On this very day, seventeen years ago, Vern took me to the top of Pike’s Peak near Colorado Springs, Colorado, where I lived. We ate donuts at 14,000 feet plus and walked around looking down and marveling and how teeny tiny everything was from this height. Then he popped the question. I can’t remember exactly how he asked, but I do remember gasping and quietly shrieking, “Yes!” even though I had a pretty good idea that this was coming. He told me he had intended to get down on his knee, but… and then he looked at the ground around us… there are an awful lot of sharp little rocks!
Since then, we joke that he asked me to ‘be his wife for the rest of his life’ on ‘the top of the world’.
Today we are sneaking away to have almost a weekend together. We won’t be far from home, in case they need us for something with James, but we’ll be alone. We are really looking forward to the time together.
I have this feeling we’ll sleep a lot!
Have a blessed weekend.
Love, Stephanie
P.S. If you'd like to share your proposal story, feel free to do so in the comments. If you put the story on your blog, please leave a link.
Saturday, June 30, 2007
Wednesday, June 27, 2007
Bits and pieces
It seems so much has been happening around here and yet, as I sit down to write, I have to really work to remember what I was planning to write about!
It has been pretty hot (upper 90s, low 100s), but we have a very effecient and effective air conditioner. Our wonderful friends and hospitable hosts, the Clayton's, whom I hope to introduce you all to some day (I know I've said that before...) let us buy them an above ground pool as a small thank you gift for their hospitality. Of course, we enjoy the pool too and it helps with keeping cool. It has been a great motivator for some who needed to do some hot outside work!
We have gotten some rain. Things have greened up nicely, but we are still behind. I am no longer sure by how much.
The person who surveyed our land hadn't actually completed the survey when we started clearing for our house location. The 'cut' he had made through the trees didn't look right to us and things seemed smaller than the plat showed. Vern and Owen did some measuring and then Vern called the surveyor. It took a while before he actually told Vern he had more work to do on our land. But now he is done and the lines he has cut make much more sense and are much closer to where we thought they would be. I'm not sure when we should get back over there to mark the house site.
Last night, one of the men from church told Vern he had two trailer loads of scrap wood that Vern was welcomed to. Today, he and Owen are running back and forth to town to pick up the trailers, bring them here to unload them and return them to town. Vern says just four of the boards make it worth his while to make the drives. If he doesn't use them for chicken pens of some sort, they may give him a decent start on a barn.
Today, we almost have James back up to his regular feeding schedule. We are mixing the blackstrap molasses into his formula, which he gets over a little longer time, and we cut back some--thanks for the thoughts, Mom. We are actually kind of catching our breath today, although there is plenty to do.
Tomorrow, we have an appointment in Macon to take James to meet a new pediatrician who was very highly recommended to us by a family from church here. We are looking forward to meeting him as it seems the Lord went before us and prepared the way--we sure hope so. It is important for James to have a doctor here to follow him and become famaliar with him as we go through this time of treatment because, as hard as it is to believe right now, things will eventually slow down and we will need to see James' pediatrician more than his oncologist. Dr. Keller thinks it is a really good thing to be establishing that relationship now. Having had a great pediatrician for James in Minnesota, I can appreciate his thoughts.
I am trying, in vain it seems sometimes, to get hold of a sales rep from a large company that sells food processing supplies and equipment. They carry a stapler (and the staples) that works great to seal a shrinkwrap bag around our chickens. We have such a stapler that we purchased in Minnesota and we know other chicken growers that like the bags and would like to have such a stapler, but they won't sell to individuals, only to 'distributors'. I am trying to find out if they will sell staplers and staples to us that we could 'distribute' to small chicken farmers like us. Getting a call returned is like pulling teeth and I'm not having any luck, so far, finding another company who sells it.
James has gotten most of his old smile back--he still has a little of the palsy on his left side. He is getting some toehead peach fuzz on his little head (which probably won't last too much longer after he begins this next round of chemo). He is back to bear crawling on all fours. He pulls himself up to standing and sometimes cruises the furniture a little. I think he has a ways to go to regain the strength in his legs and trunk and the stamina he will need for walking, but the more normal he can be, the better. Before, we had to have someone sitting with him all the time to be a comfort, now we need to have someone sit with him during a tube feeding or he tries to 'climb' down to play. He doesn't have 'steroid face' anymore, but he'll be getting 21 days of steroids or so again starting July 5th.
As grateful as we are to our splendid hosts, we all yearn to have our own place. But we are also very thankful for the fellowship, rest and 'burden-sharing along this road we are travelling with James. I can't imagine being totally on our own just now and yet, it is overwhelming at times to think of all James has to go through and building a home, establishing a homestead (making it produce things for us to eat and sell), and Vern starting a new job... all in addition to the 'regularly scheduled' activities of a homeschooling household of eight.
Thanks for checking on us, praying for us and enduring my spotty, rambling posts. Please let us here from you when you have a chance. Sometimes it seems like I am hosting my own one way conversation!
Love, Stephanie
It has been pretty hot (upper 90s, low 100s), but we have a very effecient and effective air conditioner. Our wonderful friends and hospitable hosts, the Clayton's, whom I hope to introduce you all to some day (I know I've said that before...) let us buy them an above ground pool as a small thank you gift for their hospitality. Of course, we enjoy the pool too and it helps with keeping cool. It has been a great motivator for some who needed to do some hot outside work!
We have gotten some rain. Things have greened up nicely, but we are still behind. I am no longer sure by how much.
The person who surveyed our land hadn't actually completed the survey when we started clearing for our house location. The 'cut' he had made through the trees didn't look right to us and things seemed smaller than the plat showed. Vern and Owen did some measuring and then Vern called the surveyor. It took a while before he actually told Vern he had more work to do on our land. But now he is done and the lines he has cut make much more sense and are much closer to where we thought they would be. I'm not sure when we should get back over there to mark the house site.
Last night, one of the men from church told Vern he had two trailer loads of scrap wood that Vern was welcomed to. Today, he and Owen are running back and forth to town to pick up the trailers, bring them here to unload them and return them to town. Vern says just four of the boards make it worth his while to make the drives. If he doesn't use them for chicken pens of some sort, they may give him a decent start on a barn.
Today, we almost have James back up to his regular feeding schedule. We are mixing the blackstrap molasses into his formula, which he gets over a little longer time, and we cut back some--thanks for the thoughts, Mom. We are actually kind of catching our breath today, although there is plenty to do.
Tomorrow, we have an appointment in Macon to take James to meet a new pediatrician who was very highly recommended to us by a family from church here. We are looking forward to meeting him as it seems the Lord went before us and prepared the way--we sure hope so. It is important for James to have a doctor here to follow him and become famaliar with him as we go through this time of treatment because, as hard as it is to believe right now, things will eventually slow down and we will need to see James' pediatrician more than his oncologist. Dr. Keller thinks it is a really good thing to be establishing that relationship now. Having had a great pediatrician for James in Minnesota, I can appreciate his thoughts.
I am trying, in vain it seems sometimes, to get hold of a sales rep from a large company that sells food processing supplies and equipment. They carry a stapler (and the staples) that works great to seal a shrinkwrap bag around our chickens. We have such a stapler that we purchased in Minnesota and we know other chicken growers that like the bags and would like to have such a stapler, but they won't sell to individuals, only to 'distributors'. I am trying to find out if they will sell staplers and staples to us that we could 'distribute' to small chicken farmers like us. Getting a call returned is like pulling teeth and I'm not having any luck, so far, finding another company who sells it.
James has gotten most of his old smile back--he still has a little of the palsy on his left side. He is getting some toehead peach fuzz on his little head (which probably won't last too much longer after he begins this next round of chemo). He is back to bear crawling on all fours. He pulls himself up to standing and sometimes cruises the furniture a little. I think he has a ways to go to regain the strength in his legs and trunk and the stamina he will need for walking, but the more normal he can be, the better. Before, we had to have someone sitting with him all the time to be a comfort, now we need to have someone sit with him during a tube feeding or he tries to 'climb' down to play. He doesn't have 'steroid face' anymore, but he'll be getting 21 days of steroids or so again starting July 5th.
As grateful as we are to our splendid hosts, we all yearn to have our own place. But we are also very thankful for the fellowship, rest and 'burden-sharing along this road we are travelling with James. I can't imagine being totally on our own just now and yet, it is overwhelming at times to think of all James has to go through and building a home, establishing a homestead (making it produce things for us to eat and sell), and Vern starting a new job... all in addition to the 'regularly scheduled' activities of a homeschooling household of eight.
Thanks for checking on us, praying for us and enduring my spotty, rambling posts. Please let us here from you when you have a chance. Sometimes it seems like I am hosting my own one way conversation!
Love, Stephanie
Monday, June 25, 2007
More than sufficient
Friday night, after we flushed James' lines, we decided that on Saturday night we would heplock his lines with a higher potency heparin that we still had from when we left Minnesota and brought James down to Georgia.
When I flushed James' line with saline Saturday night, it was a little easier to pull back and get a blood return, but there was still some resistance. Vern and I were pretty excited and grateful for the progress and continued with our original plan.
Last night, when I flushed and pulled back, I got a *sweet* blood return, with NO resistance!
Praise the Lord for His mercies! We'll continue to heplock with the higher potency heparin. Please pray that the Lord would move on 'the powers that be' that they would be willing to provide us with more of the stronger heparin to flush James' lines daily and keep them open. I hope to make an appeal the next time we are at the clinic.
Please also pray:
1. that we can get a good handle on James' feeds--he has vomited a few times this past week (something that he doesn't usually do), and it seems that sometimes it is related to his feedings (either the quantity or the feeding rate).
2. that the Lord would clear up the last of his mucous (mostly a clear runny nose--not sure if it is allergies, the tail end o mucousitis, or something else.
In other news:
I tried to post a batch of photos of life around here on Saturday, but encountered 'technical difficulties'. One of the side benefits of rural living. :*)
Today's plan is to go, as a family, to Dudley, GA, where Vern found a feed mill that will do custom blend feeds. He ordered a batch on Saturday and we will pick it up today. We'll drive a little further on to Dublin, GA so Vern can show us around there. I also have a few phone calls to make! Maybe we could swing by the library and use their computer connection to upload photos.
The chickens are growing like meaty little weeds and we are hoping to get them into the freezer the second or third week of July. Turkey are in the brooder and are doing splendidly. They should be ready to move out on pasture as soo as there is a pen for them. They should meet the freezer sometime in October. If you're in our area and interested in good, clean, locally grown poultry, please let us know!
Thanks for checking on us... and thanks for praying for James' lines.
Love, Stephanie
When I flushed James' line with saline Saturday night, it was a little easier to pull back and get a blood return, but there was still some resistance. Vern and I were pretty excited and grateful for the progress and continued with our original plan.
Last night, when I flushed and pulled back, I got a *sweet* blood return, with NO resistance!
Praise the Lord for His mercies! We'll continue to heplock with the higher potency heparin. Please pray that the Lord would move on 'the powers that be' that they would be willing to provide us with more of the stronger heparin to flush James' lines daily and keep them open. I hope to make an appeal the next time we are at the clinic.
Please also pray:
1. that we can get a good handle on James' feeds--he has vomited a few times this past week (something that he doesn't usually do), and it seems that sometimes it is related to his feedings (either the quantity or the feeding rate).
2. that the Lord would clear up the last of his mucous (mostly a clear runny nose--not sure if it is allergies, the tail end o mucousitis, or something else.
In other news:
I tried to post a batch of photos of life around here on Saturday, but encountered 'technical difficulties'. One of the side benefits of rural living. :*)
Today's plan is to go, as a family, to Dudley, GA, where Vern found a feed mill that will do custom blend feeds. He ordered a batch on Saturday and we will pick it up today. We'll drive a little further on to Dublin, GA so Vern can show us around there. I also have a few phone calls to make! Maybe we could swing by the library and use their computer connection to upload photos.
The chickens are growing like meaty little weeds and we are hoping to get them into the freezer the second or third week of July. Turkey are in the brooder and are doing splendidly. They should be ready to move out on pasture as soo as there is a pen for them. They should meet the freezer sometime in October. If you're in our area and interested in good, clean, locally grown poultry, please let us know!
Thanks for checking on us... and thanks for praying for James' lines.
Love, Stephanie
Saturday, June 23, 2007
Sufficient
Late last night, when we did James' cares, we set out everything to check and flush his central line. He got bathed and cleaned up and we all hoped and prayed that this line was not lost--actually, it's not lost as long as we can flush it, but it sure is handy to be able to pull back blood from it went we need to.
Just as I started I cried out and begged God to please let it pull back blood. No sooner had I cried out than there was 4 ccs of blood and TPA in the syringe. It was a much bigger relief than I had anticipated. It flushed just as easily as it had pulled. I nearly cried. God is so merciful and I am so grateful.
I told God that I was sure grateful for the first lumen working so easily and that it sure would be nice to have the second lumen too. Then I pulled back, and one or two ccs of clear fluid, the TPA, came back into the syringe. I felt suction in the line try to pull back the TPA, and there was no blood return. I remembered seeing the nurses in the hospital work the line, pumping the syringe. I did the same thing. A little bit of the suction broke and some blood came into the syringe, but there was still some suction on the line, trying to pull the blood back in. I held 4 ccs blood waste in the syringe and clamped the line. I pulled the waste out and flushed the line with saline and and locked it with heparin.
I'm sorry, but honest, to say, that I murmured and told God that it sure would have been nice to have two lumens. He said, "One lumen is sufficient." I knew I would have to trust God for James' lines.
One lumen is sufficient, even if two would be nice.
Just as I started I cried out and begged God to please let it pull back blood. No sooner had I cried out than there was 4 ccs of blood and TPA in the syringe. It was a much bigger relief than I had anticipated. It flushed just as easily as it had pulled. I nearly cried. God is so merciful and I am so grateful.
I told God that I was sure grateful for the first lumen working so easily and that it sure would be nice to have the second lumen too. Then I pulled back, and one or two ccs of clear fluid, the TPA, came back into the syringe. I felt suction in the line try to pull back the TPA, and there was no blood return. I remembered seeing the nurses in the hospital work the line, pumping the syringe. I did the same thing. A little bit of the suction broke and some blood came into the syringe, but there was still some suction on the line, trying to pull the blood back in. I held 4 ccs blood waste in the syringe and clamped the line. I pulled the waste out and flushed the line with saline and and locked it with heparin.
I'm sorry, but honest, to say, that I murmured and told God that it sure would have been nice to have two lumens. He said, "One lumen is sufficient." I knew I would have to trust God for James' lines.
One lumen is sufficient, even if two would be nice.
Thursday, June 21, 2007
Mostly good news
James' appointment with Dr. Keller went well today. He said James' toxicity to this methotrexate would be class 4, on a scale of one to four. James is only getting a half dose of methotrexate compared to what other children his age and size would get. In another couple of months, James will get another run of three doses of methotrexate over a seven week period so Dr. Keller will look into ways we can lessen the toxicity for James without decreasing his dose further. One possibility is giving additional doses of the rescue drug leucovorin that James already gets after methotrexate.
James' counts were good and Dr. Keller hoped they would only improve over the next two weeks. His hemoglobin was a little low (7.7), but Dr. Keller felt like it would improve with the two weeks and decided we could pass on a transfusion today. I assured him that we would 'tank James up' with blackstrap molasses which should increase his hemoglobin. He actually came back with the recollection about reading about using blackstrap molasses to treat Crohn's disease--sorry, no details, that's as far as we got on that rabbit trail!
James' line flushed fine in the clinic, but his nurse couldn't get a blood return. We tried a more concentrated heparin, but that didn't help, so they put in the TPA, which is supposed to be more potent at busting up clots. Dr. Keller decided we should leave it in and I should try to pull it back tomorrow when I would usually flush his lines. PLEASE PRAY: that it pulls back with a good blood return and flushes just like it is supposed to.
The next chemo is scheduled for 5 July, so we have two whole weeks before we have to go back to the clinic or hospital, Lord willing. The plan is to go to Atlanta that Thursday morning, see Dr. Keller, get a spinal tap and chemo, then get vincristine by central line and start steroids again. We will have to stay the night in the area there (hopefully at the Ronald McDonald house) and return to the clinic on Friday to get two shots of Peg-Asparaginase. Hopefully, we will return home after that.
On the way home, Katie, James and I stopped at Walmart to do some shopping. James was a real trooper through everything and we could tell he was feeling better because he waved and said, "Aaahhh" to many folks in the store. When we arrived home, Hannah started doing some of James' cares and called to us for help because there was blood around his central line. To make a long story short, we talked to folks at the hospital, changed the dressing, cleaned the sight and called back to the hospital. It looks like everything is fine and a pulled stitch is the likely cause of the bleeding. We are still holding off on pulling out the TPA til tomorrow.
Looking forward to a boring day tomorrow, Lord willing.
Love, Stephanie
James' counts were good and Dr. Keller hoped they would only improve over the next two weeks. His hemoglobin was a little low (7.7), but Dr. Keller felt like it would improve with the two weeks and decided we could pass on a transfusion today. I assured him that we would 'tank James up' with blackstrap molasses which should increase his hemoglobin. He actually came back with the recollection about reading about using blackstrap molasses to treat Crohn's disease--sorry, no details, that's as far as we got on that rabbit trail!
James' line flushed fine in the clinic, but his nurse couldn't get a blood return. We tried a more concentrated heparin, but that didn't help, so they put in the TPA, which is supposed to be more potent at busting up clots. Dr. Keller decided we should leave it in and I should try to pull it back tomorrow when I would usually flush his lines. PLEASE PRAY: that it pulls back with a good blood return and flushes just like it is supposed to.
The next chemo is scheduled for 5 July, so we have two whole weeks before we have to go back to the clinic or hospital, Lord willing. The plan is to go to Atlanta that Thursday morning, see Dr. Keller, get a spinal tap and chemo, then get vincristine by central line and start steroids again. We will have to stay the night in the area there (hopefully at the Ronald McDonald house) and return to the clinic on Friday to get two shots of Peg-Asparaginase. Hopefully, we will return home after that.
On the way home, Katie, James and I stopped at Walmart to do some shopping. James was a real trooper through everything and we could tell he was feeling better because he waved and said, "Aaahhh" to many folks in the store. When we arrived home, Hannah started doing some of James' cares and called to us for help because there was blood around his central line. To make a long story short, we talked to folks at the hospital, changed the dressing, cleaned the sight and called back to the hospital. It looks like everything is fine and a pulled stitch is the likely cause of the bleeding. We are still holding off on pulling out the TPA til tomorrow.
Looking forward to a boring day tomorrow, Lord willing.
Love, Stephanie
Wednesday, June 20, 2007
Landowners
Monday we closed on our land and we are officially landowners again. We are alternately excited and overwhelmed. Joey, who sold us the land, is very generously clearing it and coaching us through these early stages of preparing the land (and ourselves) for building. As I type, Vern and Owen are over at the land, measuring some things to decide where we should put our new home.
Tomorrow (Thursday) James will need to return to Atlanta for a visit to Dr. Keller. He has had a rough go of it since the last chemo. It has been worse in some respects and better in others. The mucusitis seems to be lasting longer than the previous two times and he is drooling like crazy. His shirts get soaked with drool and the dressingn over his new Hickman needs to be replaced every other day, instead of once of week. I am very grateful, though, that all the flushes for is Hickman have been picture perfect and it seems to be in fine shape, PTL. Tomorrow they will probably use it to draw James' labs.
We had a wonderful downpour of rain yesterday and it sounds like another just started. The grass is turning lush and green and the chickens are loving it. Turkeys are in the brooder having a grand ole time!
Hope all is well with you and yours. We still love to hear from you.
Love, Stephanie
Tomorrow (Thursday) James will need to return to Atlanta for a visit to Dr. Keller. He has had a rough go of it since the last chemo. It has been worse in some respects and better in others. The mucusitis seems to be lasting longer than the previous two times and he is drooling like crazy. His shirts get soaked with drool and the dressingn over his new Hickman needs to be replaced every other day, instead of once of week. I am very grateful, though, that all the flushes for is Hickman have been picture perfect and it seems to be in fine shape, PTL. Tomorrow they will probably use it to draw James' labs.
We had a wonderful downpour of rain yesterday and it sounds like another just started. The grass is turning lush and green and the chickens are loving it. Turkeys are in the brooder having a grand ole time!
Hope all is well with you and yours. We still love to hear from you.
Love, Stephanie
Monday, June 18, 2007
Home again, home again...
We arrived safely home at about 8:00 p.m. Friday evening. Our trip was uneventful in most respects, but since we were leaving during rush hour, we decided to take the back way home. It was a very pleasant drive.
We also decided before we left Emory, to get James' two prescriptions filled at a local pharmacy there. We knew our pharmacy would be closed before we made it home.
Although we did go ahead and pick up something to eat on the way, we were able to sit down with the rest of the family for supper.
Lots is going on around here and I hope to blog about it and post some photos in the near future.
Thanks for checking up on us!
Love, Stephanie
P.S. It has come to my attention that at least one person is having trouble posting comments. If you need to reach us, we still have our peoplepc e-mail address, if you have that.
We also decided before we left Emory, to get James' two prescriptions filled at a local pharmacy there. We knew our pharmacy would be closed before we made it home.
Although we did go ahead and pick up something to eat on the way, we were able to sit down with the rest of the family for supper.
Lots is going on around here and I hope to blog about it and post some photos in the near future.
Thanks for checking up on us!
Love, Stephanie
P.S. It has come to my attention that at least one person is having trouble posting comments. If you need to reach us, we still have our peoplepc e-mail address, if you have that.
Friday, June 15, 2007
It ain't over 'til it's over
When James was a brand new baby, he was medi-vacced from our community hospital in rural northern Minnesota, where he was born, to Children's Hospital in Minneapolis. He was sent there because he had some sort of intestinal blockage and his pediatrician, Dr. Shannon Harker, said that it was really important for him to have a pediatric surgeon for the best possible outcome. We had our first of three excellent experiences at that hospital and continue to be grateful to Dr. Harker and to the folks at Children's Minneapolis.
James was just short of three weeks old when we finally brought him home that first visit and I will always remember the wise words of his nurse, Patricia. "Just remember, you aren't out of here until you see the hospital in your rear view mirror."
She worked in the nursery that is a level stepped down from the NICU and most of their patients are preemies. She used to tell people that 'you aren't out of here til the baby is in it's car seat.' Then she had one baby have a seizure or some thing in the car seat and now she's switched to the rear view mirror quote.
It remains my current standard for hospital discharges to this day!
That said, we have been waiting for James' blood methotrexate level to come back. It needs to be less than 0.20 for James to be discharged. Erin, his nurse, came in a little past noon to tell me, disappointedly, that his level was "Point zero three." I shared her disappointment, but said I had kind of expected this, since his 24-hour levels were a little higher than the past two times. Then she left to find out what we needed to do.
After she left I thought,"Did she say, 'Point zero three.' or 'Zero point three.'? I think I'll wait til she comes back with an answer before calling Vern."
A little while later, she popped her head back in and said that once she said it out loud on the phone, she realized that his levels were good! It was 'zero point three'. If nothing else happens between now and then, we hope to be seeing the hospital in our rear view mirror at around four o'clock this afternoon.
We hope to miss the worst of the traffic and make it home for Friday supper, Lord willing.
Love, Stephanie
James was just short of three weeks old when we finally brought him home that first visit and I will always remember the wise words of his nurse, Patricia. "Just remember, you aren't out of here until you see the hospital in your rear view mirror."
She worked in the nursery that is a level stepped down from the NICU and most of their patients are preemies. She used to tell people that 'you aren't out of here til the baby is in it's car seat.' Then she had one baby have a seizure or some thing in the car seat and now she's switched to the rear view mirror quote.
It remains my current standard for hospital discharges to this day!
That said, we have been waiting for James' blood methotrexate level to come back. It needs to be less than 0.20 for James to be discharged. Erin, his nurse, came in a little past noon to tell me, disappointedly, that his level was "Point zero three." I shared her disappointment, but said I had kind of expected this, since his 24-hour levels were a little higher than the past two times. Then she left to find out what we needed to do.
After she left I thought,"Did she say, 'Point zero three.' or 'Zero point three.'? I think I'll wait til she comes back with an answer before calling Vern."
A little while later, she popped her head back in and said that once she said it out loud on the phone, she realized that his levels were good! It was 'zero point three'. If nothing else happens between now and then, we hope to be seeing the hospital in our rear view mirror at around four o'clock this afternoon.
We hope to miss the worst of the traffic and make it home for Friday supper, Lord willing.
Love, Stephanie
Normal, ECG, prizes, and feeling yucky
Yesterday was a pretty normal, low-key hospital day, PTL. James got off of his chemo right on time and his blood draw went just like it is supposed to go (the first for us in a long time).
My parents came down from north Georgia/North Carolina for a visit. They brought a yummy lunch (sandwich fixings and a salad, chips and cookies and some fresh cut up fruit). We had a nice visit. Thanks Mom and Dad.
In the afternoon, James had an echocardiogram. Did you know that that is a sonogram of the heart? I didn't. I'm sure that he had one as a newborn (they always screen babies with Down syndrome because they have such a high rate of heart defects) but I wasn't there for it. It was wonderful to hear a strong little heartbeat--a lot like hearing your unborn baby during a prenatal check. James thought it was pretty neat to hear too. His heart still looks great. The cardiologist said he wished everybody's heart around here looked like James'. I just quietly hoped that James' heart would look just as good when we are done with chemo. At least one of the chemo drugs James is due to take in the near future can cause problems with the heart, so they like to have a baseline going in. Please pray that the Lord would protect James' heart from any damage by the chemo.
On Thursdays, they play bingo downstairs and everyone who plays wins. Those that can't go downstairs can watch on TV and play in their rooms. You just have to persevere enough to get through on the phone to tell them you got a bingo. That is something Hannah doesn't mind doing. So she played three rounds of bingo for James and called in to claim his prizes. A volunteer delivered a Blue's Clues coloring book, crayons, and his own personal copy of _Go, Dog. Go!_.
Last night the symptoms of mucusitis started up again. We started him up on regular doses of tylenol with codeine (T3). This morning it is becoming more apparent that he is having nausea, so he is also getting zophran. The T3 isn't quite covering his pain for the whole four hours, so the last 15-30 minutes James is a little extra needy. Right now, he is sleeping comfortably in Hannah's arms and we are waiting for his 48 hour blood draw at 11:05.
This morning, Stacy, his nurse practitioner, came by and went over the next four months of his road map with me. She told me what would normally be done in clinic, in the hospital and at home. She also told me what treatments could be delayed because of James' counts and when most children end up back in the hospital for unplanned stays due to fevers or other complications. That is a big help to me in beginning to wrap my brain around all that will need to be done over the next few months while preparing land, building a house, starting a new job (Vern's) and caring for a child undergoing chemotherapy!
With God, all things are possible!
Love, Stephanie
Update: James woke up from his nap and seemed to be feeling like the T3 had kicked in. Hannah took him for a ride in the little wheelchair we've been using for him this week and then came back to report that the nurse already drew his labs and gave him his leucovorin. In an hour or so, we should know if we can go home! Please continue to pray for no fever and no infection!
My parents came down from north Georgia/North Carolina for a visit. They brought a yummy lunch (sandwich fixings and a salad, chips and cookies and some fresh cut up fruit). We had a nice visit. Thanks Mom and Dad.
In the afternoon, James had an echocardiogram. Did you know that that is a sonogram of the heart? I didn't. I'm sure that he had one as a newborn (they always screen babies with Down syndrome because they have such a high rate of heart defects) but I wasn't there for it. It was wonderful to hear a strong little heartbeat--a lot like hearing your unborn baby during a prenatal check. James thought it was pretty neat to hear too. His heart still looks great. The cardiologist said he wished everybody's heart around here looked like James'. I just quietly hoped that James' heart would look just as good when we are done with chemo. At least one of the chemo drugs James is due to take in the near future can cause problems with the heart, so they like to have a baseline going in. Please pray that the Lord would protect James' heart from any damage by the chemo.
On Thursdays, they play bingo downstairs and everyone who plays wins. Those that can't go downstairs can watch on TV and play in their rooms. You just have to persevere enough to get through on the phone to tell them you got a bingo. That is something Hannah doesn't mind doing. So she played three rounds of bingo for James and called in to claim his prizes. A volunteer delivered a Blue's Clues coloring book, crayons, and his own personal copy of _Go, Dog. Go!_.
Last night the symptoms of mucusitis started up again. We started him up on regular doses of tylenol with codeine (T3). This morning it is becoming more apparent that he is having nausea, so he is also getting zophran. The T3 isn't quite covering his pain for the whole four hours, so the last 15-30 minutes James is a little extra needy. Right now, he is sleeping comfortably in Hannah's arms and we are waiting for his 48 hour blood draw at 11:05.
This morning, Stacy, his nurse practitioner, came by and went over the next four months of his road map with me. She told me what would normally be done in clinic, in the hospital and at home. She also told me what treatments could be delayed because of James' counts and when most children end up back in the hospital for unplanned stays due to fevers or other complications. That is a big help to me in beginning to wrap my brain around all that will need to be done over the next few months while preparing land, building a house, starting a new job (Vern's) and caring for a child undergoing chemotherapy!
With God, all things are possible!
Love, Stephanie
Update: James woke up from his nap and seemed to be feeling like the T3 had kicked in. Hannah took him for a ride in the little wheelchair we've been using for him this week and then came back to report that the nurse already drew his labs and gave him his leucovorin. In an hour or so, we should know if we can go home! Please continue to pray for no fever and no infection!
Thursday, June 14, 2007
Probiotics
A while back, I mentioned giving James probiotics and Lori at The Road Not Chosen asked for more information.
Essentially, probiotics (pro-life) are the good bacteria that make for a healthy gut that digests food well, assimilates nutrients into the body and helps to fight off bad bacteria that gets in to our system (in the food we eat, for example) before it causes serious problems.
There are lots of things that can damage and destroy the good bacteria (flora) in our digestive tract. A big culprit is antibiotics. While they may save lives, antibiotics actually destroy bacteria--good and bad. Other medications, like chemotherapy, affect our intestinal flora. Stress can also have a negative impact. Our body 'uses' probiotics to help digest food and those need to be replaced.
The best source of pro-biotics is food. Of course, it must be the right kind of food (not all foods have pro-biotics in them). How the food is prepared is very important in the quality and quantity of pro-biotics.
Good sources of food that provide beneficial bacteria include fermented foods or cultured milk products. Fermented foods include real pickled items (like fermented pickled cucumbers, beets or other vegetables), real sauerkraut and kimchee. Foods that are made with distilled vinegar actually destroy the beneficial bacteria and work opposite of what we hope for. Cultured milk products include yogurt (with active cultures), kefir, properly made cheeses and even butter made with cultured cream.
Sometimes it isn't possible to eat foods rich in beneficial bacteria. While there is some dispute regarding how well probiotic nutritional supplements actually help, I contend they are better than doing nothing at all. That is purely a personal assessment.
James' gastro-intestinal system is already compromised. On top of that, he has chemotherapy, an onslaught of antibiotics at various points in time and varying degrees of stress in his little life as many people he doesn't know have to do undesirable things to him. We believe it is important to try to give him as much benefit as we can in this area. As much as possible, we use good quality yogurt as part of his g-tube feeds. Sometimes we are unable to do this and we supplement with a powdered probiotic. When he is getting lots of antibiotics (we just finished a pretty heavy-duty course) and when he is under extra stress (at the hospital), we try to use both.
I chose James' probiotic supplement by going to the local-to-the-hospital Whole Foods Market and looking at all that they had available. A good pro-biotic will be refrigerated. I chose one of the brands that had a wide variety and larger quantities of probiotics listed on the bottle. As I'm reading more, I may change my approach in the future.
If you want to learn more, you can google 'probiotics' or you can get a copy of Sally Fallon's book, _Nourishing Traditions_ and read it. You'll learn a lot more in the book than about probiotics. Katie and I, especially, have found it fascinating reading.
As always, your mileage may vary.
Love, Stephanie
Essentially, probiotics (pro-life) are the good bacteria that make for a healthy gut that digests food well, assimilates nutrients into the body and helps to fight off bad bacteria that gets in to our system (in the food we eat, for example) before it causes serious problems.
There are lots of things that can damage and destroy the good bacteria (flora) in our digestive tract. A big culprit is antibiotics. While they may save lives, antibiotics actually destroy bacteria--good and bad. Other medications, like chemotherapy, affect our intestinal flora. Stress can also have a negative impact. Our body 'uses' probiotics to help digest food and those need to be replaced.
The best source of pro-biotics is food. Of course, it must be the right kind of food (not all foods have pro-biotics in them). How the food is prepared is very important in the quality and quantity of pro-biotics.
Good sources of food that provide beneficial bacteria include fermented foods or cultured milk products. Fermented foods include real pickled items (like fermented pickled cucumbers, beets or other vegetables), real sauerkraut and kimchee. Foods that are made with distilled vinegar actually destroy the beneficial bacteria and work opposite of what we hope for. Cultured milk products include yogurt (with active cultures), kefir, properly made cheeses and even butter made with cultured cream.
Sometimes it isn't possible to eat foods rich in beneficial bacteria. While there is some dispute regarding how well probiotic nutritional supplements actually help, I contend they are better than doing nothing at all. That is purely a personal assessment.
James' gastro-intestinal system is already compromised. On top of that, he has chemotherapy, an onslaught of antibiotics at various points in time and varying degrees of stress in his little life as many people he doesn't know have to do undesirable things to him. We believe it is important to try to give him as much benefit as we can in this area. As much as possible, we use good quality yogurt as part of his g-tube feeds. Sometimes we are unable to do this and we supplement with a powdered probiotic. When he is getting lots of antibiotics (we just finished a pretty heavy-duty course) and when he is under extra stress (at the hospital), we try to use both.
I chose James' probiotic supplement by going to the local-to-the-hospital Whole Foods Market and looking at all that they had available. A good pro-biotic will be refrigerated. I chose one of the brands that had a wide variety and larger quantities of probiotics listed on the bottle. As I'm reading more, I may change my approach in the future.
If you want to learn more, you can google 'probiotics' or you can get a copy of Sally Fallon's book, _Nourishing Traditions_ and read it. You'll learn a lot more in the book than about probiotics. Katie and I, especially, have found it fascinating reading.
As always, your mileage may vary.
Love, Stephanie
Wednesday, June 13, 2007
Momma Kitty
Last October we finally found a precious family who had a sweet kitty who needed a home. We couldn't take just any kitty. This kitty had to be a mouser and she needed to be able to live outside because we thought we had two family members who are allergic to cats. We were tickled to get our kitty...whom we named Kitty--creative, I know, but it really suits her. It turns out that our two 'allergic' members are not allergic to Kitty. Kitty's momma, Gracie is a good mouser and we now know that Kitty is as well. Gracie was a young momma, even as kitties go, but she was a good momma--teaching her kittens to hunt mice and to use a litter box.
A week ago, Kitty became a momma. She has two kittens and she is a wonderful momma. She is steadfast and patient in feeding and caring for them and they are growing like little weeds. We don't know yet if they are boys are girls (or one of each), but we are hoping that Kitty teaches them to be good mousers too. Then, we will have a trio of farm cats for our new little homestead.
You can see a picture of Kitty and her kittens here. Of course, the children are just mesmerized by the kitties. I don't think any of us realized how small new kitties are. And it is always wonderful to have new life around.
We are blessed.
Love, Stephanie
A week ago, Kitty became a momma. She has two kittens and she is a wonderful momma. She is steadfast and patient in feeding and caring for them and they are growing like little weeds. We don't know yet if they are boys are girls (or one of each), but we are hoping that Kitty teaches them to be good mousers too. Then, we will have a trio of farm cats for our new little homestead.
You can see a picture of Kitty and her kittens here. Of course, the children are just mesmerized by the kitties. I don't think any of us realized how small new kitties are. And it is always wonderful to have new life around.
We are blessed.
Love, Stephanie
Closing date
Things are coming together for us to purchase land in the community we want to be a part of.
Closing is scheduled for next Monday, June 18th. We are excited about being land owners again. Even more than that, we are excited to move along with establishing our life down here in Georgia. I'm sure we can't even begin to imagine what all the Lord has in store for us, but I have no doubt that it will continue to be ONE BIG ADVENTURE. :*)
Love, Stephanie
Closing is scheduled for next Monday, June 18th. We are excited about being land owners again. Even more than that, we are excited to move along with establishing our life down here in Georgia. I'm sure we can't even begin to imagine what all the Lord has in store for us, but I have no doubt that it will continue to be ONE BIG ADVENTURE. :*)
Love, Stephanie
At the clinic
We arrived at the clinic this morning around 8:30 and by 11:05, James was starting his methotrexate. It worked out well to have him getting his hydration last night and we are grateful for all the hoops folks jumped through to make it work.
If all goes just perfect, James will be done with methotrexate near 11:05 tomorrow morning and will continue to get IV bicarbonate solution to help flush the IV until Friday morning at about 11:05. Then they will take a blood draw (which they will also do Thursday morning) and if his blood methotrexate levels are good and everything else is in order, he can be discharged.
While most chemo patients get their treatments in the clinic like we are doing today, this is our very first time in the clinic for chemo. Up until now, James has gotten all of his treatments inpatient. Now we'll know better for the next time.
Please pray:
If all goes just perfect, James will be done with methotrexate near 11:05 tomorrow morning and will continue to get IV bicarbonate solution to help flush the IV until Friday morning at about 11:05. Then they will take a blood draw (which they will also do Thursday morning) and if his blood methotrexate levels are good and everything else is in order, he can be discharged.
While most chemo patients get their treatments in the clinic like we are doing today, this is our very first time in the clinic for chemo. Up until now, James has gotten all of his treatments inpatient. Now we'll know better for the next time.
Please pray:
- that James' Hickman (central line) will work just like it's supposed to.
- that he will be and remain infection and fever free.
- that we would be able to keep James comfortable (minimizing his discomfort from chemo side effects).
Love, Stephanie
Tuesday, June 12, 2007
The adventure continues
Today Vern, Hannah, James and I headed for Atlanta at about 0830 to be here for an 11oo show time in day surgery. The plan: to remove James' second failed port, replace it with a new double lumen Hickman and have a spinal tap, during which he would get the first part of his methotrexate. The rest of the plan included being admitted to the hospital to get the rest of his methotrexate and then flushing and hopefully, Lord willing, being home for supper on Friday night.
Just before James was supposed to leave for the OR, Dr. Keller came to see us--it was his first visit to the day surgery floor. He came to tell us that the whole hospital was so full that there was no bed for James for tonight. His preference was that we at least proceed with the port removal and Hickman insertion, but he gave us the option of delaying the chemo til next week or coming back tomorrow to be admitted (he is fairly confident there will be a room for us, because they expect to have five discharges tomorrow on the cancer center floor and James will have priority for a bed because his chemo would already be started).
At first, I thought that perhaps pushing out the chemo would be a good thing in terms of planning for other things going on at home. Then I found myself saying that we could stay but we needed a place to stay for the night, and we wanted to be able to continue with the normal protocol, just like we had been in the hospital in order to not delay James' chemo. That meant we needed to be able to give James his bicarbonate solution--either by g-tube or by IV-- so that he would be more likely to be ready for chemo in the morning. Dr. Keller thought that was a great idea and reiterated the importance of starting James' IV methotrexate within 24 hours of getting intrathecal (in the spinal fluid) methotrexate. He left to get the ball rolling with the social worker to find us a place to stay for the night.
I was truly impressed with how things came together. It seems that the Lord has had his hand on everything, causing it to work out for our good, even when things didn't seem so great. If I tried to explain all the good, it would take too much space and time, but I'll try to share a few.
The Ronald McDonald house was full, so we ended up staying at a nice motel just down the road from the hospital. We got their last room (paid for with funds from a special hospital account with donations solely for helping families like ours), which ended up having a kitchenette. In order to save funds and eat better, we had brought our own food from home, so we were able to easily fix and eat supper and take care of all James needed. It has been a quiet, restful evening (for the most part) and we are looking forward to retiring soon.
Because we were in the hotel, we had to use our feeding pump, which decided not to work. We ended up calling the company, which is local here, to see if they could help. They ended up bringing us the new, upgraded version of the pump and setting it for us to have a couple of extra helpful features. This was a wonderful bonus, which I realize not all will appreciate, but you'll have to trust me. :*)
By, hopefully being at the hospital one fewer night, that will be a little less lack of continuity in nursing care and more sanity care for mom.
I'm always glad to have more time with Vern--even when I have to share him!
There were some other amazing and encouraging things as well. While we are in the hospital, I hope to be able to share a little more of what is going on in the homesteading part of our big adventure.
In the mean time, sleep well.
Love, Stephanie
Just before James was supposed to leave for the OR, Dr. Keller came to see us--it was his first visit to the day surgery floor. He came to tell us that the whole hospital was so full that there was no bed for James for tonight. His preference was that we at least proceed with the port removal and Hickman insertion, but he gave us the option of delaying the chemo til next week or coming back tomorrow to be admitted (he is fairly confident there will be a room for us, because they expect to have five discharges tomorrow on the cancer center floor and James will have priority for a bed because his chemo would already be started).
At first, I thought that perhaps pushing out the chemo would be a good thing in terms of planning for other things going on at home. Then I found myself saying that we could stay but we needed a place to stay for the night, and we wanted to be able to continue with the normal protocol, just like we had been in the hospital in order to not delay James' chemo. That meant we needed to be able to give James his bicarbonate solution--either by g-tube or by IV-- so that he would be more likely to be ready for chemo in the morning. Dr. Keller thought that was a great idea and reiterated the importance of starting James' IV methotrexate within 24 hours of getting intrathecal (in the spinal fluid) methotrexate. He left to get the ball rolling with the social worker to find us a place to stay for the night.
I was truly impressed with how things came together. It seems that the Lord has had his hand on everything, causing it to work out for our good, even when things didn't seem so great. If I tried to explain all the good, it would take too much space and time, but I'll try to share a few.
The Ronald McDonald house was full, so we ended up staying at a nice motel just down the road from the hospital. We got their last room (paid for with funds from a special hospital account with donations solely for helping families like ours), which ended up having a kitchenette. In order to save funds and eat better, we had brought our own food from home, so we were able to easily fix and eat supper and take care of all James needed. It has been a quiet, restful evening (for the most part) and we are looking forward to retiring soon.
Because we were in the hotel, we had to use our feeding pump, which decided not to work. We ended up calling the company, which is local here, to see if they could help. They ended up bringing us the new, upgraded version of the pump and setting it for us to have a couple of extra helpful features. This was a wonderful bonus, which I realize not all will appreciate, but you'll have to trust me. :*)
By, hopefully being at the hospital one fewer night, that will be a little less lack of continuity in nursing care and more sanity care for mom.
I'm always glad to have more time with Vern--even when I have to share him!
There were some other amazing and encouraging things as well. While we are in the hospital, I hope to be able to share a little more of what is going on in the homesteading part of our big adventure.
In the mean time, sleep well.
Love, Stephanie
Tuesday, June 5, 2007
June 5, 2007
Yesterday we drove to Atlanta to visit Dr. Keller and let him take a look at James. He was pretty impressed with James' progress. We have been too. He was sorry that the port doesn't seem to work for James and apologetic about another surgery to get the old hardware out and do something different. The plan is to put in a Hickman (the kind of central line he had in the first place) next week and proceed with the chemo (methotrexate again) that he is due to get next week.
We did bring James home uneventfully last Tuesday. Just before he left, though, the nurse tried to flush his PICC line and it was blocked already, so they removed it. It was only intended to be temporary, but we were hoping for a little longer than that. In the end, it worked out well that he didn't come home with it in place.
We have had a good week together as a family. Everything is growing--the chickens, the children, the flowers and the garden plants--and for that we are very grateful. We got rain over the weekend (we heard there was 2.5-3"). This was the first rain here since March 3rd. We could use another 7" in the not-too-distant future--slow and steady.
The land we are considering purchasing as been surveyed, so now we have a better idea of the away-from-the-road boundary and a more accurate picture of the size and lay of the land. Sunday, Vern and Owen donned their 'woods' clothes and machetes and walked the line. As they were hiking back to the car, Owen was stung twice by yellow jackets. He was pretty sore to start with, but ready to sleep after a dose of generic Benadryl.
After we visited with Dr. Keller yesterday, we went further north to Canton, Georgia to purchase some used waterers for our chickens and some barrels for feed and water. We found out about these items through a Georgia farm paper. On the way, we picked up lunch from the Varsity across from Georgia Tech--that was an experience. Someday, maybe we'll go back and actually eat there. We were glad to be home about 9:30 or 10 and grateful to have dinner warm on the stove waiting for us. After winding down, we all went to bed and are back at it for another full day.
Thanks so much for checking on us and for your thoughts and prayers.
Love, Stephanie
We did bring James home uneventfully last Tuesday. Just before he left, though, the nurse tried to flush his PICC line and it was blocked already, so they removed it. It was only intended to be temporary, but we were hoping for a little longer than that. In the end, it worked out well that he didn't come home with it in place.
We have had a good week together as a family. Everything is growing--the chickens, the children, the flowers and the garden plants--and for that we are very grateful. We got rain over the weekend (we heard there was 2.5-3"). This was the first rain here since March 3rd. We could use another 7" in the not-too-distant future--slow and steady.
The land we are considering purchasing as been surveyed, so now we have a better idea of the away-from-the-road boundary and a more accurate picture of the size and lay of the land. Sunday, Vern and Owen donned their 'woods' clothes and machetes and walked the line. As they were hiking back to the car, Owen was stung twice by yellow jackets. He was pretty sore to start with, but ready to sleep after a dose of generic Benadryl.
After we visited with Dr. Keller yesterday, we went further north to Canton, Georgia to purchase some used waterers for our chickens and some barrels for feed and water. We found out about these items through a Georgia farm paper. On the way, we picked up lunch from the Varsity across from Georgia Tech--that was an experience. Someday, maybe we'll go back and actually eat there. We were glad to be home about 9:30 or 10 and grateful to have dinner warm on the stove waiting for us. After winding down, we all went to bed and are back at it for another full day.
Thanks so much for checking on us and for your thoughts and prayers.
Love, Stephanie
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