Sebi Strong - Help The Trans

Let's support the Trans on the road ahead. For those unaware Sebi has had some recent medical problems. Read below from Sara. Help the Trans feel our love, support and prayers.

"On August 16th, after frequent headaches and initial vomiting, we took Sebastian to the ER at Scottish Rite Children's Hospital. They completed a CT and found a large (golf ball size) tumor in his brain. We were in shock! They immediately admitted us to the PICU and started monitoring him. Outwardly, he appeared fine: playing with his monster trucks and playdoh, telling stories of dinosaurs and hot wheels. Sebi has always been precocious with a well formed vocabulary and keen sense of humor.

The next day, we tried to be patient as we waited for his MRI. Sebi had not eaten since midnight and was not happy! Finally, they took us down, sedated him and we were able to see a clearer image of his brain. As we met with Dr. Reisner, we formed a plan. The tumor had to come out right away! As it was growing, the fluid was increasing and causing pressure to build up. Luckily it was in the ventricle and not attached to any brain matter. We were still sleepless with worry. Here was our beautiful perfect boy. How could this happen? We cried and prayed.

The next day, we were scheduled to insert a drain to relieve the pressure. Again, we waited. Tried to distract Sebi. Waited. Then he started getting very upset and had a seizure. They sedated him and took him to surgery. He came back quickly but not stable. They decided to intubate him and place a second drain. It was a very sleepless night for us while we watched the monitors for distress.

8am on Friday August 19th was the big surgery. We had many friends and family come sit with us to pass the time. At 5pm, we spoke with the surgeons and found out they had removed 100% of the tumor! Sebi was intubated for several days and on heavy medication. The days in the PICU have been filled with ups and downs. We celebrated moving off the vent, getting to breathe room air, hearing his sweet voice again, seeing him smile, sitting up, standing and taking bites of food. We have struggled watching him detox off strong narcotics necessary to help during his surgery and allow his brain to heal; waiting for his drains to clear up so we can move out of the PICU and wrestling with making sure our daughter Sage has everything she needs at home. The surgeons, doctors and nurses have been so kind. Sebi’s guardian angels.

Sebi woke up like a newborn. He’s on tube feeds, isn’t talking much and will need intensive therapy to regain all his abilities. His focus is improving everyday. We make him laugh by being silly and are just trying to be the best advocates we can until he finds his voice. I’m sure he’ll have some things to say about all this.

Our next steps are moving to inpatient rehab to work more intensively on his speech and movement. We are also anxiously awaiting his pathology results to determine if he will need additional cancer treatment. CHOA has done testing on the tumor cells and can’t determine what kind it is. They have sent a samples to other labs. This most likely means it’s a rare form. We continue to pray for swift answers.

At this time, we aren’t sure how long Sebi’s rehab and treatment will take. Our jobs have graciously allowed us time off but there is some anxiety about the future. In addition to an extended hospital stay, we may be looking at in home care and follow up appointments. We would like to be there every step of the way until we find a balance with all the changes that have impacted our family."