Mary-Kaylin is doing well! Last night her teacher, Paige Davenport, came to visit. Mary-Kaylin told me at bedtime that of ALL the presents she's received, the bracelet Kirsten made from our horses' tails and Ms. Davenport visiting are her favorites! She is so funny. Neighbor friends and cousins Emma and Ethan came over today and they watched a movie. She's watching them play Wii as we speak. She's had turkey bacon, toast and strawberries for every meal. She is able to do more before a headache occurs so it seems as if she is getting stronger every day. They drain the fluid from the brain slowly and it will take awhile for it to get to her new "normal". The ventricles will never return to their original size.
I've been thinking about the way things unfolded and the blessings through all of this. Mary-Kaylin had been having minor headaches off and on but nothing that concerned us. Then on Tuesday, March 10 she got in the car after school, curled up and threw her sweater over her head. She said her head hurt "really bad" and told us to be quiet. The next night she woke up to tell me her head hurt. I told her to go back to bed that she was o.k. Then early Friday morning, March 13, she woke me to tell me her head hurt "really bad" and started throwing up. She couldn't stop being sick even after giving her Phenergan compound on her wrists. I thought it was strange she could be so sick without a fever so I took her to the doctor later that day. He told me to let him know if she continued to have headaches. He said he didn't like the "pattern" and would schedule a CT scan if they continued. She did continue to have a couple but they were minor and off and on.
On Wednesday Mary-Kaylin called me from school and asked me to bring some Tylenol because her head had hurt all day and she didn't want to go to church with a headache.
Thursday I called the doctor's office. I told them I thought she needed her eyes checked or probably had allergies. We were headed to Dallas for shopping, Six Flags and the Tut exhibit and I was sure a CT would be a waste of time. I thought it was a little much. The nurse said she would call me back. When she did, she said, "The doctor ordered a CT and that's what she is going to have." They set it for the next day at Baptist.
Friday, March 20 she went for her CT. Her doctor's office called an hour and a half later to tell us they saw a lot of fluid on her brain and to go immediately to ACH through the ER for a neuro consult and MRI. They said ACH knew we were coming and to be prepared to wait for several hours. I knew something was serious when we checked in and ER told us they had her room waiting. I texted Perry Jon and told him to get to the hospital immediately. When the doctor got on her knees in front of me and put her hands on my knees to tell us what was going on, I sensed that our lives were about to change. She told us about the hydrocephalus and that the reason for it was due to a tumor. Words can't describe what we felt at that moment.
Her fluid levels were so high they didn't know how she was functioning. They put her immediately into ICU and scheduled surgery for the next day. The blog picks up from there. TIMING has been our biggest blessing! Thank God Carol, Dr. Ledbetter's nurse, and Dr. Ledbetter didn't listen to me! If we had gone to Six Flags and she had ridden those wild rides, we would have had a major medical emergency on our hands. God's hand was at work from the beginning. One ACH doctor was in awe of Dr. Ledbetter's CT decision...all because he didn't like the "pattern" of the headaches. We can't wait to give Dr. Ledbetter a big hug!!!!!
Another blessing is her hair. You can see in the picture how much hair they shaved and how Dr. Ahmed left enough to cover the shaved area. Every nurse we saw was amazed. They all said she was the first child they had seen who had NOT had the entire side of the head shaved! We are so glad she will not have to endure the stares, comments and questions from strangers for now.
Of course our family and friends have been the best. The peace and support we are receiving is humbling. Thank you for everything! Can't wait to hear what The Professor has to say tomorrow. Our appointment is at 9:45am.
Michele
Mary-Kaylin's first CT. The black in the middle are her ventricles filled with fluid. They should be two small slivers. One of the ways that they can tell that the tumor is slow growing is by the size of her ventricles. They can not get this large over night. The tumor has slowly been blocking the fluid from draining, possibly over a matter of years.
On Saturday, they inserted a stent that will drain the fluid from her brain. The stent is a very small tube that is just under the skin and goes down her neck, over her collarbone, and into her abdominal cavity. The fluid drains into the abdomen and is absorbed back into her body. She will keep this stent forever, and it is designed in a way that it will grow with her.
MK today with her poodle, Lilly. You can't even tell that her hair has been shaved underneath!
Meeting Professor Yasargil was such an honor and blessing at the same time. He gave us very encouraging news and, for the first time, with a pull-apart model of a brain, showed us exactly where the tumor is located. He described it as the size of the tip of his pinky, obstructing the aqueduct and in a "corner" that is on a visual relay station. Her visual field in the left eye is something we will need to watch. It's a low grade level II astrocytoma/glioma. Professor says there is little chance it will go to level III or IV. We will know more about its growth pattern after the 3 and 6 month MRI's. It's probably been growing for years given the calcifications on the brain - possibly from when she was an embryo. He said MK's surgeon, Dr. Ahmed, was a very good surgeon. He was not happy that there were signs of tape goo and markings on her from her hospital stay. In the pictures they are working on getting all of it off. He said (Imagine this with a thick swedish accent), "My teacher long ago taught me never leave color on a patient. They are not in circus!" It was so sweet to watch him and his protege, Dr Barr, work gently to get the markings off of her. He said, "Now kids will not have anything to say." If it needs treatment he would not use radiation or chemo but surgery. He says, "I see path I can get to it." He showed us on the model how he would access it. "You can live long life with this tumor," he said. As we were leaving he told Mary-Kaylin, "Now go ride horse." That made her smile real big! I'm not googling this thing anymore! I'm just going to call Professor's office if I have any questions. He said, "These doctors work from textbooks and textbooks are wrong!" The educator in me LOVED that statement! We pray that the tumor doesn't cause any problems for her in the future and doesn't grow, that the shunt continues to work and that doctors continue to provide excellent care and discernment during her life. Cousin Tricia and her "Coop Troop" sent a bouquet of fruit! Mary-Kaylin immediately filled up on strawberries!
