So...I do occasionally have sane rambles. (True story. Ask my husband.) In an attempt to unscramble them and process intelligently, I sometimes write them down. And since I enjoy writing, and people have told me I should do it more, I decided to share some of my thoughts.
But not here. This, so far, has been pretty much a place to help people laugh, and pray for us, and remind those who don't have kids what they're in for if they get them. (I know, I know, that's already pretty random, but anyway...)
So, I have decided to blog on our ministry website. And if you are interested in reading said ramblings, I invite you to come read them!
You're welcome.
Here's the link:
http://www.heartthirst.com/blog/
Please feel free to comment, encourage, criticize (but please be nice), or otherwise ruminate along with me. I appreciate your input.
(Well, maybe not the criticisms...or at least only the nice ones.)
Wednesday, December 18, 2013
Sunday, December 15, 2013
One unwise king from the east
"Skyler! Why are you all wet?"
He stood in the bathroom in his soaked pajama shirt, grinning mischievously under wet curls. "Because I anointed myself."
"Sweetie! You were supposed to be brushing your teeth! Why--"
"But Mommy, I was just thinking about King Saul being anointed."
"Well, you aren't supposed to anoint yourself. Why did you do that? Did you think it would be special, or just fun?" (And why do I ask such useless questions?)
"I just wanted to do it." The naughty twinkle hadn't left his eyes. "But it's a good thing I didn't do it with olive oil, isn't it?" He paused for dramatic effect. "Because then I would be...king!"
He stood in the bathroom in his soaked pajama shirt, grinning mischievously under wet curls. "Because I anointed myself."
"Sweetie! You were supposed to be brushing your teeth! Why--"
"But Mommy, I was just thinking about King Saul being anointed."
"Well, you aren't supposed to anoint yourself. Why did you do that? Did you think it would be special, or just fun?" (And why do I ask such useless questions?)
"I just wanted to do it." The naughty twinkle hadn't left his eyes. "But it's a good thing I didn't do it with olive oil, isn't it?" He paused for dramatic effect. "Because then I would be...king!"
A reason to give thanks
For those who haven't heard yet...
Just before Thanksgiving, Alan's 12-week test results for hepatitis C came back. We were pretty anxious to hear these, since we had discovered that, based on the results so far from others who have gone through his drug treatment, if he was clear now, we were basically out of the woods. (Only one out of hundreds has re-tested positive after being negative at 12 weeks, and that person might have been reinfected or something). So when the nurse called me with the news that he was virus-free, I was thrilled.
I guess sometimes you don't know you're holding your breath, until you can breathe...
This year is truly a season to be jolly, for us! Instead of facing a life expectancy of 2-5 years (and 20% chance of dying this year), we have hope of a long life. One doctor even told him this may not affect his longevity at all.
We still have to deal with Alan's cirrhosis, which we have been told is probably mild and may largely be reversible by lifestyle. We continue to eat a largely organic, vegan diet, and will hopefully be doing more juicing again when we get past the hectic holidays. He will continue getting ultrasounds of his liver every six months, probably for the rest of his life, to watch for cancer. But despite all this, considering what we were facing two years ago, this feels glorious.
Thank you all for your prayers. We are so blessed. May we all remember to be grateful for the gift of life this year, and to use it for God's glory.
Just before Thanksgiving, Alan's 12-week test results for hepatitis C came back. We were pretty anxious to hear these, since we had discovered that, based on the results so far from others who have gone through his drug treatment, if he was clear now, we were basically out of the woods. (Only one out of hundreds has re-tested positive after being negative at 12 weeks, and that person might have been reinfected or something). So when the nurse called me with the news that he was virus-free, I was thrilled.
I guess sometimes you don't know you're holding your breath, until you can breathe...
This year is truly a season to be jolly, for us! Instead of facing a life expectancy of 2-5 years (and 20% chance of dying this year), we have hope of a long life. One doctor even told him this may not affect his longevity at all.
We still have to deal with Alan's cirrhosis, which we have been told is probably mild and may largely be reversible by lifestyle. We continue to eat a largely organic, vegan diet, and will hopefully be doing more juicing again when we get past the hectic holidays. He will continue getting ultrasounds of his liver every six months, probably for the rest of his life, to watch for cancer. But despite all this, considering what we were facing two years ago, this feels glorious.
Thank you all for your prayers. We are so blessed. May we all remember to be grateful for the gift of life this year, and to use it for God's glory.
Thursday, May 2, 2013
Sock it to ya
The other day I noticed Skyler's socks didn't match. "Sweetie, why are you wearing those two socks?" I asked.
He peered at his feet, obviously puzzled not by his circumstances, but by my condemnation of them. "But I like both of them."
Anaya, passing by at that moment, examined his feet as well. "Hey!" she protested. "Those are mine!"
He peered at his feet, obviously puzzled not by his circumstances, but by my condemnation of them. "But I like both of them."
Anaya, passing by at that moment, examined his feet as well. "Hey!" she protested. "Those are mine!"
With persistence worthy of a better cause
Our daughter remains an activist looking for a cause. Let's hope she finds a nobler one than this.
I left Anaya in child care yesterday while I went to a moms' Bible study group. When I returned, she and her friend Aile had written up this document to support their latest cause.
In case you can't read it, here it is:
Girls for God With Rights
We the Girls have the right to speak up. If your house was burning down what would you do? call the firerman of course! But wouldn't firerwomen be working to stop the fire? Yes! So why do we call tham firerman? Why don't we call tham firer people in sted of firermen!
you can give money to G.f.G.R.!
Please give what you can!
money___________________
adress___________________
Phone numder_____________
I left Anaya in child care yesterday while I went to a moms' Bible study group. When I returned, she and her friend Aile had written up this document to support their latest cause.
In case you can't read it, here it is:
Girls for God With Rights
We the Girls have the right to speak up. If your house was burning down what would you do? call the firerman of course! But wouldn't firerwomen be working to stop the fire? Yes! So why do we call tham firerman? Why don't we call tham firer people in sted of firermen!
you can give money to G.f.G.R.!
Please give what you can!
money___________________
adress___________________
Phone numder_____________
Latest news on Alan's treatment
So it's been a while...but here's the good news!
For those who don't know yet, Alan's treatment so far has been a great success! Tomorrow will be 8 weeks into treatment, and consistently for the last few weeks his blood has tested as free of the virus. It is likely still reproducing in his liver, though, and we have to continue treatment for the remainder of the program (which is 24 weeks total). Since it is a clinical trial, we don't get a lot of choices or options.
We are so blessed, in so many ways, to be in this trial. We were initially told we had no options other than a) a slow death, or b) a miserable 48 weeks of treatments that were toxic to his liver and had only about a 50% chance of cure (opinions on that varied). One doctor told us he had a 20% chance of dying this year, another that there was a significant chance the treatments themselves would shut down his liver. Even if all went the best it possibly could, he would feel like he had the flu for 48 weeks.
Instead, none of that happened. The day we were planning to make a decision on which medication to take, we prayed and pleaded for God to guide us. Then a specialist who we had never even seen called us (and as anyone medical knows, specialists never call anyone) and persuaded Alan that it was better to wait a few months and be a part of a clinical trial.
When the clinical trials opened, there were only a few weeks in which anyone would be able to get in. We initially hadn't considered the Birmingham trial because it was so far away (2 1/2 hours), and because we thought we could get into the one with the specialist in Atlanta. But when his kept getting delayed, we eventually went to Birmingham and finally were able to start treatment. A few weeks later when his started, we were already in treatment. But now that results are coming out, it appears that the medications Alan is on are more effective than the ones he would have taken in Atlanta. And some of the side effects appear to be less severe.
God is good. I have been reminded of that over and over this year. But I often think, "What if things had gone differently?" The truth is, God would still have been good. No matter what happens (and we know that much trouble is ahead of us in the future anyway, through disease, death, or crises before the end of time), God will still be good. Always.
"Though He slay me, yet will I trust in Him."
Please keep us in your prayers. Tomorrow we will go back to Birmingham for more blood tests (as we do every two weeks now), and we will find out more results in another week or so. So far Alan has had a mild rash, a single episode of nausea and vomiting, and lots of exhaustion and insomnia. His bilirubin is very elevated, which has led to him nearly getting kicked out of the clinical trial (that was scary), but he has done well otherwise and was even able to fight off a cold this week (hooray!). He gave his last final exam for the semester yesterday, so hopefully he will be able to invest more time in exercise and sunshine, which the doctor has prescribed. Yes, he really did. (Alas for Alan, we have a garden and I'm not afraid to use it.) :D
Thank you all for your prayers and support! We are so richly blessed to have such a wonderful network of love and encouragement. Blessings to you all.
For those who don't know yet, Alan's treatment so far has been a great success! Tomorrow will be 8 weeks into treatment, and consistently for the last few weeks his blood has tested as free of the virus. It is likely still reproducing in his liver, though, and we have to continue treatment for the remainder of the program (which is 24 weeks total). Since it is a clinical trial, we don't get a lot of choices or options.
We are so blessed, in so many ways, to be in this trial. We were initially told we had no options other than a) a slow death, or b) a miserable 48 weeks of treatments that were toxic to his liver and had only about a 50% chance of cure (opinions on that varied). One doctor told us he had a 20% chance of dying this year, another that there was a significant chance the treatments themselves would shut down his liver. Even if all went the best it possibly could, he would feel like he had the flu for 48 weeks.
Instead, none of that happened. The day we were planning to make a decision on which medication to take, we prayed and pleaded for God to guide us. Then a specialist who we had never even seen called us (and as anyone medical knows, specialists never call anyone) and persuaded Alan that it was better to wait a few months and be a part of a clinical trial.
When the clinical trials opened, there were only a few weeks in which anyone would be able to get in. We initially hadn't considered the Birmingham trial because it was so far away (2 1/2 hours), and because we thought we could get into the one with the specialist in Atlanta. But when his kept getting delayed, we eventually went to Birmingham and finally were able to start treatment. A few weeks later when his started, we were already in treatment. But now that results are coming out, it appears that the medications Alan is on are more effective than the ones he would have taken in Atlanta. And some of the side effects appear to be less severe.
God is good. I have been reminded of that over and over this year. But I often think, "What if things had gone differently?" The truth is, God would still have been good. No matter what happens (and we know that much trouble is ahead of us in the future anyway, through disease, death, or crises before the end of time), God will still be good. Always.
"Though He slay me, yet will I trust in Him."
Please keep us in your prayers. Tomorrow we will go back to Birmingham for more blood tests (as we do every two weeks now), and we will find out more results in another week or so. So far Alan has had a mild rash, a single episode of nausea and vomiting, and lots of exhaustion and insomnia. His bilirubin is very elevated, which has led to him nearly getting kicked out of the clinical trial (that was scary), but he has done well otherwise and was even able to fight off a cold this week (hooray!). He gave his last final exam for the semester yesterday, so hopefully he will be able to invest more time in exercise and sunshine, which the doctor has prescribed. Yes, he really did. (Alas for Alan, we have a garden and I'm not afraid to use it.) :D
Thank you all for your prayers and support! We are so richly blessed to have such a wonderful network of love and encouragement. Blessings to you all.
Wednesday, March 13, 2013
Update on Alan
So, for all those who don't know yet, Alan started treatment five days ago! He was accepted into a clinical trial in Birmingham, Alabama, 2 1/2 hours from us. The process of getting approved and beginning treatment happened very quickly. We ended up coming back early from our Spring Break trip to Florida and Georgia, in order for him to begin treatment as soon as possible. Rather than having to have injections once a week that would make him very sick, he is on an all-oral treatment (five pills in the morning, five in the evening) and is not nearly as sick as we hear everyone gets on the standard treatments available at this time. We are so thankful!
So far the side effects of the medications have been tolerable. We were told he would likely have headaches, nausea and fatigue. So far there has been no nausea, but the fatigue has been pretty strong. He has had light headaches on and off. Unfortunately, he caught a cold two days after beginning treatment, and the combination has put him decidedly under the weather. He is beginning to surface after two days of misery. We have been told that the first three weeks are when the side effects of medication are strongest, and after that he may feel nearly normal. We'll see.
Thank you all for your prayers and support!
So far the side effects of the medications have been tolerable. We were told he would likely have headaches, nausea and fatigue. So far there has been no nausea, but the fatigue has been pretty strong. He has had light headaches on and off. Unfortunately, he caught a cold two days after beginning treatment, and the combination has put him decidedly under the weather. He is beginning to surface after two days of misery. We have been told that the first three weeks are when the side effects of medication are strongest, and after that he may feel nearly normal. We'll see.
Thank you all for your prayers and support!
Those raging Hormones
As part of our children's study of the birds and the bees, we have been reading a very entertaining book about Mr. and Mrs. Hormone, complete with hilarious cartoon drawings of the mischievous hormone couple mixing toxic potions that make girls moody and boys pimply. The kids love the story line about the Hormones and how they interfere without permission in all areas of life.
Last night we were reading a story for worship about the life of Ellen White's family. Talking about her son Willie, we read, "Willie White was in charge of all the church in Australia in those years. He was very busy but very lonely without a wife. But one day, he met a lovely young woman named Ethel May Lacey and before long, they fell in love."
"Do you know why they fell in yuv?" Skyler interrupted.
"Why?" I asked.
He burst into giggles. "Mr. and Mrs. Hormone!"
Last night we were reading a story for worship about the life of Ellen White's family. Talking about her son Willie, we read, "Willie White was in charge of all the church in Australia in those years. He was very busy but very lonely without a wife. But one day, he met a lovely young woman named Ethel May Lacey and before long, they fell in love."
"Do you know why they fell in yuv?" Skyler interrupted.
"Why?" I asked.
He burst into giggles. "Mr. and Mrs. Hormone!"
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