One Big Adventure
An opportunity to log in some of the thoughts and activities of our homeschooling family of eight. We love books and good food and aspire to a Christ-centered, multi-generational, agrarian life.

Thursday, December 20, 2007

Battle at the OK potty

That's what Vern called it last night when I had to 'do some battle' with James. He has started taking a great interest in playing in the potty water and last night he was arming up with toilet paper. I suspect he was gearing up to fill the potty and get plenty wet when Carrie called out for help. I told him to 'hand it over' and Daddy narrated from there. Honestly, I had to turn around a few times, so James couldn't see me giggle or see my eyes sparkle. I was glad to skip the messy part, hopefully we're breaking him of his habit.

Today we went to Macon for lab work. I was driving when the nurse called with the results, so the only number I'm sure I remember is his hemoglobin which was 10.8. Not great for a normal, healthy little person, but wonderful for one on chemo. So his reward is more chemo at home tonight. Except for two runs to Atlanta and one to Macon, we have been home since November 20th. That's a whole month!!! Lord willing, we won't have to return to Atlanta until January 3rd for a clinic visit and lab work.

I still find myself walking around in a fog on occasion. Katie is my right arm when it comes to running the house and Hannah is my right arm in taking care of James. I really don't know how I'd do it without them both. I feel pretty divided between settling in to our new house (which still love), 'doing' Christmas, accomplishing normal daily activities (like school and laundry) and managing James care which really is an art.
Below is James in one of his favorite modes of transportation--the bear crawl.

Thanks for stopping by. Love, Stephanie

Sunday, December 16, 2007

This weekend's excitement

Yesterday it rained. It was wonderful. I felt like Sarah, Plain and Tall when it rained in Maine after there had been such a terrible drought on their farm. I thought about the romance of stepping off the porch and turning slowly in the rain, drinking it in. However, it was quite a heavy rain and the temperature was around 60 degrees and it wasn't long before the reality of being soaking wet in the relative cold and wind took over my thoughts and I just admired the glorious falling water through from the dry porch.

It wasn't long before the power went out. This, of course, made me very grateful for the thought of being cold and wet and how it deterred me from doing something I would have regretted. Gratefully, we chose a gas cooktop and lunch preparationg was unhindered. Our work on closet shelving was cut short and then we were a little concerned about water. We still don't have back up water here for drinking, washing or flushing potties.

It was about three hours before power was restored (a dead tree had fallen on a line) and that was just the same time we were able to power up a neighbor's generator to see about getting the water running into the tub--just in case.

Later in the evening, there was a flurry of activity as someone discovered water dripping from a light fixture in our big common closet, between the bedrooms. Vern and Owen crawled out into the attic space to discover water running in around a plumbing vent. They employed a clever version of the normal leaky roof stop gap and checked it often until the downpour subsided.

This morning we learned, from neighbors who have a rain gauge, that we had four inches of rain over yesterday and last night. Praise the Lord. Today was crisp and clear. Not cold by Minnesota standards, certainly, but a welcome relief from the summer heat that came our way earlier this week.

After church and lunch, Vern and Owen set out to climb Mt. Skellyrest to repair the leaky roof. I got to provide ground support and everyone else got to watch. Katie photographically recorded the event for posterity. I'll try to put the pictures in another post--this one isn't working.

We remaining very grateful for the Lord's provision and protection in our lives.

Love, Stephanie for all

Sunday, December 2, 2007

Alive and well

Just a quick post here to let you know that we are indeed alive and well. We've done a few more stints in the hospital since I last wrote and we moved in to our new home November 3rd. Which we could not have done without the Lord providing so many many folks to bless us--the C's--whose home we invaded for SEVEN months--thanks PJB&L (they even said they've missed us! what great friends!), Joey&co who sold us our land for a great price and through in framing our house to boot...never mind all the land clearing, tree pushing, subcontractor coordinating and coaching, David&co who got our foundation in a month ahead of schedule as a gift, John&crew who put on our roof for the cost of materials, Bruce who has tirelessly handled so many of the fine details to make things work and continues to do so even without the motivation to get his room back! WE are blessed beyond words to have so many great folks in our lives...

We did get to enjoy Thanksgiving in our new home although we had hoped to spend that week with Mom Skelly, who celebrated 90 years Thanksgiving day. We weren't able to make it due to an unplanned hospital stay, but we know God has a plan in it all and we are grateful to Him for His protective hand in our lives.

Now it is December (wherever did the year go?) and we are continuing to settle in and prepare for the holidays. We aren't missing the snow yet, but then there wasn't a lot of snow the last few winters.

The hospital changed it's rules on blog access and I can no longer post from there. I am trying to get a photo album up on Picasa, but it keeps telling me I need an internet connection to upload. Doesn't dial up count? :*)...

Wishing you a wonderfully blessed holiday season... and hoping to be able to post some in the meantime. Thanks for checking up on us...I'm working on catching up with e-mails too... it's all a slow process and I appreciate your patience!

Love, Stephanie

Wednesday, October 24, 2007

Home and running

We arrived home last night pretty near 8 p.m. There were a few delays getting out of the hospital, none of which could really be helped in the end. We went straight home--we did not pass 'go' or get gas or food. Despite leaving at the height of rush hour, we had a pretty clear drive home.

It took a while to get everything settled once we arrived, but there was a delicious homemade meal waiting for us and we were all finally in bed by midnight.

This morning, the plumber is working at the house, installing the plumbing fixtures (sinks and toilets). The power company was there too, waiting for the much-needed rain to let up so they can trench in our power line and connect it to the house. The HVAC man is supposed to come this afternoon to finish up his stuff. Things are moving along and we are still trying hard to make a Nov 2 or 3 move in date. Thanks for praying for us.

James is doing very well, by the way. He needs to stay awake more today so that he can sleep more tonight!!

Thanks for stopping by!

Love, Stephanie

Tuesday, October 23, 2007

The stars of the sky

It is a wonderful thing to live in the country. It is delightful to see children grow up in a rural setting. There are so many wonderful lessons here... for them and for me too.

The other night, we had arrived home from working on our land, preparing our new home to live in. We had unloaded the children from the van and everything and everyone was inside, except Owen. I looked out to seem him staring at the sky, studying the heavens. He was motionless, which usually only happens when he is sleeping.

I walked out to where he was, put my arm around his shoulder and squeezed him with a hug. He responded by putting his arm around my waist and hugging me back. But he still stared up at the sky. I looked up with him, waiting. Grateful for an 11-year-old son who is loving and affectionate--not embarrassed to be hugged by nor to hug his Momma.

Then he spoke. "Momma. It's really neat to look at the stars out here. The more I look and try to count them, the more I see to count."

So I looked with him for a time, peering in to a very small part of the heavens, counting stars. Before I could count them all, more appeared behind them... and behind them. In a very short time, there were far too many stars to count. Soon after that, there were too many to see individually as they just kept appearing in clusters.

As we turned to walk to the house, we talked of Abram and how he had tried to count the stars. We wondered if, perhaps, we had counted some of the same stars he counted.

"Then He brought him outside and said, 'Look now toward heaven, and count
the stars if you are able to number them.' And He said to him, "So shall
your descendants be." And he believed the Lord, and He accounted it to him
for righteousness." Genesis 15:5,6

Monday, October 22, 2007

Home early, we hope

Please forgive my many typos in the last posts. I have been in a hurry to get off the computer and get back to James and I'm not doing the best job of proofreading.

Yesterday was a great day. We had a long time with the family and Vern and I were able to just sit and talk about things we haven't been able to talk about for some time. I was glad to get some snuggle time with Becca, too, who has really been needing her Momma to be a little more available--we have been talking on the phone a lot and I am glad to be able to do that. I always like to be able to hug the children and tussle their hair. It's so nice to say and hear "I love you" in person. I pray I never take that for granted.

Today our favorite Nurse Practitioner on the floor, Colleen, came in and said, "I'm going to find out what we need to do to get you guys home." Hooray! The goal is to get us out of here tomorrow although we might not make it till Wednesday. (Tuesday would be a good thing to pray for!) James' counts are good, none of his cultures grew back any kind of bacteria and he is more and more like a two-year-old in captivity here! He still cannot eat anything by mouth and won't be able to until everything heals up really well. He is usually fine with this as long as we are sensitive not to eat in front of him. For nutrition, he would go home on TPN (IV feeds).

Dr. Tenjarla said that the healing of James' g-tube site was 'miraculous'. Please pray that healing continues. James was due to have chemo today, but that will be postponed. Pray for wisdom on the timing of starting that back up. Of course, all the delays will mean that his treatment lasts longer, but that is okay.

On the house front, things are moving along. It was a productive weekend and we should actually have power connected to the house today or tomorrow--that will be a big milestone! The plumber is planning to come Wednesday to install all the fixtures (except for the kitchen sink). We are hoping the kitchen counter will arrive Wednesday to be installed Wednesday or Thursday.

Thanks for your prayers and thoughts. I am hoping to get over to the library this afternoon. That is my 'last chance' for uploading photos to the blog. It would be okay to pray about that too! :*).

Love, Stephanie

Saturday, October 20, 2007

Busy hospital day

James' g-tube site showed significant improvement today. Even this morning it looked much better than it did when we went to bed last night. He is quite his perky little self!

Our biggest challenge is splitting up to have an opportunity to eat since he isn't supposed to have anything by mouth. We are getting that figured out.

This morning we went to the AFLAC Bingo in one of the conference rooms. James won a slinky, the book, _Green Eggs and Ham_, and a Nerf football. He was much more interested in the football than the last round of Bingo, so we decided to head up to the library to check out the camera. Our hope was to get some more pictures (the garden in beautiful and the weather today was the just incredible!) and then go back up and get help posting them onto the blog here.

On our way to the garden, we met some new friends, Adam and Allison and their two-year-old daughter, Lacey (I hope I'm spelling these right). Lacey is a beautiful little girl with Down syndrome. She has heart issues and feeding issues and is very petite. It was fun to watch James and Lacy interact.

We got some time in the garden and then had to run back upstairs when one of James' IV lines disconnected. It was easy to fix and then we were on our way. By the time we made it back to the library, the computers were all in use and James was in desperate need of a nap.

I have been trying other computers to see if I can post some pictures on the blog, all to no avail. I will not give up! ;*)...

We are very much looking forward to the family's visit tomorrow. We heard they accomplished quite a bit at the house today, PTL!

Hope you have a restful, worshipful Lord's day! Thanks for stopping by.

Love, Stephanie

Friday, October 19, 2007

Two Weeks !?!

James' GI doctor, Dr. Tenjarla, came by yesterday to see him and take a look at the site. She thought that because the it had aroded enough for the tube to fall out, that we should probably plan to be in the hospital for at least two weeks. My first thought, of course, was, "Two weeks! Oh no!!" My second thought was, "Well, Lord, you've worked everything else out so far, You must have a reason for this." I still reserve the 'right' to hope that Dr. Tenjarla is wrong...but it is okay if she's right!

James has been pretty perky and friendly, giving out lots of hugs, kisses and handshakes and generally being a pretty sweet encourager. Many folks he has interacted with have said that he 'made their day' (or in some cases, their night). Everyone loves to see him sign and they just can't get over how 'smart' he is. James is very good at 'working the crowd' and he just eats it all up!

Today, there were some street performers who visited the hospital and performed downstairs in the open area. We decided to go and it was worth it. James got to 'spin' a soccer ball, with a little help from one of the performers. They also serenaded him with Twinkle Twinkle Little Star and one of the performers signed with him a little bit...

We were able to get some photos with one of the hospital's loaner cameras. I will post some when I can find a computer with a CD-ROM drive I can access.

Katie and the home crew have continued the work at the house and we are not yet ready to give up on our hope of moving in to our new home by 2 or 3 Nov. Today they sanded the painted walls (they were sprayed and get Mom and Aunt will come down to do the final coat with rollers). In the meantime, everyone and Mr. Bruce will be working at the house tomorrow and they plan to come for a visit on Sunday.

Please pray:

  1. That James' site will heal thoroughly and quickly and that the surgery and GI folks would have wisdom to decide if it would be best to save the site or let it heal all the way and put in yet another g-tube.
  2. For wisdom about his IV feeds--that we would get the right amount of protein, fluids and anything else that he would need all mixed in.
  3. That things will continue to progress with the house--folks would be able to come when they've said they could and/or when we need them.
  4. That I will be able to get in touch with the plumber and that he would be able to come early next week to install the fixtures.
  5. For the family's safe travels up and back on Sunday.
  6. For Vern generally as he has all the home things on him, plus work and being concerned about his sweet boy in the hospital. For Katie as she works extra hard to fill in my spot while I am gone. For Owen, Becca and Carrie as they continuing helping and trying hard to be sweet without Momma hugs and loves.
  7. That God would be glorified in all of this and we would keep resting in Him.

Thanks for stopping by!

Love, Stephanie

Thursday, October 18, 2007

Back at the hospital

This run of methotrexate and vincristine seem to be giving James quite a challenge. Monday evening we realized that something wasn't right with his g-tube site. It looked thinner and looser and sort of purplish-gray. I called the clinic on Tuesday morning and they said since is wasn't pink or red and he didn't have a fever there wasn't too much they could do. They said keep dressing it like we had planned, give James meds for pain and call them if anything changed.

Thursday we had a hard time keeping him comfortable and that night, when we changed out his dressing, we all thought we could see the balloon inside his tummy that holds the g-tube in place through the ever-thinning and widening hole. We called and talked to the on-call doctor and she said come on up. We'd already planned to try to get him in to see his doc on Thursday after he was so uncomfortable, but the kicker was the view of the balloon. He'd also had pretty low white counts (ANC=117) on Monday.

We made it to the ER by about 3 a.m. this morning and as I lifted James from his car seat to carry him in, his g-tube just fell out onto the parking garage floor. (Eeeewww) Fortnately this seemed to relieve the pressure to the site and he had less pain than he had before, PTL.

Right now he is on more antibiotics, we think it is infected again, but not sure with what yet. The wound/ostomy nurse set him up with a pretty spiffy dressing and we are supposed to take care of it. Tomorrow James will get IV feeds (TPN) with a greater portion of protein to , hopefully help him heal.

The one good thing is that the things we did to help prevent this did seem to help with the erosion from the outside. Virtually all the erosion to the site was from the inside, Since he will have a similar course of treatment every 12 weeks for the next 22 months, we need to figure out some way to prevent or minimize this erosion to his g-tube site. I would appreciate your prayers for wisdom as we work together with his care team to devise some sort of plan.

We have been working hard on our house with the goal of being able to live in it by 2 or 3 Nov. By God's incredible mercy, we are still very hopeful we can make it. Katie, Owen, Becca and Carrie worked there today and we have made a good deal of progress in the past week. Please pray for them and for Vern as we are all 'dividing and conquering'.

I hope to have an opportunity to update again while we are here. We have been having technical difficulties with the computer at home... and we have been VERY busy. Your notes and e-mails have been a big encouragement...thanks so much!

Love, Stephanie

Thursday, October 11, 2007

Home again, home again...

We are grateful to be home. We came home Tuesday afternoon. It looks like the staph infection that was growing out in James' blood culture looks to have been caused by some sort of contamination since none of the other cultures ever grew out staph. This is very good, though they were treating him for staph, just in case.

We came home with IV antibiotics (meripeninem--I have know idea if I am spelling that right, the label says Merrem). The entero bacteria that grew out in his grew culture was very sensitive to this drug, so all the doctors agree this was the way to go. I have to give it to him three times a day (7a.m., 3p.m., 10p.m.), so that is a little more challenging/limiting that the vancomycin we did twice a day before. is far less limiting than being in the hospital!!!

The weather has been phenomenal here--anyone from Minnesota want to plan a visit? :*)... we are all looking forward to sitting on our front porch in the evenings and watching the stars. It is very dark out here and as Owen said last night as he was staring up at the sky when I brought him home from the house, "Momma, it's really neat. The more you look at the stars and try to count them, the more there are!"

We have lots of plans for progress on the house over the next several days. Vern has school holidays on Friday and Monday and we have friends planning to help us get the bulk of the painting done on Saturday. We all missed church on Sunday and are looking forward to being back this week... all Lord willing.

Thanks for your notes, I am trying to figure out how to respond via e-mail easily. Thanks for being patient with me. Pam, I'd love to hear more about your new little girl and life with two soldiers in the family.

Love to all... Stephanie

Monday, October 8, 2007

Home tomorrow?

James just finished getting a blood transfusion (because his hemoglobin dropped to 6.6 this morning). He is looking much pinker and less tired. Once we get a visit from the GI nurse to switch him to an adjustableg-tube, we'll head out for a walk. He is doing much better now that we have him on all the right antibiotics. We are waiting til tomorrow to see if perhaps the staph infection was due contamination of sample, since he hasn't grown out any more staph so far.

They are working on getting IV antibiotics set up for home and we are hoping to head home tomorrow (Tuesday), Lord willing.

Please leave a note if you can. We love to hear from you and know who is following James' progress. Thanks for stopping by.

Love, Stephanie

Sunday, October 7, 2007

We're baack

We made it home fine Wednesday and we had a day at home too... well, sort of. Owen and I drove to the scratch and dent appliance place Thursday and took advantage of Georgia's 'no sales tax on energy saving appliances' weekend (Oct 4-7). We were able to find all the appliances we need for the house except the gas cooktop--we will keep looking for that one.

Thursday night, James was cranky and never really fell off to sleep. At 2:00a.m., he spiked a fever of 38.6*c (101.5*F). After talking by phone with the pediatric oncologist on call, Hannah, James and I headed off to the emergency center in Macon. They gave him antibiotics and fluid, drew some labs for culturing and said we could go home, but to call if James got another fever.

Friday James did well, until bedtime. He was pretty uncomfortable. We thought maybe he was in pain because he was shaking and crying and was inconsolable--even with Lortab. At 11 p.m., he spiked a fever again. This time it was 38.8*c (101.85*F). We talked again to the oncologist on call and headed back to Macon. Everyone communicated well and it turns out that the previous culture was already growing out gram negative rods. This includes scary little bacteria like E. coli, klebsiella and entero bacteria. All fine bacteria in the right place, but not in the blood. James got more antibiotics, gave a little more blood for more cultures and took an ambulance ride to Children's. Hannah and I followed in the car.

Now that we know what he needs in terms of antibiotics, he is doing MUCH better. It turns out, his culture also grew out staph, but we don't know which kind yet.

Vern and the other children drove up to spend the day with us today.

Thanks for checking in on us.

Love, Stephanie

Wednesday, October 3, 2007

We're outta here!

Well, we're getting ready to get out of here. I just came back from hunting down a wagon to haul all of our loot to the car and Colleen, our Nurse Practitioner, asked if I'd heard... heard what? I asked... that you're leaving...

So, we still have to finish packing and get our orders (and two prescriptions) and then we'll head out.

Not sure when I'll be able to post again, but please pray for our house efforts.

Thanks so much.

Love, Stephanie

Counting down

In an hour, we will draw James' blood to check for his methotrexate levels. If it is .02 or less, we get to go home. It will take about an hour for the test results to come back.

This morning we had to have a little excitement, so we woke to a nastly sour smell in the room. Turns out it was James ;*)... the medicine port on his g-tube had come open and about three hours worth of his formula leaked out into the bed all over him and Hannah. While Hannah jumped in the shower, I cleaned up James and the bed. We finally had to get our friend, Mrs. Alice, from housekeeping to help us get the smell out of the mattress. She used some sort of 'miracle juice'. I'll have to ask what it was!

Other than that, we have talked to lots of people today--nurses stopping by to see James and say 'hi' as well as the nutritionist, the ostomy nurse (who brought us some new options in ostomy bags for us to try out), the social worker, and the doctors and nurse practitioner. I sure appreciate all the specialty care that is available and how everyone works to coordinate things and keep Dr. Keller in the loop.

We hope to see the hospital in our review mirror around 5 or 6 tonight. I may not be able to post before we go, but I will if we have to stay! :*)... so no news is good news.

Thanks for stopping by.. and for your prayers. James is doing very well and we are very grateful.

Love, Stephanie

Tuesday, October 2, 2007


James' chemo is finished and now we are waiting for 24 hours (with fluids) to see if he will again flush his methotrexate out within the first 24 hours following the end of his chemo infusion. the chemo ended today at 3:40 p.m. Tomorrow at 3:40 p.m. his nurse will draw his blood and then we will wait for the results to see if we get to go home tomorrow night. We are hopeful, but it's a pretty objective standard!

While we are waiting we have read, napped, snuggled and watch the whole series of three Hallmark "Sarah, Plain and Tall" movies. Don't watch without a box of kleenex if you are prone to do silly things like weep over movies. I used plenty.... of kleenex.

Last night, there was a family standing in the hall about the time we went to bed. There was a doctor talking with them. This morning, some of them were in the hall again. Some looked like they had been crying. A couple of nurses and one of the fellows were there and they were talking quietly and hugging. As they left the floor, I wondered if something quietly tragic had happened. Had a family lost a child? It was so quiet. It seemed to pass almost unnoticed.

Later in the morning, I saw a nurse, a Christian young lady I know well, and asked if a child had passed away this morning. She looked a little surprised. She told me what she could--the child was a girl, she was about three years old. She had a tumor in her head, but not a brain tumor, maybe a muscle tumor. She had been in pain, and the family was, partly, relieved for her. She was in the hospital primarily for pain control.

It was really odd to me to have such a HUGE loss just two doors down and to not even be able to tell them I was sorry. To have a sense that this had happened and yet not have anything to say. Perhaps they preferred it that way and that is OK. But off and on during the day I have thought of this family and another I knew when we were in Maryland about thirteen years ago who lost a daugter to a brain tumor. As you read this, would you pray for this little girl's family--that the Peace that passes understanding would guard their hearts and minds in Christ Jesus. I do not know if they are believers.

So I am especially grateful that the Lord has chosen, for now, anyway, to preserve James for us. He is such a joy and a treasure. He is so full of life now and growing and doing normal things. He loves to greet people with a handshake and seems to be the consummate little gentelman when he does it. I am glad that he can be such a bright spot for many. I wonder, with great hope, what God has in store for his future.

Love, Stephanie

Monday, October 1, 2007

Settling in

We're all settled in at the hospital. One of our favorite nurses got us all set up. James and I were snuggling in his bed watching the Mr. Fixit Bible videos and Hannah had gone out to see if she could find a wheelchair we could use to take James for a walk. He was asking (with signs) to go for a walk.

Just about the time Hannah returned with the treasured wheelchair, we realized that something on James was leaking. Hannah found his IV line had come disconnected! Thankfully, it had only come apart along the IV line and it didn't get pulled out of James. Our nurse came right in and got things cleaned up and hooked back together. I was relieved that it didn't end up being a HUGE chemical spill situation. We changed the bedding and were giving James a bath to be sure none was left to sit on his tender skin, when he plopped his foot into the bathing basin and tipped it over, flooding his bed. We rescued him and dried him off, finished cleaning him up and then waited for the bed to dry before we made it up again.

By the time we went for our walk, it was nearly 8:30 and we were grateful the cafeteria was still open--we just made it. Now we are at the library (checking the times they are open tomorrow :*) ).. and shortly we hope to return to the room. I hope to be sleeping soon. I have been up since 5 and didn't get the nap that Hannah and James got on the drive up... nor the nap James had this afternoon.

Hopefully the rest of our visit will be a little less exciting!

Good night.

Love, Stephanie

P.S. Daddy, Vern thinks the computer problem has something to do with a device driver, but that is all we know and is from the error messages we were getting.

P.P.S. Vern and some of the children spent more time at the house tonight. If you think of it, our goal is to move in the first of November--ambitious, but possible, Lord willing!


James' methotrexate started running right around 3 p.m. Lord willing, we could be on our way home around 5 p.m. Wednesday. As I type, he is napping with Hannah in an infusion chair and we are waiting for our hospital room to be cleaned.

In the meantime, I was working with our social worker here to find out why it looks like James' medicaid has stopped. Some of the answers I can't get because I'm not the Payee for James' Social Security (which also stopped). It has made for a busy afternoon and the early morning this morning has made for a tired Momma!

I did talk to Katie and she is pretty sure they were able to putty all the nail holes at the house and they moved some things out of the living room (like plumbing and lighting fixtures) to a closet, so they would be out of the way of the painters.

Thanks for your prayers.

Love, Stephanie

Catch up

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

Tuesday, September 25, 2007

Slow and steady wins the race

Owen and I spent a slow day at the house today. We did a little baseboard trim (we did quite a bit yesterday), but we stopped when we realized that the reason we couldn't get our corners quite right was that the blade on the compound miter saw was off and we couldn't correct it.

We decided to go ahead and work on cutting purlins that we needed to set between the studs on the walls we are planning to cover with beadboard panelling. We made some good progress on that effort and we also did a rough sanding on the front door, which is fir.

Vern stopped by on his way home from work and fixed our saw blade, so we are looking forward to finishing up all the baseboard we can tomorrow and having corners that meet just right, Lord willing, of course!!!

Last night, Bruce, who is helping us with the finishing work, asked how the baseboard was coming along. My reply, "Umm, I think we're going to need some extra caulking." Tonight, when he came home, he had stopped to see our house, on the way (we are living with Bruce's family while we build our house, which is just 1.2 miles away). He said the baseboard looked pretty good... that we wouldn't need near as much caulking as I had apparently led him to believe!! PTL!

Thanks to Katie, things keep moving along at home... this whole thing is definitely a family affair, even if we can't all be all together while we are working on it.

Have a blessed day! And please let us hear from you...

Love, Stephanie

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

Monday, September 10, 2007

One sweet boy

Here are some sweet pictures of James for your viewing pleasure :*)...

Uncle Sam with his sister, Lady Liberty getting ready for the annual Skelly Fourth of July parade.

Helping Momma finish her corn on the cob at the community Fourth of July celebration.

Smiling for the camera. Isn't he the sweetest thing?

Playing 'catch' with Mr. Quincy, aka Uncle Bo at the Fourth of July celebration.

Thanks for stopping by.

Love, Stephanie

A happy day

In August, Rebecca, who is seven, agreed with God that she is a sinner in need of a Savior and she accepted that what the Lord Jesus Christ did on the cross paid for her sin. A week and a half later, she made a public profession and followed Jesus in baptism. Her daddy did the honors in the pool at our home.

A number of folks stopped by after church to witness the baptism.

"Buried with Him in baptism..."

"...raised to walk in newness of life."

Hannah made some cakes and decorated them. A few of the neighbors stayed to celebrate. Most folks already had other Sunday plans. We are grateful to all who came to share the sweet time with us.

Love, Stephanie

Safe, sound and busy

It took a little longer than I had hoped to get loaded up and head home. After picking up James' prescriptions, packing the rest of our stuff and loading up the car, we finally pulled out of the parking garage at about 9:45 p.m. We ended up going the back way and the roads were open and lighted well enough. We made good time, arriving home by about 12:15.

While we had intended to go to church Sunday we had a little difficulty pulling it all together, so Vern decided we'd stay home. We had a great time singing hymns--I think everyone picked two, so that's 16 altogether--and Vern read to us from Psalms.

The folks we are living with have gone away to the coast for a family vacation this week. We have plenty to do around here. Last week the plumber and electrician finished their rough-ins. Saturday the insulation guys got started. Today HVAC rough-in and insulation will be finished and the drywall team is planning to set up their stuff. The windows and last door are supposed to get put in this evening and tomorrow we should have drywall.

Then we will need to step up to the plate with painting, trimwork and other finishing. Please pray for us that we would know our limits and do well at what we do. Especially that God would be glorified in what we do.

Thanks for stopping by.

Love, Stephanie

Saturday, September 8, 2007

Going home

As I begin to type this it is 7:18 p.m. on Saturday. At 6:16 p.m. our nurse, Mildred, drew James blood and sent it down to the lab STAT. We are hoping to hear soon whether we get to go home tonight or if we have to stay til tomorrow.

At 7:35, still no results.

Finally at about 7:47p.m., our new-this-shift nurse, Caroline, called the lab and James scored a 0.046... He needed a 0.2 or better... so we are loading up and heading out after Hannah changes his ostomy bag. In the meantime, I may run to CVS and get his prescriptions filled.

Thank you, Lord, for a record SHORT hospital stay. Please pray for our safe trip home!

Love, Stephanie

The waiting game

A hospital visit for methotrexate is really a waiting game. We arrive and we wait for a clinic room. Once we're in the room, we wait for blood test results. Then we wait for orders to be written and IV fluids to be started. Once fluids are running, we put cotton balls in James' diaper and wait for his urine tests to show that he is well-hydrated and his pH is on the alkaline side. Then we hook up the chemo (after the orders come through and the pharmacy gets it mixed and ready to go) and we wait... for 24 hours. The last few hours, the nurses are tweaking the rate he gets the chemo to make it finish write on time. As soon as the chemo is finished (almost exactly 24 hours after it was started), we switch to more fluids to help flush it out. While that is running, we wait for more blood lab results. Then we wait for the fluids to run for another 24 hours. At that point, the nurse will draw blood and we will wait for the lab results to come back again. These lab results are very important. If the levels are just right, we stop waiting and hurry to pack and load up so we can go home!

Today we are waiting for 6:15 p.m.... for the lab draw that will determine if we get to go home tonight or if we have to wait til tomorrow.

We are praying we will get to go home tonight (and that the lab results will come back quickly--say, within an hour, which is normal, but wasn't last night). Will you join us?

Thanks for stopping by!

Love, Stephanie

Friday, September 7, 2007

One day at a time

We arrived at the hospital yesterday. First we had an appointment with the pediatric gastroenterologist that has overseen James' care while he has been in the hospital. She was pleased with James' progress and how well he is doing. She will conitinue to follow his care through chemo and beyond, until we get to the point, Lord willing, that he no longer needs an ileostomy or a g-tube.

After our GI appointment, we came to the AFLAC Cancer clinic and met with James' oncologist, Dr. Keller. He was also very pleased with James' progress. I know he enjoys all of his patients and cares very much about them, but sometimes it seems like James has a special spot in his heart. It is fun to see how much he enjoys James and it is obvious that James likes him too.

Our nurse got James' blood sample (his counts look really good!) and then got him started on IV fluids. We thought we'd have to wait a while for a room, but it didn't take too long. By 6:00p.m. when we checked James' urine, he was hydrated enough to begin his chemo. This is the earliest we've ever gotten started and there is a possibility that we could leave here to head home Saturday night.

In the meantime, there is plenty to do here.

James is doing great. He is full of James and fun to watch. He is signing more and moving more and verbalizing more--he make sounds, but doesn't speak words. He acts like a two year old should... busy and a little ornery... though we are working on that some!

Thanks for stopping by. Have a wonderful day!

Love, Stepahnie

Thursday, September 6, 2007

A sad day

A couple of weeks ago, Hannah, James and I were heading to Macon for James' blood transfusion. It was handy to be able to be closer to home and Hannah had thoughtfully loaded up all our travelling necessities in the car. When I got into the car, Hannah and James were already buckled in the back seat. I started the car and pulled the gear shift back into Reverse. In an instant, my elbow bumped something and I heard a small splash. Hannah cried, "Oh no!" The rest was a blurr.

The splash, I am very sad to report, was our digital camera landing in a cup of gatorade. I am even sadder to report that the drowning was quick and though all hands leapt to and quickly rescued the camera, it was already too late. And right in the middle of building a house.

The silver lining in all this is that we didn't lose the memory chip in the camera, so we have all those pictures and we have borrowed Lynn's camera a couple of times with our memory card to take a few pictures.

The camera was a gift from Grandpa John and Grandma Nan--special friends in Minnesota. And it was a very nice camera. May it rest in peace.

Love, Stephanie

Tuesday, September 4, 2007

No news is still good news

Please accept my apologies for not letting you know that we actually did leave the hospital and come home. We came home with antibiotics (twice a day) and have had a GREAT two weeks tomorrow. James is doing so wonderfully that part of me is hesitant (though hopeful) about taking him back to Atlanta to begin another phase of chemo. I would say that James is doing the best he has since his diagnosis back in February.

We have been VERY busy with house things. Except for part of the ridge cap (metal roof), the roof of our new house is in place. We are waiting the delivery of the windows and the front door before it will be totally dried in.

The plumber is about half done with the rough in and the HVAC guy is coming tomorrow. The electrician's are also supposed to be there tomorrow. If all goes well, we may have insulation on Saturday and drywall next week, but we'll have to see how well things go this week.

In the meantime, it doesn't seem like anything is slowing down to me. Shopper that I am not, I have been out (mostly with Vern and sometimes with the children) shopping away for all the necessities of a house. Picking light fixtures is worse than picking salad dressing!

Thursday, Hannah and I will take James back to Atlanta for another run of methotrexate. While we anticipate some mucusitis following this chemo, we are hopeful for a better recovery than in the past. Lately, it seems James has been recovering more quickly after each round of chemo. For that, we are incredibly grateful.

At the end of our last hospital stay, I had trouble with the wireless internet connection so I didn't get any photos posted. I'll try to add a picture of the house to this post.
Thanks for stopping by... and for all the notes you left. I hope to reply to some soon and do some more posting (Lord willing and the hospital WiFi is working!)

Love, Stephanie

Tuesday, August 21, 2007

Maybe tomorrow

Thanks so much for the encouraging notes, thoughts and prayers.

It looks like James got his last fever last night around 8 p.m. and they are trying to send us home tomorrow. Some things need to be in order--like being able to take what we need home to give James his antibiotic through his central line--and he can't have any more fevers before we leave.

The initial blood cultures grew out "staph epi". It is a bacteria normally found on the skin that can be harmful when it gets in the blood. They will keep an eye out on James to be sure it doesn't rear it's ugly little head when his counts drop during upcoming chemo.

James is back to his normally silly, saucy self today and that is always encouraging.

As always, we hope for the best, but realize that we're not out of here until we see the hospital in the rear view mirror!

Saturday, August 18, 2007

A fever and staph

We spent yesterday afternoon and evening in the emergency room with James in Macon due to fever. Because his counts were pretty good, they gave him an antibiotic and sent us home with instructions to give James tylenol every 4 hours and if the fever broke through the tylenol, we were to bring him back or call the oncologist on call in Atlanta.

We finally arrived home Friday night around 10 p.m. We learned that we had missed a power outage and were grateful that the lights and air conditioning were now back up and running.

In the first four hours at home, James' fever went up to 39.9* Celsius (104* Fahrenheit). We called the on-call oncologist and by the time she called back, James temperature had reached 40.2* Celsius (104.4* Fahrenheit) and she said to bring him on in to Children's in Atlanta.

We spent Friday night in the car and the emergency room. They did more labs and gave James more antibiotics and tylenol. Some time in the morning, we were moved up to the cancer floor. We learned that the first culture, from the ER in Macon, grew out staph. The doctors ordered a different antibiotic, which initially seemed to help.

Overall, James is improving. He is still spiking temps, but they aren't going quite so high (his highest temp so far has been 40.6* C (105.2 F) and the tylenol is helping to keep the spikes at bay a little longer each round.

In order to go home, James has to be fever free for 24 hours and he has to have a negative blood culture. Once those two criteria are met, James will need to have an additional 10 days of antibiotic. If he can be given a drug that can be dosed for once a day, we can do that at home. If it is more than once he attending physician told me that it could very well be a two week stay.

Please pray that God's will would be done and that He would keep James safe.

Thanks for checking on us.

Love, Stephanie

Saturday, August 11, 2007

Screaming along

It seems that the folks down here in our little community have "squeaked" enough to the local phone company that we are now getting in the neighborhood of 44.0 Kbps connections to the WWW. Yee Haw!

I might even be able to post some photos from home at this speed!

James has done remarkably well this second half of this chemo cycle and we are very grateful. We came home from the hospital with TPN (IV feeds) and we are working at using his g-tube as we are able.

I asked Dr. Keller how long it will take the nerves, damaged by the vincristine, to regenerate. His answer, "Months." This goes with what happened with his last run of vincristine--3 doses in March, James didn't get enough strength to begin crawling and pulling up to cruise again until June. Dr. Keller wasn't sure if only getting 2 half doses this last time would make a difference.

That was Thursday. On Friday, James did a little crawling, so that is certainly something to rejoice over.

This week, we are just administering some at-home chemo and we will have to drive to the pediatrician's office for a blood draw. Dr. Keller suspects that James' counts will either require some blood products or maybe some time in the hospital. He said this is the most likely time for unscheduled hospital visits. We'd be grateful to bypass this one, of course.

The next scheduled hospital visit is August 27th.

In other news: Framing on our new house is scheduled to begin tomorrow. If you think about it, pray for cooler weather and protection for the guys doing the framing. I think Owen will be having a great field trip as long as they are working there.

Love, Stephanie

Friday, August 3, 2007

The Minneapolis bridge and suffering

I am often asked how we 'do this' with all we have been through over the past few years with Vern's layoff, James' medical issues, this move just following a leukemia diagnosis with James. The short answer is: we believe God is sovereign and holy. We are keenly aware that we have it easy compared with what we deserve. God is merciful to us and has given us so much better than we deserve.

Of course, in our world and culture today that doesn't make any sense to very many people. Not even Christians. And I am terrible when it comes to explaining this to folks. However, when I see a good answer, I know it. My mind dances with excitement, saying, "Yeah! THAT!" I found an article online today that was a "Yeah! THAT!" article for me. John Piper writing about the tragedy in Minneapolis. I hope you'll take a few minutes to read it here. And know that whatever the tragedy is you are enduring in your life at this moment fits in, big or small.

I find tremendous comfort in that. I hope you will to.

Love, Stephanie

Onward and homeward

It looks like we are on track to go home this afternoon. My parents are driving down from north Georgia/North Carolina to pick us up and take us all home. Then they'll stay with us to see the children and check out the progress on the house and head home tomorrow.

James is progressing along, the pressure ulcer around his g-tube is mostly fill back in--it looks MUCH better. The GI docs don't want us to use the tube for feeding yet (just medincines and some supplements), so we are going home with TPN (IV feeds). The nurse from yet another home health care company is coming to show me how to use their pump and bring me the TPN and supplies. She won't be here til about 2:30, so that will give us time to pack up and get some other things done.

Lord willing, we hope to be on the road around 4 p.m.

In other family news: Vern started back to work this week. He had teacher pre-planning days Monday through Thursday and today is his first day with students (so we are especially grateful for the flexibility and availability of my folks to help out in the transporting department!)

Things are progressing for the house: last week the foundation was dug and poured and the block was laid this week. Our friend, Joey, ordered the lumber yesterday and it will be delivered next Friday. Lord willing, framing will begin August 13th. We hope to be finished by the 24th and have a roofing party on the 25th. Our friend, John, who does lots of roofing told us that seconds of metal roofing can be had for less than half of higher grade metal roofing. The only 'problem' with it is that the color didn't perfectly match. That puts a metal roof within our budget and we are really excited. Please pray for us as we start to line up an electrician, plumber and HVAC person to come in once the house is dried in.

Thanks for your prayers and for checking up on us. Please let us hear from you when you have a chance!

Love, Stephanie

Tuesday, July 31, 2007


James is resting by himself in the bed while Hannah and I set about accomplishing other things. He has vomitted a few times this morning and we're not sure why. We are waiting for another consult with th GI docs to see if they have any ideas. I sure hope it's not an intestinal bug... but then maybe that would be better than something else.

Sunday night it was looking 'impressive' and it leaked a good bit. So his nurse, who has some GI experience, requested that some more knowledgeable people take a look at James. Yesterday afternoon, a group of folks that had seen his big sore in the early stages came by to peek again. The consensus was that the pressure ulcer is improving. That is good news.

So at this point, we are mostly in waiting mode. Waiting the pressure ulcer to finish healing, waiting to finish his cycle of antibiotics, waiting to see if there is a reason for his vomiting and hoping in the meantime that it resolves itself.

Please pray for wisdom to help James, for his comfort and for complete healing from all that is troubling his little body now...

Love, Stephanie

Sunday, July 29, 2007

Slow going

Today when we (and I use that term loosely) changed out the dressing around James' g-tube there wasn't much improvement from yesterday. The site actually has a larger area of redness than it did a day ago, although there didn't appear to be any more pus.

The results from the culture indicate that klebsiella is the bacteria culprit. If it gets into his blood stream, it could be dangerous, but they have, thankfully, been treating him with the right antibiotic, fortaz, all along the way.

We were hoping to start him back on tube feedings today, but after seeing the site, we were all (me, the doctors and the nurse) uncomfortable with putting anything in through the g-tube. The current plan is to wait until tomorrow so the GI doctors can look at it and tell us what they think ought to be done. Hopefully the wound/ostomy nurse will weigh in as well.

I have been concerned about James' fluid intake and we seem to have gotten a handle on that and now our focus is more onto his nutritional needs with the idea being that his body needs protein to be able to heal. I thought it was also interesting that the nutritionist wrote the order for his TPN (Total Parenteral Nutrition--essentially IV feeds) to include extra zinc because it is known that zinc helps with the healing process.

James' counts are really good and if this wound around his g-tube site wasn't an issue he would get his next chemo this Thursday. That means this was supposed to be our week off! However, Dr. Keller wants to wait and see how James heals before he decides if we will postpone the next chemo treatment.

James still seems pretty weak. This is due to temporary nerve damage caused by vincristine (a chemo drug). As the nerves regenerate, he should be able to increase his activity and regain his muscle strength.

Please pray for wisdom and timing, and thank the Lord with us for the wisdom he gave the doctors to put James on the fortaz in the first place, especially since they didn't initially suspect klebsiella. Pray, also, for his complete recovery from the vincristine side effects.

Thanks for checking up on us. We sure appreciate your notes and prayers on ours and James' behalf.

Love, Stephanie


I am not a big fan of surprises. I admit that part of that stems from a perceived need on my part to have control. But most of the time, in my experience, surprises aren't really surprises. There is a lot of undercover whispering and suspicious behavior and, for me, that takes away from anything pleasant about the surprise.

On the very few occasions, someone has actually truly surprised me, I did enjoy the surprise.

Friday, Vern had a number of things he needed to accomplish while everyone else finished up chores and Katie packed up the things that Vern was going to bring up to us at the hospital. I got a call from him to let us know that he was on his way and we were looking forward to his arrival.

Here at the hospital, James' ostomy bag was coming loose and Hannah was starting the process of changing it. She called home to get Katie to find out what tips Katie could share to help the bag stay on longer.

The phone rang, but there was no answer so Hannah left a message. About five minutes later, when there had been no call back, Hannah tried again, with the same result (except that the second message sounded a little more desperate!).

In the meantime, we discovered a questionable spot under James' ostomy bag wafer and we were covering it with gauze to wait for the appropriate specialist to come look at it (it didn't end up being anything of concern). Since our wireless connection wasn't very good in that room, Hannah went down to the playroom on the floor to use the computer there and James and I snuggled on the bed watching one of our favorite Signing Time DVDs.

There was a hearty-than-normal knock at the door, but the door didn't open as it usually would have, so I called, "Come in." The door flew open at once to reveal a brief view of five smiling Skelly's. It was brief because they all surrounded the bed with hugs, kisses and snuggles. I was wonderfully surprised and I think James was too.

Thanks to Vern, Katie, Owen, Becca and Carrie for the REAL and very pleasant surprise!

Love, Stephanie

Saturday, July 28, 2007

The guys

James gets the arm positioning from his Daddy!


The other day the little girls came in to my room with their hair all fixed up. Hannah had done them up in thumbelinas. It is fun when they like to match.

Friday, July 27, 2007

So cute!

The kittens are really growing and getting around. They actually look very different to us and their personalities are pretty opposite.

One kitty is either lazier or weaker; the other much more active. One is much more 'vocal'; the other is quiet. One has straight, pointed ears, like it's mama; the other has cute little crimped ears. One is confident and trusting; the other is sheepish and a little nervous (especially about being held). Both are great fun to watch.

Hannah did a little research online about caring for kittens. One of the things she read was information on s*xing kittens. We tried, but we still haven't figured it out. Since Mama Kitty is such a great mouser, we are thinking about keeping the kittens to have a trio of mousers. But if anyone is interested in a kitty, let us know.

In the meantime, we'll have to be thinking about names. We have some thoughts, do you?

Love, Stephanie

Homeschooler Quiz

Hannah found this quiz. It isn't exactly where we are, but I would say it's the goal.

What Type of Homeschooler Are You?

Swiss Family Robinson If you can grow it, pick it, preserve it, or butcher it, you own it. Otherwise, you do without. Youd prefer to live off-grid from the power company, since youre nearly self-sufficient already. You enjoy unit studies for the way they utilize all facets of life and truly incorporate life and education as a whole, not as separate entities. Visit my blog:
Take this quiz!


Make A Quiz More Quizzes Grab Code

If you take the quiz, please let us know how you came out!

A decent night's sleep

Last night was a pretty good night, for being in the hospital. Everyone was very understanding about our exhaustion level and we slept, with lots of interruptions, until about 10:00 this morning. I am starting to feel normal. Hannah slept really well on the extra bed in the room, so that is good for me and for her!

I mentioned the concern about Hannah staying tonight to James' oncologist during rounds and not too long after, Jenn, one of our favorite nurses from the oncology floor came up and spoke to the charge nurse about what an integral part of James' care team she and Katie are. It looks like that won't be a problem in the future, PTL!

The wound ostomy nurse came to take a look at James' g-tube site and tell us the best course of treatment. She thought that the interim plan the night nurse came up with was the perfect solution. She also thought that the ulcer looked pretty bad. Hannah did say it had improved since last night. Since we are on the med/surg floor that handles GI stuff too, we are meeting a new group of nurses who actually have a lot of GI experience. This is good for us! We will probably move down to the oncology floor tomorrow, but it would be okay to stay here.

I forgot to mention that we have also been busy with our chickens. We processed them Tuesday. Processed is a euphemism for slaughter, dress (scald, pluck, eviscerate--by hand), and shrink wrap. We had some great extra help and processed nearly a hundred birds in just under six hours. Thanks Philip, Billie and Sarah!

Our other new addition to the processing team this year is a Featherman Scalder that we purchased from Schafer Farms. I am usually the one running the scalder, so I saw the most immediate benefit. I hope to write up a nice 'review' of the Featherman soon. It significantly improved my efficiency!

On Wednesday, we celebrated Carrie's 4th birthday. She actually turned 4 on March 30th, but I was still in the hospital with James in Minnesota and she had just been in Georgia for about five days. We didn't do all the usual birthday things, but she did get to pick her dinner meal (waffles, strawberries, whipped cream and fried eggs, with apple juice) and we sang our Happy Birthday songs many times. I think the singing is what she missed the most!

Thanks for checking up on us. Please pray that we can control James' pain well (and that it would subside soon) and that the wireless connection will remain good so I can post some photos!

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

Thursday, July 12, 2007

The best laid plans

I had high hopes of posting lots of photos today--taking advantage of the high speed connection we usually have here at the hospital/clinic. Unfortunately, our signal was weak and we kept getting disconnected in the middle of an upload. I was only able to upload one photo.

However, our visit here today has been helpful and James is doing well. He got more vincristine, more daunarubycin (sp?) and we are just finishing up the TPA infusion that is supposed to take care of his clotting issues.

I have so many things I'd like to write about and post pictures of. I will see what I can do from home to make it work a little easier.

Please continue to pray for us and for James:

1. Thanking God for his protecting James from infection and asking Him to continue that protection.

2. For continued protection for James from side effects of this chemo and for safe travels as we drive back and forth to Children's almost every week.

3. For wisdom, perfect timing and the Lord's provision in building our home.

4. That the Lord would be glorified in all we do.

Thanks for stopping by and checking on us. As always, we enjoy hearing from you.

Love, Stephanie

Eight little fishies

Back in January when we came to Georgia for a wedding, we stopped in Kentucky for a stretch break. While there, we walked by a mini-van with a school of six fish emblems on its rear door. It immediately inspired all of us and we thought it would be a great thing to copy. We've been picking up our fish and waiting for warm weather and then the time to implement the plan.

We finally got it done yesterday:

Thursday, July 5, 2007

Getting better all the time

James is mostly back to about where he was in February before he got his ALL diagnosis and got whacked with all the chemo. He is pretty active now which is great to see. The only down side with all his new activity is that it has become very difficult to keep his osotomy bag attached, but in the grand scheme of things, it is certainly something we can work with.

Today Katie and I brought James up to the clinic to begin his third phase of chemotherapy. As well as he as been doing, it was a little hard. We had been having some more issues with his central line (like no blood return from either lumen), but a visit to radiology to check placement seemed to fix that. We think it was the fit he pitched when I laid him down on the x-ray table. Anyway, both lumens finally gave a good blood return, the placement of the line looked fine and so he got his chemo.

He had a spinal tap, which was totally uneventful (PTL). And once he was ready took the vincristine and daunorubycin (sp?) readily through his lines. Aside from nausea, we probably won't see any side effects right away. If he has any, they wouldn't show up for a week or two or three. Vincristine is the chemo drug that we believe caused all his intestinal problems for the first two months of this adventure. He is only getting a half dose, so hopefully it won't cause any problems. It would probably be good to pray for no side effects from the chemo.

He will be back on steroids at home for 21 days. Next Thursday we will return to the clinic for more chemo and for an infusion of TPA which will, hopefully, break up the clot that is trying to form in his line.

As I finally get this finished up, it's actually Saturday morning (we were in Atlanta Thursday and Friday, staying at the Ronald McDonald house Thursday night) and James is doing very well, PTL.

Thanks for checking in on us.

Love, Stephanie

As a matter of fact, we had a wonderful time

We thoroughly enjoyed our time away last weekend. We slept. We ate--some pretty good food, too. We talked and we were quiet and no one interrupted the quiet. We read aloud to one another. We 'dreamed' about the future and all we have coming up in the next few months. We set a few goals and did some prioritizing. We walked around downtown Milledgeville. We visited Lowe's and sat down with a kitchen planner to get some ideas for our new kitchen.

Most importantly, we just really enjoyed being together and then we were very happy to get back to all our snuggly children and have them glad to have us home.

Love, Stephanie

for Mary McC.--I keep trying to e-mail you and it keeps bouncing back. Let me know how Burt's interviews went (we were praying). Sounds like exciting times with your family!

Saturday, June 30, 2007

17 years ago today

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.

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

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

Saturday, June 23, 2007


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.

Thursday, June 21, 2007

On another bumper

I love my country, it's the government I'm afraid of.

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

Seen on a bumper

Life is short; pray hard.

Wednesday, June 20, 2007


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