Monday, March 30, 2009

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!

Brenda's Apple Cake. Yum!!

Friday, March 27, 2009


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!!


Thursday, March 26, 2009

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.


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!

Wednesday, March 25, 2009

Encouraging News!

I just spoke with Dr. Yasargil's wife (who is also his nurse). Her exact words...."Professor has reviewed the films. He says do not be concerned. He wants to see her in clinic on Friday." (I have always loved how they call Dr. Yasargil "Professor") Please pray that Professor will look at this tumor and immediately know the best course of action to take to defeat it! God is at work!

Angela (aka Yat Yah)

A Better Day Today

Wednesday, March 25th
From Chi Chi:
This has been a much better day than yesterday! Mary-Kaylin was hungry for turkey bacon and toast and is drinking well. She still isn't able to sit up or walk around for more than about 5 minutes but is comfortable when laying down. We are still waiting to make an appointment with Dr. Yasargil at UAMS to get a second opinion. Dr. Yasargil is internationally known and was honored as the Neurosurgeon of the Century in 1999 by the Journal of Neurosurgery. What a blessing to live in Little Rock! I have officially warded off googling anymore until we see him, know more and have a plan of action for the tumor.
For the first time MK has asked, "Where is the brain tumor in my brain?" She is starting to ask more and more questions. She's in good spirits!

Uncle Dan Dan drew MK one of his famous caricatures--a Bowen family favorite!!

Mary-Kaylin at age 2. One of our favorite photos.

Tuesday, March 24, 2009


Chi Chi just sent these photos of Mary-Kaylins CT scans. The one on the right was taken before surgery. The one on the left was taken today. You can definitely see the difference. (The dark areas are the fluid on the brain.) The doctor was pleased and said the shunt seems to be working well.

Mary-Kaylin is a precious 8-year who was diagnosed last Friday with a brain tumor. It all happened very suddenly after she experienced some bad headaches last week, and her doctor sent her for a CT scan, then an MRI. The tumor is a "glioma" and is in the thalamus of her brain, a part of the brain that is almost impossible to reach, even for a biopsy. Gliomas are not curable, and our only hope is that it is a slow-growing tumor. She had surgery Saturday to put in a shunt to drain all the fluid off her brain. The doctors were amazed that she was able to function at all considering the amount of fluid and the location of the tumor.
Update 1: Mary-Kaylin is in ICU at Children's Hospital and will have surgery today at 4:00. A shunt will be inserted to drain the fluid off of her brain. The Dr.'s are unable to perform a biopsy because the tumor is in such a dangerous spot. I will post more information later tonight. Please pray for this sweet little girl.
Update 2: The surgery went well and was earlier than expected. She is resting in her room. The tumor is the size of a quarter and will have to be monitored to make sure it doesn't grow. Please continue to pray.

Update3: Mary-Kaylin is doing great!! She will have a cat scan today and then move out of ICU!! YAY!! Hopefully, she will go home this week. The tumor is in such a bad spot that all they can do is watch it. Please continue to pray.

Update 4: A friend who is a neuro radiologist at another hospital has looked at Mary Kaylin's MRI with another neurologist and is giving them more information, advice and second opinions. That has been very helpful and reassuring. The tumor seems to be a low grade II glioma. It's close to the brain stem/between 3rd and 4th ventricle area/in the endothalumus and a little into the mid brain area. THE GODD NEWS.....They are going home today! She has been moved to a regular room after a CT scan this morning showed the shunt was working properly and in place. Her pain is under control and she is getting to go to the restroom on her own. Her first meal request was for bacon, eggs, and fruit - what a great lunch! PLEASE CONTINUE TO PRAY FOR THIS SWEET LITTLE ANGEL!!!

Update 5:Mary-Kaylin is home. After a 4 hour nap, she has had an uncomfortable afternoon with headaches and upset stomach. They are scheduling an appt with Dr. Y at UAMS tomorrow to get another set of eyes on her. I'm sure tomorrow will be a great day!
When they got home Kirsten, the young lady who helps them with the horses, rode MK's horse to the house. MK fed Trigger an apple and loved on him. That made her very happy!
Please pray that the tumor doesn’t grow and that it remains a level 2.
Their neuro friend has said this is the type of tumor they hate the most. It’s near impossible to treat with surgery due to location and undefined boundaries and it doesn’t respond well to other treatments. We need it not to grow! We need it to go away! PLEASE CONTINUE TO PRAY!!