Audrey’s first 3 years of life have been anything but normal. When she was born the pediatrician that does the initial health assessment noticed a dimple. He mentioned to us that it’s probably nothing since everything else is perfect but let’s get a ultrasound to check for spina bifida. During that ultrasound it was found that she actually had a mild case of spina bifida occulta and a tethered spinal cord that reached all the way down to L3 and was attached to the side wall. For one the spinal cord should stop in the Thoracic region (mid back) on the spine and not extend into the Lumbar region. Two it should be allowed to freely flow up and down when you flex your spinal column. A tethered cord is stuck to the wall and over time gets stretched on so much it starts to lose function. It was determined at 10 weeks they would go in and fix the tethered cord as well as fix the spina bifida.
The day came for the surgery. Audrey’s surgery was scheduled for 4 hours. After 5 1/2 hours the surgeon came out and told us the surgery didn’t go exactly as planned. The spina bifida was fixed and went well but the spinal cord was different that they have ever seen. Audrey’s spine was different color than either of the surgeons had ever seen in their 30+ carriers as pediatric neurosurgeons. It was also forked (which is not normal) and had a small mass that they decided to leave in due to the risk of loss of function if removed. At that point we were told they had no idea what function Audrey would have going forward due to the unknowns.
Time progressed and Audrey grew. She was somewhat delayed in rolling over, crawling and walking. So we were sent to physical therapy where she began catching up and finally walking.
After that everything was progressing well. The neurosurgeon continued to follow up with us. At around 1 1/2 years old an MRI showed that she had become tethered again and that she had what he called a syrinx (fluid filled cavity in the spinal cord) that he was watching but not overly concerned with unless loss of function started showing in movement, and bladder or bowel control. Time went on we kept watching and getting MRI’s to check and no symptoms had evolved.
So about January of 2015 we start noticing that Audrey is regressing in her potty training. We know this is a symptom of the already known spinal conditions but could easily just be a 3 year old not wanting to stop what she is doing go to the bathroom. Over time and many different approaches at getting potty training back on track we started to worry it was more than 3 year old attitude. We knew we had a routine MRI coming up for a normal checkup so we told the doctor about the possible bladder control issues so he changed the MRI to a more through scan. The scan came back with shocking results. We were for the most part prepared for the doctor to come in and tell us that he needed to go back in to Audrey’s back and fix the tethered spinal cord and drain the syrinx. When the doctor came in and told us she had a large rapidly growing tumor in her spinal cord we were both thrown for a loop. The initial theory based on the location is it was most likely one of 2 different types of tumors and neither should be malignant (cancer). So we walked out that day shocked about the tumor but with hopes it wasn’t malignant. At least some hope. During the MRI the technician saw the tumor and tried to get quick authorization to do a follow up MRI with contrast and was denied so the doctor ordered a flow up MRI with contrast. This will show the full extent of the tumor and let the doctor know what he will be up against. So the following week we went back in and had the MRI with contrast then went up to talk to the doctor to see what he found out. The tumor lit up all over. This is a very bad sign when it comes to tumors. This is a very good indication that it’s malignant. Again we were thrown for another loop and reeling with fear, frustration and the unknown outcome of what will be. Surgery is scheduled for June 16th, 2015 and the fight begins!
