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

EAU GALLIE WINS DISTRICT - Day 11

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.'

Oops.

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 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 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 http://www.diveintomath.com/. 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