tag:blogger.com,1999:blog-211260702011-11-05T11:26:06.945-07:00Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.comBlogger261100tag:blogger.com,1999:blog-21126070.post-1143037036589226062006-03-22T06:13:00.000-08:002006-03-22T06:17:16.636-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com7tag:blogger.com,1999:blog-21126070.post-1140040222551013732006-02-15T13:37:00.000-08:002006-02-15T13:50:22.596-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com3tag:blogger.com,1999:blog-21126070.post-1138930029670705172006-02-02T16:56:00.000-08:002006-02-02T19:26:02.420-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com3tag:blogger.com,1999:blog-21126070.post-1138838154741055612006-02-01T15:54:00.000-08:002006-02-01T19:45:03.616-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com1tag:blogger.com,1999:blog-21126070.post-1138762430126621922006-01-31T18:36:00.000-08:002006-01-31T18:59:24.900-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com1tag:blogger.com,1999:blog-21126070.post-1138755533311336352006-01-31T16:55:00.000-08:002006-01-31T17:00:49.000-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com2tag:blogger.com,1999:blog-21126070.post-1138674636996219522006-01-30T18:30:00.000-08:002006-01-30T19:22:01.183-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com6tag:blogger.com,1999:blog-21126070.post-1138592805851437902006-01-29T17:10:00.000-08:002006-01-29T20:07:28.903-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com1tag:blogger.com,1999:blog-21126070.post-1138500901500609902006-01-28T17:43:00.000-08:002006-01-29T17:09:25.506-08:00

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.

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com7tag:blogger.com,1999:blog-21126070.post-1138415378598214602006-01-27T18:17:00.000-08:002006-01-27T19:25:14.326-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com3tag:blogger.com,1999:blog-21126070.post-1138328524122547772006-01-26T17:52:00.000-08:002006-01-26T19:22:35.676-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com2tag:blogger.com,1999:blog-21126070.post-1138244643905851712006-01-25T18:59:00.000-08:002006-01-25T19:04:03.906-08:00

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!

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com0tag:blogger.com,1999:blog-21126070.post-1138239135613025262006-01-25T16:47:00.000-08:002006-01-25T18:47:36.166-08:00

Another beautiful day in Houston. We've got the routine down.Go to the clinic Get Marie's vitals Talk to Dr WeaverSay Hi to our new friends Vu takes some of Marie's blood while I practice preparing the drug bags, flushing Marie and programing BuddyVu teaches me something newI fight traffic all the way to our suiteToday, Dr Weaver upped Marie's dosage. No vomitting. I now have to replace one of

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com2tag:blogger.com,1999:blog-21126070.post-1138201030591452922006-01-25T06:48:00.000-08:002006-01-25T06:57:10.600-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com1tag:blogger.com,1999:blog-21126070.post-1138150163387286422006-01-24T16:45:00.000-08:002006-01-24T19:12:40.633-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com7tag:blogger.com,1999:blog-21126070.post-1138066301495953662006-01-23T17:03:00.000-08:002006-01-23T17:42:26.006-08:00

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.'

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com2tag:blogger.com,1999:blog-21126070.post-1138028233180841492006-01-23T06:57:00.000-08:002006-01-23T13:24:54.436-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com3tag:blogger.com,1999:blog-21126070.post-1137972666555767292006-01-22T15:06:00.000-08:002006-01-23T07:06:40.436-08:00

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 http://www.gcpchurch.org/. Unfortunately, Marie got sick again so we didn't get a chance to fellowship with them. Pastor Gene Franklin and his congregation were

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com2tag:blogger.com,1999:blog-21126070.post-1137893272579289452006-01-21T17:26:00.000-08:002006-01-21T18:40:53.236-08:00

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,

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com4tag:blogger.com,1999:blog-21126070.post-1137798063685932952006-01-20T14:33:00.000-08:002006-01-20T18:35:20.966-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com5tag:blogger.com,1999:blog-21126070.post-1137764904608759542006-01-20T05:43:00.000-08:002006-01-20T05:48:24.606-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com0tag:blogger.com,1999:blog-21126070.post-1137722357872377202006-01-19T17:57:00.000-08:002006-01-20T05:43:10.953-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com2tag:blogger.com,1999:blog-21126070.post-1137628755123545672006-01-18T15:58:00.000-08:002006-01-18T16:52:12.100-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com6tag:blogger.com,1999:blog-21126070.post-1137588882062885592006-01-18T04:25:00.000-08:002006-01-18T05:51:46.590-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com1tag:blogger.com,1999:blog-21126070.post-1137552933109191122006-01-17T18:52:00.002-08:002006-01-18T05:37:35.833-08:00

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

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com2tag:blogger.com,1999:blog-21126070.post-1137552017798817832006-01-17T18:34:00.000-08:002006-01-18T05:38:56.516-08:00

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.

Alfhttp://www.blogger.com/profile/10711452439053962736noreply@blogger.com0