Wednesday, March 22, 2006

Tribute to Marie

Marie never wanted to be the center of attention. Even in the last days when her right hand would not work and she needed help to do basic tasks, she was struggling to figure out ways to get the attention off of her and on to others. But today, we, her family and friends need to mourn our loss, so we will for a short time focus on Marie and her life.

This worship service was planned to be how Marie would have wanted it. First and foremost, Marie loved to worship our God, so today we will join her in worshipping the Triune God. Marie’s life was all about worship. She loved to play and sing old hymns and every morning when I woke up, I would see her lying in bed next to me reading her Bible or in prayer. I don’t know everyone or everything she prayed for but I do know that often she was praying for me and for her children.

Marie’s Early Years

Marie was born in Stuart, Florida on December 26, 1958 to Don and Rose Gore. Marie was the second of three daughters. Her sister Karen was the oldest and Suzanne was the youngest. She loved her sisters very much.

Marie was an excellent student and I have her report cards to prove it. They were all in her scrapbooks. Marie was so well organized. Many of you are in her scrapbooks as she documented her life.

In third grade, she won the county public school Tetherball championship an accomplishment that she was proud of and boasted about to us, often.

At an early age, she learned the joys of making schedules. When Suzanne started school, Marie was afraid that Rose wouldn’t know what to do with all her time. So, Marie made her a schedule. This was something she would do for the rest of her life.

Marie was active is Brownies and Girl Scouts with her mother and friends. Girl Scout became an important part of her life and she treasured that time. Music was also an important part of her life. She learned piano and sang in the chorus at school.


After graduating from Forest Hill High School in West Palm Beach, Marie spent a year in Holland as an exchange student. She stayed with two different Dutch families and she came to love them and they came to love her. She also learned to speak Dutch and traveled over most of Europe as a young woman.


When she got back to the States, Marie spent two years studying at Palm Beach Junior College before transferring to Florida State University. At first, she thought she would get a business degree but later she switched to Computer Science and Music.

That’s where I come in.

For me it was love at first sight. To Marie, I was her friend. She had her life all planned out down to the minute. She didn’t just make schedules for her Mom she lived her whole life by schedules. Marie was serious about her school work and she was learning to play the pipe organ, which took much practice. And I – I was a major distraction to her because I just wanted to be with her. Studying could wait – practice could wait. I would rather sit on the lawn and talk or ride our bikes - anything that would keep us together including going to church. God used Marie to call me back to Him.


After graduating from FSU, Marie got a job offer from the National Security Agency. She went to Maryland with her roommate and friend, Susan. I did not have a job and I followed her up there. My cousin Maria was attending American University in Washington, DC and she let me stay with her while I looked for a job. After a few week and a couple hundred resumes, I had a job and I moved into the same apartment complex with Drew who was Susan’s boyfriend from FSU. Drew had also come up to find work.


In 1983, Marie and I got married. As she walked down the aisle with her Dad, I thought she was the most beautiful woman I had ever or would ever see. I was wrong - each year she became more and more beautiful.

Marie and I never argued about money. Her father had taught her well. I remember one time; Marie called me at work to ask if we could afford a $30 lamp. In 1985, we bought a townhouse just outside of Columbia, Maryland. They wanted $85 thousand for it. As we talked about buying it - Marie cried. I told her to trust me and that we could afford it and so we bought it.

We struggled to have children at first but then came Leah and 17 months later Stefan. Marie quit NSA before Leah was born and spent the rest of her life being a faithful wife and mother. We attended Columbia Presbyterian Church and made great friends but our families were back here in Florida and we wanted our children to know their wonderful grandparents so back to Florida we came.

Back to Florida

I was hired by Harris Corporation and we attended here at Covenant Presbyterian Church until they planted Northside Presbyterian Church in Melbourne. At Northside, Marie played the piano during our worship and served those who had needs. Her ministry was unassuming. She never led any large ministry but she was there for people who needed a friend and did the simple things that often get overlooked like cleaning someone’s house or visiting a friend that can’t get out. She would take our daughters along with her and in this way she showed them how to be godly women.

We had another child Tara and then we adopted Tomas when he was 7 months old.

Marie homeschooled all her children and did a fabulous job. She learned what she didn’t already know and of course they each had their own schedules with chores and school assignments.

I was never the husband I should have been but Marie always forgave me and she loved me.

The Brain Tumor

During the summer of 1999, Marie had a seizure while on a Mission Trip to Miami, Florida. She was taken to Mercy Hospital and given a battery of tests. The MRI indicated evidence of a tumor. The doctors recommended a wait-and-see approach. MRIs were done every 6-12 months.

In 2001, the MRI indicated some growth and Dr. Tamargo from Johns Hopkins recommended a biopsy of the lesion. The night before the biopsy, I was sick from fear but Marie showed no fear as we spent the evening walking around the Inner Harbor in Baltimore. The biopsy indicated she had an inoperable, low grade astrocytoma lesion. Again the doctors recommended a wait-and-see approach.

Marie’s Last Year

During her last year, Marie was able to do what she always loved to do - travel. All this was done before we knew that it would be her last year.

Marie and her Mom took Leah and Tara to Holland to see Marie’s ailing Dutch mother, Mrs. Branderhorst. It was a special time for them. The week after Marie and kids got back Mrs. Branderhorst went to be with the Lord.
Next, we went to South Carolina for the Fernandez family reunion followed by a trip to Jackson, Mississippi to visit Belhaven College and her best friend from college, Andrea. It must have been close to 20 years since they had seen each other but seeing them together again it was as if they were still back in college. On that trip, we also visited our friends the Martins in Monroe, Louisiana and worshipped at Auburn Avenue Presbyterian Church.

Next, we went to Idaho and visited with our friends the Hills, we attended a history conference and worshipped at Christ Church. Marie had been blessed so much by the teaching of Pastors Wilkins and Wilson and rejoiced in being able to worship with their churches.

Over Christmas, Marie’s parents took their daughters and families to Breckenridge, Colorado for a family reunion and ski trip. It was a sweet time together.

Our last trip was to Houston to see if God would heal her. There God blessed us with new friends some who were also battling cancer. We worshipped at Grace Covenant Presbyterian Church and again Marie rejoiced.

Marie’s Battle with Brain Cancer

Marie’s last battle with cancer started last Thanksgiving weekend. Marie suffered two seizures. Her seizure medication was raised and an MRI was scheduled. This MRI indicated growth and some enhancement. The doctors recommended radiation. Marie and I knew the prognosis was not good and that the radiation would only buy us a matter of months. We also knew if God wanted her to be healed she would be. Many people were praying and fasting for her during this time. So we decided to try an experimental drug therapy in hopes that God would use it to cure her. We spent 2 weeks in Houston and 2 weeks back home but time ran out and Marie past away last Monday at home.

Through it all Marie showed great strength and courage. Each day was special to us and our love for each other grew. I also started being the man that God always intended me to be and so Marie saw one of her prayers answered.

To Marie’s Children

Leah, Stefan, Tara and Tomas – Your mother loved you with all that was in her. She prayed for you constantly. She celebrated your victories and cried with your defeats. She wanted so much for you to love and follow the True and Faithful God. She rested on His promises. In Deuteronomy, God tells us

Therefore know that the LORD your God, He is God, the faithful God who keeps covenant and mercy for a thousand generations with those who love Him and keep His commandments;

Children - know this – God did not forsake your mother and he will not forsake you. She is now in His presence worshipping her Lord and Savior as she was created to do.

Your mother would want be to tell you to be strong and courageous, obey God’s law and serve the Lord, for he is our God and Savior.

My Charge to Her Daughters

Leah, Tara – You have been blessed with a godly mother. You’ve known her all your lives. She poured her heart and soul into who you are. So my charge to you is to do likewise and when in doubt on what to do with your own family – think - what would Mom do? Girls be strong and courageous.

My Charge to Her Sons

Stefan, Tomas – You too were blessed with a wonderful, loving mother. When you leave this family to start your own – look for a wife like your mother and you we will be blessed beyond anything you can imagine. So my charge to you is to honor your mother by treating all young women with the dignity due then as daughters of the King of Kings.

Last Monday, I found some love letters I had written your Mom before we were married. She kept them by her bed. So boys when you marry don’t do as I did rather continue to write your wives love letters. Boys be strong and courageous.

Thank You to Marie’s Parents

Don, Rose – I don’t think I’ve ever thanked you for Marie. She was your daughter first and a beautiful child of God when I met her. Every year I knew her she grew more and more beautiful. She loved you so much. Thank you.

To Marie

To Marie - In our 25 years together, you showed me glimpses of your soul and it was beautiful. I love you so much. - I miss you. - But I will not despair. I will continue the work we started in raising our children and I will hold on to our God for He is good and merciful.

Thank You to Our Family and Friends

Friends and family, two nights ago I woke up in despair and as I knelt down in prayer God told me that Psalm 116 was not only for Marie’s comfort but also for my comfort and encouragement. I want to thank you for all the kindness you’ve shown us. Know that Marie loved you and hold on to those sweet memories you have of her.

Wednesday, February 15, 2006

Anyone still out there?

If you're reading this then I must commend you for your tenaciousness since I haven't posted since we got back.

The first week back was rough. We were still dealing with the effects of the drug and trying to a routine going. Marie is now on 4 hour infusions and seems to be handling the infusions well. She is still struggling getting enough sleep which make for interesting conversation during the day.

Our church family is providing us with meals so I'm starting to lose my 6-pack abs and starting to carry a small keg again. Marie on the other hand has continued to lose weight which I don't think is a good thing. Maybe I should let her take her helping first. The meals are wonderful! Thank you.

Eau Gallie finally lost and they're out of the state championship. It was a good game. Eau Gallie lost 3-1 but they played well.

Thursday, February 02, 2006

Farewell, Aquarius, and we thank you.

Aquarius was the name of the Lunar Module which acted as a lifeboat for the three astronuats on Apollo 13 after an explosion knocked out power and oxygen to the Command Module. The astronauts spent 3.5 days in the Lunar Module conserving the 10 hours of reserve power and air in the Command Module. Since the purpose of the Lunar Module was to land on the moon and then return the astronauts back to the Command Module, it was not built to re-enter the Earth's atmosphere. One hour prior to re-entry, the astronauts crawled back into the Command Module and jetisoned the Lunar Module. The following words were broadcast from Mission Control in Houston 'Farewell, Aquarius, and we thank you.' Appropriately for us the name of the Control Module was Odyssey and after 2 weeks here in our lifeboat we're about ready to enter our own odyssey as we return home.

Tomorrow we checkout of the clinic and head to the airport. Doctor Weaver will give us an evaluation and treatment plan as part of the checkout. Saturday, I'll do the final post from Melbourne and give you the details from Friday. Thank you for all the support you've given us through your prayers, emails, posts, gifts, flowers, cards, ...

Eau Gallie won their soccer game with Dr. Phillips High School 4-0. Next game, Tuesday at Eau Gallie, 7:00. This game is the semi-final game to determine the regional championship. My sister-in-law's family in Tunsia has waited up all night to get the score. Since I'm sure you'll be coming to America for the State Championship game, the dates are Feb15 - 18 at Lockhart Stadium in Fort Lauderdale. See you then Hassouna and Valerie.

Wednesday, February 01, 2006

Some questions are better left unasked - Day 16

Marie was extremely tired today. After going through the tremors last night, I switched her over to the smaller doses. While the smaller doses are easier on her body, they require her to be constantly going to the bathroom. So last night, she was getting up every hour. It's important for you to realize how tired Marie was this morning because as we were waiting in the waiting room we struck up a conversation with Al and his wife. Al is an older man with prostrate cancer. At some point during the conversation, Marie said "So you're here with your father?" Al's wife nonchalantly said that Al was her husband and the conversation went on without any ackward pauses. They were called in first at which point I lost it. I couldn't stop laughing. In all fairness there was a huge difference in their age and Marie was fatigued. Tomorrow, I'm thinking of maybe asking her when is she due.

Marie and I went out to lunch today at the Taste of Texas restaurant. The food was both good and expensive. We have mainly been eating healthy stuff so this was a reward for me. I had a center cut filet (medium rare with a lemon pepper rub) that melted in my mouth. Marie had an herb marinated grilled chicken breast with grilled vegetables and a salad. You might be wondering why I spend so much time talking about food on the blog. Well, it's a Gore thing.

While Marie was resting this afternoon, I visited with our Amish friends. They gave me some of their homemade maple syrup. It is wonderful. Marie poured some on her yogurt and I made a maple burrito.

I've changed my reservations and Marie and I will be flying home on Friday. We'll be leaving Houston around 4:00 and arrive at Orlando around 7:10.

Tuesday, January 31, 2006

Groundhog Day - Day 15

It's starting to feel like Groundhog Day. Everyday we get up, go to the clinic, beat the air bubbles out of the bags, eat healthy stuff and then stare at each other till it's bed time again. Can you tell how much we want to be home? I'm going to look into flying home late Friday instead of Saturday.

We switched Marie back to the every 4 hour this morning to see if she could tolerate it now that she had been on it for 2 weeks. She can't. The tremors are back. Tonight, I'm going to reprogram the pump back so she's getting small doses again. Don't worry, I'm not playing doctor. I was told I could do it by Dr. Weaver.

Marie's right hand is getting better each day and until this last session she was looking great.

I finished the book titled The Burzynski Breakthrough. It was ok. I was looking for something more technical. But the book focused mainly with the court battles with the FDA. Last night, we went to a question and answer session at the Ramada. It was interesting.

More Get Well Cards

Thanks also to Ryan, Stefan, Tara, Marcus, Chase, Karley and Morgan. I'm feeling so much better.

Monday, January 30, 2006

Buddy gets a new name - Day 14

Today was another good day for Marie. She even had a bit more control of the fingers on her right hand. Marie still can't hold a pen, open a can of beans or wave like Queen Elizabeth but it is better. Of course, I mean Queen Elizabeth II. It would be a close competition with Queen Elizabeth I but Marie would win on presentation, since she still has skin on her bones. Marie was practicing waving while we were riding in the car and I can tell you it was not a pretty sight. I forced her to stop after 2 cars ran off the road in horror.

The constant infusion is working well and the doctor is increasing her dosage each day. On Wednesday, we're going to try going back to the every 4 hour infusions. The advantage of the 4 hour infusion is that Marie can get a break from Buddy. By the way, Marie has started calling Buddy by his full name Buddy D. Burden or Burden for short. It seems everyday Buddy gains weight and he becomes a greater burden to her.

We're spending less and less time at the clinic as I get faster. Marie is anxious to get home and she could leave now if only I could learn faster. I can't so we'll see you on Saturday. It was relatively slow at the clinic today and Marie and I got a chance to chat with Vo Nguyen. Forget how his last name is spelled it's pronounced 'win'. Vo is Vietnamese and he came to this country 15 years ago. He has worked at the clinic for 5 years and has a wife and 3 children. He said many things about China which I won't repeat because Google would have to censor it.

Eau Gallie High School will be playing Dr. Philips High School this Thursday at 7:00 at Eau Gallie High School for those of you who want to attend. Also, Wednesday Florida Today is suppose to do a piece on the soccer team.

Sunday, January 29, 2006

Beautiful Sunday - Day 13

Sunday was both beautiful and quiet. We went to church and stayed for their fellowship lunch. We met many nice folks including Rachel Franklin. Tara knows of her from the Sense and Sensibility Forum. She sews and teaches piano. After the lunch, they had an Unction service where the Elders and the Church prayed for special needs within the congregation.

We spent the rest of the afternoon with the Amish family at the Candlewood Suite Gazebo. Martin's in-laws came and brought one of Martin's sons and a sister-in-law. This evening they had us over for a hymn sing. They sang Psalms in German and other songs in English. Different folks led the singing. The leader would sing the first word in each stanza alone and then everyone would join in. The men were on one side of the room and the women on the other.

Monday night the clinic hosts an information and support session at the Ramada. If we find out anything interesting you'll hear it here first so stay tuned - same bat time - same bat channel. Can you tell I watched way too much TV growing up?

Marie had another good day. (Editorial comment: A good day is a a day that doesn't start with me entertaining the Houston fire department in a towel or cleaning couscous off the rug.) Marie was a bit tired due to the fact that we stayed up late visiting with Dave Price. It was great fun getting caught up with the comings and goings of the Price family.

Saturday, January 28, 2006

Rainy Saturday - Day 12

The switch we made yesterday to have Marie infused every 15 minutes has worked well. She slept better last night and the small infusions are not very noticible to her. She is not getting anymore tremors and seems to have more energy.

Today, we went to the clinic and got our two bags of antineoplastons and came back to the hotel so Marie could shower. The dressing got a little wet so we changed it. Marie then took a nap. After the nap, Marie and I ate lunch at the health food store. They have a mediterrainian sampler plate that's very good (Greek salad, taboulli, humous and rice wrapped in grape leaves). Finally, we went to the Mall where Marie found a couple of sweaters. After an hour of deafening noise we were ready to come home.

Our friend Martin is doing better also. Angie the 15 year old German girl is still very tired. Doctor Weaver suggested doing the constant infusion like we're doing but Ute said no. I don't believe she understood what the doctor was suggesting. After seeing Marie this morning, I think she will try it too. A new group of patients started last Friday. So far I've only met one. His name is John and he's from Jacksonville. He also sounds just like Bob Staples when he talks.

So things are getting better. We're ready to get back home.

Friday, January 27, 2006


Marie didn't sleep well last night so we're trying something different today. Previously, she was

We interrupt this regularly scheduled posting for this important announcement. Eau Gallie beats Melbourne High 1-0 to capture the 6A district championship. This is the first time Eau Gallie has won a district championship in soccer. Cody L. scored on an assist from Stefan F. Now back to the posting.

infused every 4 hours. The infusions lasted around 1 hour. By the end of the hour, Marie was not feeling well and sometimes would get tremors. Today, we programmed the pump to run every 15 minutes with the infusion only lasting 7 minutes. The only disadvantage is that Marie and Buddy can't be separated long. I learned to draw blood today and it wasn't as bad as I thought. I think it's worst looking at it being done than actually doing it.

Houston is a friendly city. As I drive through this sprawling metropolis, the native Houstoners - Houstonits - Houstonorians - whatever ... constantly give me a Hiddey-h0 cowboy welcome on their horn usually followed by some sort of funny wave.

This morning the Fire Chief paid us a nice visit. While I was showering, the fire alarm went off. Marie decided she wanted a soft-boiled egg so she put the pot on the front burner and then turned the back burner on. Unfortunately, I had put a plastic bowl cover on the back burner. The fire was all over by the time I put my clothes on. No way I'm coming out in a towel. No real harm was done except for that bad plastic burning smell that flooded our room. Yes, Marie has lost ALL kitchen privileges until she gets some sleep. The kids have been trying to take them away from her for some time now anyway.

Thursday, January 26, 2006

Ten days to go - Day 10

I'm having a difficult time being objective about Marie's condition. Last night, Martin had an hour long seizure before he was rushed to the emergency room. They found that the antineoplaston infusion had diluted the level of his seizure medication which caused his seizure. I see in his eyes the look of discouragement. It's hard for a man who has worked all his life to be stuck in a wheelchair having other people do things for him. Today I asked him about his farm in Ohio and he said "Now it's only 5 acres." I didn't press him for more details but I got the impression that it is now smaller because he can't work it or he had to sell part of it to pay for the treatment. The Amish do not use health insurance instead the community meets any needs.

So in comparison, Marie is doing well. Other than being tired, not being able to use her right hand and getting the tremors toward the end of the infusions, I think she is doing well. I don't want to minimize what she's going through it is tough, but you know whether she acknowledges it or not Marie is pretty tough too. I hope we can fly home a week from this coming Saturday, which is why this post is called Ten days to go.

By the way, I bought the book The Burzynski Breakthough by Thomas Elias. I'm working my way though it and will lend it to whomever wants to read it next. I'm not very far along so I can't really say much about it.

The Millers stopped by for a visit tonight. Joe is Martin's brother and Fannie, Joe's wife, brought us some homemade biscuits. The woman are working in the laundry room a couple of days a week at the hotel here to keep busy and earn a little money.

Wednesday, January 25, 2006

More Get Wells

I wouldn't want to forget Cale, Leah, and Abbey. The drawings were great and I didn't enjoy Jason's Deli w/ out you, Leah!

Another day in Paradise - Day 9

Another beautiful day in Houston. We've got the routine down.
  1. Go to the clinic
  2. Get Marie's vitals
  3. Talk to Dr Weaver
  4. Say Hi to our new friends
  5. Vu takes some of Marie's blood while I practice preparing the drug bags, flushing Marie and programing Buddy
  6. Vu teaches me something new
  7. I fight traffic all the way to our suite

Today, Dr Weaver upped Marie's dosage. No vomitting. I now have to replace one of her bags after her first infusion. She's up to 1100 ml of A-10 and they come in bags of 500 and 1000 ml.

The antineoplastons are delivered in a saline solution which makes Marie very thirsty so she drinks lots of water that causes her to get up constantly. All intake and output is recorded. If you hold too much water sometimes your blood pressure (BP) might go high. Marie does not have this problem. Her BP is alway low.

Our highlight of the day was opening one of the cards from the Sunday School kids. On one side was a beautiful drawing of Darth Vader and on the inside was Hebrews 13:8. Father of child to Elders must answer. The boy you trained, gone he is. Consumed by Darth Vader.

Eau Gallie wins again! Tonight Eau Gallie beat Vero Beach 1-0. Friday night they play for the District Championship against Mel High.

Get Well Cards

Thank you to Brooke, Chane, and Elizabeth for the lovely cards. The verses are so encouraging.

Tuesday, January 24, 2006

A beautiful day in Houston - Day 8

Hard to believe we've been here a week already. Today was gorgeous; sunny and cool with a slight breeze. After our clinic visit, we sat out and ate lunch at the Candlewood Suites Gazebo.

Each day we go to the clinic I practice preparing the drug bags and programming the pump. I'm starting to get it. Our nurses are Vu and Deborah. They're both very nice and hard working. I think Zeb, the two year old, is leaving and some new patients are coming tomorrow.

Marie has gone 24 hrs with tossing her couscous. My Tunisian sister-in-law pointed out that couscous is a delicious, Tunisian, national dish. Marie and her Buddy were spending too much time together so I put Buddy in timeout and Marie took a shower. She's hooked up again and things seem to be going well.

The Amish community were grilling hamburgers for dinner and invited us to eat with them. Three families came to support Martin Miller who's undergoing treatment. Martin was treated with the Gamma Knife but it made matters worst. He can not use his right arm or leg. I believe his tumor is in the same place as Marie's. I'm glad the doctor from West Palm sent us home. We were so disappointed at the time but I think it was for the best.

Monday, January 23, 2006

Mr. Mom - Day 7

Today I gave Marie 1/2 cc of Decadron, prepared her drug bags, cleaned the kitchen, did the laundry and the food shopping. Working at Harris is a whole lot easier than this and it pays better too!

Blog Police: 'Mr. Alf do you realize that blog-jacking is a federal offense? This blog isn't about you! I'm going to give you a warning this time because you have such a lovely wife. Blog safely.'


They've double Marie's dosage of Decadron in an attempt to stop the vomitting. She only vomitted twice today although she is currently fighting number three. We got out of the clinic around 1:00 and Marie has been lying in bed most of the day.

I found a fanny pack and a kid's backpack with wheels on it for her to carry Buddy. Currently she's wheeling Buddy around with her. Once she starts feeling better, I think she'll like the fanny pack.

Eau Gallie won their first district game tonight 4-0. After Stefan told me that they had won the game 4-0, I asked him "Did you score? Any assists?" His responses were "No - No. Dad - we won 4-0." I guess I deserve one of those parental Yellow Cards. Sorry Stef, well done and GO EG!

I want to thank everyone for their encouraging posts and emails. I can't answer them but I make sure Marie reads them.

Prayer Request

Marie's right hand has progressively gotten worse since she's been here. It started the day we flew out so we believed it was just stress. She has no strength in that hand. But it has been getting worse since starting treatment so maybe it's due to the swelling.

Her left neck mucles are very painful. I think she pulled something toting Buddy around. Buddy gains weight everyday (it's up to 6 1/2 lbs) and she has to carry it all day.

We're going out shopping for a backpack for her. Pray that this will help.

Sunday, January 22, 2006

Quiet Sunday - Day 6

Today started a bit rough for us but ended well. This morning we went to the clinic for our daily checkup. We got out in time to get to church. We found a wonderful church just outside of Houston called Grace Covenant Presbyterian Church Unfortunately, Marie got sick again so we didn't get a chance to fellowship with them. Pastor Gene Franklin and his congregation were very friendly and we met Dr. Shormann and his family. Our kids do Saxon Math and Physics so we have purchased instructional CDs from Dive Into Math and Science The CDs are great. Dr. Shormann explains the lessons well and is very popular with my kids so this was a big deal.

I got Marie home and called the doctor. They had me give Marie 1 cc of Dexamethasone Sodium Phosphate (Decadron) via her catheter. Marie started feeling better and I went out to clean the car. No jokes this time. Once is funny but four times including once in the car and once on the side of the road is not. The vomiting is a result of the swelling in her brain. Decadron is a steroid that reduces the swelling i.e., oedema.

We continue to know God is in control and He will do whatever pleases Him.

Tara mentioned that some folks had asked about a mailing address so here it is.

Candlewood Suites
10503 Town & Country Way
Houston, TX 77024

Attn: Marie Fernandez Rm 104

Saturday, January 21, 2006

Buddy the newest addition to the family - Day 5

We've named the bag Buddy. I asked one of the other patients what she calls her bag to which she replied "You don't want to know what I call this thing." We left it right there.

Marie slept as well as she normally does. Buddy was right there between us. Marie hooked up to Buddy, and me to my sleep machine. Talk about a family bed - there's no room for one of our little ones to climb in. Sorry, Stef.

Speaking of Stef, Eau Gallie won again! They beat Astronuat High School 4-0. Stef did NOT get a yellow card; that's probably because Pastor Jeff and most of the Youth Group ( that would be you Daniel) was there.

We went to the clinic this morning to get Marie juiced up again. They increased her dose. It didn't take too long and we got a chance to meet some of the other patients. There is a 15 year old German girl named Angie. They tried chemo but it caused the tumor to grow faster so their doctor in Germany told them to come here. There was another older German couple and a couple of older American couples.

After the clinic we went to eat at the Health Food store and then went to Wal-Mart. I'm sorry to say that Marie 'tossed her couscous' in the parking lot of Wal-Mart. For those of you who don't know what couscous is, I've attached a link. We don't know if it was due to the increase in med's or the steroid she's now on. The steroid is taken to reduce swelling in the brain. As the tumor dies the body tries to protect the brain which causes the swelling. (Marian Brown please correct me if I say anything stupid.)

Since we've gotten some questions about the port, I'll talk a little about it. It's really a Hickman, Leonard and Broviac central venous catheter. This catheter is installed under Marie's collar bone on the right side. It was inserted into a major vein via a small incision. It was not done blindly rather they used an ultra sound machine to local the vein and then an x-ray to verify its placement. Marie will have to keep it covered with a dressing until it is removed to prevent infection.

I had an eye exam today and the optometrist told me my cholesterol was high. Okay I get it - There's a conspiracy to get me to eat taboulli and couscous which is going to be harder to do now that I've seen what it did to Marie. You know couscous looks better on the parking lot than on my plate.

After the exam I went to Wal-Mart to pickout a stylish, yet manly frame. Manuel looked at my name as I was paying for the frame and asked me if I was Hispanic. I said 'Yes' to which he replied 'I thought you were Caucasian.' He then looked at Marie and asked if she was Caucasian. Manuel was obviously Mexican but he had died his hair blond and had blue contact lenses on. I stood there thinking 'Manuel - being Caucasian isn't all it's cracked up to be. They get sunburned and brain tumors.'

Friday, January 20, 2006

Paging Nurse Al - Day 4

The Nutritionist was very pleased with Marie's current diet. She only suggestd minor alterations to it e.g., a bit more protein. She did recommend organic food and limiting canned food i.e., beans. Marie's blood work was excellent. The blood work indicated that her liver was functioning well. Some other things she suggested was to keep the cell phone away from her ear, use gloves while administering Tilly's Frontline, don't charge the PDA by the bed, etc.

After getting positive reinforcement on her dietary regimin, Marie turned the spotlight on me. I failed in just about every imaginable way. Fortunately, I don't have cancer just high cholesterol and blood pressure.

The next 4 1/2 hours were dedicated to training on the catheter and pump along side a nice Amish family. We keep running into them everywhere....they are even staying at our hotel. There is also a 2 year old boy with his family who has been through it all (surgery, radiation, ...). His doctors have thrown in the towel so they're at the clinic.

I was also trained on changing Marie's dressing, flushing her catheter, and injecting drugs via the catheter. Next week, I get to learn how to draw blood via the catheter. Whoo-hee, I can't wait!

Marie carries a camera-case looking bag which contains the drugs and the pump. The drugs are administered every 4 hours. She can disconnect in between but we're not to that point yet. So she'll carry it all weekend. For now, remembering to take it with her when she goes anywhere is the biggest problem. Sleeping with her buddy should be an experience tonight.

Get well cards

Thank you to Kassidy, Kaely, and Avery for their encouraging notes. The Bible verses calmed my fears after a restless first few days.

Thursday, January 19, 2006

The Impatient Patient - Day 3

We're starting to catch on to process. You rush around in order to wait. Today, we got to the Houston Medical Imaging at 1:00. Three waiting rooms and 4 1/2 hours later Marie was done. I think there's some kind of Texan law that doesn't allow a patient to remain in any one waiting room for more than 2 hours cause they kept moving us.

The catheter is installed and tomorrow we will meet with the Nutritionist at 9:00 and then start the treatment. They'll also start training us on the care and feeding of the pump. I suspect we will be there all day.

I spoke to Dave Price this morning. The old Northsiders will remember that Dave was one of our first Elders at Northside. Dave and Laura moved to Arizona a while back with their kids. Dave and Laura both went to school in Houston and will be visiting Laura's parents next week. Marie and I hope that we'll be able to get together with them while they're here.

Today we ate at two different health food stores. Marie gets her big glass of carrot juice and some funny food that I can't spell. The food is not bad but I get pretty hungry a few hours later. With all this health food I'm eating I should look like a regular stud-muffin when I get back.

She has trouble typing especially on my laptop but she sends her love.

Wednesday, January 18, 2006

Waiting, waiting and more waiting - Day 2

We got to the Burzynski Clinic at 12:30 and after filling out some forms we met Dr. Szymkowski. She drilled Marie on her medical history and told us what would happen if she was accepted. She said that Dr. Burzynski would look at the MRI and PET scan and determine whether or not Marie was eligible for the clinical trial (BT-9). She then left for what seemed like hours as we waited, waited and waited. Finally, she stopped by and told us that Dr. Burzynski would be in to see us in 2 minutes (HST). Houston Standard Time (HST) runs a whole lot slower than you can imagine. 10 to 15 minutes later Dr. Burzynski walked in and told us the good news. Marie was accepted!

More paperwork was initialed and signed and finally they releaved us of a ton of money. They're going to submit the cost to the insurance company but there's no guarantee that they will pay since the treatment is experimental. By the way my back is feel a ton better. A coincidence? I think not! A heavy wallet is tough on the back.

Marie was then poked, prodded and relieved of numerous fluids to be used as a baseline. Tomorrow Marie gets a port installed and an xray done and then on Friday she starts the treatment. The good news is that we will only have to stay 2 weeks following the start of treatment.

Marie will have to have blood work done 3 times a week for the first 2 months and then it drops down to twice a week.

The clinic smells like a boy's locker and I suspect we're going to have to get use to it. Don't be suprised if you see Marie walking around with an air freshner around her neck.

Arriving in Houston - Day 1

Our flight from Orlando was going fine until we got near to Houston. Due to wind shears at the airport, we were put into a holding pattern for over an hour. The pilot talked about potentially having to fly to New Orleans to refuel. Fortunately, the winds died down a bit and we were able to land.

After picking up the rental car we pulled out our directions from Debbie McFadden and hit the Houston highways. Debbie is Sue Havel's sister. Debbie lives in Houston and has been a tremendous help to us. She scoped out the various extended stay facilities and provided us directions on how to get to there from the airport. Getting there was harder than you would think. The quarters we were given at church were a big help. Thanks! Debbie's directions were fabulous. We didn't make a wrong turn once. I can't really describe the highway system here so I'm going to take a picture of it and post it here later.

The Candlewood Suites are wonderful. As we walked in to register, a young woman was dropping off a few presents at the counter. As she was walking out she looked at us and asked if we were the Fernandezs. It was Debbie. She says she doesn't look like Sue but after a few minutes you know they're sisters. On top of everything she has already done for us she brought us flowers, household stuff, cards, crossword puzzles, pens and hand written maps to the clininc and places to eat and shop. Thank you Debbie!

Marie and I went to Cafe Express for dinner. Marie had the Veggie Chef salad with a glass of water. I had the Chilled Shrimp Campeche with Avocado and Chipolte Sauce and the Spinach & Penne Pasta salad. The salads were wonderful. The Black Currant Tea was also very good.

Eau Gallie played Bayside on Tuesday and won 4-3. Stefan had two assists.

Tuesday, January 17, 2006

Christmas Letter 2005 written by Tara

I’m going to be completely honest and say that writing the Christmas letter was difficult for me this year (one of the reasons you are receiving it in mid-Jan). The last couple months of the year brought some unhappy events and it was difficult to get the balance between the fun, event-filled first 10 months, and the last, more sober 2 months. Because it’s impossible to mesh the two, Mom has written the first paragraph which details the last couple months, and the rest the letter will be written by me.

If you’ve followed our lives for the past 6 years you know I’ve struggled with seizures due to a “lesion” on my brain. I’ve always called it that because the word tumor sounds, well, terrible. Another 2 seizures over Thanksgiving, after being seizure-free for 5 years, forced me to have my annual MRI earlier than planned. The tumor, which I’m forced to call it now, actually showed the type of growth which indicates malignancy. It is inoperable because of location, and any attempt to remove it would leave me with severe speech and motor skill deficiencies similar to the mild ones I encountered after my biopsy in 2000. We hesitate in doing radiation and chemo quite yet, leaving that as a last resort, desiring to pursue other options first as God leads. Al worked tirelessly during our vacation to CO and researched hundreds of other treatments. I’m praying that my first choice will accept me. I am awed by God’s protection in allowing me to get home, as I was driving with Leah in the car right before my seizure, and allowing my whole family to be there to care for me. I am awed by my children’s willingness to pray with and for me, and for the husband He has blessed me with. My father, who would give his live to bear this for me, gives me a glimpse of what Christ did for us through his death. A dear friend pointed me to Psalm 116, which speaks of David’s hopelessness and despair as being the real enemy, not physical death, and to that end I will live. To God be the Glory. ~Marie

Well, we’ve certainly had a distinctive year. I can’t remember what happened in the early parts of 2005 except that we had wood floors installed in February. They are so beautiful we can almost forget the back-breaking work of chipping up the tile, living on cold, dirty concrete floors for a month, trying to get to other rooms in the house by weaving around all the misplaced furniture and attempting to complete schoolwork despite the loud workmen. Almost.

Mom, Leah, Grandma, and I had a trip the Netherlands in May to visit the woman who Mom stayed with as an exchange student back in ‘76. Dad had been encouraging Mom to go for the last 10 years, so our time spent with “Mama Branderhorst” holds a special place in our memory as she passed away a few weeks after we returned to the States. We were so thankful that God gave us the opportunity to see her. I am also thankful to Leah who saved my life seconds before a tram would have run me over. The most embarrassing part was that we had to ride that tram and the driver glared at me. After that, I was more careful to be aware of all moving vehicles and where they were in relation to me.

Our summer continued with a trip to Hilton Head, SC for a family re-union with Dad’s side of the family. We also had two delightful houseguests (at different times) during the summer, one being a young lady who dwells in Maryland, the other a guy from (England? Great Britain? The United Kingdom? We had this discussion, and I’ve already forgotten which is proper).

During August, the whole family traveled to Idaho for a history conference and to visit some dear friends. We had some time to kill while we were traveling, so my parents decided we should all visit the fish hatchery. This was probably the highlight of Mom’s year. The rest of us . . . let’s just say we were eager to leave. We also did a quick trip to MS for Stefan to look at Belhaven College (quick? Would you consider 18 hours in the car quick?)

The boys are still involved in soccer, the girls in music. Stefan is playing soccer for the local high school, and duel enrolled at the college as a homeschooled student. Leah is taking violin and cello classes at the college (she’s a senior), and has taken on the role of teacher, instructing two little kids on the violin. I have switched harp teachers, and I’m extremely reluctant to tell everyone how far away my teacher is. I am incessantly grateful to my parents who fund this hobby and drive an hour and a half to my teacher, wait around for my two hour lesson, and then drive all the way back. Do the math; harp lessons are an all day event.

Our year ended with a trip to a ski resort in Colorado for a family reunion with my grandparents, aunts, uncles, and cousins (18 people in all…thanks again Grandpa!). It was the first time that many of us had seen snow. We had so much fun trying to run through snowdrifts. Since many of us had never skied, we took a class the first day. The poor instructor had to help me up so many times. He was worried about Leah at first because she fell on the people mover, the tow-line, and the ski lift. Amazingly, she didn’t fall very often on the slopes. During one of the many times Stefan fell, he injured his thumb. We haven’t figured out yet how he managed to fall and hurt his thumb. We could have understood if it was arm or a leg. I think Tomas’s highlight of the trip was after he threw up in the snow at the ski class. He got to ride in a snowmobile back to the lodge.

This is the short version of our year, but with Mom’s paragraph I think it’s the longest letter. Under the circumstances I didn’t think you’d mind. We are thankful for each and every one of you, and we ask for your prayers, especially during this difficult time.

In the beginning ...

During the summer of 1999, Marie had a seizure while on a Church Mission Trip to Miami, Florida. She was taken to Mercy Hospital and given a battery of tests. The MRI indicated evidence of a left parietal frontal lesion. A wait-and-see approach was recommended by my doctor. MRIs were done every 6-12 months.

In 2001, the MRI indicated some growth and Dr. Tamargo recommended a biopsy of the lesion. The biopsy indicated she had a low grade astrocytoma lesion. Dr. Tamargo recommended monitoring the lesion via MRIs.

For the next 4½ years, she did not have any problems except for one seizure when her Dilantin level was too low.

She switched from Dilantin to Lamictal 100 MG twice a day about 8 months ago.

Over Thanksgiving weekend, she suffered two seizures. Her Lamictal levels were good. Dr. Gold raised her dosage to 150 MG twice a day and scheduled another MRI. The MRI indicated some growth and some enhancement. After reviewing the MRI and in agreement with Johns Hopkins Oncology, Dr. Tamargo recommends starting radiation therapy.