Mary-Kaylin has had a great week. It began last Sunday with her meeting some of Memu's Little Rock friends who have been praying for her. At the Hedges we dyed Easter eggs, ate great food, hugged Ms. Lori and Ms. Patti who visited during the hospital stay and had a good time listening to Ms. Patti's plans for Mary-Kaylin's wedding! The wedding plans started when Memu suggested that MK could ride a horse at her wedding. Thankfully Ms. Patti stepped in and suggested a horse-drawn carriage instead. They had it planned in a matter of minutes!

Easter Sunday was an important day for Mary-Kaylin. She walked down front at church and let everyone know she is a Christian. She's been asking a lot of questions lately and we went to pray with Pastor Gary on Thursday. It was her first Sunday back in church and we will never forget it!

Please continue to pray for her. She is still having headaches that seem to come and go throughout the day. We should know better how the tumor is "behaving" after 2-3 MRI's. We pray it doesn't grow at all or goes away!

Michele

Mary-Kaylin with Ms. Patti

Back to School!!

Clinic Visit

Mary-Kaylin feels great today! It's the first day she's felt this good since her surgery. She's not had headaches when sitting up or walking and has spent her day playing! e-Stem Elementary, get ready! MK will be back on Monday in time for Benchmark testing! Mary-Kaylin's visit to Children's Neuroscience Clinic went well today. TaTa, Daddy and I were there. Mary-Kaylin had several questions about her incisions, the "bump" on her head from the shunt and the discomfort the tube was causing as it crossed her chest (it lays just under her skin). Kelly, the NP, answered them all to MK's satisfaction. Because we had been to see Professor, the doctor had no new information to add. The shunt seems to be working well. Her brain has been so compressed against the inside of her skull for so long that the inside of the skull has impressions from her brain. As the hydrocephalus is relieved and she adjusts to the new pressure levels, Kelly said MK may not feel well for awhile. Kelly said, "She may have been set up for chronic headaches but we'll not know that for 6 months." Following the next 2-3 MRI's we will know more about the tumor's behavior and be able to make a plan of action for addressing it directly. Of course we want it to be gone! Her next MRI will be June 19. Our next step is to find her a neuro ophthalmologist due to the location of the tumor next to the visual relay. We have the names of two we are deciding between. Our support from friends, family, church and school is amazing! Thank you for everything! This little girl feels so loved and supported and so do we. Michele

Reflections

As we head to Mary-Kaylin's first check up following her surgery, I've been thinking about all of the love, support and prayers that have gotten us through these first couple of weeks. When we first learned it was a brain tumor, I'll never forget walking into the ER waiting room at Children's where my aunt was sitting with Mary-Kaylin and seeing the look on Memu's face when I mouthed "brain tumor" to her where MK couldn't hear or see what we were doing. I walked back to the room where doctors were deciding next steps. By the time I walked back into the ER waiting room to tell her what going to happen next, my parents, Martha and Elton Ballentine, brother-in-law, Jeff Johnson, cousins Mallory Hardin and Scooter and Avie Hardin, Unlce Lu Hardin, and Perry Jon's good friend and our minister of music at Immanuel, Eric Jones, were there. My sister, Angela, was on her way to take kids to Nashville for some fun and had decided to turn around and come home. That was the moment I knew that whatever we were about to face, we would not be alone. That evening Patti Cannady, Anne Pressly's mother and a good friend of the Hardins, came to see us. She was an amazing encourager and true inspiration. She looked me in the eye and told me several things that Beth Moore had said to her. She told me to pray Psalm 91. The next evening she visited when Mary-Kaylin was in a tremendous amount of pain after her surgery. It was just Patti and myself in MK's ICU room. Mary-Kaylin was in so much pain she could barely catch her breath and was crying. I felt so helpless and was in tears as her nurse scrambled to order more pain meds and a PCA. Ms. Patti came in and started describing the precious pajamas and hat she had bought for her. Her voice was so soothing and calm. Then Patti started talking in Mary-Kaylin's ear about the angels in her room and Jesus. She was speaking sweet scriptures to her. Within minutes Mary-Kaylin was breathing easy and resting. As I watched and listened to Patti and witnessed her faith and strength, not only did I know we were not going to be alone in this journey, I knew that God's provision for comfort, strength and hope was real in the midst of the most trying and scariest of times. I've known this for a long time, but on this day God knew I needed to experience it. Knowing what Patti had been through and experiencing her strength and faith as she encouraged us and comforted Mary-Kaylin was something I'll never forget. Michele

MKs Weekend

Mary-Kaylin had a good weekend. She's still not able to sit up or walk around for very long without having headaches but those should subside within the week. She had several friends visit!...Lauren, Sydnie, CC, Jordan, Katy and Gracen and cousins DD, Emma, Ethan, Adam and Evan. Cousins Avie and Scooter visited. Avie brought a cake her mom, Brenda, had made from scratch. We think it's the best thing we've ever put in our mouths! Friends from our Bob Beach Sunday School Class have brought dinner several times and that has been a big help! Friday night Memu (Aunt Mary), Uncle Lu and Mal Mal (Mallory) came over to stay with MK so we could go out to eat. Uncle Lu left when spa time started...can't imagine why?!?! It was nice for Perry Jon and me to sit down for the first time and talk about everything over a nice meal away from it all. Sunday evening Yat Yah (Aunt Angela) and crew brought a movie and we ate tacos and watched the movie.

Several of you are asking about Jon-Austen (13yr old brother). He went to Dallas with some friends this weekend and had a wonderful time. He is preparing for his first rated dressage horse show the first weekend in May so he is staying busy!

Mary-Kaylin is out of school this week. We hope she can return next week.

Thank you for all of your prayers and support!
Michele

Brenda's Apple Cake. Yum!!

PRAISE REPORT!!

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!

Good News from Professor!

We just left the appointment with Professor Yasargil and I wanted to post a quick update. I'll let Chi Chi post all of the details later, but we left very encouraged from the news. Professor is sure that the tumor is slow growing, and that she could live a lifetime with no problems! They will continue to watch it with MRIs every 3-6 months to watch for growth. I was so happy to see Chi Chi & PJ both walking out with big smiles on their faces. Please continue to pray for Mary-Kaylin that this tumor will not grow or better, just completely goes away!!

Yat

A Good Thursday

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!