Summer 2003
Phillip had some trouble with dizziness to the extent that he sometimes fell down. It seemed to mostly happen when he had been sitting or lying down for awhile. At least once he fell down quite hard with no attempt to catch himself. We saw a nurse practitioner at our pediatric office about these episodes. After an exam and some blood work that didn't turn up any problems, it seemed that these episodes were related to position changes. We just talked to him about getting up slowly and holding onto something until he was steady. We are not sure how often he had trouble with this, but we noticed it happening approximately once a week.
    In August, I (Janet) noticed Phillip having an odd episode where he seemed to just fade away, or blank out for several seconds. He just stood there and looked at me but did not respond to my question, even as I continued to repeat it. He later said that he just "lost his language" for a moment and was unable to respond to me. We will call this type episode a mini seizure. He has since indicated to us that he has had a number of these episodes over the six months prior to September.
    On September 30, Phillip had his first grand mal seizure at school around 4:00 p.m. This was a scary experience for us because we received a call from the school letting us know that he had had a seizure. Since we were not there, we did not really know what we were dealing with. We took him to the ER, had blood work, CT scan, and EKG. These tests identified no cause.
    In early October Phillip had an MRI. The only thing of interest that showed up was what the neurologist called a slight skeletal defect in his right temporal area. Later Phillip also had an echocardiogram and holter monitor. He also had another EEG which showed a minor spike in left temporal area.
    On October 19 Phillip had his second grand mal seizure at 4:00 a.m. while in bed. He fell out of bed due to the convulsions. This was the first seizure that we had witnessed and we arrived at his side quickly after it began. In my ministry work I (Tommy) have seen many seizures before, so I immediately knew what was going on. Otherwise we would have been terrified because a grand mal seizure is a violent physical experience to see your child go through.
    At this point, the tentative diagnosis of Phillip's seizure behavior was epilepsy. We began to learn a lot about this disease. We learned, for example, that about 1% of the population suffers from epilepsy, that it can start at any time, and that in about 90% of the cases, no cause is ever determined. Also, in most cases, epilepsy can be controlled with medication, but the medicine must be taken for the rest of your life.
    Thus, the physician started Phillip on Trileptal, an anti-convulsant. After about ten days we noticed a rash on Phillip's face and torso, and it was concluded that Phillip is allergic to the medication and it had to be discontinued immediately. The plan was to begin another medication after the allergic reaction was clear.

On October 31 and November 1, Phillip had three mini seizures.
On Sunday November 2, however, the fifth day without medication, Phillip had three grand mal seizures; at 5 a.m., 9:30 a.m., and 2:00 p.m. At this time we took him to the ER and they medicated him intravenously to control the seizures. From that time they started him on Depakote ER, another anti-convulsant.
    Phillip had another EEG later that week, and other tests were scheduled later that month and for December. After several days of prayer and godly counsel from friends and medical professionals, we decided to transfer his medical care to a pediatric neurology group affiliated with Children's Healthcare in Atlanta.
    After November 2 and during the time Phillip has been on Depakote ER, he has not had any grand mal seizures. He continues to have mini-seizures about 3 to 6 times per week. These last about 45 to 60 seconds. During the mini seizure, Phillip has some sensory awareness and most of his motor control (he can make gestures and even perform simple motor skills), but he cannot hear clearly, nor can he speak, nor can he carry out rational thought such as reading a book. If we are with him, he signals to us that he is having a mini-seizure. On a few occasions, he has anticipated the seizure. Apparently, some people with seizure disorders can "sense" the onset of a seizure at times.
    Also, Phillip gets dizzy occasionally when walking, and he steadies himself and this quickly passes.

While under the care of the pediatric group, Phillip has had another EEG's, "sleep deprived," and another MRI. This MRI included an injection of dye and was interpreted by a pediatric specialist. This is the test which revealed that Phillip has a tumor of about 1.7 cm in his right temporal area, close to the surface. It is a slow growing tumor, having created an indentation in the bone. It is thought to be a "low-intensity" tumor, meaning the less dangerous type. The actual type of tumor cannot be known until it is tested or removed. In our case, there will be no preliminary biopsy; it will be removed.

Following are the tests and medical concerns related to the surgery.

Updates and Prayer Requests

Phillip York - age 13
Our desire is to honor God through our response to these circumstances. We recognize that everything we have is a gift from God. We trust Him with what He has given us.
    We thank God for guiding us through the many medical tests and consultations to get to this point regarding Phillip's condition. Phillip has a slow growing tumor of about 1.7 cm in his right temporal area. The plan is to surgically remove the tumor and some surrounding tissue, to eliminate not only the tumor but the area of the brain that is causing seizures. We have confidence in the medical team, their diagnosis, and their strategy for dealing with the tumor and associated issues.
    We are thankful that Phillip has not been injured during the time when he had the five grand mal seizures. The medication has stabilized his condition.

Warning: Medical details ☺
Phillip will begin his pre-surgery medical tests and procedures the week of January 5 at Children's Healthcare / Scottish Rite Hospital. January 5-7 Phillip will have an EEG under video-monitoring and a brain lab MRI. For approximately 48 hours, he will have electrodes pasted all over his head, secured with bandages The purpose of the video EEG is to determine if Phillip's seizures are focalized in the area of the tumor, and to determine what kinds of brain activity are affected by the seizures. In some cases, there is a tumor and a separate seizure disorder, but that is somewhat unusual. This test will involve reducing his anti-convulsive medication temporarily.
    The next test is January 13, also at Scottish Rite hospital. He will undergo a WADA test. The purpose of this procedure is to determine the function of each side of the brain in various mental and bodily functions, and specifically which side of his brain is dominant in language, speech, etc. It is a type of cerebral arteriogram, (a catheterization process, anesthetizing each side of the brain in turn) thus some danger is involved. This will involve a full day and some discomfort for Phillip, but we do not have to stay overnight.
    If Phillip's language and speech are left-side controlled as is the case with most right handed people (Phillip is right handed) then the surgery to remove the tumor will likely be simpler with greater chance of complete success.
    If Phillip's language and speech are right-side controlled then the surgery will likely be more complicated and will involve a longer hospital stay, approximately 6 to 10 days. The task of removing the appropriate tissue will be more sensitive and will be based on monitoring procedures that will take place during the hospitalization.
    We pray that this procedure provides the needed information to guide the medical team.
The surgical team will then meet on Jan. 14^th, and we anticipate that they will discuss our case and set a surgery date at that point. So Phillip will not likely have any surgery before the week of Jan. 19th, or possibly the week of Jan. 25th.
    Phillip is doing great, and he is not at all discouraged (except for being bummed out for all the time he has to spend with doctor appointments!). In fact, he was able to participate in a 2-day youth retreat over the weekend and had a great time. The upcoming procedures and surgery are not weighing heavily on him, and we are so thankful. We pray that Phillip will experience God's love and peace, and that during this time and afterwards he will be strongly aware of God's involvement in his life and his purposes for Phillip's life. 
    Of course that is an appropriate prayer for all of us.
We have been overwhelmed with all the prayer support from so many friends and family. Mostly, we praise God that we are experiencing such peace and strength from Him. Fear can creep in at times, but peace always follows - every time. Please continue to pray for Phillip's healing. Thank you all. 

February 2, 2004
We are at the hospital and we wanted to let you all know that we are doing great, have great news, and are praising the Lord for all He has done. Phillip's surgery was complete a little before noon. They were able to remove all of the tumor, and although we will not get the full pathology report until next week, there is every indication that the tumor is benign. Also, the seizure issue which was not completely clear going into surgery became much clearer to the surgeons during the operation. They detected seizure activity in some tissue around the tumor, which they removed. This removal of tissue should have minimal consequences and they are hopeful that this will correct the seizure disorder. Phillip is resting now, but has roused several times to talk. He is doing beautifully, and his only compliant is to say that he has a bit of a headache. Imagine that! We think if we've come through brain surgery with just a headache, we're doing just fine! Thank you for all your earnest prayers on our behalf. We are thankful beyond words, and rejoice at this good news and in God's plans for Phillip.
    (It was later confirmed that Phillip's tumor was a ganglioglioma, a benign tumor originating in nerve cells which accounts for less than 1% of total brain tumors, 4% of pediatric brain tumors. We give credit to Dr. Hudgens, because he predicted from his first visit that Phillip had either this tumor or another type of tumor.)

Feb. 5, 2004
We brought Phillip home from the hospital yesterday (Wednesday). He is doing super... he doesn't even look like a surgery patient! His energy level is somewhat low, which is to be expected, and he has just a bit of swelling, which was also expected. But he's just doing incredibly well, and we can't stop smiling! His incision is a bit tender, but all he is taking is tylenol and advil, and that takes care of any discomfort. Phillip is in fine form and is enjoying all the visitors that are stopping by to check on him. We return to Atlanta on Tuesday to get his staples out, and at that point they will determine when he should go back to school. 
    It's hard to believe that we are already to this point, and we continue to marvel at God's hand throughout this whole process. We are so thankful to have had so many folks to walk through this experience with us. We look forward in the coming days to taking time to reflect on all that has happened over the past few months. We can already see the beauty that God brings through all of our experiences, even those we would rather not go through. We are filled with gratitude. Thank you all.

Feb. 20
We do want you all to know how wonderfully Phillip is doing. His recovery has been so rapid and so amazing. He returned to school on February 11 and has just about caught up in all his classes. It has taken awhile for his energy level to return, but I believe we're just about back to normal in that regard. He has very few restrictions - - mostly in the area of contact sports or other recreational activity that would risk head injury. Some have asked about how much hair they cut for the surgery. The answer is none! Apparently that is something that has changed fairly recently at some hospitals, so Phillip was happy to not have a shaved head or a goofy haircut! Consequently, most of his incision is covered by his hair, so it is difficult to tell he has had brain surgery by looking at him.
    The healing process is still ongoing, but is proceeding beautifully. He does have some tenderness associated with the incision, and also related to the place where they cut through the bone to gain access to the tumor. He now has three small titanium plates in his head that will remain there. The expectation is that as the bone heals, it will grow around the plates. They do not expect any complication from that process.
    The doctors will follow Phillip very closely for awhile (appointments every 4-6 weeks for awhile), but then will taper off. He will have frequent MRI scans to ensure that everything is normal, but these will also be less frequent as time goes by.
    One of the most exciting things to us is that Phillip has not had a single "absence seizure" (also called mini-seizures or petit-mal seizures) since the surgery. Although his anti-seizure meds controlled the big seizures he had continued to have the smaller kind every 3 or 4 days up until the surgery. The doctors tell us that we will not know how successful we have been in that regard until Phillip is weaned from the anti-seizure meds (which will be several months from now), but the fact that he has had no seizures since the surgery is an excellent indication. This is by far the longest he has been seizure-free.
    We don't expect to have much news in the coming weeks, so our updates will be less frequent. We say it every time, but we are so thankful for all of you. This has been a unique experience, and we are all changed because of it. And we praise God for His presence, His comfort, His healing power, and His people who have so faithfully ministered to us.

June 4, 2004
It has been a long time since we have updated you on Phillip's progress since his surgery. Thankfully, Phillip has progressed so well that we have not had much news to send out. His check-ups have been uneventful; he has had no seizures since the surgery, and he has healed up beautifully. He resumed all normal activities very quickly, and if you were to see him now you would never imagine that this is a kid who recently had brain surgery! He goes swimming, has been to Six Flags, rides his bike, etc.  He even has a part-time summer job, doing routine cleaning and maintenance at our neighborhood pool.
    We had another follow-up visit this past Monday, and after reading Phillip's EEG the doctor believes it is time to begin tapering off the seizure medication. We are now underway with this process. Every few weeks his dosage will decrease, in hopes of being medication-free in 6 to 8 weeks. Of course, the concern is whether or not the seizures will return when he stops the medicine. As we have said before, we have good indication that the seizure disorder was corrected with the surgery, but sometimes there is damaged tissue that can continue to trigger seizures. We do not believe this will be the case, but we do ask you to pray for Phillip during this important time. There is really no way to know for sure if he can be medication-free until we try it. 
    Thanks to all of you for your love for Phillip and for us, and for continuing to pray for him as we approach what we believe will be the last hurdle.

August 13, 2004
Phillip has been completely off of the seizure medicine Depakote for two weeks now. He has completed six days of school, plus band camp and a host of other summer activities with no seizure symptoms of any kind. 

We give thanks to God that prayers have been answered and the medical procedures along with the watch-care of God have completely taken care of the tumor and accompanying seizures that Phillip experienced over the past eighteen months.

We have been anxious and very concerned at times during this ordeal, but these months have been such a sweet time for our family. Sometimes life is all the richer as we work through difficult times. We praise God for His wonderful blessings in our lives. Certainly, things don't always turn out as well as they did in our case. Since Phillip's surgery, we have had close friends and family members to face circumstances so much more difficult than what we have gone through. We have been inspired and encouraged to see how they have drawn near to God, and how His grace is overflowing in their lives as it has done so in our life.

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