It was the toughest day of my life on Jan 11, 2012. I have talked about this before in a few posts. But a recap- I was 34 week pregnant, and I was sitting at a table in the armory of my husbands work with my two little children when my cell phone rang. It was my 3 year olds pediatrician. He called to tell me the findings of a previous ultrasound preformed on her only a week before. He told us it was tumors. He said he didn’t know if it was cancer or not, but we needed to see a pediatric oncologist. 30 minutes later my husband had to board a bus and deployed for 366 days. I was left alone, pregnant and scare for the life of my little girl who was hysterical at losing her daddy.
Three years later almost to the day, she had her second surgery to remove the tumor, that had grown back, from her upper back.
It is a scary proposition. My child has a rare disease where her body grows non-cancerous tumors. When they were first discovered, the doctors told me it was just extra fat and she would be fine because they would never grow anymore. Instead, her tumors tripled in size in a month; that was when her pediatrician realized her “extra fat” was something more.
The medical care in Hawaii was lax and horrific. I wont get into it anymore because looking back if she would have had adequate care, we would not have been facing such a serious surgery. It’s a mom guilt that I wish I would have pushed harder and asked more questions instead of keeping quiet.
So here we are; three years later. Diva is getting the care she needs and surrounded by the doctors she should have had in the first place. However, even with all these blessings; my child still has tumors. The tumor starts just below her shoulder blade, grows down her spine, tentacles grew through her back muscle, around her ribs on her left side and wraps around her body to the front like a warm hug. But, it’s not a warm hug. There is nothing comforting about it. The truth is she will continue to have tumors grow unless the doctors get 100% of the tumor cells. And they cant.
Two weeks ago, Diva had her second surgery to try and remove the tumor. In preop they circled the front and back tumor with a pen and initialed the areas they were going to remove. The said the surgery should be about four hours. They took her back and we wait. We waited six hours.
When the surgeon came out he told us the good..and bad news. The good new was he got 95% of the tumor. To remove it all would have meant removing her entire back muscle. The bad new was that due to the severity of the tumor on the back and its unforeseen complications, they could not remove the actively growing tumor on the front. To remove that tumor, she will require a third surgery this summer.
During her recent surgery, the doctors used tweezers to pick the tumor and it’s tentacles out from between the fibers of her back muscle. Which is why they were unable to get all of the tumor. So what does that mean for her prognosis? The tumor will grow back and she will require another surgery to remove it for a third time. This is the horror of her disease. Without removing 100% of the tumor cells, it will grow back. The unknown is we don’t know how fast or what path the tumor will take. Twice now, the tumor has grown down her spine and through her muscles. We can only pray it will be slow growing and easy to remove….again.
As for her current recovery, I had to sit on the child practically to get her to recover. They say children rebound quickly from surgery and illness. Who ever said that was not lying. Her recovery is only that of a remarkable blessing fueled by prayers from friends, family and stranger from around the world. She is currently receiving weekly physical therapy, of which she has only has one session and they don’t think she will require many more.
Please continue to keep her in your prayers that she continues to recover swiftly, the tumor miraculously doesn’t grow back and her third surgery later this summer goes smoothly.