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.

Sunday, January 27, 2008

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

Thursday, January 24, 2008

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

Tuesday, January 22, 2008

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.

Monday, January 21, 2008

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

Saturday, January 19, 2008

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!

Thursday, January 17, 2008


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

Wednesday, January 16, 2008

Hit by a Mack truck

Monday I was eating lunch with the children, minding my own business, when I realized I was REALLY tired and my back and shoulders and arms and legs were starting to ache. I said I was going to lay down to rest to see if went away. Then I started coughing. It hurt in my upper chest to cough--like a little Christmas tree light bulb burst each time I coughed. Katie has been having a cough and the general yucks for about a week and she confirmed that this, indeed, was how it started for her too. Bummer. I thought she had a bad cold, but this is looking more like an upper respiratory influenza kind of a thing.

Owen has joined me. Lucky him, he got the intestinal flu part too--or mostly. Still pretty weak and sleeping a lot today, but hoping to be back up on our feet tomorrow. James has to go to Macon for lab work to determine if he gets chemo at home tomorrow night.

So far everyone else is staying healthy. Please pray with us that we don't pass this all around and James especially doesn't get it.

Thanks for checking on us. We miss hearing from some of you. How is your new year?

Love, Stephanie

Thursday, January 10, 2008

An important request

When we were getting settled in the hospital in Atlanta, we got an e-mail from friends about a friend of theirs whose little guy was diagnosed with Stage IV neuroblastoma. We prayed for little Nathan McClean and then, I regret to say, got pretty wrapped up in all that was going on with James. We thought of him, but didn't continue to follow his story. Recently, we got another note with updates from our friend. Nathan has, since April, had quite an incredible journey, including surgery, chemo and a tandem stem cell transplant.

Because of the way our oncology floor is set up at Egleston, we've had some pretty close contact with families experiencing a bone marrow or stem cell transplant. I can say, unequivocally, that it is an INCREDIBLY intense time. Even the doctors say that it really is awful, terrible, and horrendous what they put children through to try to get them better.

The greatest risk with transplant patients (similar to, but moreso than those on chemo) is infection. Well, it appears that little Nathan has a whopper parasite infection in his blood. He also has lesions on his brain. Tonight they began the three medications they hope will conquer the parasites--there is some concern that they may be too advanced. Tomorrow morning they were planning to do surgery to biopsy the brain lesions, since they have been able to get no other clues about what they are so they can treat them.

The family is in Louisville, Kentucky. They have tremendous faith and an incredible support network. I know they would appreciate your prayers for Nathan. You can learn more by visiting their Caring Bridge Site.

Thanks for stopping by.. and for praying.

Love, Stephanie

Our Children - and more

Over New Year's Day, we drove up to visit my mom and dad. We had a really enjoyable visit. Besides the good company, it actually got cold and we had snow flurries. This didn't excite anyone but me and Katie very much. I suspected I would miss winter when we left Minnesota-- I'm not asking for nine months of winter, just three to six weeks! ;*) It is just nice to be cold before I have to be so HOT all summer long.

But I digress.

My mom is very creative and she always has something crafty going on. Usually it's quilts, but not always. The children, between them, have about 18 quilts she has made just for one of them. Most of them are personalized with colors and themes. All of them are pretty, some are downright gorgeous.

In my younger days, my mom did a lot of embroidery work. In fact, she was a big designer for the now-defunct Sunset Designs. In her house, she has a computer/craft room. In her room, she has a bulletin board with ideas pinned to it for future or current project inspiration. I noticed this visit that there was a cute sketch on that board. It was a creative grouping of stick figures that remarkably resembled my children and even had their names on it! I wondered what it was for and sort of pictured in my mind, what it might look like in floss. I wanted to ask my mom, but I didn't want to spoil any surprise.

Later, she brought me a wrapped present. "Something I had just been able to finish," she said. She hoped it was okay and hope I liked it. I started to open it up--it was obviously in a frame--and as I peeled back the paper, I caught a glimpse of the corner. It looked like a living version of the drawing I had seen earlier on her inspiration board! I LOVE it and I just have to share it. If you know my children at all, this is totally them and it's a perfect addition to our new home.

So you can see how it all looks together in the frame.

Closer up, so you can, hopefully, see some of the details.

Thanks, Mom! I KNOW it will be a prized heirloom! I love you!!!

Love, Stephanie

Sunday, January 6, 2008

The Light Tree

Owen loves to build things. He has for a long time. When he was little, he could name every piece of construction equipment at a job site we drove by, although he had no interest in letters, numbers or colors--except for the yellow construction equipment!

Before he was ready to learn to read, his school assignment for the day was to 'build [something] for Momma'. The "something" varied from day to day and sometimes it really was something and he got to decide what to build. This went on longer than it might have for some other children, but by the time Owen was nine, he was ready to hit the phonics hard and it wasn't long before he was reading at his grade level and devouring any book at home or from the library that had anything to do with building.

Since then he has built a number of things, some small, some big, some obviously useful, some less so--but he always learned something from what he builds. This past summer, we were incredibly blessed for Owen to be able to work with the man who built our new home. He worked hard, right alongside the crew, during the two hottest weeks of our already hot southern summer. He learned a great deal and grew tremendously--in physical strength, in confidence and in real self-esteem-- the kind that comes from actually accomplishing something and pressing yourself further than you thought you could go.

Now that we are in our house, Owen has LOTS of ideas for things he would like to do and build to improve our new homestead. (We have quite a few ideas for things for him to do too :*))...

Because all work and no play makes Owen a dull boy, we try to let him have some fun, sometimes, and Vern's Christmas Break and a gift from Nona (my mom) resulted in two days of fun with a little learning and a pretty ending thrown in for good measure. Vern helped Owen with some of the calculations on the first day and a little power-sawing on the second. Owen set to work to lay out the plan and most of us came out to watch the light tree go up.

Owen figured out how to make the star for the top work...and look like a star!

Becca assisted Owen in getting the tree pole in the ground. The sandy soil here made it easy digging, but also required them to 'dig deeper' to get a stable base.

Once the center pole and the spikes were in place, it was time to string the lights. Daddy steps in to help again.

James fulfills his responsibility as supervisor and cheerleader.

The final strand is in place. When Owen plugged it in, all the lights lit and then some of the fuses blew. After replacing a number and blowing yet more fuses, Owen brainstormed with us about how to make it work... and trying to figure out why it wasn't working. We came up with a plan, which he tested, and it worked!

At first, this didn't seem like such a great time for this project. But I'm glad I kept my mouth shut (I don't always). Owen's enthusiasm at receiving the lights motivated him to pursue the project, to see if he could make it work. He was diligent in his work and now we have all the pieces in places to have a lovely Light Tree in our yard next Christmas!
Love, Stephanie

Friday, January 4, 2008

Great report from the docs and good news from home

We made it to James January 3rd clinic visit without too much excitement. There were no fevers and no emergency rooms visits, PTL! We did use pain meds to keep him comfortable and we had to keep him home from church once due to a bleeding mucous fistula, but for the most part, he has been a normal little boy in his interest in things around him and his activity level (that means he is getting in to everything we don't keep him out of!) Since his counts are so good, we get more chemo starting last night at 9:15 and ending today at 3:15p.m.

Here are a few pictures from around home:

Carrie and James looking out the window as we began our smattering of Christmas decorations.
Some friends in the community passed along a little pony. James will sit on it if it is in a box, but he gets really nervous about falling off when the pony is out in the open.
Katie is really good about taking time to read to the little three, which they love. A current favorite is "The Great Quillow".
Hannah likes to fix Carrie's hair (which has since been trimmed, but is still pretty long). James likes to watch.

Reported seen on a bumper sticker:
"My kid has more chromosomes than your kid" :*)

Please pray for James as his chemo continues for quite a while into the future. Sometimes the side effects or missing nutrients can cause a good bit of discomfort. We have been jealously guarding our family time with Vern on vacation from school. We've enjoyed Christmas and time together and are getting a good bit done in settling into the house. That will be ongoing for a while, too, but we are so glad to be taking baby steps forwards.

I'm working on a year in review post. HOpefully it will be up before Easter!

Love, Stephanie