Life around here

James loves to climb into the bottom part of the entertainment center. I would like to have the space to put away videos, but alas, I cannot find it in my heart to fight James for his treasured 'playhouse'!

The children moved the livingroom into the diningroom one day, built a stage and did a 'play' that evening. They had a grand time and it was fun to watch. The amazing part to me was how quickly it all got clean up and put away. Got a clean livingroom out of the deal too!
James likes to walk with his walker toy that he got for his third birthday (back in December--sorry, I never posted on that). Recently, he was caught on film walking with his toy and pulling his pole around too (quite a feat!). He was getting his tube feeding at the time.
For Christmas, Carrie Rose (almost 5) got her Kindergarten books and we got started on her official schoolwork in January. She hates to miss a day!

We have been trying to take a walk each evening before dinner--we've missed more lately as we have been trying to get 'homesteading projects' done. But we always enjoy the walks when we get out. Our road is a lovely place to walk.

Rubber band shooting championship held in our 'Big room' one Saturday morning in lieu of real work. A grand time was had by all and Daddy and Owen tied for first! (It's my story, I can tell it however I want. :*) )

Thanks for checking on us... Next up, after the thunderstorm, Lord willing... garden photos!!!

Have a great week!

Love, Stephanie

Cheap date

We had a fun Valentine's Day. At home, we tried to keep the schedule pretty true, except in the morning we switched a few things around and had 'read aloud' time all piled and snuggled up on our bed instead of the couch. Poor Vern was already at work. We finished our then-current read aloud, the second in the Crown and Covenant series, King's Arrow. We have learned a good deal about the Scottish covenanters reading these books and look forward to the third book. I am hoping to read more about this period of history once we finish the trilogy.

In the afternoon, Katie fried chicken--something she has wanted to do for a while. Owen made some woven paper placemats, Becca and Carrie made some cards and wrapped a couple of candy hearts for their Daddy and Momma. All the 'goodies' were collected with some potato salad, sourdough bread and artichoke antipasto, in a basket. Vern tried to leave work on time, but had students come for help--that is a good thing, so we don't complain! When he came home, we had our family devotional time and then Vern and I took the goodie basket and headed to town. The children enjoyed fried chicken, homemade french fries and chips along with a video.

Since James had this week off from chemo and I had no other need to go to town, Vern and I did the shopping we needed to do and then went to the Valentine Card aisle. We read most of the 'his' and 'hers' cards and passed them to each other. Some time ago, we figured that it was more fun to go to the card store and read and share and laugh over several cards than to agonize over choosing one, spend money and maybe read it again once or twice in the next eight years (if it hadn't been tossed in a move!)!

Of course, it's cheaper too!

Happy Valentine's day!

Love, Stephanie

Keeping busy

When we were down with the flu, we had lots of time to ponder all the work we should have been doing around here. Once we were finally back up and running, we were able to get right onto some of the many things we had only thought about doing. And we've accomplished a lot, PTL!

Some of the things we have been busy with:

We cleaned out and organized the laundry (it no longer has all the extra things in there).

I have been spending 15 minutes a day or so working on one of the pantries (we have two small ones instead of one large one). We can get LOTS more into it and we can find what is in there that we need--some shelves are specifically marked to hold those items that would normally go into kitchen cupboards, if we had them. Once this is done, and I'm close!, I'll move to the other pantry.

We've been working on bringing more order to the front porch (it's amazing how things can collect there) and the carport (stuff fills in this space too).

Last week we sat down to plan our garden and realized that we needed to get on the ball because we could have planted spring peas in January!?! (Seven years in Minnesota will adjust one's frame of reference with regards to gardening!) Our garden is near the house. It is fenced with chicken wire (we have 'free-range' laying hens that would eat the whole garden in a day) and is currently 35'x40'. The outside has raised beds, built by Owen of recycle wood. Owen built the gate too.

Our biggest challenge right now is burning or digging out roots from old trees that we are finding as we turn and add amendments to our very sandy soil. We have also encountered a southern weed, not-so-affectinately called "Nasty plant". I couldn't have come up with a better name! It sends up little vines with thorns but it packs an INCREDIBLE root system! As we work on the roots, to prepare the main garden area (where we plan to garden intensively, as we understand it!), we are filling the raised beds with broccoli plants, cabbage plants, bush pea starts (never seen these before), lettuce (which we will cover for the frost forecast for Sunday night), spinach, mesculun mix seeds, and spring pea seeds. Our first intensive bed in the middle has onion plants and sets.

I am taking pictures, and maybe some rain-y day, I'll get to post some.

What are you up to?

Love, Stephanie

Better than the doctors thought

I love it when Dr. Keller, James' oncologist, says he's sooo impressed with how James is doing... that he is doing so much better this cycle of chemo than Dr. Keller ever thought he would do! All the glory goes to the Lord.

In November, we met Hannah Cate and her mom. Hannah Cate has Down syndrome and was diagnosed on November 1st with BOTH kinds of acute leukemia (ALL and AML). Their family also has six children and homeschools and Keleigh, Hannah Cate's mom, decided to ask folks to just pray that Hannah Cate wouldn't need to be in the hospital (they also live four hours away from Atlanta!). So, folks have been praying, and God has been saying, "yes".

Since then, we have asked local friends to ask God with us that if it would be His will, we would avoid any overnight hospital visits this year. So far, God has said yes--and we are very, very grateful!

Yesterday, we had a clinic visit and Dr. Keller was *very* pleased with James' labs. (WBC- 5.68; Hgb-11.8; Platelets-803K; ANC-3,680) Since James was doing so great ('didn't he have the flu since you were here last?!!!'), he got methotrexate last night and today at home. Dr. Keller also decided that one of his chemo drugs (mercaptopurine, or 6MP) could be increased closer to a full dose. He had previously been getting a little more than 1/2 dose.

Coming down the road: In two weeks, on Feb 21 (which just happens to be Vern's birthday), we will take James to Macon for counts and then, assuming all is well, he will get chemo at home that night and the next day. The following week, Feb 28th, he is scheduled to return to Atlanta for a spinal tap and vincristine. Vincristine is the chemo drug that has wreaked so much havoc with James' GI tract, resulting in 1) surgery to repair a gastro-colic fistula (where his old g-tube site was) and put in a new g-tube; 2) enterocolitis and an ileostomy, which we all hope will be reversed once James' treatment is complete; 3) two hospital stays due to eroded g-tube sites--one of which the g-tube fell out of the site, the erosion was so sudden and large.

While we are concerned about this upcoming chemo, we would like to ask you to join us asking the Lord for special protection for James: that the chemo would attack it's intended victim (any remaining leukemia cells that we can't detect) and would not harm the nerves (especially in his intestinal tract), that his body would continue to work well (as it has been lately) to move the food and liquid through his little system, not allowing any back up or any erosion of his g-tube site.

Our first prayer is that God would be glorified and that His will would be done. If our desire is not in line with His will, we want His will.

We are praying now...would you join us? As we get closer to the time James gets his chemo, we hope to post a 'sign up' to pray for James over a 24-hour pray push, standing in the gap for James.

One more tidbit of encouraging news: Dr. Keller said that when James' nasal swab came back positive for influenze, he really wanted to keep him in the hospital. But he looked so good, it just didn't make sense! PTL!!!

We are grateful for your support and prayers for us and for James! Thanks for being an important part of James' team!!!

Love, Stephanie

Flashes of hope

"Flashes of Hope is a non-profit organization dedicated to creating powerful, uplifting portraits of children fighting cancer and other life-threatening illnesses."

We were privileged to have a Flashes of Hope photo shoot in December during our clinic visit. It was a real surprise, last-minute thing as they were just wrapping up and we didn't know they were going to be there that day--they're usually there on Mondays, and only every other month.

Yesterday, during our clinic visit, we received our Flashes of Hope package. It included a leather folio with two 8x10s, 11 proofs and a CD with the 11 photos on it. We share copyright privileges for the photos--which essentially means that as long as we don't use them for personal gain, we can post them on the internet and make copies.

We are uplifted by these portraits of our courageous, conquering hero, James. We hope you are too!

Love, Stephanie

Sunday in the ER

It's been a great weekend. We had a campfire last night and roasted hot dogs and warmed baked beans in the spider pot--we're hoping to learn some of the skills of camping in the safety and comfort of our own yard so that maybe, one day, we might actually enjoy camping--or at least the children might enjoy it! :*)

This morning, we were getting ready for church and Vern sat with James in the chair. They both fell asleep--Vern is still not all the way back up to snuff. While I was finishing getting ready, one of the children came in to say that Daddy wanted to talk to me about James. Evidently James had been coughing a lot more, he was grunkier and he had a lot of nasal drainage. It was still clear, but there was a lot and he acted like he wasn't feeling very good. So, we decided that James and I would stay home.

We were all comfy on the couch and the others were wrapping up and moving towards the van. Katie and Hannah were getting a couple of last minute things when James started gagging. Not too long after he was vomitting and by the time all was done, we thought he felt pretty warm. So we took his temperature. It was 100.5*F and Katie headed out to the van to tell Vern. She came back shortly and said, Daddy says we're all staying home.

The rules of chemo say that if a person on chemo gets a fever of 100.5*F twice in four hours, you need to call the oncologist. If he gets a fever over 101*, call right away. In about 45 minutes, James' fever was over 102*, so we called the on-call oncologist. It wasn't someone I knew (unusual for us), but she was helpful and thorough and we decided that it would be best to take James to the ER in Macon. We were both hopeful, since James's ANC was 1200 on Thursday, that we wouldn't need to be admitted. (ANC=Absolute Neutraphil Count--the measurement of white blood cells that indicates how much immunity a person has. A person with low or no neutraphils--500 or less--is said to be neutropenic.)

So, we packed the cooler, made some drinks to take, loaded James's equipment (feeding pump)and supplies (diaper bag, formula and pedialyte) in the car and headed off to Macon. We hoped for some continuity and that we would have our favorite ER nurse practioner and nurse,since they often work on Sundays.

People on chemo have some priority in the ER. I really appreciate that. We walked in to the ER and went to the desk to sign in. All we usually say is James, the baby we are carrying, is on chemo and has a fever. Everyone is still friendly and helpful, but they sit up straighter and move a little quicker through the initial questions. It is never long before the medical technician comes around the corner from the triage room to call for James.

In triage,we always go through the same drill, since it is mostly different people each time we visit. He is weighed and we give a run down of James' medical history--it is quite long for a three-year-old. Then we list all the meds he is on and the couple he is allergic to. Invariably, the nurse will ask how to spell one and maybe what one or two of the meds are for. Then comes time to take his temperature and we have to say, 'no rectal temps'. 'Why not?' 'Because the doctors say, 'no rectal temps for children on chemo.' They scratch their heads (sometimes they don't actually do it, but you can see that look on their faces!) And then we work together to find some way to get a temperature taken.

Today's nurse asked if we could try getting it under the tongue. I said, "We can try!" We did and succeeded without too much trauma!

The nurse led us back to the pediatric area of the ER and settled us in our room. We had a new-to-us NP and RN, but they were both very nice. The NP works at the same office as our regular pediatrician during the week.

During our time there, James got an IV--since he no longer has a central line. He is a hard stick, like me, and it was no picnic, but it could have been worse. When all was done, he signed 'thank you' to the nurse. He gave blood for lab tests and got fluids and an antibiotic, he got three chest x-rays, one was a repeat. He is such a brave, big boy as they 'take his picture'. He is so good to 'put his hands behind his head' or 'reach for the sky' or show us 'how big is James, sooo big'. The xray tech said that he was better than most of her adult patients. They wanted to use a catheter for a urine sample, but we came up with an alternative that was a little less invasive. He had his ears checked and nearly panicked when the NP wanted to look in his mouth. But Hannah got her little flashlight out of the diaper bag and we were able to enourage him to say,"aaaahh". That was good enough!

We think that his fever is from the upper respiratory/sinus thing that James has going on.

After five hours, we finished all we needed and the docs agreed we could head on home. It was a quick trip and we were surely glad to be back. We enjoyed our Sunday evening popcorn and some of our current read aloud book, _Duncan's War_ by Douglas Bond. It is a very exciting book and we are all enjoying it.

It is always so good to be home. Tomorrow is Monday.

Thanks for checking on us. Please pray for James to fight off his cold/respiratory infection. And please pray for our friends, the Norths, as David battles graft versus host disease that is attacking his lungs.

Love, Stephanie

Great labs

Hannah, Becca, Carrie and I took James to Macon for labs today. This evening I spoke with our nurse and she said his labs look great. White counts are down after fighting sickness, which is to be expected--2.85; Hemoglobin is up to 11.7; platelets are about the same--596K and ANC (the indicator of how well his immune system is working is 1,280. As long as his ANC is 500 or better there are no other mitigating factors, James gets his divided dose methotrexate. He is also back on mercaptopurine (6MP), which he will pretty much get every night until we are done with chemo. They took him off of it last week for a break with the flu.

He does still have some congestion, mostly sinus, so please ask the Lord with us to clear this up. We are also asking that the chemo would only knock out bad cells and no good ones.

James has had trouble settling down to sleep at night lately too, so if you think of us at bed time, please pray for his peaceful, restful sleep.

This chemo is given tonight at 9:15 and tomorrow at 3:15 a.m., 9:15 a.m., and 3:15 p.m. He gets his rescue drug, leucovorin on Saturday at 9:15 p.m. and Sunday morning at 9:15. The next clinic visit/lab/chemo is planned for two weeks from today (Feb 7th)

We are grateful for your prayers for us and James. Thanks for checking on us. Love, Stephanie

Back in the saddle, more or less

We are coming around here and looking for a closer to normal day--just lots of coughing, throat clearn and snuffling in the background.

We just finished lunch and in the background I hear: a CD (Majesty and Glory) playing "Whiter than snow" in the background, children finishing up lunch, James 'talking' as he watches the other children have things he wants and the hand grinder (run by Owen) to make flour for Katie to bake a couple of loaves of homemade bread.

Laundry is moving through the washer and dryer and the 'folders' and we hope to catch up today (this is the routine--catching up on Monday and Tuesday after a day or two off!)

Yesterday, Hannah and I sorted through all of the medical supplies we could find in the house. We had already taken a few boxes to a nurse friend who is involved with medical missions, so there wasn't as much as there could have been! We divided things in to three bins--one for g-tube and feeding supplies, one for wound and ostomy care supplies, and another for miscellaneous medical supplies and equipment--including spare thermometers, stethoscopes, medicine measuring cups, etc. This cleared room for some of James' other feeding supplies--formula and pedialyte--which frees up some room in the pantry. Sorting the pantry is another goal for this week.

Below are photos of our closet. We have just one between the two bedrooms (Owen sleeps in the loft over the bedrooms). One side of the closet is shelves. Each of us has a shelf and bins where needed instead of dresser drawer space. It is very different and not perfect, but I like it very much. There is plenty of room on other shelves for towels and washcloths, linens and paper products. There is an iron and ironing board in the closet and an outlet to make it easy to use--there is plenty of room to set up the board. The other side of the closet is all hanging space, with shelves at the top. I still need to take everything out of the closet at some point and finish caulking and paint the whole thing. It will happen soon enough. In the meantime, this is working very nicely!







Prayer request: I am amazed for all James has been through that we haven't seen too many of the bills. I don't like that as I think it is important for someone to know the value of the medical care they or their family members receive. Lately, due to changes in our insurance situation with Vern's job, we have seen more and more bills. Not that much is due on them at this point, but we are seeing these bills because our insurance company (United Healthcare, the old Blue Cross/Blue Shield, if I understand these things correctly) is 'waiting' for continuity of coverage letters for James, because most of his needs are 'pre-existing'. I do not know why it is taking so long to get this squared away, but I am getting concerned about the 'help' we are not getting. We submitted James' continuity of coverage from Minnesota and explained that he was then covered by Georgia medicaid, and continues to be. We can get no continuity of coverage letter from GA medicaid because, well, because he is still covered by medicaid as a secondary insurance.



So, the prayer request is that we can get everything in place to demonstrate that James has had insurance coverage all along, so that his insurance coverage will continue through his treatment and for other medical needs that will be coming up again soon.

Some up, some down

Most of us are on the mend with the flu and cold thing going around. We are grateful to the Lord for the apparent miracle of Tamiflu. James is doing very well, staying busy and with just an occasional cough.

Vern started with a head cold thing this morning and is resting today (it's a holiday for him) in the hopes that he will not need to miss anymore work.

We had big hopes for making some progress on things around here over this three-day weekend. Instead, we are contenting ourselves with babysteps--those are important too!

Hope you are remaining healthy. Thanks for checking on us!

Love, Stephanie

My amazing mother-in-law

I spoke to my mother-in-law on the phone last night. She sounded great!

If you don't know her, this probably would seem to be no big deal. But truly, my mother-in-law is an incredible woman.

She is one of two remaining children in a family of nine children. When she was just 17, she lost her mother and at 18 she lost her father. All her siblings pulled together to get everyone through school and most through college. She trained to become a social worker. Her heritage is Finnish and while those who didn't know her very well would say she was 'stoic', those of us who know her well would say she is unflappable.

Eight years ago in December, she had surgery to remove cancerous polyps. My father-in-law was so confident in her ability to heal, he was sure they wouldn't need too much help at home. After all, she hadn't had any trouble recovering from a c-section some 37 years earlier! He would have been right, too, except that at the very end of December, she had a minor heart attack. She went on to fully recover.

Last Fall, my mother-in-law had emergency gallbladder surgery. She was very concerned about how slowly she was recovering and that she would never feel normal again. By her 90th birthday, on Thanksgiving Day, she was beginning to feel normal, except that her knee was giving her more trouble than it had before. She thought she would have it repaired in December and the surgeon decided she needed a full knee replacement!

So on December 15th, my amazing mother-in-law underwent knee replacement surgery. During part of our time in Minnesota, Vern worked on the rehab wing of a nursing home. From his experience, he figured his mom would spend at least six weeks in rehab. This past Wednesday, January 16th, my mother-in-law came home to her apartment (she lives in a senior apartment building near Minneapolis). She was out in record time--one month and one day, including Christmas and New Year's.

She can shower on her own, she can walk without the aid of a walker, though the therapist said to feel free to take it if it made her feel more secure at first, but, that she could use the rails in the hallways if she really needed to.

She was happy to be home and actually kind of tickled that so many of the residents came to welcome her home and rejoice with her in her great progress!

WELCOME HOME, Mom! We love you!

Education

From a reprint of a wonderful old book (1850) called _How to be a Lady: Useful Hints on the Formation of Womanly Character_ by Harvey Newcomb.

Chapter II. Nature and Objects of Education "...'Education comprehends all that series of instruction and discipline which is intended to enlighten the understanding, correct the temper, and form the manners and habits of youth, and fit them for usefulness in their future stations;' all, in fact, that is necessary to make a man or a woman--a gentleman or a lady."

God said 'no'

[Update: James' nasal swab came back postive for influenza (boo). No chemo for a week or until his counts show he is ready again (yaaayh). Hannah read me his counts over the phone, and they *are* excellent--Hgb 11.3; ANC ~4,800; WBC ;Platelets ~650K. He is coming home with Tamiflu--a med that is supposed to neutralize the flu virus, shorten it's duration and lessen it's severity. Tomorrow we will take James to his pediatrician to get one more dose of antibiotic, just in case the fever was caused by something else.

Vern just called and they are finally on their way home from Atlanta. Should be here by 7p.m.]

At least in part. It looks like James is coming down with *some*thing. He's pretty puny. This morning early, he had a fever that continued up, so we called the oncologist on call. He thought James should be seen in clinic under the circumstances. The Lord was merciful as we still had plenty of time for Vern to call in and he and Hannah (who are both feeling just fine) made the run to Atlanta. I was very grateful since I am not up for that just yet.

At this point, they gave James an IV and some antibiotics. His counts look great according to Dr. Keller. I don't have the numbers. They did get blood for cultures and they will swab his nose and check for influenza. He will come home with the IV in place and, at this point, I will take him to Macon for another dose of IV antibiotics tomorrow (because of his fever).

While they were in the room at the clinic, I talked to James on the phone. It helps to have an interpreter. Our conversation went something like this:

Me: You are a brave boy and Momma is very proud of you.

James: Nya. Interpreter: He's nodding his head.

Me: Are you my brave boy?

James: Nya. Interperter: Nodding his head.

Me: You are such a brave boy. Are you my big boy?

Interpreter: He's shaking his head. I think he's feeling pretty puny.

Me: Oh, sweet boy. You are still very brave. I hope you can come home soon and we will snuggle. Would you like that?

James: Nya Interpreter: He's nodding his head.

Me: I've got lots of big hugs for you. mmmmmmmhhmmmmmmm (sounds like a big hug)

Interpreter: THAT got a smile!

We are grateful to avoid a hospital stay. Lord willing, our preference would, of course, be to stay home!

Thanks for checking up on us.

Love, Stephanie