easier and less risk of a bleed during surgery. That evening while Gio was recovering, his neurosurgeon came in our room and asked to speak with us privately. He had a paper in his hand and began to show us statistics of the rate of morbidity or mortality in removing an AVM from deep in the cerebellum. He told us that he originally thought that the risk rate was about 10%, but after reading this article, he saw that it was actually 20%. He then told us that he thinks that we should find another neurosurgeon that has more experience with removing AVM's in the posterior fossa/cerebellum. We were devastated! We thought that this nightmare was finally going to come to an end and our son was going to be cured, but now we started to realize that this journey is not over. At any moment, since it is not fully embolized, it could bleed again and doctors say that he would most likely not survive another bleed in this area. The rate of mortality for a bleed in the posterior fossa is 70%...
Our neurosurgeon in Orlando told us that we needed to act soon and that we did not have months to wait, and he gave us a few references of neurosurgeons to contact and put us in touch with Dr. McCrea at Holtz Children's hospital in Miami. We drove to Miami the following week and consulted with her. She felt that she needed to see a new full MRI before she could make a determination on whether she felt comfortable operating. We had an MRI scheduled within a couple of weeks and then it was canceled due to Covid. We were told that since the MRI was for a surgery, that it was canceled because they were not doing any elective surgeries. I thought to myself, since when is my sons surgery elective??? We finally got the call that they were scheduling MRI's again and had an MRI done a couple of weeks ago. Dr. McCrea then video conferenced with us and let us know that she feels that the best treatment for Gio is Gamma Knife Radiation in a lower dose since it is next to his brain stem. It is a procedure that they use a precise form of radiation therapy that focuses intense beams of gamma rays with pinpoint accuracy to treat lesions in the brain. There are numerous side effects of GK, including another bleed and it also does not have a high success rate with AVM's that have already been embolized, and when they have to use less radiation. Dr. McCrea knows that we would rather the surgery, so she said that she would like another angiogram done just to completely make sure that the AVM does not involve his brain stem and to also see what it is doing now since it was last embolized in March. We are praying that it has not recruited any new vessels. They have scheduled the angiogram for the 26th of June, so we are currently waiting for that.
In the meantime, we have been researching like crazy and I came across a mother's post about her son's AVM rupture and how she is also searching for a doctor to give her options on healing her son. She consulted with a doctor, Rene Chapot, in Germany that is doing a procedure that is not being done here in the US and is curing AVM's 100% without invasive surgery or radiation! He can cure AVM's by both arterial embolization (which Gio has already had done) and transvenous embolization. So I sent him an email with all of Gio's records and imaging and he responded the next day. He said that he could 100% fully cure Giovanni's AVM with ONE transvenous treatment (since he has already had the transarterial embolizations completed)! We are ecstatic and have been given a new hope for our sons future! We are now trying to do everything that we possibly can to be able make this happen and save his life!
We want to let everyone know that we sincerely appreciate everyone that has prayed for him and helped us thus far! We can't even begin to tell you how thankful we are, and ask that you all please continue to pray for Gio and pray that we are able to make this treatment in Germany happen for him! If any of you are able to donate at this difficult time in our world, we would be so grateful! Thank you all so much and we will continue to keep you all updated! ❤🙏❤