More Evaluations

After seeing the radiologist last week I have an appointment on the 16th with another specialist and a video eeg on the 18th and 19th with an epilepsy specialist. The doctors are hopeful that the tests next week will help them determine what they need to do to stop or at least slow down the seizures.  I will update my blog I get news from one or both of these doctors.
The test on the 18th and 19th are in Tampa. Please pray for a safe trip for me and my wife.

Continued Improvement

As I indicated in my post late last week I had my MRI yesterday afternoon. I also saw my oncologist, but my radiologist appointment was rescheduled for next week. The doctor was please with the results of the MRI that showed more shrinkage of the tumor. Since my tumor has shrank so much, but my seizure activity has not he is ordering more tests and sending me to an epilepsy specialist to help identify what is causing the seizures.

We know that God has a purpose for sending us on this journey, but sometimes we get tired of having to walk this path and even question why. So please continue to pray for me and my family.

I am planning on updating the blog after my doctors appointment now scheduled for next Monday.

Change of Plans

We have had several people already contact us about my appointment yesterday.  There has been a change of plans, I will have my MRI and meet with both doctors on Monday the 25th. I will update everyone on Tuesday. Thanks again for your prayers and concern.

Joey

Second Update coming up

Sorry it has been so long since I've updated my blog.  I have been doing well for the most part since my last post.  But in the last few weeks I have been experiencing more headaches and having changes in my seizures. My next appointment is on October 22nd. I will send out a post letting you know what the results of that meeting is.
Please continue be in prayer for me and my family.

First Follow-up after Radiation Therapy

I had my first follow-up after completing my radiation therapy late last week.  I had a new MRI and met with my oncologist and radiologist. Both doctors were pleased that they could see signs that the tumor had gotten smaller but, the oncologist kept me on the steroid because I have recently had an increase in seizure frequency.  They also kept me on the same three medicines to control my seizures and set up my next appointment about two or three months from now. At that time they are hopeful that they can begin to take me off some of the medication I'm taking.  We are rejoicing over the results of this last visit and look forward to only better results.  We know that much of the results have come as a result of your prayers and our God's grace. We are thankful for your prayers and support, please continue to pray for us.

I will however send out another blog in two weeks to let you know how I'm feeling, and keep you updated on how things are going.

Radiation treatments finished

I had my final radiation treatment this past Wednesday.  I am looking forward being able to get some rest and not have to get up and go to the hospital each morning. After my final treatment I met with the Radiologist and he set up an appointment for me in one month.  He has also placed me back on one round of steroids to help reduce any possible swelling caused by the radiation treatment.

I am thankful to everyone who has constantly prayed for me throughout my illness.  Please know that my family still needs those prayers even when I do not update the blog on a regular basis.  I am also thankful that I had very few side effects from the therapy - some hair loss on the left side of my head to compliment the loss I was already experiencing prior to my illness, and some minor fatigue.  My hair should begin regrowing in 6 to 8 weeks and the steroid treatments have already reduced much of the fatigue.

Please pray for:

• My wife and son - that they would be able to handle the unique pressures that they are experincing
• The doctors - that they would have Godly wisdom in setting up my treatment plan
• Me - that I could continue to be the spiritual leader of my family and that we would all find rest and refuge in our God

Beginning Treatment

I started radiation treatment today! The plan is to treat five days a week for 27 sessions.  The first session today went very well, and was about 30 minutes long. The sessions will shorten as I progress through the treatment.  My doctors are expecting the first couple weeks of treatments to produce some swelling around the tumor causing headaches, fatigue and more seizures.  Later in the therapy I may experience hair loss. I will possibly have speech problems at some time during the treatment, but the radiologist said that I could have a net improvement in my speech.  This means that my speech may be better after the treatment than it was before I discovered the tumor.

1 down 26 to go!!!
The treatments are at 9:10 every morning, so please pray for me and the treatment team.

Proceeding with a plan

We have met with my oncologist and decided to proceed with radiation therapy.  We are hoping to begin my treatments no later than the week of May 24.  The treatments will take 5 to 6 weeks and the radiologist will determine how many sessions I will need.  Each session should last 10 to 20 minutes. Before I begin the therapy the radiologist will spend the time mapping out the tumor so he will know where he wants to focus the radiation and how strong of a dose to use.

Pray that the radiologist will have Godly wisdom in all the decisions he makes, and that I will respond well to the therapy he has prescribed for me.  Also pray that my wife and son will respond well to the added stress they will be under during the time of my treatment.

Second Opinions

There have been many new developments since my last blog.  I will try to briefly touch on each in this post and let you know how each of these changes play out during the next few weeks.

1. I received the recommended treatment plan from MD Anderson's Neuro-Oncology team.  
2. I have received a second opinion from Shands at the University of Florida on Monday the 12th of April.
3. I will also be meeting with a radiologist from MD Anderson in Orlando for his opinion on any radiation therapy at this time. By the end of this week we will have more information and more decisions to make.
4. Because my doctor has put me on a no work status for 12 months, I am no longer working.  I have spoken to a couple of people recently who said I did not respond to email that they sent to my work email.   If  you want me to receive email send it to josephbanken@gmail.com this is the only email that I have access to.
5. My son and I were able to visit my family a few days during his spring break.  This was nice since the onset of the cancer is what kept us from being with them at Christmas.
6. I was able to share part of my journey on Easter Sunday during the Altamonte Springs Community Easter service hosted by our church.

Please be in prayer as we continue to receive recommendations from several doctors and will need to make a decision regarding treatment within the next few weeks...sometimes the overload of information is overwhelming!

Changing Directions

I met with my doctor this week and he felt that the anti-seizure drug therapy was not working.  He stated that if it had been I would be having one seizure every three to four days.   Since I continue to have one to two seizures a day, my doctor was going to present my case to the oncology staff this morning.  The purpose of presenting my case is to get feedback from other doctors and see if they agree with his treatment plan.  His plan would be to treat with chemo and radiation therapies at the same time. He will give me the results of this meeting and the finalized plan by phone. I will then get a second opinion set up.

Prayer Request

• That the doctors will have wisdom and provide me with a good treatment plan
• That I would continue to do well with the medication I am taking
• That God would be glorified as I share my story as part of the worship service this Sunday.

Staying the course Part 2

I know I'm past due in sending out an update since I stated in my last posting that I would try to update you weekly and it has been over a month. I have received some more good news since my last post. The speech therapist said that I had shown remarkable improvement in my speech and language skills since being released from the hospital in  December and that I would not need any further follow up with her team.

I will not see the neuro-oncologist again until the last week of March, but based on my blood test and the problems that I've reported to his office my medicine has been changed several times. This latest combo has been working well, but I'm getting tired of having to bring my medicine with me every time we leave the house. I would also like to be able to drive although this will not be possible in the near future.  It looks like I'll have to arm-wrestle my wife's grandpa to see who gets to use the riding lawn mower.When I do see the doctor again we will be talking about chemo and radiation therapies, as well as setting up some second opinions.

Please keep my family in your prayers and thoughts during this time, and I will update the blog no later than the end of this month.  For those of you who are local our church is in charge of the community Easter service in Altamonte Springs.  The service is located at Cranes Roost in Uptown Altamonte and begins at 10:00 with breakfast starting at 9:00.  If you do not have other plans we would love to have you come to this community celebration.  If you have any questions about the service you can call the church at 407-339-8961.

Staying the course

Yesterday, we met with the neuro-oncologist for the second time and received excellent news! This time we reviewed the MRI of the tumor taken in December with one I had taken last week.
Some of the swelling around the tumor had been reduced by the steroids, but other than that it appeared the same - indicating that the tumor is slow growing.

In addition to reviewing the MRIs we discussed my current course of therapy which is using drugs (Keppra and Depakote) to try and control the seizures. The doctor was pleased that the addition of the Depakote at the last visit had produced favorable results. He was concerned that blood test showed that my platelet count had dropped from 200,000 in December to 100,000 (normal is between 400,000 and 150,000) when I was tested last week since we are only doing drug therapy at this time. Although the medicines I'm on can cause my platelet count to decrease it is much more common for platelet counts to decrease when a patient is on chemo or radiation therapy.

After going over the pros and cons of continued drug therapy versus more traditional chemo or radiation therapy we decided to continue with the drug therapy for a while longer. He added Dilantin to the drugs I am already taking. In addition to continuing the drug therapy the doctor is sending me to a speech therapist to try to help determine how the tumor is affecting my speech when I am not having a seizure (yes, this is the tumor and not just my lovely Louisiana dialect shining through - so don't hassle me with a lot of email about the way I talk).

Prayer Request

• Pray for my wife. She has not been feeling well, but has continued to drive both me and our son around, and only missed one day of work.
• Pray that our son will continue to do well in school and not be frustrated by all the changes to his routine.
• Pray 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.
• Pray that the doctor will learn the reason for the drop in my platelet count and be able to correct this.
  
• Pray that I would learn the lessons that God desires to teach me through this situation.
• Pray 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 also have some things I want to mention and some things to be thankful for

• Thanks to my coworkers who have helped purchased the restaurant gift cards. My son and I enjoy using them, but my wife has really enjoyed getting out of the kitchen one night a week. This has been a huge blessing to our entire family. THANK YOU!
• We are thankful that the frequency and severity of the seizures has decreased with the addition of the last medication.
• We are thankful that the tumor is growing slowly.
• Thanks Wayne for bringing the soup by last week when my wife was not feeling well.

My next doctor's appointment is in six weeks, and I will be better about keeping my blog up to date between doctor's visits since any are so spread out.

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.