No strings attached

For a very little while tonight James was free of all of his cords, tubes and strings. It was really nice. We danced. And we went down to the toddler playroom and watched the fish in the aquarium. James didn't seem to want to crawl around, but after the month he's been through, we can't say that we blame him.

You can see in the pictures how much more obvious James hair loss has become. I'm not real thrilled with the 'wispy look' and have asked about hair trimmers, but I think I'll wait til Vern gets here so he can say what he'd like to do.

Love, Stephanie

So where is Daddy?

Daddy stopped at a motel a couple miles from Bloomington-Normal. He drove about 750 miles today, so that means he has about 450 miles of driving tomorrow. We are very excited! as would anyone else be if they had to stay in a hospital for a month.

There is another family here, whose son had just finished his 3 years and 3 monthes of chemo and they are pretty sure he relapsed, but they can't tell because his bone marrow cells are dead.
They have been in this hospital for six weeks and will be here much longer. Besides all that, this boy's mom, 9 year old sister and 10 month old brother are staying with him.

I should get back to Momma and James now. As Tigger would say TTFN, Ta Ta for now!

Hannah

Things continue to move along here. It looks like we are on track for leaving Monday--hoping to be driving off into the sunset with my Knight-In-Shining-Armor, our little man and one of our fair maidens by about 9:00 a.m. The doctors are starting everything they can ahead of time to make sure things are in place for us to go. Dr. Neglia was very pleased that Vern is coming up to get us.

This morning James' white blood cell counts are moving up into a good range for making the trip. Dr. Neglia said that should continue. His hemoglobin is a little low and we will certainly be watching that. The plan is to get him off his TPN (the nutrition he gets through his IV/central line) tonight and get him all ready to eat normally--for him anyway. Normally includes eating real food by mouth, having boluses through his g-tube to make up for some of what he is missing, and then getting the rest of what he needs through an all night tube feeding at night.

Just before I left the room to come down here, I talked to Vern. He was getting close to Chattanooga, TN and he sounded pretty excited. Hannah and I are pretty excited he is coming. It will give Vern a chance to see his mom--which he didn't get to do before he headed off with the children, and the drive back will give us some great opportunities to catch up on some things that are hard to talk about on the phone.

We have a few things to pack up here and keeping on top of James' care. Getting him a bath, changing the dressing on his central line site, and mealtimes (which take about an hour or more as we step through eat part of the process. This should be a little less time-consuming when we get home and work a little more efficiently.


Here is James, the Sleeping Sweetie, all by himself in the bed last evening, taking a little nap.

Please pray:

1. for continuted protection for James from infection; that he would adjust to feeding by mouth and tube (everything going through his stomach), so that he would be ready for the trip home to Georgia.
2. for us as we pack up to 'move'
3. that all the things would come together for the meds and care items that James needs to be ready by Monday morning.
4. for Vern's safe travels and a great visit with his mom.
5. for the children in Georgia--safety, protection, peace, comfort--while Vern is travelling to bring us home.

Love, Stephanie

Things are moving quickly

The pace has definitely picked up around here for us. We now have a definite plan for James being discharged on Monday (barring any unforeseen infections or setbacks, of course... this would be a great thing to pray for protection from!)

We have an appointment scheduled for James at Emory/Eggleston's for Thursday morning at 9:30 a.m. We should expect to be there for 2-4 hours, but it would be a good idea to bring things for an overnight stay. Just in case. I don't think I will go to another doctor's appointment without an overnight bag for the next few years!!!

I called the Corporate Angel Network and they have no flights that will get us to our scheduled appointment.

So Vern duly considered all the other options--we had quite a few and we are very thankful to have had options! In the end, it seems that the best option for us is for Vern to drive up from Georgia over the weekend and then all four of us will drive back to Georgia, hopefully arriving by Tuesday night. That will at least give us Wednesday together before we have to take James to his next big appointment.

James continues to do excellently. He is comfortable, eating more, has more interest in food and life and the things and people around him. I am very excited about the reality of his being ready to travel on Monday.

We have a lot of little things to get together here to be ready to leave, so those will be top priority for us. Every time I turn around, someone new is coming in to talk to me about something important regarding James' discharge and our trip to Georgia. I have my own share of phone calls to make as well.

Please keep praying for James' protection from infection and for all the details to come together.


Here's the big guy giving his best smile. He is really perking up in spite of his new 'chemo kid' hairdo. Now that he is smiling so big again, you can still see a little of the Bell's Palsy. But it is MUCH better.
James with one of his favorite nurses, Stacie. We are hoping she'll be with us through the weekend, helping us move on out the door and down the road!
The other of the two pictures Hannah took of me and James... he was pretty content for the moment!
James waving for the camera. Not sure if it was before or after he hit the nurse call button--twice!

Love to all, Stephanie

Some very specific prayer requests

I talked to Dr. Lund, the fellow that did James spinal and bone marrow today. He said James is still totally cancer-free in his spinal fluid, which remains a very good thing. He also said he was ready to start James on continuous g-tube feeding!!! He'll start out slow and keep working up using a formula James is familiar with and leaving the step up (if there will be one) for us to work out with a dietitian in Georgia (yippee!!)

By doing this, James will, more than likely, be ready to be discharged Monday. This is WONDERFUL news. Hannah and I, of course, will be more than ready.

By tomorrow, we should have an appointment scheduled at Emory (probably for next Thursday, maybe for Friday). Then I will call the Corporate Angel Network folks and see if they have any flights that would work for us. (It would be incredible to get a Monday afternoon flight to Atlanta.) We should also know then if Hannah will be able to fly with James and me. We have about five possible back up plans in case there is no flight that will work for us or if James and I can fly, but Hannah can't.

It is looking very possible that we could actually have a few days with family in Toomsboro before going to Emory. I don't know yet how long we can expect to stay, but I plan to ask that question tomorrow.

Please pray with us:

1. that we can get an appointment scheduled at Emory for Thursday or Friday, preferably Friday.
2. that we can all three fly to Georgia on Monday on a Corporate Angel Network flight. If not, that the Lord would make clear which back up plan we should use and smooth the way.
3. that James would do well getting back to tube feedings, would keep improving with eating by mouth and would continue to be protected from any infection. (I just can't tell you how grateful we are for the real miracle here that James has had NO infections during his whole induction phase--ESPECIALLY considering his leaking tube)

God bless each of you. We are grateful to have friends and family walking through this with us, sharing our joys and sorrows along the way.

Love, Stephanie

What is CDIF?

I was curious when Momma mentioned CDIF, so I typed it in to Google and here is what I got.

CDIF (pronounced SeaDif) stands for Clostridium difficile. Clostridium difficile is caused by a large amount of antibiotics. And... CDIF is found frequently in the stool of children with antibiotic-associated diarrhea; however, its role as an etiological agent in children is controversial. It is also known as a "bad" bacteria.

As another side note, Clostridium Difficile is one of the most common causes of infection in the US, affecting the large bowel / Colon.

C. difficile, which can overgrow other bacteria in the gut during antibiotic therapy, can cause pseudomembranous colitis.

and lastly, the definition of Clostridium Difficile.

Clos·trid·i·um (klŏ-strĭd'ē-əm)n.
A genus of rod-shaped, spore-forming, chiefly anaerobic bacteria including the nitrogen-fixing bacteria found in soil and those causing botulism and tetanus.

So now you know.

Love, Hannah

Graduation

The first phase of chemotherapy, where they do their darnedest to knock out the cancer without knocking out the patient, is called induction. I am under the impression that the length of the induction phase varies for different types of cancer. James induction phase is 29 days. Today, he graduates from that phase. I don't remember the name of the next phase, for certain. I think it is consolidation. It starts in probably seven days. In that time, we hope to have travelled to Georgia and be able to start this second phase at Emory in Atlanta.

This noon, the new fellow, Troy Lund did James' bone marrow aspiration and spinal tap, in which James got his last dose of chemo for the induction phase. The results from these samples will tell us how James really did during induction and that will be a huge factor in which level of the study James will be treated under. The initial results will be back this afternoon or tomorrow, but the final, definitive results won't be in until sometime next week. We do not have to wait for those results to travel (HOORAY!!!)

Once James starting stooling again, he got diarrhea and a rash. The rash seems to be clearing. Because of the diarrhea, James automatically went into contact precautions because of the risk that he had something called CDIF (please don't ask me what that means). It is, essentially, an overgrowth of bad bacteria in the bowels due to excessive use of antibiotics. It can cause problems if transferred to people with low immunity (like people undergoing chemo), but it isn't a problem for healthy people. Once he goes onto contact precautions, they take a stool sample and culture it. Thankfully, James' culture came back negative--it took about 28 hours. One less thing to think about.

Dr. Troy is hopeful about getting us out of here soon. So we have another strong advocate in our corner. I have a feeling things are gonna start moving fast!

Please continue to pray:

1. for protection from infection (a 'new' risk with the spinal tap)
2. for physical comfort for James (he is doing pretty well, so far)
3. for things to come together with his tube feeding, especially the nighttime drip feeding.
4. for things to come together with timing of departure, travel to Georgia. I would like to ask that the Lord would allow us some time at home, in Toomsboro, with the family, before we begin the next phase of chemo.

Love, Stephanie

Hair, hair everywhere; and other news

When we were still in Duluth, I asked Dr. Wiermaa when a person on chemo usually starts to lose their hair. She said, "Oh, sometime around the end of the first month." Hannah and I have been noticing in the last couple of days that when we run our fingers through James' hair, a small handful comes out with our fingers. It isn't noticeable just yet, but it probably won't be long before we'll need to be looking for some hats. It could be dangerous to have a bare head during a Georgia summer. I understand that he probably won't remain bald for the entire three years and one month remaining of his chemo, but I'm not sure when to expect it to start growing back.
We were concerned yesterday that perhaps Hannah was getting the flu. Today, PTL, she is just fine. She even had Texas Chili for lunch. This evening we did 'pizza and a movie'. The pizza was from the cafeteria, the movie was Charlotte's Web. Nice family film. James enjoyed watching with us through most of the movie.

This afternoon a volunteer stopped by with some very nice fleece blankets. They were made by the family of a former patient from our floor and wing and were donated to be given to a current patient here. We were blessed to get to choose one for James to keep.

James has done wonderfully with his feedings. He is eating some food (yogurt, cantaloupe, cheese tortellini, cheddar cheese, peanut butter). He chewed up some green beans that he actually got into to his mouth with a fork, almost by himself, but then the chewed up green beans fell out, instead of getting swallowed. This is why we have a feeding tube.
We were able to do some laundry today. They somehow repaired the washer and dryer in the family lounge and we used one. The note on the machine says, "please limit to 7 pounds". I wonder how many pieces weigh 7 pounds. Since the party that set up the washer didn't notice the sign, we put in more than that and it took just over two hours to wash the load! Tomorrow we will know better!

Tomorrow James will have his end-of-induction-phase bone marrow and spinal tap. Unfortunately, he will have new docs for this as the top two rotate tomorrow. :* It seems that they all switch around just as we get into a good working relationship. Bummer. The results of this procedure tomorrow will determine what level of treatment James gets for the rest of his therapy.

We now have five people who have weighed in to see photos from the Georgia part of the family. Some have asked not to have their comments posted. I am enjoying reading comments (notes) from you! Some I haven't heard from in years! Thanks for your notes ... and your thoughts and prayers too. If you haven't ever left a comment, please do...it's fun for us to know who is keeping up with us here.

James and me snuggling (and NOT nursing, hooray!) while eating cantaloupe and watching Charlotte's Web.

Hannah and James snuggled up with James' new fleecy blanket.

Day 28 in the hospital

It has been four weeks since we (Owen and I) first took James to the hospital in the Duluth. Since then we have been in one hospital or another except for when we were driving down to Fairview from Duluth. This afternoon I had to double check with someone to see what day of the week it is!

The last two nights James has had trouble tolerating his g-tube feedings. He gets all gassy and tight in the tummy and it obviously hurts--a lot. Today, the oncology docs and I were talking about it and I told them that it sort of reminded me of when we first got James' tube and were trying to figure out how best to supplement his eating to make sure he got enough calories. At that point, he didn't tolerate a lot of formula, though we could use some. We finally hit a balance of using formula for his night feedings and using milk with yogurt for his boluses during the day. All this time, he seems to tolerate what breast milk he does get with no problem.

So, I asked what they thought about working with James to eat more real food by mouth first to give his digestive system a chance to work back in to eating. The two doctors thought that would be a good idea, especially since it will be important for James to eat foods by mouth during the trip down to Georgia.

Please pray that James would tolerate what he is eating (a little cantaloupe, a little yogurt, a very little cheese tortellini...plus some other things the doctors chased up for us... both freely admitting that despite the dieticians, it is awful tough to find good, healthy food in a hospital!!) and continue progressing.

Dr. Steiner, the attending physician for the last couple of days, has been on the phone with Dr. Frank Keller, an former partner of hers who is now a pediatric hematologist/oncologist at Emory in Atlanta. He is excited about taking on James ;*); Dr. Steiner is sure we will love him.

Today, I was supposed to try to make a bus ride run to Target, but that kept getting delayed because the doctors got tied up in an unplanned procedure. When all was said and done, one the NAs was able to scare up most of what we were needing. So we should be pretty well set for a while.

Earlier today I was not too hopeful about making it to Atlanta next week. While I am still not too hopeful about getting all the way to Toomsboro for a short reprieve/visit, I am more hopeful about making it to Atlanta. We'll see what the Lord has in store for us.

This morning we talked to Vern and Katie and it sounds like they are resting some today while trying to get a few things done. Vern's back is sore and all are pretty tired (can you say 'stress'?), but they are happy to be settling in. Grandpa John got off to the airport okay and should be in Duluth this evening.

Hannah is feeling a little punk today, hopefully she'll be feeling better soon.

Be sure to post a comment if you want to see photos of the crew in GA. So far we only have three!!!

Love, Stephanie

Oh well

This morning's post triple copied because I posted it twice and the computer told me it didn't work. I didn't even realize it had posted three times until Hannah came back from reading the blog to tell me. Oh well. I can't figure out how to delete the extras, so, for now, they will stay.

James ate a little more today and we bumped up his feedings to just 10ml/hour (about 2 teaspoons). His belly is distended this evening and he was in quite a bit of pain earlier. We did go ahead and give him some morphine and the doctors stopped his tube feeding for the time being. It is important to get him back to his normal diet and off the IV feeds (also called TPN or Hyper-Al).

Vern had lots of help in Georgia unloading the truck and trailer and they got everything returned. I think everyone slept well last night. All are excited to be in Georgia. Grandpa John scoped out the little white house (I will write more about that later) and thought that for $30,000 and LOTS of elbow grease we could have ourselves a very nice place. Vern says when we all get down there, we'll have a cookout so we can see everyone like they have.

Tomorrow I think they are planning on sorting some boxes and taking a few more things up to storage.

Enjoy the pictures and please pray that James will heal enough, or whatever needs to happen will, so that he can get his feeds by mouth and through his g-tube without pain.


James--trying some of his spaghetti from lunch the proper (?!!!) way, with a little encouragement from Hannah.
A little playtime with the physical therapist.
Mr. Spaghetti Face relaxing after a hard morning of eating and playing... And getting a bath.

Love to all,
Stephanie

Monday morning

Well, last night's hope for an 'early-to-bed' did prove to be wishful thinking, but we traded James' crib for a hospital bed so Hannah and I are no longer sharing one of those hospital chair beds. I think we all slept a little better.

The big news from here is that James pooped! This is a HUGE step in the right direction--a major milestone, as it were. Everyone here is pretty excited. Last evening, we suspected something was moving through as James was pretty uncomfortable. We suspect things were moving past the fistula repair site and causing the discomfort. Just in case, we went ahead and decreased his tube feeding rate and gave him a small bolus of morphine. That seemed to get him through the rest of the night just fine.

Over the next few days, we are hoping to increase his tube feeding rate (pray that he tolerates all the increases) up to his normal nightly feeding rate (which is 40ml/hr, for anyone wondering). During that time, I'll be working on slowly reintroducing some mild foods by mouth as he shows interest. Once he is up to the 40ml/hr rate, we'll hold the major 'drip' feeding for the nighttime, like we would at home and work more on his eating by mouth trying to get back to what we used to do before all this big stuff happened with the leukemia and his tube site leaking.

The doctors all said today that they are hoping to get us on our way to Georgia early next week. And that they definitely have "Georgia on their minds". Hooray!

Vern, Katie, Owen, Becca, Carrie, Dixie and Kitty all arrived in Toomsboro last night at about 10:30. I understand Grandpa John beat them by about four hours. When I talked to Vern, he was greatly looking forward to getting horizontal. We are thankful for the safe trips and looking forward to the next family reunion!

Today they are unloading the truck and trailer. I'm sure unpacking will be sort of like an extended Christmas ;*).

Hannah and I would love to see some pictures from the Georgia Skellys. If you share our interest, would you weigh in with a comment I can post so that they can see how much we want to see them too? (All you have to do is click on 'comments' below this post and follow the directions, step by step).

I heard from one of the nurses that it is supposed to get up to the mid-70s today here in Minneapolis.

Please pray:

1. for continued protection from infection for James and for complete healing of all his little surface wounds and the big things from surgery.
2. for transportation to Georgia for Hannah, James and me. Corporate Angel Network will allow both parents to travel to treatments with a child who has cancer, but we are uncertain yet if they will let Hannah travel in Vern's place. Of course, it also depends on the availability of seats in an already-scheduled corporate flight from Minneapolis to Atlanta, as well.
3. for the folks at home in Georgia as they get settled and determine what is next.
4. for a good report from James bone marrow check and spinal tap this Thursday.

Don't forget to comment that you want to see pictures from Georgia!!

Love, Stephanie

Monday morning

Well, last night's hope for an 'early-to-bed' did prove to be wishful thinking, but we traded James' crib for a hospital bed so Hannah and I are no longer sharing one of those hospital chair beds. I think we all slept a little better.

The big news from here is that James pooped! This is a HUGE step in the right direction--a major milestone, as it were. Everyone here is pretty excited. Last evening, we suspected something was moving through as James was pretty uncomfortable. We suspect things were moving past the fistula repair site and causing the discomfort. Just in case, we went ahead and decreased his tube feeding rate and gave him a small bolus of morphine. That seemed to get him through the rest of the night just fine.

Over the next few days, we are hoping to increase his tube feeding rate (pray that he tolerates all the increases) up to his normal nightly feeding rate (which is 40ml/hr, for anyone wondering). During that time, I'll be working on slowly reintroducing some mild foods by mouth as he shows interest. Once he is up to the 40ml/hr rate, we'll hold the major 'drip' feeding for the nighttime, like we would at home and work more on his eating by mouth trying to get back to what we used to do before all this big stuff happened with the leukemia and his tube site leaking.

The doctors all said today that they are hoping to get us on our way to Georgia early next week. And that they definitely have "Georgia on their minds". Hooray!

Vern, Katie, Owen, Becca, Carrie, Dixie and Kitty all arrived in Toomsboro last night at about 10:30. I understand Grandpa John beat them by about four hours. When I talked to Vern, he was greatly looking forward to getting horizontal. We are thankful for the safe trips and looking forward to the next family reunion!

Today they are unloading the truck and trailer. I'm sure unpacking will be sort of like an extended Christmas ;*).

Hannah and I would love to see some pictures from the Georgia Skellys. If you share our interest, would you weigh in with a comment I can post so that they can see how much we want to see them too? (All you have to do is click on 'comments' below this post and follow the directions, step by step).

I heard from one of the nurses that it is supposed to get up to the mid-70s today here in Minneapolis.

Please pray:

1. for continued protection from infection for James and for complete healing of all his little surface wounds and the big things from surgery.
2. for transportation to Georgia for Hannah, James and me. Corporate Angel Network will allow both parents to travel to treatments with a child who has cancer, but we are uncertain yet if they will let Hannah travel in Vern's place. Of course, it also depends on the availability of seats in an already-scheduled corporate flight from Minneapolis to Atlanta, as well.
3. for the folks at home in Georgia as they get settled and determine what is next.
4. for a good report from James bone marrow check and spinal tap this Thursday.

Don't forget to comment that you want to see pictures from Georgia!!

Love, Stephanie

Monday morning

Well, last night's hope for an 'early-to-bed' did prove to be wishful thinking, but we traded James' crib for a hospital bed so Hannah and I are no longer sharing one of those hospital chair beds. I think we all slept a little better.

The big news from here is that James pooped! This is a HUGE step in the right direction--a major milestone, as it were. Everyone here is pretty excited. Last evening, we suspected something was moving through as James was pretty uncomfortable. We suspect things were moving past the fistula repair site and causing the discomfort. Just in case, we went ahead and decreased his tube feeding rate and gave him a small bolus of morphine. That seemed to get him through the rest of the night just fine.

Over the next few days, we are hoping to increase his tube feeding rate (pray that he tolerates all the increases) up to his normal nightly feeding rate (which is 40ml/hr, for anyone wondering). During that time, I'll be working on slowly reintroducing some mild foods by mouth as he shows interest. Once he is up to the 40ml/hr rate, we'll hold the major 'drip' feeding for the nighttime, like we would at home and work more on his eating by mouth trying to get back to what we used to do before all this big stuff happened with the leukemia and his tube site leaking.

The doctors all said today that they are hoping to get us on our way to Georgia early next week. And that they definitely have "Georgia on their minds". Hooray!

Vern, Katie, Owen, Becca, Carrie, Dixie and Kitty all arrived in Toomsboro last night at about 10:30. I understand Grandpa John beat them by about four hours. When I talked to Vern, he was greatly looking forward to getting horizontal. We are thankful for the safe trips and looking forward to the next family reunion!

Today they are unloading the truck and trailer. I'm sure unpacking will be sort of like an extended Christmas ;*).

Hannah and I would love to see some pictures from the Georgia Skellys. If you share our interest, would you weigh in with a comment I can post so that they can see how much we want to see them too? (All you have to do is click on 'comments' below this post and follow the directions, step by step).

I heard from one of the nurses that it is supposed to get up to the mid-70s today here in Minneapolis.

Please pray:

1. for continued protection from infection for James and for complete healing of all his little surface wounds and the big things from surgery.
2. for transportation to Georgia for Hannah, James and me. Corporate Angel Network will allow both parents to travel to treatments with a child who has cancer, but we are uncertain yet if they will let Hannah travel in Vern's place. Of course, it also depends on the availability of seats in an already-scheduled corporate flight from Minneapolis to Atlanta, as well.
3. for the folks at home in Georgia as they get settled and determine what is next.
4. for a good report from James bone marrow check and spinal tap this Thursday.

Don't forget to comment that you want to see pictures from Georgia!!

Love, Stephanie

Hannah changed my mind

Hannah snapped this nice photo of me and James sharing yogurt. James was being fussy and Hannah suggested that if I weren't there, it might be easier for him to settle down. She then suggested that I should come down here to the family resource center where we use the computer and do a post and include the picture. So, here I am.

We got off the phone with Katie shortly before I left the room. They stopped near Birmingham, AL for supper at a BK, and are getting very close to Atlanta. They anticipate arriving in Toomsboro between 9:30 and 10:30 eastern time. Everyone has been tickled to see budding trees and green leaves and grass. If you are reading this on Sunday evening, please pray for the stamina Vern needs to finish the run. He is getting tired.

James has had a pretty good day. He has been a little needier again today and we attribute that to turning off his morphine pump. He's gotten a couple of boluses of morphine to help with the pain, but has been nursing a lot more. His gravelly throat seems to be just fine and he begged to taste some ice cream, some yogurt and he ate a little bit of soup earlier today. Tonight, they brought him a tray that had tortellini with marinara sauce. He was happy to taste a few very small bites. Tonight he will get a very light run of formula through his tube and tomorrow we will give him a chance to have more and to hopefully try some more food.

We are very grateful that, although his temp has varied a good bit over the last couple of days, James seems to be avoiding infection. Praise the Lord! Sores on his stomach from dressing tape are beginning to show signs of healing. It is a much slower process with the steroids and chemo in his system. Hopefully that will improve Thursday when he comes off of the steroids.

I am hoping we'll be able to get to bed early tonight, but that may be wishful thinking. Tomorrow promises to be another busy hospital day. We are also hoping to add posts from Georgia in the not-too-distant future, as well.

Love, Stephanie

Sorry, no pictures today

Last night, Vern and company stayed in a familiar hotel in Paducah, KY. It is the same place we stayed on our way to GA in January when we went down for the wedding. We got a call from them around 9:40 that they are getting on their way. Grandpa John made it to somewhere between the AL/TN border and Birmingham. He'll probably be in Toomsboro today.

Hannah, James and I stayed right here in Minneapolis, of course. James has a little upper airway raspiness and is having some trouble coughing it up. I'm sure it hurts to cough when you've just had abdominal surgery. I remember!

The surgeon, Dr. Saltzman continues to be pleased with James' progress and is pushing the oncology docs to get him feeding through his new g-tube today. We will start really lightly to begin with (5 mls of pedialyte/hour) seeing how he tolerates it. Since he has already been breastfeeding, I think he will do fine with this. Tonight, though, we will probably bump it up and we'll see whether or not his stomach is ready to push things out--please pray that it is!

We will also remove James continuous morphine and see how he does with occasional boluses.

Yesterday we napped a lot. We may do that today too. It is really quiet on the floor this weekend because they discharged quite a number of long-term patients on Friday. Hooray for them! Our turn will come. Tomorrow we will have been here for two weeks for a grand total of 26 days in a row in the hospital.

We sure appreciate yours prayers and your encouraging notes. If you haven't already left a comment, please do. You can always say, "no need to post" if you prefer to keep it private.

Please pray:

1. that James would tolerate today's tube feedings well and his stomach would move it through, like it's supposed to and for wisdom to manage his pain as we pull his continuous morphine.
2. that his congestion would clear up and not be an issue.
3. for continued protection against infection.
4. for continued safe and uneventful travels for Vern and the children and for Grandpa John.

Love, Stephanie

Yesterday...

It was sad to see the rest of the family driving off into the sunset,
which it was, well almost. Knowing that it would be about 2-3 weeks before we'd get to see them again. Yet feeling glad that they could come by for a visit and be able to see James.

While they were here, I took Owen, Becca and Carrie with me upstairs to put away some food that they had brought us. While we were there, we watched our roommate, a three month old baby who is very cute, so her mom could get some lunch. Both the little girls thought she was cute too. I think that Carrie was amazed at how little she was. Most of the time we were up there, Carrie and Becca were watching the baby.


Ronald from the Ronald McDonald house came by today, and gave James and me stickers that said 'I met Ronald'.

Love, Hannah

P.S. the picture I'm talking about is the fourth picture down from the top.

Showers of blessing

This is James, resting very comfortably in his crib. He has already seen all of his doctors this morning and had a nice nursing :*). We are working at lowering his morphine dose and still keeping him safe and comfortable. Every one of his doctors was duly impressed with how well he is doing. His oncologist commented that it is hard to believe he was only about 13 hours post-op. Someone else mentioned that he certainly wasn't doing this well 13 hours before hand! All were pleased with how well he handled everything during the night. I think they fully expected James to have spend the night in the ICU.

We attribute James' great progress to lots of prayers and God's great mercy. Please continue to pray that James will progress, improve, heal and be spared from infection in such a great way that God gets the glory.

There is still some hope that we will be able to fly from Minnesota to Georgia during the first or maybe second week of April. We will need to stay here with James through the 28th or 29th of March for certain. It would be a tremendous birthday gift to Carrie if we could somehow make it for her fourth birthday on March 30th!

With all the blessings of special times and safe-keeping yesterday, you wouldn't think it could get any better, but the Lord sent our evening nurse, Crista, at just the right time to be the icing on the cake of the day yesterday. She was new to us, but knew about us and immediately locked in to our desire for community and Christian fellowship in moving to Georgia. She and her family desire the same thing and we found we are truly 'kindred spirits', as Anne Shirley would say. She will be our nurse for the evenings during the weekend and we are grateful for the fellowship.

Vern, Katie, Owen, Becca and Carrie (along with Kitty and Dixie) made it to Wisconsin Dells last night. They were on the road bright and early this morning and hoping to make it to Paducah, Kentucky tonight. Grandpa John drove on ahead and made it to Bloomington/Normal, Illinois. He was planning to avoid the mountains in Tennessee and take the longer way (about 90 miles more) through Birmingham, Alabama. I do know that Vern said he was hoping to be able to enjoy the trip together as a sort of break between two hard pushes. Katie told me this morning that Kitty, who is free to roam around the van while they are underway, has been a great diversion as she wanders around giving and getting attention.

Thank you for your thoughts and prayers. We are blessed, almost beyond words ;*). Please continue to pray for James' protection from infection and quick and complete healing as well as for safe and uneventful travels for Vern and the family and Grandpa John as they travel to Georgia.

Love, Stephanie

Oh, me of little faith

This morning I was fretting about how the day would go--I was very concerned about James' surgery (and still am concerned about his recovery) and was extra concerned, on top of that, about how our only time for a family visit between Minnesota and Georgia might just get pushed aside. I kept thinking that of all the details there have been to work out so far on this incredible roller coaster ride, our God has not failed us and has more than met every need. He did that again today.

Surgery actually called for James early and Hannah and I went down with him to pre-op. At 11:40 a.m. we were on our way there. At 12:40 p.m., after James was already lightly sedated, we were watching the anesthesiologist and the nurse anesthetist carry him down the hall through the OR doors and out of sight. We checked in to the surgery waiting room and went upstairs to James' room to take care of a few things and the call came that the clan was parked and walking toward the hospital. What a great reunion we had in the lobby! Vern commented that we should move to the side (I thought we were to the side, but we weren't) and a man in a wheelchair waiting to pass said that this was too precious to move to the side. I felt the same--but we did manage to clear the way some so folks could pass.

We actually had a relaxing time together in the waiting room. We snuggled a lot and told each other how much we missed the others and how much we loved each other, relishing just being together. The surgeon came out when only Katie and I were in the waiting room--Vern had gone out to move the van and trailer, since he had parked in a one hour parking place, and Hannah had taken Owen, Becca and Carrie up to James' room to put a few things away. James' surgeon, whose name keeps escaping me, said that James did great and that everything was just as he expected. This was very good news as so many things the past few weeks have turned from one surprise to another.

James only lost about a teaspoon of blood and so didn't end up needing the bag of blood I thought he would this morning (although they may decide he needs it later). Everything inside was just as suspected and, according to the surgeon, it all when back together just like clockwork. He installed a new g-tube since that will remain an important part of James' nutrition for the foreseeable future.

Before they had to leave, the whole family was allowed together back to the recovery room and it blessed this momma's heart in a big way to see and hear my wonderful husband, James' daddy, pray over him before he had to leave. Suffice it to say, even in my fear, which the Bible tells us is a lack of faith, God was mighty and faithful and gave us some precious time together.

James remained in the recovery room for a longer time than normal because there was some concern about his oxygen saturation levels (an area of greater risk for people with Down syndrome). At this point, he is now in a private room on the regular floor, although the folks over in the Peds ICU do know about James in case we have to take a trip over there tonight.
It seems we have just about gotten his pain meds to a good point and he is resting well as I type this. It's nothing short of a miracle that he has not gotten any major infection so far.

Please continue to pray:

1. for protection from any infection.
2. for thorough and quick recovery and healing (a difficult thing in chemo patients).
3. for safety and an enjoyable trip for Vern and the children and special friend, Grandpa John, who is driving the moving truck.

Dr. Kris Ann, one of the fellows working with James, answering Carrie's question, "When can my Jamesie come home?" Later, she told me that all the children asked pretty much the same question when they were given an opportunity to ask.
In recovery, a well-loved James, comforted and doted on by his daddy, sister and big brother.
Dr. Kris Ann answers Vern's question, "So, what's your timetable?"
A sad sight--heading off into the proverbial sunset.
The little trooper recovering in his new room. We did call the surgeons about his new g-tube and it is now oriented a little differently so it doesn't cause him any unnecessary discomfort.

Love, Stephanie

Poor scheduling

Here's the tiny little guy on Benadryl while he gets his first bag of plasma last night in preparation for surgery today. He will be getting at least another bag of plasma and a bag of blood, then the docs (surgeons and oncologists) will determine if he needs more. You can see his 'second diaper' wrapped around his middle. We decided that with the GoLYTLEY this was the best way to 'catch' everything.

At this point, there is a big time conflict between James' surgery and the little bit of family time we were planning on and looking so forward to. Please pray, as you think about us, that we would have some special time to hang on to the memories of during the remainder of our time apart, before James' can be safely transported to Emory University in Atlanta.

Love, Stephanie

Looks like the surgery tomorrow is planned for about 2:15 p.m. This could change, of course, just like all surgery schedules can. It always seems that the later one is scheduled in the day, the greater the likelihood of a bigger, later change.

Today we are running more GoLYTLEY through James to try to clean him out for surgery. Unfortunately, most of what is coming out is coming out of his g-tube site. It's pretty gross and looks pretty painful. It also makes an incredible mess. I asked the nurse today if this is what a colostomy is like and she said this is much worse.

Some of James' clotting factors tests came back with some really goofy results, so they got another specialist involved and think they have an answer as to why. It has something to do with one of his chemo drugs. It should, theoretically, be out of his system. However it appears it is not. James' body seems to hang on to all these nasty little things longer than most of us do. Because the Peg-Asparaginase he received in Duluth still appears to be in his system to some degree, it is likely affecting the ability of his liver to make some important clotting factors for his blood. The plan is to give James plasma tonight to see if it helps and then give him more, plus some blood and maybe some other clotting factors by IV tomorrow, closer to his surgery time.

The folks at home sound really tired when we have talked to them on the phone. It also sounds like they have tons of help. Last I heard, the truck was loaded and heading off to pick up the car dolly and the trailer was just about full. The basement was emptied and clean and the upstairs was about done. The buyers came by to walk through although I was under the impression that Vern was supposed to meet Mr. Buyer tomorrow morning to tell him about the heating system.

Please keep praying:

1. that the Lord would continue to keep little James safe from infection and give him physical comfort. (It's been another tough day, although we have tried to keep him as comfortable as we can).
2. that all the house stuff would be wrapped up and everyone would get a good, refreshing nights sleep.
3. for safe, uneventful travels for Vern and the children and for Grandpa John who is driving the big truck.

I am heading out to the car shortly to get what we will need out of the car. In the morning, Grandpa John's son will come pick up the car so that Grandpa John can load it onto his car dolly and head south. He will drive ahead of Vern to start with to give himself a cushion if something should go wrong with the moving truck.

We are overwhelmed (in a good way), humbled and very grateful for all the thoughtful and generous gifts of time, food, help, money, prayers, notes and more. May our Lord bless all of you richly, as you have blessed us.

Love, Stephanie

The game plan

All the medical thinking heads involved in James' care got together today (oncologists, gastro-intestinal specialists, pediatric surgeons and radiologists) to debate the best plan of action for James' care. We always knew he was a special little guy and this just further confirms it. :*).

In the final analysis, it looks like surgery is the answer. The sooner, the better. It is tentatively scheduled for Friday in the early afternoon. We should have a more specific time tomorrow. Of course, we'll know the real time when they wheel him into the operating room.

It looks like transferring James' medical assistance to continue his care here once our house has sold will be an easy thing to do. We are still working on transferring his coverage to Georgia, but that is beginning to come together too.

I spoke with someone at Corporate Angel Network today and it is looking like that is currently our best possible option for getting James safely to Georgia at this point. There are still some details to work out, though, and nothing is certain.

Please pray:

1. that the Lord would continue to improve James' immunity and increase his infection-fighting capacity and strength to handle surgery.
2. that if this isn't the right answer, or the right time, that the Lord would bring a safe delay, but that if it is the right answer and the right time He would allow nothing to get in the way.
3. for wisdom for all involved in James' care.
4. for strength for the folks at home as they finish up the last details of packing and loading and cleaning up the house.
5. that the Lord would go before us all and prepare the way to all be together again in Georgia.
6. that He would continue to get the glory.

The oncologist said today that they didn't know how I did it. I told them the only answer is Jesus. I don't see how anyone can do this without him. Truly.

Love, Stephanie

A quiet day

The last two days have been pretty stressful for James, so the oncology team agreed that it would be good to have a day of snuggling and laying low, catching up on missed comfort, while they strategize as to the best way to treat James' gastro-colic fistula.

Here is a picture of James and Hannah--finally--for you to enjoy. Thanks to one of the nursing students on the floor today for helping me 'crack the code'.
James looks a little groggy in this picture, taken this morning, because he is on a continual low dose of morphine, which seems to be helping with his comfort most of the time. The polka-dotted band is a clever little invention which covers up the entrance of his central line, helps keep the tape secure and has a nifty little upside down pocket with Velcro to hold the unused central line ribbons that could otherwise hang down and get caught on something. All the blue band-aids mark the most recently used fingers for his every-six-hour blood glucose tests.

Enjoy your own quiet sometime today. Thanks for your prayers and support.

Love, Stephanie

Late breaking news

Early this morning we headed down to x-ray to get James' picture taken. The radiologist confirmed there was no contrast in his stomach and we came up hopeful that they would still be able to do the study today. While the GI team was in the room visiting with us, the fellow (who is a female ;*)) from James' attending team (the HemeOnc team) came in to tell us that the radiologist who had done James' upper GI pulled all the pictures James has had taken and with the whole lot of them together, he was fully confident of diagnosing James' with a gastrocolic fistula. While this, in and of itself, is not a great thing, we at least have something that the oncology, gastro-intestinal and surgery folks can begin to work with. It is something that must be fixed and it is possibly something that once fixed will make the rest of things move along smoothly. Maybe.

So there are a few things being considered now. When one is on chemo and specifically on steroids, the healing process is significantly delayed. The timing of James' likely surgery with regard to his ability to heal and with his need for continuing chemo is of utmost concern with the medical teams overseeing his care.

In addition to this, just the very need to mess with his 'waste system', if you will, means the risk of introducing infection to his little body is incredibly high at a time when his bodies ability to fight infection and heal itself is incredibly low.

In determining how and when to best help James, we will also need to figure how we can maximize James' comfort (or at least minimize his pain and discomfort) during the time we are working to resolve this issue.

Please continue to pray for James' body's ability to heal itself and for protection from infection. Also pray for wisdom for all of us caring for James.

Love, Stephanie

Funny answers

We just got back from taking James down to pediatric radiology. They couldn't do his test. The heartbreaker of the whole thing was that he had gone so long without breastfeeding today to prepare and it was a really hard day for him painwise.

They couldn't do the test because there is still contrast in his body from the upper GI test they did last week. Normally by this far out, all the contrast should have been passed, but it wasn't this time and then we wouldn't get an accurate test.

One thing that may happen is daily x-rays until all the contrast is gone. We are waiting to hear from the GI docs and the surgeon to see if they want to do anything different.

Please continue to pray for wisdom and timing and protection for James from infection. Maybe this delay is doing just that.

Love, Stephanie

Pain Management

James seems to be really uncomfortable today. The doctors have made some adjustments to his pain management plan and he is getting a very small amount of morphine continuously right now, but it is not as much as he has been getting over the past couple of days. Please pray for wisdom for us to help him and for the nurses to see his need and be able to adjust his meds. We anticipate him being pretty uncomfortable for a while longer, possibly, and it is difficult to know how to help him.

Maybe we could just pray that the Lord would somehow remove the source of James' pain.

Love, Stephanie

Surprises

Updated to add: James' procedure has been moved to 2:30 this afternoon. Please keep him in yours prayers for safekeeping, protection from infection/contamination and for a clear accurate test.

Well, the doctors said James did great during his procedure this afternoon. It took a little longer than we thought it would and when they came to get us, it seemed that things might not have gone as they thought they would.

They didn't.

To make a long story short, they (the pediatric gastroenterologist and his team, plus the surgeon involved) have reason to believe that last June, when James got his initial feeding tube, things moved around at just the wrong time and part of James' colon was caught in the cut where James G-tube was inserted into his stomach.

The more I ponder this possibility, the more sense it makes with some of the other 'evidence'.

In order to confirm this (or to rule it out), the plan is to do a contrast enema tomorrow (Tuesday) afternoon around 3:30. I think there will also be some sort of a scope, but I am not certain of that (it's on my list of questions for the docs tomorrow morning). Normally, this wouldn't be a big deal, but for a child on chemo with low white counts and low neutrophils (things in our blood that indicate the ability of our body to fight off infection), it can be a risky procedure. The greatest risk for James is the risk of infection. In fact, if the doctor is right in his hypothesis, it is truly a miracle that James has had no infection as a result of this.

I am not certain what all will occur if they confirm this is indeed what has happened. I do believe it will require yet a separate surgical procedure to repair the damage, but I don't know just how invasive that will be.

Please pray:

1. for wisdom for me to clearly see and understand all I need to in order to be able to sign the consent form. Or to be able to express my concerns enough that some alternative test or procedure can be found.
2. for the continuing miracle of safety from infection for James.
3. wisdom and guidance for the doctors involved.
4. for strenghth and good health for the folks at home as they make the final push to pack and load for Friday's departure.
5. that God would be glorified in all this.

Thanks for bearing with me through all the typos and errors in the last post. Your notes, prayers and blessings continue to be a great encouragement to us.

Love, Stephanie

A quick update

Sorry for the 'radio silence' for the last few days. I have busier and James has been a little needier, but we are all well, PTL.

There is no change to speak of in the leakage from James' tube site and so this afternoon the plan in to do an endoscopy to check things out from the inside, look at the irritated site, take some samples to biopsy (there is a possibility that this stomach issue is, in part, caused by a virus--that will take six weeks to confirm via a culture). More than likely, they will remove his G-tube to let the site heal and will put in an N-G tube to continue draining the bile from his stomach.

The doctors are working together to determine the best timing and best dosing for James of the Vincristine, which may be the biggest culprit, but is also the most important weapon in the arsenal of drugs against his leukemia.

Vern and the family are working hard to get everything packed up. The current plan is to have packing pretty much done by Wednesday, then Vern will have to move some larger items--chicken pens, the lawn tractor/snow blower--to a friends, who will try to sell them for us once we are gone. Thursday will be loading the truck and cleaning the house (reinforcements are planning to come help, pray for good health for them). Friday is the house closing and departure.

Sometime today we are hoping to get the ball rolling to request the help of the wonderful folks at Angel Flight to move James to Georgia sometime the first week of April.

I hope to update a little sooner this next time.

Thanks for your notes, thoughts and prayers.

Love, Stephanie

Talking about movies

Awhile back, I mention that Momma and I went to Garden cafe at the hospital in Duluth.
One of the many things we talked about was a movie some of us had watch recently called 'Ma and Pa Kettle go to town'.

Here is a little history of the movie, but the main thing we talked about was when Pa was arrested by the police in New York for supposedly poisoning the monkeys at the zoo. Ma had visited the 'Lucien et Louise de Paris' Beauty salon and now looked very fashionable.

At the beginning of the funny part, Ma comes into the station and to the desk and says "I'd like to see Mr. Kettle". Finally the sergeant tells her where Pa is and Ma heads for the room and opens the door just as the three men with Pa Kettle say "TALK". This is now the funny part!

Ma~ "I've come after yah' Pa. Pa~ "You sure look purty Ma" sniff, sniff "and smell purty too."
Ma "never mind all the sweet talk. What they been doing to yah." Pa "nothing, it's been right sociable." Ma "well, I'm taking you outa here" grabs him by the shirt and pulls him out of the the chair. One of the detectives "Just a minute lady, what about his Habeus Corpus"
Ma "I'm taking that too." I've tried to put it in the words they used, but I'm not sure I was very successful at it.

One of the things that makes it hilarious is that Ma has no clue what Habeus Corpus is.
You should see the movie, it is much better than words. Besides, words can't be given Ma's facial expression.

Here is some links to the meaning of Habeus Corpus.

http://en.wikipedia.org/wiki/Habeas_corpus

http://www.lectlaw.com/def/h001.htm

and here is a neat article from 1679, http://www.constitution.org/eng/habcorpa.htm


Love, Hannah

Preliminary results

I already knew that medicine is at least as much 'art' as 'science'. Probably more 'art' than 'science' really. And we are getting very regular reminders of that here with James. :*)

Everyone is still waiting on the finally report from the radiologist on yesterday's upper GI test. However, I am getting some feedback from most of the parties involved.

It looks like the contractions in James' stomache and duodenum (the part the stomach empties into, which empties into the small intestin) have stopped. Anything that gets into his stomach sits there until it fills up enough to start leaking out the stoma where his G-tube is or until gravity works together with some 'hopeful, unknown' event to cause the sphincter muscle in the exit of his stomach to open allowing the contents to drain down into his intestines. Then, they pass remarkably quickly through his intestines and into his colon.

It appears there is an area of intestine that is somehow bypassed, but this is unclear. It is also unclear as to why bile is leaking back up into his stomach.

At this point, we are intentionally draining the 'overflow' in James' stomach into a bag through his G-tube. There has actually been quite a lot of fluid. It is mostly greenish, though it is beginning to turn more yellow. In addition to draining, we are giving James two drugs to help counter this inaction in his stomach which we believe is caused by Vincristine, the most important and most commonly used of James' chemo drugs.

The current plan is to come of with some sort of chemical cocktail suited to James needs which includes drugs he needs to counter act the negatives of the vincristine.

To be really honest, this does not thrill me. It will be a little while before I can really push to look into some sort of 'options' (if there are any, they won't be readily apparent). James will need to have two more doses of the Vincristine this month and then probably at least one dose every month for the remainder of his treatment (which should run through about May 2010.

So far, the action we've taken (and he hasn't actually been on the new meds that long yet) haven't decreased the amount of leakage coming out around his tube site.

Suffice it to say that at this point, we don't have any real good answers. The oncology doc here is hopeful, but we have yet to really have the GI doc weigh in. As I type this, I see many things that bother me--it seems we are treating symptoms rather than looking for causes as we initially started out doing. Hopefully this will continue to a point. And it just doesn't seem right to have James enduring this kind of discomfort for three more years.

On an up note, we all slept great last night. We prayed for creativity to figure out how to block the light from James' roomates TV (which ran ALL night the night before). And we figured out that if we bunch up the excess of the privacy curtains in the right place, they do a pretty good job of cutting down the flashing light shining in our faces from the changing scenes on the TV screen (PTL). There is also interest at the nurse manager level in the events of our first day here, so I am trying to pull my thoughts together to share with her--probably this afternoon. At noon today, I am supposed to go learn how to take care of James' central line. His current day nurse did some research into caring for his G-tube site and came back with some gentler suggestions that I hope will help to make it less uncomfortable for James since we now have to clean it so often.

Vern and the children at home are working along getting things packed and sorting to take this to the dump and the Salvation Army. They are making good progress and have reserved a truck for the 22nd. The current plan is that after closing on Friday 23 March, at least some of us will head on out to Georgia. The prayer is that everything will miraculously come together so that all of us that move together.

I'm going to let you extract prayer requests out of this post today, so I can get back to James and Hannah and be sure not to miss the doctor's rounds.

Thanks so much for your thoughts, prayers, notes and wishes that you could do my city driving for me! I have finally figured out that if I delete something you send, but ask me not to post, I have a copy in my e-mail!! I hate to lose some of those notes with great stories and quotes and Scripture verses. Please feel free to keep them coming :*). (Ann, would you comment and send me your e-mail address please?)

Love to all, Stephanie... feeling much more at peace in the big hospital in the big city and willing to stay here as long as James needs to be, but looking forward to going home as soon as it is safe for James.

A couple of my not-so-favorite places

One is large cities. Even though I grew up near San Francisco and spent almost four years living there during and after college, I have no fondness for metro areas. I just don't fit in, I'm not comfortable and it's too big, flashy and busy for me. It's okay if you don't feel that way about cities. Really. But we rural Skelly's all feel pretty much the same.

Another not-so-favorite place is hospitals--especially big ones and especially teaching ones. I know they have their place and I am glad they are available and do the work they do. But, I would just prefer to avoid them, if at all possible.

So, here we are--me and Hannah and James. In a big city, in a hospital--a big one (a REALLY big one), a teaching and research one.

To state the obvious, I am way out of my comfort zone. And you all know what an advocate I am of parents advocating for their children. As far as I am concerned, it is one of my most important jobs. When the battle is hot, it is my most important job. So today, I got to be a mommy advocate in a HUGE teaching hospital in a BIG city. And I didn't feel like I was making any progress.

About the time I didn't think I could handle it any more, Katie called. I shared with her what was going on, in a nutshell, answered her other questions and we got off the phone. Unbeknownst to me, the home folks stopped and prayed and I felt impressed to ask to speak with the resident overseeing James' care, nicely. It wasn't long before folks started listening, questions began to get answered and things finally made some progress. (I never did even have to talk to the resident, by the way.) And I didn't have to be mean or rude. Though I did have to step pretty far out of my comfort zone.

This evening, the charge nurse came in to ask how we were doing and I sort of hemmed and hawed before I felt impressed again to be totally honest, though kind and gentle, about my day and my perceptions of how things work (and haven't worked for me) in this big city teaching hospital. Thankfully, she was very helpful and open and validated my concerns. She took my issues to the nurse manager and began working on some more of my unanswered questions and James' unmet needs.

James is now much more comfortable and therefore, Hannah and I are too. Things will move slower here (larger things tend to move more slowly than smaller things) and that is okay. The key is that things need to be moving. The key I need to remember is to stop and pray. The blessing is when others remember and pray on my behalf, when I've forgotten. So if you pray for us today, thank you!

This evening, we met the Pediatric GI doctor and the resident who works with her. The initial take on James' case is that the nasty stuff leaking out of his tube site is bile. It may be mixing with other things, but they aren't sure. Bile doesn't belong in the stomach. It is made by the liver and secreted into the upper intestine where it is supposed to join up with other things leaving the stomach and 'run it's course', if you get my drift. Bile can do some damage to the stomach, even causing sores and bleeding. So starting this evening, James will get some other medications to help bring this under control and stop any damage to the stomach from the bile.

Tomorrow at 2:30 p.m., James is scheduled to have an upper GI--this will be his third ever. Lucky guy. The hope is that the test(s) tomorrow will give us some idea of what is causing this 'bile backup'.


Please pray:

1. that they would be able to get the information they need from the tests. That the tests themselves would be successful and not have to be redone.
2. for wisdom for the 'testers' and the specialists looking at the test that would be able to discern what is going on with James and recommend the next best steps for him.
3. that, while out of my comfort zone, I would still be the mommy, the advocate and the woman God wants me to be and that I would stay resting in Him and not get overwhelmed. (and Hannah, too, she says :*))
4. for James' comfort and good health through all of this.
5. for a private room and that Hannah can continue to stay with us.

Love, Stephanie

A visit from the home folks

The highlight of our whole weekend was being together as a family for a few hours on Sunday afternoon. Vern and the crew arrived around three in the afternoon. Hannah and I were *finally* able to open and view the whole slide show from Jarod and Anna's wedding, so we had saved it for everyone to watch. Then we had a sort of picnic lunch of grilled burgers and potato salad and tea--it was wonderful to have some food from home and even better to have it with the home folks.

After lunch, some of they children played with the laptop and found Part 1 of a 1940s-style movie about a private eye named Sam Franklin on Mr. Jarod's xanga site. They all huddled around the laptop to watch Part 1 and they want to know when he is going to post Part 2.

Before everyone left Sunday evening, we sang several hymns together and Hannah and James and I realized how much we miss being home for the singing. And so we appreciate some of the day-to-day things more when we get to miss them for a while.

Love, Stephanie

Favorite links

The world of blogs is an interesting place. If you haven't been a part of it, you might find some encouragement out there. Two of my favorite places to visit are:

1) Mommylife-- hosted/written by mom of 12 and author, Barbara Curtis. Barbara and her husband, Tripp, had nine children of their own. Number 8 has Down syndrome. Then they went on to adopt three more boys with Down syndrome. She writes on a variety of topics, mostly Mommying and relationship oriented, but some politics and other timely nuggets from the older women to the younger.

2) Amy's Humble Musings--written by Amy Scott, "wife to a handsome rocket scientist, mom to five children 9 and under, and an aspiring Proverbs 31 woman." Amy's topics vary widely too, but generally cover some aspect of practically living out our Christian faith in our homes and with our families.

Happy reading.

Stephanie

A strategy game for two-year-olds

James had a good afternoon today once he finally got some more fluids into his system by IV. He perked right up and got to working hard on his favorite baby strategy game.






It didn't last forever, but it was fun to play with him for a while instead of just comfort him.

Last night, we all slept at least as well as we would have if we were home and the one morphine shot seemed to give James the respite he needed from the pain and cramping. It is true that morphine can slow down the gut and isn't the optimum pain reliever for someone who may have an ileus. However, we have to find some balance in treating James' pain and dealing with other medical issues. In his case, he generally has pretty good bowel sounds--sometimes too good. We suspect those 'too good' sounds and related activity were the culprits causing the pain James could no longer bear. As this thing progresses, we are getting more suspicious of an intestinal blockage. Almost certainly, whatever James' intestines are doing is a side effect of the chemo drug Vincristine. Even with James not taking anything more by mouth or tube since yesterday, he is still oozing some nasty stuff from his G-tube site--though in much smaller quantities. We gotta wonder what is putting that much reverse pressure on his little tummy.

As of tonight, James is on TPN (total parenteral nutrition). He is getting nutrition and fats and liquids through his central line (IV). Hopefully, this will give him some relief from the hunger and allow his belly to rest some more. I think the plan is to see how his tummy looks tomorrow (we've been getting regular morning x-rays for the past three days) and then try something in his tummy to see if he can tolerate anything yet. If this doesn't work, we will need to get some more expert help on Monday.

On the home front--everyone at home is working hard to sort and pack stuff for the big move. I had this thought last night that in two weeks, we'll be closing on our house. It seems strange not to be there and yet it seems right to be here. Vern's cousin Marian has a great network of folks here that have shown much interest in our chickens and pens and one local friend bought some for his family to raise birds in. None of the ads we posted have brought any interest, so we are very grateful to Marian for her help with this aspect of the move--thanks, Marian!

Vern has decided that doing a moving sale would be way too much at this point and so they are putting things in piles, boxes and bags to take to the Salvation Army or the Goodwill. Tonight is probably Vern's last day at work, so that he can focus on getting everything ready. At this point, it looks like we are again aiming for Georgia while continuing to wait on word regarding James' medical coverage. Tomorrow, Lord willing, we will all be together and Monday, Owen turns 11.

Praise the Lord for 1)a good night's rest last night; 2)a nap today and 3)the wonderful way that Momma's can comfort their babies. 4)For His overwhelming protection and 5)incredible provision. 6)For the great love He has shown us through so many.

Please pray with us for 1)wisdom in diagnosing James' true intestinal problems and 2)for healing. 3)For continued protection, especially protecting James from illness. 4)For safe travels on Sunday for the rest of family, 5)continued wisdom and clear direction for decisions that need to be made. 6)For strength for those at home to continue with all that needs to be done. 7)That the Lord would richly bless all those who have so richly blessed us whom we feel we could never possibly repay.

If you haven't left a comment, please do. It doesn't need to be any more than, "I read your blog today." or "Thinking of you." We love to hear from you. Thanks for stopping by.

Love, Stephanie

For fun

All of these photos were taken between Christmas 2006 and February 2007:

Sweet, happy boy.

With his favorite brother.

Kissy face.

Bein' a big boy.

Love, Stephanie

Just so you know

I was talking to a friend today and she asked if I read her message that said,"....". I hadn't. Then she asked again about a different comment and I hadn't seen that one either. :*(.

Apparently, if you don't get some sort of confirmation with a yellow box (according to Ann.... we don't see it here), we don't get your comment :*(. I have posted every comment I have received. If it didn't get posted, I didn't get it.

Please try again. Reading comments and notes from you all is a nice highlight to our day here.

Love, Stephanie

Good news and a little setback

Well, after running and re-running the tests on James' bone marrow from yesterday and his blood samples today, the determination is (drum roll, please)... James is in remission! Like I said here, remission doesn't mean the cancer is gone, but that it is almost gone. Specifically, that less than 5% of the cells in James' bone marrow are cancer cells.

The tests show that James no longer has any blasts (immature cancer cells) in his blood and the cancer cells in his bone marrow as of yesterday make up only 3.6%. So that is very good news and we all (especially James' oncologist, Dr. Wiermaa) are very pleased.

However, this roller coaster ride has only just begun. I guess I was a little premature in announcing that James' system had recovered from the ileus. Once we started increasing his intake of food (little bits of light foods--which James was initially thrilled to have in his hungry little tummy) and fluids (mostly formula), it has become apparent that things are not moving through as they ought to. After he ate some red jello this afternoon, red liquid started leaking out his G-tube site. He also started acting like he did last Friday. While Dr. Wiermaa was in with us, she 'happened' to be listening to his belly sounds when he did one of his questionable growls and at the same time he had significant belly noises. It looks to her like he is cramping, which is kind of what I was thinking, but I just wasn't sure. PTL, for some quasi-tangible confirmation. I decided to go right for the morphine since the Tylenol with codeine didn't do anything for him last week.

So, please rejoice with us that James is responding so well to the chemotherapy (from the cancer cell standpoint), but please pray with us that his intestines would recover, that if there is any type of blockage, we would be able to find it and it would not require surgery, but would clear quickly on its own. Please pray, too, for some restful sleep tonight for all three of us.

100,000 miles: The photos

Click here to read the story that goes with the photos.

Stephanie

[admin note: James is sort of resting after getting a morphine shot so I thought I'd test out posting a picture on this laptop. These seemed like a great place to start. If I can do this, then tomorrow, Lord willing and James is up for it, I'll try to post some other photos... some from around here.. and some from home! This could be kind of fun!]