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. http://www.gourmetspot.com/ask/couscous.htm 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.