Hannah, James and I are back at the hospital for a scheduled chemo treatment after enjoying about three weeks at home. We were beginning to actually feel normal! Yes, it was GREAT. And we are thankful for the break.
Just after I started trying to keep up on blogging about our house progress, the computer died. Vern tried to fix it with Norton Utilities to no avail. We think the next stop is the Geek Squad, but I'm not sure right now when that will happen.
We are grateful for continued progress on the house. The baseboard is all in and all the doors (including pocket doors, which weren't up before) are up. There is one more little trim detail that needs to be finished before painting (this weekend, Lord willing). The children will work this week on spackling all the nail holes in the trim and generally cleaning up and dusting the place. They also hope to get more roots cut out of the garden area so that we can plant some Fall crops (like broccoli, kale, brussels sprouts and carrots).
We are waiting for James' urine to clear so we can start his chemo. I will try to update later since we have access to computers here at the hospital.
thanks for checking on us... Love, Stephanie
Showing posts with label moving. Show all posts
Showing posts with label moving. Show all posts
Monday, October 1, 2007
Tuesday, September 25, 2007
The house that God is building
We really didn't think we'd break ground on our new house until September. But God had other plans.
One of the men at our church, who is a local contractor, had a week in July that was open before he had a full schedule. We had a question to ask him about our house and he offered to use his crew, at his cost, to put in the foundation for our house. So during a week I was in the hospital with James, Mr. David and his crew were digging and pouring footers. Mr. David also coordinated and negotiated with the mason to lay the block for our crawlspace and with another contractor to pour the conrete pad for our carport. When all was said and done, the foundation work came in about 20% below our budget!
The foundation sat quietly while we worked behind the scenes with Mr. Joey, another contractor from our church who sold us the land and said he wanted to offer his crew, at his cost, to frame up our new house. He coached us through the planning process and spoke with some contractors on our behalf. The ball was rolling with the power company, the electrian, plumber, septic guy and well driller. Not long after, the HVAC guy, another fellow from our church, was in on the act. Mr. Joey and Mr. David both credit the Lord with giving them success in their businesses that allows them to donate their crews this way. We are grateful beyond words!
After a much-deserved vacation with his family, Mr. Joey returned with his crew and started framing our house. That was during two of the hottest weeks in August. Owen worked with them and LOVED it! He learned a great deal and demonstrated his ability to work hard over and over. I actually ended up back in the hospital with James during that time and the house kept moving along. By now, Vern was also working at his new job. Katie was pulling everything together at home and feeding the framing crew lunch every day as well.
It took two weeks to frame the house. The incredible heat slowed down a normally speedy crew which allowed us to keep up with what was going on and make a few little changes along the way.
Another contractor from our church, Mr. John, ordered our roofing and led a volunteer crew (as a volunteer himself and with his sons) to roof our house one Saturday. Our roof is metal and because it began to rain at the very end of the day, the last few pieces couldn't go up. As the last few pieces went up on the roof the next week, the plumber, electrician and HVAC guys were busying themselves in their respective areas of expertise. Everyone has been a pleasure to work with and have been available right when we needed them, thanks to Mr. Joey's planning and coordination.
After a few more framing issues were completed inside the house, the insulation crew worked their magic (for less than the cost of us just buying the insulation --how do they do that?), then the sheetrock crews (one for sheetrocking, one for mud--three times--and one for sanding) blew through the house in near-record time, resulting in a decrease in that bill too!
God keeps blessing us with gifts (a kitchen sink and faucet, dishwasher, microwave, money for an early inheritance) and discounts (sometimes contractors have given us their cost or other discounts--plumbing and HVAC)and sometimes we've had coupons for a discount or found just what we needed on a clearance rack!
At this point, we are within our budget, but we still have a ways to go and some things remain unknown, like how deep our well will be! But we do have a septic system in and we are working on trim work. Owen is learning all kinds of things and installed all the exterior knobs on the doors (he'll do the deadbolts when we get them and the interior knobs once we get to that point). He enjoys the hard work and the sense of accomplishment that he gets from this project!
We've taken James over to the land a couple of times. He loves it. Unfortunately, when he goes over there, his dressings and ostomy bag come off or come loose in record time. He is busy there, but he is busy here at home too. There is lots of dust at the house, but it can't get under the dressings and such unless they are already loose. We think that the difference is the lack of air conditioning over at the new place and that, with the humidity and heat, he just sweats over there. So, he will have to stay home for a while--until we have some air conditioning available, or until the weather cools enough and dries enough. Honestly, I think the air conditioning will be available first!
It is our earnest desire to build this house debt free. We may do without a few things initially, but we don't mind. Others have lived with so much less than we will have. Certainly we will have a great appreciation for all that is going into this new house! Indeed we already do!
I hope to share more about what we are doing, but share this as a history to get us up to where we are today. Owen and I are heading back to the house now to work some more and keep things moving.
Thanks for checking up on us. As always we love to hear from you! Please leave a note or send us an e-mail and let us know what's up in your neck of the woods!
Love, Stephanie
One of the men at our church, who is a local contractor, had a week in July that was open before he had a full schedule. We had a question to ask him about our house and he offered to use his crew, at his cost, to put in the foundation for our house. So during a week I was in the hospital with James, Mr. David and his crew were digging and pouring footers. Mr. David also coordinated and negotiated with the mason to lay the block for our crawlspace and with another contractor to pour the conrete pad for our carport. When all was said and done, the foundation work came in about 20% below our budget!
The foundation sat quietly while we worked behind the scenes with Mr. Joey, another contractor from our church who sold us the land and said he wanted to offer his crew, at his cost, to frame up our new house. He coached us through the planning process and spoke with some contractors on our behalf. The ball was rolling with the power company, the electrian, plumber, septic guy and well driller. Not long after, the HVAC guy, another fellow from our church, was in on the act. Mr. Joey and Mr. David both credit the Lord with giving them success in their businesses that allows them to donate their crews this way. We are grateful beyond words!
After a much-deserved vacation with his family, Mr. Joey returned with his crew and started framing our house. That was during two of the hottest weeks in August. Owen worked with them and LOVED it! He learned a great deal and demonstrated his ability to work hard over and over. I actually ended up back in the hospital with James during that time and the house kept moving along. By now, Vern was also working at his new job. Katie was pulling everything together at home and feeding the framing crew lunch every day as well.
It took two weeks to frame the house. The incredible heat slowed down a normally speedy crew which allowed us to keep up with what was going on and make a few little changes along the way.
Another contractor from our church, Mr. John, ordered our roofing and led a volunteer crew (as a volunteer himself and with his sons) to roof our house one Saturday. Our roof is metal and because it began to rain at the very end of the day, the last few pieces couldn't go up. As the last few pieces went up on the roof the next week, the plumber, electrician and HVAC guys were busying themselves in their respective areas of expertise. Everyone has been a pleasure to work with and have been available right when we needed them, thanks to Mr. Joey's planning and coordination.
After a few more framing issues were completed inside the house, the insulation crew worked their magic (for less than the cost of us just buying the insulation --how do they do that?), then the sheetrock crews (one for sheetrocking, one for mud--three times--and one for sanding) blew through the house in near-record time, resulting in a decrease in that bill too!
God keeps blessing us with gifts (a kitchen sink and faucet, dishwasher, microwave, money for an early inheritance) and discounts (sometimes contractors have given us their cost or other discounts--plumbing and HVAC)and sometimes we've had coupons for a discount or found just what we needed on a clearance rack!
At this point, we are within our budget, but we still have a ways to go and some things remain unknown, like how deep our well will be! But we do have a septic system in and we are working on trim work. Owen is learning all kinds of things and installed all the exterior knobs on the doors (he'll do the deadbolts when we get them and the interior knobs once we get to that point). He enjoys the hard work and the sense of accomplishment that he gets from this project!
We've taken James over to the land a couple of times. He loves it. Unfortunately, when he goes over there, his dressings and ostomy bag come off or come loose in record time. He is busy there, but he is busy here at home too. There is lots of dust at the house, but it can't get under the dressings and such unless they are already loose. We think that the difference is the lack of air conditioning over at the new place and that, with the humidity and heat, he just sweats over there. So, he will have to stay home for a while--until we have some air conditioning available, or until the weather cools enough and dries enough. Honestly, I think the air conditioning will be available first!
It is our earnest desire to build this house debt free. We may do without a few things initially, but we don't mind. Others have lived with so much less than we will have. Certainly we will have a great appreciation for all that is going into this new house! Indeed we already do!
I hope to share more about what we are doing, but share this as a history to get us up to where we are today. Owen and I are heading back to the house now to work some more and keep things moving.
Thanks for checking up on us. As always we love to hear from you! Please leave a note or send us an e-mail and let us know what's up in your neck of the woods!
Love, Stephanie
Thursday, July 26, 2007
Never a dull moment
The last couple of weeks have been filled to the brim.
James has had additional chemo and some additional side effects (nothing like he had during induction, thankfully!). We all kept hoping that he would make the turn upward before he had to go into the hospital. Especially since we (Dr. Keller, Vern and me) to skip his third dose of vincristine this time around.
As I understand it, the vincristine attacks the leukemia cells as they divide. Specifically it attacks a 'string-like thing', whose technical name escapes me, and stops the division and growth process. It so happens that nerve cells have the same string-like thing and so the vincristine also attacks all the nerve cells. So, while it looks like a person on vincristine is loosing muscle tone, they are actually losing nerve control. This seems to affect James the most in his already compromised intestinal tract.
The nerves aren't moving his stomache muscles to empty it's contents and eventually (it doesn't take long) the contents leak out around his g-tube. Then his g-tube site gets irritated. Because he is on steroids, it doesn't heal, it gets worse. And so James has a nasty pressure ulcer around his g-tube site. It seems it came on all of a sudden and it is infected.
Last night, we took him to the emergency center and through a sleepless series of events we are now at Egleston's and James has been admitted. He is getting an antibiotic and IV fluids. Hannah is with me. We aren't on the chemo floor, so we'll have to appeal tomorrow either to move, or for her to stay inspite of her young age. That would be a great thing to pray about!
Please also pray for wisdom for the doctors and that I would be able to effectively communicate my concerns. Pray for quick and complete healing. At this point, it looks like we could be here for a full week.
In other news: The Lord orchestrated the ground-breaking for our new home that we weren't expecting to happen until the middle to end of August. We are grateful for some very generous friends and brothers and sisters in Christ who are greatly easing our load. We appreciate all your prayers for the safety of all working on our house and for all the decisions that need to be made in the process.
Thanks for stopping by. Please comment or e-mail if you can. It means a great deal to know you visited.
Love, Stephanie
James has had additional chemo and some additional side effects (nothing like he had during induction, thankfully!). We all kept hoping that he would make the turn upward before he had to go into the hospital. Especially since we (Dr. Keller, Vern and me) to skip his third dose of vincristine this time around.
As I understand it, the vincristine attacks the leukemia cells as they divide. Specifically it attacks a 'string-like thing', whose technical name escapes me, and stops the division and growth process. It so happens that nerve cells have the same string-like thing and so the vincristine also attacks all the nerve cells. So, while it looks like a person on vincristine is loosing muscle tone, they are actually losing nerve control. This seems to affect James the most in his already compromised intestinal tract.
The nerves aren't moving his stomache muscles to empty it's contents and eventually (it doesn't take long) the contents leak out around his g-tube. Then his g-tube site gets irritated. Because he is on steroids, it doesn't heal, it gets worse. And so James has a nasty pressure ulcer around his g-tube site. It seems it came on all of a sudden and it is infected.
Last night, we took him to the emergency center and through a sleepless series of events we are now at Egleston's and James has been admitted. He is getting an antibiotic and IV fluids. Hannah is with me. We aren't on the chemo floor, so we'll have to appeal tomorrow either to move, or for her to stay inspite of her young age. That would be a great thing to pray about!
Please also pray for wisdom for the doctors and that I would be able to effectively communicate my concerns. Pray for quick and complete healing. At this point, it looks like we could be here for a full week.
In other news: The Lord orchestrated the ground-breaking for our new home that we weren't expecting to happen until the middle to end of August. We are grateful for some very generous friends and brothers and sisters in Christ who are greatly easing our load. We appreciate all your prayers for the safety of all working on our house and for all the decisions that need to be made in the process.
Thanks for stopping by. Please comment or e-mail if you can. It means a great deal to know you visited.
Love, Stephanie
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
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
Wednesday, June 13, 2007
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
Wednesday, May 23, 2007
No photos, but a job
After my last post, I set up photos to upload and then Blogger decided it wouldn't take them. I needed to do other things, so I set that aside. Today, the computer is being finicky. I will do what I can do.
Vern called bright and early this morning to let me know that he'd gotten the call from Mr. Davis, his new boss. He is probably at the school, as I type, signing the paperwork and meeting some of the teachers. Today is the last day of post-planning, so this is his last opportunity to talk to the math department head before he starts work July 31st. This is like planting our fields. Lord willing, we will now turn our attention to 'building our house'.
Dr. Keller came by to check on James. He was pretty tickled with how well James is doing. I teased him a little about his advertisement for the port over the Hickman. He was very good-natured about it. We also chatted some about supplements and beneficial foods for James. He said that they don't know why, but serious and systemic yeast infections seem to be far more common in people on chemo than it used to be. He even said he thought they should be using more pro-biotics and that he has concerns over some cancer diets that limit things like fresh fruits and vegetables. I currently have James on a high potency pro-biotic and we are looking to get him onto some 'green juice' as well.
Sometime today I'll meet with the dietician here to talk about James' calorie needs. It seems he is gaining weight far too quickly (almost four pounds in the two-and-a-half weeks we were out of the hospital) and we need to figure out what his real calorie needs are and how best to meet them.
We are looking forward to a visit today from my mom and dad who are driving down from northeast Georgia. It is nice to see them, a closer drive for them and they love to come see James, espeically.
Besides finishing up James' chemo, I am not sure what else the day holds. I will try again to post some photos, but, as I often tell the children, "No promises."
Thanks for checking in with us. We love to hear from you!
Love, Stephanie
Vern called bright and early this morning to let me know that he'd gotten the call from Mr. Davis, his new boss. He is probably at the school, as I type, signing the paperwork and meeting some of the teachers. Today is the last day of post-planning, so this is his last opportunity to talk to the math department head before he starts work July 31st. This is like planting our fields. Lord willing, we will now turn our attention to 'building our house'.
Dr. Keller came by to check on James. He was pretty tickled with how well James is doing. I teased him a little about his advertisement for the port over the Hickman. He was very good-natured about it. We also chatted some about supplements and beneficial foods for James. He said that they don't know why, but serious and systemic yeast infections seem to be far more common in people on chemo than it used to be. He even said he thought they should be using more pro-biotics and that he has concerns over some cancer diets that limit things like fresh fruits and vegetables. I currently have James on a high potency pro-biotic and we are looking to get him onto some 'green juice' as well.
Sometime today I'll meet with the dietician here to talk about James' calorie needs. It seems he is gaining weight far too quickly (almost four pounds in the two-and-a-half weeks we were out of the hospital) and we need to figure out what his real calorie needs are and how best to meet them.
We are looking forward to a visit today from my mom and dad who are driving down from northeast Georgia. It is nice to see them, a closer drive for them and they love to come see James, espeically.
Besides finishing up James' chemo, I am not sure what else the day holds. I will try again to post some photos, but, as I often tell the children, "No promises."
Thanks for checking in with us. We love to hear from you!
Love, Stephanie
Tuesday, May 22, 2007
A job?
Monday, while we were waiting for James to get out of surgery and trying to get a little snack out of the vending machine, Vern's phone rang. He almost didn't answer it, since he was in the middle of such an important task and he didn't recognize the number. :*)
But something compelled him to answer the phone and it was the principal from Johnson County, with whom Vern had briefly met last week when he submitted his application package for a math teaching position there. He was very busy last week with the finishing up of the school year and testing and all and he told Vern he would call him next week after their brief conversation. We thought he would call to schedule an interview and wondered how long the process might take and how many, if any others, had applied for the position. Instead, this man asked Vern if he could recommend Vern to the school board for them to consider him Tuesday night at their meeting.
Vern said yes.
We hope to know something more about this job by Wednesday or Thursday and we are grateful to the Lord for this turn of events as we learned last week that two of the positions Vern had applied for were already filled.
Please pray with us that if this is the job the Lord has for Vern, everything would work smoothly and if He has something better that He would close this door.
Love, Stephanie
But something compelled him to answer the phone and it was the principal from Johnson County, with whom Vern had briefly met last week when he submitted his application package for a math teaching position there. He was very busy last week with the finishing up of the school year and testing and all and he told Vern he would call him next week after their brief conversation. We thought he would call to schedule an interview and wondered how long the process might take and how many, if any others, had applied for the position. Instead, this man asked Vern if he could recommend Vern to the school board for them to consider him Tuesday night at their meeting.
Vern said yes.
We hope to know something more about this job by Wednesday or Thursday and we are grateful to the Lord for this turn of events as we learned last week that two of the positions Vern had applied for were already filled.
Please pray with us that if this is the job the Lord has for Vern, everything would work smoothly and if He has something better that He would close this door.
Love, Stephanie
Wednesday, April 11, 2007
Moving right along
James continues to improve here. He hasn't needed any pain meds since early Tuesday morning. His personality is beginning to shine again, which is always encouraging. He selectively waves good-bye to some of his nurses and doctors, which just makes their day. He is getting feisty when we (or the nurses or techs) have to do things he doesn't like. This evening he was playing with the lumens from his central line, kind of flipping one of them from side to side like a little rope. He even smiled for the camera!
This morning James had to be NPO (nothing by mouth), including breastfeeding, from about 7 a.m. until 11:30, when he was scheduled for a HIDA scan. This scan checks for gallbladder function using some incredible 3-D imaging technology. The initial scan took about 45 minutes, then we had to go back downstairs for one more picture around 3:30 p.m. The preliminary results say that his gallbladder is functioning as it should. It was certainly less stressful on all of us to have Katie here to help with James during the time he couldn't nurse.
Even earlier this morning, James had another x-ray to see if he still has air in his belly. We had hoped this would show that things have emptied enough so the tube could be removed. We haven't actually heard back the results of the x-ray, but James still has his tube. I will be asking some more questions about that tomorrow during rounds. The hard part is that the surgeons (the responsible folks I need to ask these questions of), come very early in the morning for their rounds.
We missed the physical therapist today (she came twice--both times we were downstairs for James' scans). She is supposed to come by again tomorrow and I think James will be ready for some activity.
During James' scan, Katie and I checked out the gift shop, the eating area, the chapel, the little aquarium and the cafeteria. We decided that the cafeteria has much better food selections than the hospital room menu. Why is it that the sick people have to eat the worst food? At the gift shop, we picked up a little box of Tide so we could do laundry and now we have clean clothes.
I hope to hae some idea tomorrow of what milestones we need to reach in order to take James home.
With James feeling better, it's a little easier to get some good photos to post, so without further ado..
James snuggled with Katie during some of the easier time of waiting for his scan while watching whales on the TV.
After catching up with nursing, James has a nice smile for the camera.
From the home folks--Vern has a list running and is adding to and crossing off, feeling like he is getting a handle on things there.
Thanks for checking up on us.
Love, Stephanie
This morning James had to be NPO (nothing by mouth), including breastfeeding, from about 7 a.m. until 11:30, when he was scheduled for a HIDA scan. This scan checks for gallbladder function using some incredible 3-D imaging technology. The initial scan took about 45 minutes, then we had to go back downstairs for one more picture around 3:30 p.m. The preliminary results say that his gallbladder is functioning as it should. It was certainly less stressful on all of us to have Katie here to help with James during the time he couldn't nurse.
Even earlier this morning, James had another x-ray to see if he still has air in his belly. We had hoped this would show that things have emptied enough so the tube could be removed. We haven't actually heard back the results of the x-ray, but James still has his tube. I will be asking some more questions about that tomorrow during rounds. The hard part is that the surgeons (the responsible folks I need to ask these questions of), come very early in the morning for their rounds.
We missed the physical therapist today (she came twice--both times we were downstairs for James' scans). She is supposed to come by again tomorrow and I think James will be ready for some activity.
During James' scan, Katie and I checked out the gift shop, the eating area, the chapel, the little aquarium and the cafeteria. We decided that the cafeteria has much better food selections than the hospital room menu. Why is it that the sick people have to eat the worst food? At the gift shop, we picked up a little box of Tide so we could do laundry and now we have clean clothes.
I hope to hae some idea tomorrow of what milestones we need to reach in order to take James home.
With James feeling better, it's a little easier to get some good photos to post, so without further ado..
James snuggled with Katie during some of the easier time of waiting for his scan while watching whales on the TV.
After catching up with nursing, James has a nice smile for the camera.From the home folks--Vern has a list running and is adding to and crossing off, feeling like he is getting a handle on things there.
Thanks for checking up on us.
Love, Stephanie
Moving right along
James continues to improve here. He hasn't needed any pain meds since early Tuesday morning. His personality is beginning to shine again, which is always encouraging. He selectively waves good-bye to some of his nurses and doctors, which just makes their day. He is getting feisty when we (or the nurses or techs) have to do things he doesn't like. This evening he was playing with the lumens from his central line, kind of flipping one of them from side to side like a little rope. He even smiled for the camera!
This morning James had to be NPO (nothing by mouth), including breastfeeding, from about 7 a.m. until 11:30, when he was scheduled for a HIDA scan. This scan checks for gallbladder function using some incredible 3-D imaging technology. The initial scan took about 45 minutes, then we had to go back downstairs for one more picture around 3:30 p.m. The preliminary results say that his gallbladder is functioning as it should. It was certainly less stressful on all of us to have Katie here to help with James during the time he couldn't nurse.
Even earlier this morning, James had another x-ray to see if he still has air in his belly. We had hoped this would show that things have emptied enough so the tube could be removed. We haven't actually heard back the results of the x-ray, but James still has his tube. I will be asking some more questions about that tomorrow during rounds. The hard part is that the surgeons (the responsible folks I need to ask these questions of), come very early in the morning for their rounds.
We missed the physical therapist today (she came twice--both times we were downstairs for James' scans). She is supposed to come by again tomorrow and I think James will be ready for some activity.
During James' scan, Katie and I checked out the gift shop, the eating area, the chapel, the little aquarium and the cafeteria. We decided that the cafeteria has much better food selections than the hospital room menu. Why is it that the sick people have to eat the worst food? At the gift shop, we picked up a little box of Tide so we could do laundry and now we have clean clothes.
I hope to hae some idea tomorrow of what milestones we need to reach in order to take James home.
With James feeling better, it's a little easier to get some good photos to post, so without further ado..
James snuggled with Katie during some of the easier time of waiting for his scan while watching whales on the TV.
After catching up with nursing, James has a nice smile for the camera.
From the home folks--Vern has a list running and is adding to and crossing off, feeling like he is getting a handle on things there.
Thanks for checking up on us.
Love, Stephanie
This morning James had to be NPO (nothing by mouth), including breastfeeding, from about 7 a.m. until 11:30, when he was scheduled for a HIDA scan. This scan checks for gallbladder function using some incredible 3-D imaging technology. The initial scan took about 45 minutes, then we had to go back downstairs for one more picture around 3:30 p.m. The preliminary results say that his gallbladder is functioning as it should. It was certainly less stressful on all of us to have Katie here to help with James during the time he couldn't nurse.
Even earlier this morning, James had another x-ray to see if he still has air in his belly. We had hoped this would show that things have emptied enough so the tube could be removed. We haven't actually heard back the results of the x-ray, but James still has his tube. I will be asking some more questions about that tomorrow during rounds. The hard part is that the surgeons (the responsible folks I need to ask these questions of), come very early in the morning for their rounds.
We missed the physical therapist today (she came twice--both times we were downstairs for James' scans). She is supposed to come by again tomorrow and I think James will be ready for some activity.
During James' scan, Katie and I checked out the gift shop, the eating area, the chapel, the little aquarium and the cafeteria. We decided that the cafeteria has much better food selections than the hospital room menu. Why is it that the sick people have to eat the worst food? At the gift shop, we picked up a little box of Tide so we could do laundry and now we have clean clothes.
I hope to hae some idea tomorrow of what milestones we need to reach in order to take James home.
With James feeling better, it's a little easier to get some good photos to post, so without further ado..
James snuggled with Katie during some of the easier time of waiting for his scan while watching whales on the TV.
After catching up with nursing, James has a nice smile for the camera.From the home folks--Vern has a list running and is adding to and crossing off, feeling like he is getting a handle on things there.
Thanks for checking up on us.
Love, Stephanie
Sunday, April 8, 2007
Life goes on
Thursday morning, Vern, James and I left bright and early to bring James to meet Dr. Keller and the crew at the AFLAC Cancer Center in Atlanta. We didn't factor in quite enough time for traffic around Atlanta, but that didn't seem to phase anyone.
During our visit, James' blood was drawn and everything looked great, except his potassium. Which was critically low. They determined we needed to admit James to correct this deficiency, which can cause heart arrhythmia and GI problems. The rough guess was that it would take two to three days to correct the problem and make sure it wasn't going to continue to be a problem.
What they didn't take into account was all the mid-course GI issues James was bringing with him from Minneapolis.
This morning, however, it seems we all realized what we were missing and now that James' potassium is looking great, we'll be hanging around for a while to see what we can do about his GI issues.
His belly is very distended (sometimes this can be related to low potassium) and gassy. He isn't passing gas or stool again. Last night we had some significant pain issues and now James is getting morphine again, although there is the usual concern that it could exacerbate the GI issues.
He has also had two fevers this hospital stay and is getting extra antibiotics. We are waiting to hear the results of blood cultures regarding infection and a CT scan regarding his belly. There is some concern that he could have teflitis (an infection of the bowels), though tests seem to be ruling it out. Once it is ruled out, we will move on with the GI doc and his oncologists to help regulate things and find some tolerable way to nourish his little body. In the meantime, he is back on TPN.
It has been very good to be nearer to home. Vern was able to bring the children back up Saturday. (He stayed with us Thursday night and went home Friday afternoon). We had asked about getting a room at the Ronald McDonald house, but there wasn't one available and they weren't big enough for our family. The social worker offered to find us a motel room through another organization's program, we applied and were approved. We were blessed to be provided with lodging for Saturday night and we enjoyed the weekend together as a family.
Katie is staying with me, at least for a time to help and be company.
My folks drove down from north Georgia/NC to see us all--especially James--and my Dad brought his not-very-frequently-used laptop. This is a huge blessing multiplied by the fact that the hospital has WiFi that we are able and welcomed to use. AND it works in James' room.
Please pray that we would have wisdom and find the knowledge we need to make choices regarding James' care and pain management. Pray for his doctors as well for wisdom and for eyes to see James' needs. Vern would like us to pray for wisdom for him to know 'what to do next' as there are many important things vying for his time and attention.
Please continue to pray for protection for James from infection.
With the blessing of the laptop, I hope to catch up on a few things, Lord willing and James tolerating! Thanks for checking up on us, thinking of us and praying for us. As always, we welcome your notes, thoughts and questions through the comments link below.
Love, Stephanie
During our visit, James' blood was drawn and everything looked great, except his potassium. Which was critically low. They determined we needed to admit James to correct this deficiency, which can cause heart arrhythmia and GI problems. The rough guess was that it would take two to three days to correct the problem and make sure it wasn't going to continue to be a problem.
What they didn't take into account was all the mid-course GI issues James was bringing with him from Minneapolis.
This morning, however, it seems we all realized what we were missing and now that James' potassium is looking great, we'll be hanging around for a while to see what we can do about his GI issues.
His belly is very distended (sometimes this can be related to low potassium) and gassy. He isn't passing gas or stool again. Last night we had some significant pain issues and now James is getting morphine again, although there is the usual concern that it could exacerbate the GI issues.
He has also had two fevers this hospital stay and is getting extra antibiotics. We are waiting to hear the results of blood cultures regarding infection and a CT scan regarding his belly. There is some concern that he could have teflitis (an infection of the bowels), though tests seem to be ruling it out. Once it is ruled out, we will move on with the GI doc and his oncologists to help regulate things and find some tolerable way to nourish his little body. In the meantime, he is back on TPN.
It has been very good to be nearer to home. Vern was able to bring the children back up Saturday. (He stayed with us Thursday night and went home Friday afternoon). We had asked about getting a room at the Ronald McDonald house, but there wasn't one available and they weren't big enough for our family. The social worker offered to find us a motel room through another organization's program, we applied and were approved. We were blessed to be provided with lodging for Saturday night and we enjoyed the weekend together as a family.
Katie is staying with me, at least for a time to help and be company.
My folks drove down from north Georgia/NC to see us all--especially James--and my Dad brought his not-very-frequently-used laptop. This is a huge blessing multiplied by the fact that the hospital has WiFi that we are able and welcomed to use. AND it works in James' room.
Please pray that we would have wisdom and find the knowledge we need to make choices regarding James' care and pain management. Pray for his doctors as well for wisdom and for eyes to see James' needs. Vern would like us to pray for wisdom for him to know 'what to do next' as there are many important things vying for his time and attention.
Please continue to pray for protection for James from infection.
With the blessing of the laptop, I hope to catch up on a few things, Lord willing and James tolerating! Thanks for checking up on us, thinking of us and praying for us. As always, we welcome your notes, thoughts and questions through the comments link below.
Love, Stephanie
Wednesday, April 4, 2007
Safe and sound
What an incredible trip we had. Through hail and severe thunderstorms, in traffic jams, and long days. We are so grateful to be all together again. Even though Vern, James and I will travel to Atlanta tomorrow.
We arrived in Milledgeville this afternoon and just spent time together. The children were in with Mrs. Anna (still pronounced missanna :*)) and we 'surprised' them there. We ran a few errands in town and relished being together.
Of course, billions of things went through my mind as we travelled. I did take some pictures that I might try to post another time. But now we are here and together and it is past my bedtime.
I am so thankful to have such a wonderful husband. He drove the whole way back from Minnesota (the fact that he loved driving the car we used did help, I'm sure). James blew out diapers all over the bed each night in the motel room and it was good to have an experienced nursing assistant available.
We are also grateful for all the wonderful thoughts and prayers on our behalf. Thank you (even though it seems so incredibly inadequate.) Tomorrow promises to be a long day. Please keep praying for James and for wisdom for us.
Love, Stephanie
We arrived in Milledgeville this afternoon and just spent time together. The children were in with Mrs. Anna (still pronounced missanna :*)) and we 'surprised' them there. We ran a few errands in town and relished being together.
Of course, billions of things went through my mind as we travelled. I did take some pictures that I might try to post another time. But now we are here and together and it is past my bedtime.
I am so thankful to have such a wonderful husband. He drove the whole way back from Minnesota (the fact that he loved driving the car we used did help, I'm sure). James blew out diapers all over the bed each night in the motel room and it was good to have an experienced nursing assistant available.
We are also grateful for all the wonderful thoughts and prayers on our behalf. Thank you (even though it seems so incredibly inadequate.) Tomorrow promises to be a long day. Please keep praying for James and for wisdom for us.
Love, Stephanie
Tuesday, April 3, 2007
Crossing the border
As of 3:05 pm GA time, the on-the-road Skelly's crossed the Kentucky border. They're hoping to make it to Nashville or perhaps Chattanooga tonight. James is doing well-- sleeping most of the time, I think. Hannah feeds him through his G-tube every half hour. We are all eagerly looking forward to having them home. They're really close!
Katie
Katie
Friday, March 30, 2007
Things are moving quickly
The pace has definitely picked up around here for us. We now have a definite plan for James being discharged on Monday (barring any unforeseen infections or setbacks, of course... this would be a great thing to pray for protection from!)
We have an appointment scheduled for James at Emory/Eggleston's for Thursday morning at 9:30 a.m. We should expect to be there for 2-4 hours, but it would be a good idea to bring things for an overnight stay. Just in case. I don't think I will go to another doctor's appointment without an overnight bag for the next few years!!!
I called the Corporate Angel Network and they have no flights that will get us to our scheduled appointment.
So Vern duly considered all the other options--we had quite a few and we are very thankful to have had options! In the end, it seems that the best option for us is for Vern to drive up from Georgia over the weekend and then all four of us will drive back to Georgia, hopefully arriving by Tuesday night. That will at least give us Wednesday together before we have to take James to his next big appointment.
James continues to do excellently. He is comfortable, eating more, has more interest in food and life and the things and people around him. I am very excited about the reality of his being ready to travel on Monday.
We have a lot of little things to get together here to be ready to leave, so those will be top priority for us. Every time I turn around, someone new is coming in to talk to me about something important regarding James' discharge and our trip to Georgia. I have my own share of phone calls to make as well.
Please keep praying for James' protection from infection and for all the details to come together.
Here's the big guy giving his best smile. He is really perking up in spite of his new 'chemo kid' hairdo. Now that he is smiling so big again, you can still see a little of the Bell's Palsy. But it is MUCH better.
James with one of his favorite nurses, Stacie. We are hoping she'll be with us through the weekend, helping us move on out the door and down the road!
The other of the two pictures Hannah took of me and James... he was pretty content for the moment!
James waving for the camera. Not sure if it was before or after he hit the nurse call button--twice!
Love to all, Stephanie
We have an appointment scheduled for James at Emory/Eggleston's for Thursday morning at 9:30 a.m. We should expect to be there for 2-4 hours, but it would be a good idea to bring things for an overnight stay. Just in case. I don't think I will go to another doctor's appointment without an overnight bag for the next few years!!!
I called the Corporate Angel Network and they have no flights that will get us to our scheduled appointment.
So Vern duly considered all the other options--we had quite a few and we are very thankful to have had options! In the end, it seems that the best option for us is for Vern to drive up from Georgia over the weekend and then all four of us will drive back to Georgia, hopefully arriving by Tuesday night. That will at least give us Wednesday together before we have to take James to his next big appointment.
James continues to do excellently. He is comfortable, eating more, has more interest in food and life and the things and people around him. I am very excited about the reality of his being ready to travel on Monday.
We have a lot of little things to get together here to be ready to leave, so those will be top priority for us. Every time I turn around, someone new is coming in to talk to me about something important regarding James' discharge and our trip to Georgia. I have my own share of phone calls to make as well.
Please keep praying for James' protection from infection and for all the details to come together.
Here's the big guy giving his best smile. He is really perking up in spite of his new 'chemo kid' hairdo. Now that he is smiling so big again, you can still see a little of the Bell's Palsy. But it is MUCH better.
James with one of his favorite nurses, Stacie. We are hoping she'll be with us through the weekend, helping us move on out the door and down the road!
The other of the two pictures Hannah took of me and James... he was pretty content for the moment!
James waving for the camera. Not sure if it was before or after he hit the nurse call button--twice!Love to all, Stephanie
Monday, March 26, 2007
Oh well
This morning's post triple copied because I posted it twice and the computer told me it didn't work. I didn't even realize it had posted three times until Hannah came back from reading the blog to tell me. Oh well. I can't figure out how to delete the extras, so, for now, they will stay.
James ate a little more today and we bumped up his feedings to just 10ml/hour (about 2 teaspoons). His belly is distended this evening and he was in quite a bit of pain earlier. We did go ahead and give him some morphine and the doctors stopped his tube feeding for the time being. It is important to get him back to his normal diet and off the IV feeds (also called TPN or Hyper-Al).
Vern had lots of help in Georgia unloading the truck and trailer and they got everything returned. I think everyone slept well last night. All are excited to be in Georgia. Grandpa John scoped out the little white house (I will write more about that later) and thought that for $30,000 and LOTS of elbow grease we could have ourselves a very nice place. Vern says when we all get down there, we'll have a cookout so we can see everyone like they have.
Tomorrow I think they are planning on sorting some boxes and taking a few more things up to storage.
Enjoy the pictures and please pray that James will heal enough, or whatever needs to happen will, so that he can get his feeds by mouth and through his g-tube without pain.
James--trying some of his spaghetti from lunch the proper (?!!!) way, with a little encouragement from Hannah.
A little playtime with the physical therapist.
Mr. Spaghetti Face relaxing after a hard morning of eating and playing... And getting a bath.
Love to all,
Stephanie
James ate a little more today and we bumped up his feedings to just 10ml/hour (about 2 teaspoons). His belly is distended this evening and he was in quite a bit of pain earlier. We did go ahead and give him some morphine and the doctors stopped his tube feeding for the time being. It is important to get him back to his normal diet and off the IV feeds (also called TPN or Hyper-Al).
Vern had lots of help in Georgia unloading the truck and trailer and they got everything returned. I think everyone slept well last night. All are excited to be in Georgia. Grandpa John scoped out the little white house (I will write more about that later) and thought that for $30,000 and LOTS of elbow grease we could have ourselves a very nice place. Vern says when we all get down there, we'll have a cookout so we can see everyone like they have.
Tomorrow I think they are planning on sorting some boxes and taking a few more things up to storage.
Enjoy the pictures and please pray that James will heal enough, or whatever needs to happen will, so that he can get his feeds by mouth and through his g-tube without pain.
James--trying some of his spaghetti from lunch the proper (?!!!) way, with a little encouragement from Hannah.
A little playtime with the physical therapist.
Mr. Spaghetti Face relaxing after a hard morning of eating and playing... And getting a bath.Love to all,
Stephanie
Tuesday, March 20, 2007
Surprises
Updated to add: James' procedure has been moved to 2:30 this afternoon. Please keep him in yours prayers for safekeeping, protection from infection/contamination and for a clear accurate test.
Well, the doctors said James did great during his procedure this afternoon. It took a little longer than we thought it would and when they came to get us, it seemed that things might not have gone as they thought they would.
They didn't.
To make a long story short, they (the pediatric gastroenterologist and his team, plus the surgeon involved) have reason to believe that last June, when James got his initial feeding tube, things moved around at just the wrong time and part of James' colon was caught in the cut where James G-tube was inserted into his stomach.
The more I ponder this possibility, the more sense it makes with some of the other 'evidence'.
In order to confirm this (or to rule it out), the plan is to do a contrast enema tomorrow (Tuesday) afternoon around 3:30. I think there will also be some sort of a scope, but I am not certain of that (it's on my list of questions for the docs tomorrow morning). Normally, this wouldn't be a big deal, but for a child on chemo with low white counts and low neutrophils (things in our blood that indicate the ability of our body to fight off infection), it can be a risky procedure. The greatest risk for James is the risk of infection. In fact, if the doctor is right in his hypothesis, it is truly a miracle that James has had no infection as a result of this.
I am not certain what all will occur if they confirm this is indeed what has happened. I do believe it will require yet a separate surgical procedure to repair the damage, but I don't know just how invasive that will be.
Please pray:
Love, Stephanie
Well, the doctors said James did great during his procedure this afternoon. It took a little longer than we thought it would and when they came to get us, it seemed that things might not have gone as they thought they would.
They didn't.
To make a long story short, they (the pediatric gastroenterologist and his team, plus the surgeon involved) have reason to believe that last June, when James got his initial feeding tube, things moved around at just the wrong time and part of James' colon was caught in the cut where James G-tube was inserted into his stomach.
The more I ponder this possibility, the more sense it makes with some of the other 'evidence'.
In order to confirm this (or to rule it out), the plan is to do a contrast enema tomorrow (Tuesday) afternoon around 3:30. I think there will also be some sort of a scope, but I am not certain of that (it's on my list of questions for the docs tomorrow morning). Normally, this wouldn't be a big deal, but for a child on chemo with low white counts and low neutrophils (things in our blood that indicate the ability of our body to fight off infection), it can be a risky procedure. The greatest risk for James is the risk of infection. In fact, if the doctor is right in his hypothesis, it is truly a miracle that James has had no infection as a result of this.
I am not certain what all will occur if they confirm this is indeed what has happened. I do believe it will require yet a separate surgical procedure to repair the damage, but I don't know just how invasive that will be.
Please pray:
- for wisdom for me to clearly see and understand all I need to in order to be able to sign the consent form. Or to be able to express my concerns enough that some alternative test or procedure can be found.
- for the continuing miracle of safety from infection for James.
- wisdom and guidance for the doctors involved.
- for strenghth and good health for the folks at home as they make the final push to pack and load for Friday's departure.
- that God would be glorified in all this.
Love, Stephanie
Thursday, March 1, 2007
Diagnosis
We are having an incredible snow storm here with whiteout conditions and lightening. The wind is incredible. We are grateful to be on the opposite side of the building to avoid all the window rattling. James' room is actually pretty cozy.
A few hours ago, Dr. Weirmaa came by to give us James' diagnosis. The additional samples and testing confirm that he has B cell ALL (Acute Lymphatic Leukemia). He has the standard risk variety (there is also high risk and very high risk). It appears that this is the best of bad and that the treatment for this will be much less aggressive than for many other kinds he could have. We are grateful for God's mercy in this.
Tomorrow morning, James will have an MRI to further investigate his Bell's Palsy. Bell's Palsy can be caused by Leukemia tumors on the seventh cranial nerve. If that was the case, Dr. Weirmaa would have expected to see a higher white blood cell count and more leukemia cells in his spinal fluid than she did. It also appears that the paralysis on the left side of his face began improving before he ever had any treatment. I noticed some improvement Monday and Tuesday and even more by today. The issue here is this: If James' central nervous system is affected by the leukemia, he will need radiation treatment to the brain in addition to the regular chemotherapy. A colleague of Dr. Wiermaa's who is a pediatric neurologist came by today to see him. She will see him tomorrow and weigh in on the MRI results as well. If they determine the Bell's Palsy is not related to the leukemia , he can be treated differently under a pedatric cancer study that is working on ways to classify cancer in children more distinctly allowing for minimally invasive/destructive treatment. We are all for using what the job needs and no more, realizing that too much increases risks of future complications from chemotherapy.
You may already know that chemotherapy is a poison. The key challenge being to poison the cancer without seriously poisoning the child (in this case). Dr. Weirmaa told me today that with other major form of Leukemia (AML), 15% of the patients die from the treatment. With the ALL, one percent die from treatment. So any effort to learn how to maximize poisoning the cancer and minimize damage to the patient is a worthwhile endeavor. This is not an experimental program, by any means. Just a study to tweak existing protocols. It is a world wide study (here, Canada, Europe, Israel, New Zealand are the places she mentioned that I can remember), and Dr. Wiermaa told me that whenever they do studies of this type and implement the results, they often see a five percent increase in the success of treating cancer in children.
So, tonight James will begin two more chemo drug treatments. One he will get through his feeding tube (which I think will prove to be a great thing for him to have now), and one through his central line. So, March 1st will be James' "Day 1" of treatment. More than likely we will stay here through Day 8 at least. He will have another bone marrow then and depending on the results, we will know if we have to stay here longer or if we can 'commute'.
This first month of treatment is the most critical and the riskiest. He is most susceptible to infection (particularly to things like chicken pox and staph or strep infections) and secondary infections are the greatest risk in chemo patients. He will have relatively intensive chemo for the first year of treatment and then will continue 'maintenance chemo' once a month for another 2 years and 2 months, assuming all goes well to that point.
It is pretty certain that our move to Georgia will be postponed. At this point, we know we will have to wait at least through the first month and perhaps through the second or third month of treatment.
Praise the Lord for:
1. Wisdom to help James with today's pain.
2. A clear diagnosis.
Please pray with us for:
1. A definitive call from the MRI tomorrow--preferably confirming that there is no Leukemia in his Central Nervous System and that he will not need radiation treatment.
2. Continuing wisdom to treat James and yet keep him comfortable and as safe as we can.
3. Protection from infection.
4. Wisdom and timing for transferring James' care and our family to Georgia and wisdom to know how to handle the time between closing on our house (March 23) and moving.
Stephanie
A few hours ago, Dr. Weirmaa came by to give us James' diagnosis. The additional samples and testing confirm that he has B cell ALL (Acute Lymphatic Leukemia). He has the standard risk variety (there is also high risk and very high risk). It appears that this is the best of bad and that the treatment for this will be much less aggressive than for many other kinds he could have. We are grateful for God's mercy in this.
Tomorrow morning, James will have an MRI to further investigate his Bell's Palsy. Bell's Palsy can be caused by Leukemia tumors on the seventh cranial nerve. If that was the case, Dr. Weirmaa would have expected to see a higher white blood cell count and more leukemia cells in his spinal fluid than she did. It also appears that the paralysis on the left side of his face began improving before he ever had any treatment. I noticed some improvement Monday and Tuesday and even more by today. The issue here is this: If James' central nervous system is affected by the leukemia, he will need radiation treatment to the brain in addition to the regular chemotherapy. A colleague of Dr. Wiermaa's who is a pediatric neurologist came by today to see him. She will see him tomorrow and weigh in on the MRI results as well. If they determine the Bell's Palsy is not related to the leukemia , he can be treated differently under a pedatric cancer study that is working on ways to classify cancer in children more distinctly allowing for minimally invasive/destructive treatment. We are all for using what the job needs and no more, realizing that too much increases risks of future complications from chemotherapy.
You may already know that chemotherapy is a poison. The key challenge being to poison the cancer without seriously poisoning the child (in this case). Dr. Weirmaa told me today that with other major form of Leukemia (AML), 15% of the patients die from the treatment. With the ALL, one percent die from treatment. So any effort to learn how to maximize poisoning the cancer and minimize damage to the patient is a worthwhile endeavor. This is not an experimental program, by any means. Just a study to tweak existing protocols. It is a world wide study (here, Canada, Europe, Israel, New Zealand are the places she mentioned that I can remember), and Dr. Wiermaa told me that whenever they do studies of this type and implement the results, they often see a five percent increase in the success of treating cancer in children.
So, tonight James will begin two more chemo drug treatments. One he will get through his feeding tube (which I think will prove to be a great thing for him to have now), and one through his central line. So, March 1st will be James' "Day 1" of treatment. More than likely we will stay here through Day 8 at least. He will have another bone marrow then and depending on the results, we will know if we have to stay here longer or if we can 'commute'.
This first month of treatment is the most critical and the riskiest. He is most susceptible to infection (particularly to things like chicken pox and staph or strep infections) and secondary infections are the greatest risk in chemo patients. He will have relatively intensive chemo for the first year of treatment and then will continue 'maintenance chemo' once a month for another 2 years and 2 months, assuming all goes well to that point.
It is pretty certain that our move to Georgia will be postponed. At this point, we know we will have to wait at least through the first month and perhaps through the second or third month of treatment.
Praise the Lord for:
1. Wisdom to help James with today's pain.
2. A clear diagnosis.
Please pray with us for:
1. A definitive call from the MRI tomorrow--preferably confirming that there is no Leukemia in his Central Nervous System and that he will not need radiation treatment.
2. Continuing wisdom to treat James and yet keep him comfortable and as safe as we can.
3. Protection from infection.
4. Wisdom and timing for transferring James' care and our family to Georgia and wisdom to know how to handle the time between closing on our house (March 23) and moving.
Stephanie
Sunday, February 25, 2007
Another big week
For some reason, I have a feeling we've got a few more big weeks ahead of us.
On Wednesday, we celebrated Vern's birthday. It 'just so happened' that his day off fell on his birthday and we enjoyed the afternoon and evening together as a family. We like to enjoy lots of good food around here and that is generally the 'theme' of every birthday celebration. Vern's was no exception. Katie made bagels so we could have bagel-wiches (fried egg with cheese on a toasted bagel) for breakfast. These are a favorite of Vern's. We haven't had them for some time since the hens haven't been laying many eggs and we haven't been buying bagels. Katie's were the best we've had in a long, long time. They were also a reasonable size--smaller than 'boughten' bagels. For Vern's dinner we had Shrimp Etouffe--another big treat. He was thinking about his birthday meal when the grocery store had a coupon deal for shrimp. So he picked some up and decided on Shrimp Etouffe.
I had a bunch of nice things I wanted to say about Vern on the occasion of his birthday, but I wasn't able to get them down before my steel trap opened unexpectedly and let them all loose. I will say, though, that while our life together has certainly taken many unexpected twists and turns, I would do it all over again and still look forward to growing old together. I thank God for you, Mr. Bear!
Wednesday was also the last local Down syndrome support group meeting. It is always so encouraging to see other moms and their children with Down syndrome. The children are so precious and so are the moms. I wish everyone could have a chance to meet these special people.
James has had a rough few days which we initially attributed to teething. Saturday, we noticed some things that prompted us to call the nurse line at the hospital and she recommended we bring James in within four hours. Since Grandma is here and Vern had gone to work, Owen got the van ready and warmed up for us. He cleared all the snow off and disconnected the trailer then helped get James into his seat. Katie and I loaded up James and headed out. It didn't take the ER doc long to diagnose James with Bell's palsy. I'll need to take him in to see his pediatrician on Monday. We are hopeful that it will quickly run it's course and James' nerve will be back to normal. This seems to have caused somewhat of a setback with James' eating since sometimes Bell's Palsy affects the taste buds.
We woke up this morning to about seven inches of fresh snow. That is more than we have had all winter so far and it is the first time folks have been out plowing driveways. We would have been snowed in if it weren't for Grandpa John. He called this morning, knowing that Vern's tractor (that runs the snow blower) was in the shop, and offered to come plow us out. Everyone is glad to have a chance to play in the snow before we leave. Some of us had been saying that we would miss the snow next winter... until someone else pointed out that we weren't getting any snow to speak of anyway--certainly not enough to slide or ski in. So now we remember and we will miss the snow.
The forecast is promising more snow showers this week and there is plenty to do to prepare for the move. We have a heads up that a second party wants to look at our house this week (they understand that we are getting ready to move and don't expect a show place). Vern realize this morning that his last day of work is two weeks from today. We have had some interest in the chickens and pens, Praise the Lord! Off we go!!!
Stephanie
On Wednesday, we celebrated Vern's birthday. It 'just so happened' that his day off fell on his birthday and we enjoyed the afternoon and evening together as a family. We like to enjoy lots of good food around here and that is generally the 'theme' of every birthday celebration. Vern's was no exception. Katie made bagels so we could have bagel-wiches (fried egg with cheese on a toasted bagel) for breakfast. These are a favorite of Vern's. We haven't had them for some time since the hens haven't been laying many eggs and we haven't been buying bagels. Katie's were the best we've had in a long, long time. They were also a reasonable size--smaller than 'boughten' bagels. For Vern's dinner we had Shrimp Etouffe--another big treat. He was thinking about his birthday meal when the grocery store had a coupon deal for shrimp. So he picked some up and decided on Shrimp Etouffe.
I had a bunch of nice things I wanted to say about Vern on the occasion of his birthday, but I wasn't able to get them down before my steel trap opened unexpectedly and let them all loose. I will say, though, that while our life together has certainly taken many unexpected twists and turns, I would do it all over again and still look forward to growing old together. I thank God for you, Mr. Bear!
Wednesday was also the last local Down syndrome support group meeting. It is always so encouraging to see other moms and their children with Down syndrome. The children are so precious and so are the moms. I wish everyone could have a chance to meet these special people.
James has had a rough few days which we initially attributed to teething. Saturday, we noticed some things that prompted us to call the nurse line at the hospital and she recommended we bring James in within four hours. Since Grandma is here and Vern had gone to work, Owen got the van ready and warmed up for us. He cleared all the snow off and disconnected the trailer then helped get James into his seat. Katie and I loaded up James and headed out. It didn't take the ER doc long to diagnose James with Bell's palsy. I'll need to take him in to see his pediatrician on Monday. We are hopeful that it will quickly run it's course and James' nerve will be back to normal. This seems to have caused somewhat of a setback with James' eating since sometimes Bell's Palsy affects the taste buds.
We woke up this morning to about seven inches of fresh snow. That is more than we have had all winter so far and it is the first time folks have been out plowing driveways. We would have been snowed in if it weren't for Grandpa John. He called this morning, knowing that Vern's tractor (that runs the snow blower) was in the shop, and offered to come plow us out. Everyone is glad to have a chance to play in the snow before we leave. Some of us had been saying that we would miss the snow next winter... until someone else pointed out that we weren't getting any snow to speak of anyway--certainly not enough to slide or ski in. So now we remember and we will miss the snow.
The forecast is promising more snow showers this week and there is plenty to do to prepare for the move. We have a heads up that a second party wants to look at our house this week (they understand that we are getting ready to move and don't expect a show place). Vern realize this morning that his last day of work is two weeks from today. We have had some interest in the chickens and pens, Praise the Lord! Off we go!!!
Stephanie
Saturday, February 17, 2007
It's been a big week
On Monday, Rebecca turned seven. It is so hard to believe she was just five months old when we moved from Georgia to Minnesota. Rebecca tries really hard to keep up with her big brother, Owen, who is almost 11. She is packed full of energy, which we are continually working on focusing and directing. For her special day, she picked out a hearty brunch of eggs from our own hens (sunnyside up, please), sausage (next year from our own pig, Lord willing :*)), waffles and applejuice. She enjoyed some helium balloons and before we had 'tea' for supper, we all changed into the clothes we wore to Jarod's and Anna's wedding. It was fun to dress up and we had quite the tea party with chicken salad tea sandwiches, cucumber sandwiches and cheese tea sandwiches. We also enjoyed fruit--cameo apple slices, strawberries, frosted grapes-- and sweets--Victorian Sponge Cake, cherry scones and muffin breads. All was accompanied by Earl Grey tea and Grandpa John and Grandma Nan (local adopted grandparents) came by with special birthday wishes. (Hopefully film, er-r, photos, will follow in the relatively near future.)
Wednesday was Valentines' day. In the morning, Vern made the run to the dairy (we take turns with two other families and this was our week to pick up wonderful, fresh milk). In the afternoon most of the children and I took James to see his audiologist. He was fit for new hearing aid molds and we'll return to get those and do a hearing test on or around March 2nd. While we were gone, the Valentine fairy (aka Grandpa John) stopped by with chocolates for all the children. They all made short work of them--even James, with a little bit of help!
During all this time, we were waiting for some level of confidence about the contract our buyers have on their house. It seems all the other realtors were content to just let things take their course with the other houses, risking delays, or worse, with closings. Since we have so much at risk here (with animals and furniture and other things to get rid of, since we are planning to leave the area), we weren't comfortable with that approach. Thankfully, our realtor, Jeanne wasn't either. She chased down all the paperwork and made sure that, to the degree that one can at this point in the process, things stand a good chance of moving along smoothly. On Thursday, Jeanne and we got enough information to have a comfort level that allows us to proceed with the sale of our house and remove our house from the market.
So, now what? Now we pack and sort and get ready to move to Georgia. Why Georgia? Because there is a group of folks there and a church there that we need to be a part of. Because the area there is wide open to small family farmers, which we aspire to be. Because some of us (no names mentioned here :*), but it's not me!) have bones that are particularly susceptible to cold northern MN winters and are concerned about the limiting effects of such winters as said individual(s) age... ;*). It'll also be kinda handy that Nona and Poppa, my folks, live about four hours north of where we plan to light and they are looking forward to having a turn at having the grandchildren closer.
This is not to say there aren't precious folks in Minnesota that we will miss very much. And we are hopeful that this blog and e-mail will allow us to keep in touch.
Stephanie
Wednesday was Valentines' day. In the morning, Vern made the run to the dairy (we take turns with two other families and this was our week to pick up wonderful, fresh milk). In the afternoon most of the children and I took James to see his audiologist. He was fit for new hearing aid molds and we'll return to get those and do a hearing test on or around March 2nd. While we were gone, the Valentine fairy (aka Grandpa John) stopped by with chocolates for all the children. They all made short work of them--even James, with a little bit of help!
During all this time, we were waiting for some level of confidence about the contract our buyers have on their house. It seems all the other realtors were content to just let things take their course with the other houses, risking delays, or worse, with closings. Since we have so much at risk here (with animals and furniture and other things to get rid of, since we are planning to leave the area), we weren't comfortable with that approach. Thankfully, our realtor, Jeanne wasn't either. She chased down all the paperwork and made sure that, to the degree that one can at this point in the process, things stand a good chance of moving along smoothly. On Thursday, Jeanne and we got enough information to have a comfort level that allows us to proceed with the sale of our house and remove our house from the market.
So, now what? Now we pack and sort and get ready to move to Georgia. Why Georgia? Because there is a group of folks there and a church there that we need to be a part of. Because the area there is wide open to small family farmers, which we aspire to be. Because some of us (no names mentioned here :*), but it's not me!) have bones that are particularly susceptible to cold northern MN winters and are concerned about the limiting effects of such winters as said individual(s) age... ;*). It'll also be kinda handy that Nona and Poppa, my folks, live about four hours north of where we plan to light and they are looking forward to having a turn at having the grandchildren closer.
This is not to say there aren't precious folks in Minnesota that we will miss very much. And we are hopeful that this blog and e-mail will allow us to keep in touch.
Stephanie
Sunday, February 11, 2007
Go, sort of
Yesterday, we had a party through to look at our house. It was cold and we stayed here during the showing. They seemed very interested in the house--particularly in the heating system. They are transferring into the area with the DNR. That's all we know at this point.
Today, Jeanne met with us to go over the contracts for all the houses leading up to buying ours. The folks that hope to buy our house have only one contingency remaining for financing, which depends on them selling their house. They are using local financing and have been asked all the questions to be sure all the bases are covered and there will be know surprises. The folks that hope to buy their home are in the same basic boat and we are comfortable with them as well. The buyers for this first home are from out of town. They have no house to sell, but they are an unmarried couple (at present) and one of them has a divorce that must be final in order for them to close on their home (the most expensive of the three houses involved here). They are also using financing from out of town, which sometimes causes problems (i.e. with appraisals done by folks who don't know the area here, lack of familiarity with the buyer, etc.).
We would not normally be inclined to pray for someone's divorce to be final. Many times we've prayed for reconciliation and for the process to be interrupted. Yesterday, Jarod blogged about jurisdiction and we are wondering if, perhaps, that issue applies here.
So this is where my swimming race analogy falls apart. Instead of "GO!!", we are sort of waiting a little more. Tomorrow, Jeanne will check with the out-of-town lending agency and with the realtor about the divorce situation. Then we will proceed toward closing on March 23rd, but our house will continue to be on the market and we will have it shown. This could be a little tricky with packing and with selling items we don't plan to move with us. While we aren't exactly diving in the pool and swimming as fast as we can, maybe we get to do some warm up laps for a little while.
It's a little better that standing out on the platform.
Today, Jeanne met with us to go over the contracts for all the houses leading up to buying ours. The folks that hope to buy our house have only one contingency remaining for financing, which depends on them selling their house. They are using local financing and have been asked all the questions to be sure all the bases are covered and there will be know surprises. The folks that hope to buy their home are in the same basic boat and we are comfortable with them as well. The buyers for this first home are from out of town. They have no house to sell, but they are an unmarried couple (at present) and one of them has a divorce that must be final in order for them to close on their home (the most expensive of the three houses involved here). They are also using financing from out of town, which sometimes causes problems (i.e. with appraisals done by folks who don't know the area here, lack of familiarity with the buyer, etc.).
We would not normally be inclined to pray for someone's divorce to be final. Many times we've prayed for reconciliation and for the process to be interrupted. Yesterday, Jarod blogged about jurisdiction and we are wondering if, perhaps, that issue applies here.
So this is where my swimming race analogy falls apart. Instead of "GO!!", we are sort of waiting a little more. Tomorrow, Jeanne will check with the out-of-town lending agency and with the realtor about the divorce situation. Then we will proceed toward closing on March 23rd, but our house will continue to be on the market and we will have it shown. This could be a little tricky with packing and with selling items we don't plan to move with us. While we aren't exactly diving in the pool and swimming as fast as we can, maybe we get to do some warm up laps for a little while.
It's a little better that standing out on the platform.
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