A hard week

I have not gotten a post off any sooner because this past week was harder on me physically than any other since I was diagnosed on December 18th. I took my last dose of steroid on Tuesday. This along with the continued increasing of the dosage of anti-seizure medication led me from not being able to sleep for more than three to four hours at a time at the beginning of the week to not being able to stay awake for more than five to six hours at once by the end of the week. The good news is that the doctor expected me to have this reaction and said that I should be back to a normal sleep pattern by the end of this week.

I have blood test the next two Tuesdays and a MRI on the second Tuesday. My follow-up with the doctor will be on the week of February 15th. I will update the blog no later than the day following my doctor's visit.

Please continue to use the prayer request from the last post since there has not been much change since then. Thanks again for your faithful prayers and support.

Your Prayers have been Answered

I had my first follow-up appointment with the neuro-oncologist yesterday afternoon, and short of him telling me that the tumor had disappeared the news could not have been better.

• First, the results of the 1p/19q DNA test were a double deletion meaning that my tumor does not contain either of these markers. This is important because if I have to undergo Chemo or Radiation Therapy the absence of these markers means that my tumor will respond more favorably to the treatment.
• Second, based on my current response to the anti-seizure medication the doctor has decided to continue this course of treatment for now making modifications to my medicines over the next 3 weeks at which time I will follow up with another visit to be reevaluated. Currently I am experiencing one minor focal seizure a day. This consist of a mild tingling on the right side of my face for 30 seconds to 1 minute in length. Then every two to three days I have a slightly larger seizure that consists of tingling on the right side of my body and slurring of my speech. These typically last 2 to 3 minutes. The doctor’s goal is to completely eliminate these seizures through the use of anti-seizure medication. He is increasing the dose of my current anti-seizure drug (Levetiracetam) and adding another (Depakote).
• Third, the doctor feels that I am no longer benefiting from the use of the steroid. This drug is the one responsible for all the negative side effects I have been experiencing, so beginning today he has reduced my dosage to 1 mg a day and I will be able to discontinue its use next Tuesday.
  

I will be having weekly blood testing done each Tuesday for the next three weeks so that the doctor can see if the anti-seizure drugs are having any harmful effects on my liver or kidneys. On the last Tuesday, February 9th, I will also have an MRI of my head so the doctor can compare it to the ones taken while I was in the hospital. I will then have my next follow up on Monday the 15th of February.

As I have mentioned before, this journey that my family began so suddenly on December 18th is not the one we would have chosen, however God has been with us every step of the way. His blessings are clearly evident as you read about my journey through this blog. I am so thankful that He has such a great love for me and my family! I am also thankful for the continued love, prayers, and support of our church family, family both in Orlando and Louisiana, friends, and neighbors.

In closing I will leave you with a few prayer requests, but before we go to God with these request please join with me in praising and thanking Him for blessing my family so much during this difficult time and providing me with these incredibly favorable results. The request are as follows

• That the doctor will quickly find the correct mixture and doses of drugs that will eliminate the seizures with minimal or no negative side effects and allow me to get back to a normal routine.
• That my wife and son will continue to be able to focus on work and school, and their performance would not be negatively impacted by my medical condition and treatment.
• That I would learn the lessons that God desires to teach me through this situation.
• That those who hear about my journey and do not yet have a personal relationship with Jesus Christ would be drawn to Him through this testimony
  

I will send out another post sometime early next week.

Stress Relief

With my first follow-up appointment quickly approaching and the potential of beginning a course of therapy that could limit my ability to travel, My family took the advantage of the Martin Luther King, Jr holiday weekend to take a vacation in Atlanta. We arrived late Friday and ate at a local grill called Hudson's Grill. Saturday we explored the Georgia Aquarium including a limited time exhibit about sharks. We took a brake from the Aquarium to have lunch at the Hard Rock Cafe. Sunday morning we went to Snow Mountain, a seasonal attraction that is part of Stone Mountain Park. At snow mountain my son experienced snow for the first time. He was able to make snow balls, a snowman, and a mini igloo, for the snowman of course! We raced down a 400 feet long tubing hill. After a morning of playing in the snow we had lunch at the Commons Restaurant located at the golf clubhouse in Stone Mountain Park. From there we had enough time left to visit the World of Coca-Cola located in Downtown Atlanta. This museum contains the history of Coca- Cola, has it's own bottling plant and allows you to sample various Coca-Cola products from each continent.

This was a quick, but much needed get-a-way for my family. We remain grateful for the love, support , and prayers that each of you continue to show. I will be sending out another post either later today or tomorrow informing you of what we find out from my doctor.

Weekly Update

Last week was a learning experience for my family since my wife returned to work and my son went back to school, while all I had to do was stay with my wife's grandparents. The first few days were challenging trying to get them to work and school on time. It is now the beginning of the second week and we are finding a good routine. The bitter cold weather also created some challenges for us, but tonight should be the last of the overnight freezes and tomorrow begins a major warming trend. As for my health I am having fewer of the focal seizures, but the steroids are still preventing more than 3 to 4 hours of sleep a day. Below is a list of my continuing prayer requests.

• That the 1p and 19q markers are not present in my tumor - double deleted is what the doctor calls it
• That the medication will continue to control my seizures. Currently I am having 1 to 2 focal seizures a day. These consist of tingling and numbness on the right side of my face and down my right arm usually accompanied by slurry speech.
• That I could get more that four hours of sleep a day.
• That my son would be able to focus on school and continue to do well academically. He has semester exams on Thursday and Friday morning from 8 - noon.
  
• That my wife won't get tired of taxiing us around since I can't drive, and that she will be able to perform her job well with all this new responsibility she has at home.

I have a praise related to request for my short-term disability insurance. It has been approved!

Neurosurgeon followup

I had my first follow up appointment today with the surgeon who performed the biopsy. However before I continue with the update from the doctor I wanted to share some additional information with you that I have only discovered over the past couple days.

When my parents (who live in southwest Louisiana, where I grew up) were told of my condition on December 18th they began trying to get a flight out to be with me. They could not find any flights out of Houston that day, but when one of my cousins heard about this she was able to get them on a flight that night. She and her husband also then took the time to drive my parents to the airport, thank you so very much for all that you did for them in such a difficult time. I also understand that when my extended family and friends learned about my condition many of them generously gave money to my parents to help with this unexpected and expensive trip. Thanks for all the love that each of you have shown to me and my family during this time. Also I wanted to thank my parents for coming to Orlando to be with me and staying for Christmas since the plan was originally for my family to be in Louisiana. I enjoyed our time together even under the unusual circumstances. I also want to thank my wife's grandparents who are allowing me to stay with them during the day because I can not stay by myself. Without them, my wife would have to make alternative work plans in order to stay home with me.

Back to the update - the doctor discussed my medications with me and then examined the biopsy area determining that the staples could be removed! I now have no further need of his services which is very good news. My next appointment will be with my neuro-oncologist on January 21. He will have the results of my 1p/19q test and we will be setting up a treatment plan at that time. In the meantime I have a few prayer requests.

• That the 1p and 19q markers are not present in my tumor - double deleted is what the doctor calls it
  
• That the medication will continue to control my seizures. Currently I am having 2 or 3 focal seizures a day. These consist of tingling and numbness on the right side of my face and down my right arm usually accompanied by slurry speech.
• That I could get more that four hours of sleep a day. This is a side affect of one of the medications, but the good news is the doctor told me today that I could use an over-the-counter sleep aid. Pray that this will help.
• That my short-term disability insurance would be approved soon.
• That my son would be able to focus on school and continue to do well academically (he returned from Christmas break today)
• That my wife won't get tired of taxiing us around since I can't drive, and that she will be able to perform her job well with all this new responsibility she has at home.

Thanks again to everyone for your concern, prayers and support. My next update will probably be posted early next week.

Details About my Illness

Yesterday I took a little time to place my first blog on the web in order to set up a forum for my friends and family to be able to stay informed about my illness. Before I go any further I do want to clarify that although I have referred to this as MY Journey I do not travel this path alone, and this illness does not just affect me. My wife and son's lives have been impacted just as much as mine and they will be experiencing the struggles of this illness with me every step of the way, and I am not able to adequately express my love and gratitude to them for their support.

Since the onset of my symptoms on December 18th we have received an overwhelming amount of love and support from

• our extended families
• our church family
• our friends
  
• our neighbors and coworkers

Because we are continuing to receive so many inquires as to my condition we felt this would be the best forum to use to provide quick and easy access to anyone who wants to keep up with my current condition.

In my first post I gave a brief description of events since December 18th, but now I will go back and fill in some details for those who are a little more curious. Those of you who already know me should know that I am a disciple of Jesus Christ and strive to live a worthy Christian life. As I relate the details of the events of December 18th I believe those of you who share my belief in Christ will see more than just a remarkable set of coincidences.

On December 18th my day began normally and I had been working from my home office. Just before I was going to leave my house for an appointment around 11:00 I felt an electrical sensation up and down the right side of my body. I went into my office and dialed 911 from my work cell phone. By the time the operator answered I was unable to respond. First responders were dispatched by Seminole County and they were able to narrow the call down to my street. I am told from there they went to two other houses before arriving at mine. They were able to gain access into the house and began administering first aide. One of the first responders then took the phone that I had placed the call from and called the last number dialed in order to try and locate my next of kin. When the receptionist from my work answered she was asked if anyone at that location knew who I was and how they could locate my next of kin. My mother-in-law was standing at the receptionist desk when that call was received and she was able to give them my wife's contact information. My wife was notified as she was out on an errand with a coworker. The coworker was able to drive her back to our house.

From the house I was transported to South Seminole Hospital, and then quickly transferred to ORMC in Orlando where I began receiving treatment from a team of neurologists. After a weekend in which I don't really remember much detail the doctors determined that I needed to have a left stereotactic brain biopsy which was performed on December 21st. This lead to the diagnosis of Oligodendroglioma - grade 2. At that point in time the doctors began consulting with a neuro-oncologist from MD Anderson. He along with the rest of my treating team was able to place me on medication that has limited the number and severity of my seizures allowing me to be released from the hospital on December 26th.

I have not experienced more than five seizures in one day, and typically only have one or two. These are now limited to one to two minutes of either slurred speech, tingling or numbness on my right side, or a few seconds of uncontrollable drooling. I am able to lead a fairly normal life at this point with a few restrictions such as not driving (of which I am sure my friends and family in Central Florida are thankful;) I can also not be alone in case I experience a more severe seizure, and because of this I am not currently able to perform my job. So when my wife starts back to work next week I will be staying with her grandparents during the day.

In closing my family once again is so very thankful for all the love and concern that has been shown to us during this time. Thanks to all who took time to visit me in the hospital, and most of all thanks for all the prayers that you have offered for me and my family. Please continue to pray for the doctors as they plan out my long-term treatment plan, and as a part of that be in prayer for further testing being conducted on the biopsy sample that was taken. The specific test is known as a 1p/19q test. If neither of these elements are present in my tumor I should respond better to the available treatments and even have more treatment options. My first follow up is on January 4th with the neurosurgeon who performed the biopsy. He will be checking the incision site and possibly be removing the staples. I will send out an update after that appointment.