This past month has been a roller coaster of emotions as anyone could imagine. I just want to thank everyone for continuing to reach out and being so supportive. It means more than you know. Sophia is a very special little girl, and I think it’s so great that everyone wants to know how she’s doing, so we put together a site with her updates so everyone can follow the little warrior princess’ progress. This is Sophia Mary’s story:
In the blink of an eye, literally, your world can be turned upside down. Who knew that on Monday, 8/30/10 at 5 pm, fresh off of a great start to the week at work, that I would walk out of my meeting and read a message from Toniann saying, “Sophia has to have surgery to remove a tumor on the back of her brain.” My first reaction, this is not real…..this has to be a joke. My second reaction, this is obviously not a joking matter….third reaction, holy crap this is real….my entire body is numb. I sat down to digest this for a few minutes, gathered my thoughts, and sprinted to Penn Station to get back to Long Island and get to the hospital. So many question marks in my head…..How could this be? How did this happen? How did we not see? Hindsight is 20/20 and in retrospect, all the small signs pointed to this during the past month. The vomiting, which we originally thought she was lactose intolerant. The wobbly walking, thinking she is just a clumsy 2 year old. Then finally this past Saturday on August 28th, Sophia was complaining that her head hurt. Thank God this little girl is so vocal that she could verbalize what hurt and where. Toniann took Sophia to our Pediatrician, Dr. Patricia Ford in Amityville on Monday August 30th. Some irony here is that Dr. Ford was both mine AND Toniann’s Pediatrician when we were kids. We go to her because she is experienced, thorough, and loved by all. Since Sophia was complaining about her head, Dr Ford called for a cat scan “JUST IN CASE”. Turned out the “JUST IN CASE” was a mass in Sophia’s brain.
Just like that, our little 2 1/2 year old has to have surgery to remove a life threatening cancerous tumor. On Tuesday 8/31, Sophia went in for surgery around 1 pm and it was a 6 hour procedure to remove the tumor (longest 6 hours of my life). Finally around 630pm, our neurosurgeon that performed the surgery, Dr. Mitler, came out and let us know that Sophia did great and was in recovery. What a sigh of relief, but little did we realize that we didn’t even get on line for the start of this race. This is going to be a marathon, not a sprint.
Dr. Mitler informed us that the tumor he removed is called Medulloblastoma and we are very lucky because we caught it quickly and it was localized, meaning it grew and stayed in one spot. Many times, symptoms will go on for months, the tumor will continue to grow, and then begin to spread down the spine or wrap around the brain. Dr. Mitler was able to remove everything he could see. After the post surgery MRI, we were told that a piece of tumor was still in Sophia’s brain, so on Thursday, 9/2, Sophia went in for another surgery and had this removed. On Wednesday 9/8, Sophia was able to come home.
Friday, 9/10 at 3am, Sophia needed to be rushed to the emergency room because she was screaming in pain. It turned out she was suffering from hydrocephalus (build up of fluid inside the skull which leads to brain swelling). This can cause terrible headaches, nausea, and possibly a coma. Sophia was readmitted at LIJ. On Sunday 9/12, the fluid was seeping out of her incision and she developed a Staff infection and bacterial Meningitis. She went in for her 3rd surgery on Monday 9/13 to put an external drain in her head to stop the hydrocephalus. On Wednesday, 9/15, Sophia had her 4th surgery to change the drain. Finally, on Wednesday, 9/22 Sophia beat her infections and was able to go in for her 5th surgery to have her broviac inserted (a port in her chest so that chemo and all other medications can be administered easily) and a shunt placed in her head, followed by an unexpected 6th surgery to have the shunt positioned correctly. The shunt is an internal drain that she will have for the rest of her life to be sure the brain fluid drains properly. Additionally, a spinal tap was performed to be sure no cancer cells were in the spinal fluid as this could make her cancer “high risk”. On Saturday, 9/25, we were informed that the Cerebral Spinal Fluid came back negative for any cancer cells, making Sophia an M0 on a scale of M0-M4, which means she is “average risk”.
After almost a month in the hospital, Sophia finally came home on Monday 9/27, is looking the best she has looked since her first surgery and is gaining a little more strength each day. Step one of this long journey was tough, but the little warrior princess is a fighter and pulled through. Next step will be high dose chemotherapy for 6 months starting next week. Please continue to check in, and keep Sophia in your thoughts and prayers as she will need all of the strength and support to beat this.
Lots of love and God Bless,