We made it! Praise the Lord!

Well, James made it! We are rejoicing here by enjoying our regular Friday Night Pizza and movie.

James got his last dose of steroids yesterday morning, but he is still steroid-hungry. That is certainly a silver lining to the steroid thing!

Today he has eaten:

1-1/2 home-canned peaches
1/2 c. scrambled eggs
8 oz. orange juice (EIGHT OUNCES--this is a Hallelujah Record!)

TWO bananas
1 piece of celery (a first!)

1/2 homemade pieroshky with gravy
1-3/4 c. homemade yogurt (plain, with honey)
4 oz. orange juice

one of those yucky frozen-pops-in-a-bag-thing-ies :*)
a piece of bacon

5 more oz. orange juice
1/2 peach (picked off a piece of peach pizza)
a whole piece of homemade double crust pizza, stuffed with onions, tomatoes, a little bacon with cheese on top minus the crust

about 3/4 cup of Breyer's chocolate chip ice cream

I think this is a whole record day for James eating...

Truly the most amazing part of this steroid/g-tube time is that his site was a little tender this last Thursday when we got vincristine and started steroids. Yesterday, his site looked better than it has looked in about a month and James was no longer wincing every time we touched it!

To God be the glory! Thanks for praying!

James on steroids

James' little face is starting to puff and his appetite is increasing. He ate like a little piggie today and we are so thrilled. The more he eats and drinks, the less we need to use his g-tube for feeding and fluids, the less we use his g-tube, the less of an issue the pressure on the g-tube site to cause erosion! So far, his g-tube looks pretty good from the outside.

Today James ate:
a little bit of apple juice
1/8 cup ice cream to help the morning meds go down

1 quesadilla
4 peach halves
3/4 cup chocolate ice cream

2 T. pulled pork with barbecue sauce
3/8 cup corn with butter, salt
2 oz. herb iced tea
1-1/4 cup yogurt/jello parfait
generous 1/2 cup chocolate ice cream

He would have eaten more ice cream but we need to save some for the rest of the week!

Thanks for praying with us. Please don't stop. And let's give the glory to the Lord.

Call upon me in the day of trouble. I will deliver you and you shall glorify me.

Psalm 50:15

Belated update

Well, I tried to do an update from the hospital Saturday evening and it was lost in cyberspace. Saturday was a boring day in the hospital day--which was just fine with us. We snuggled a lot and watched LOTS of episodes of the old TV Superman show. James is pretty fun to watch--he does the motions to the whole "faster-than-a-speeding-bullet; stronger-than-a-locomotive; able to leap tall buildings in a single bound. It's a bird, it's a plane......"

Mostly our goal was to keep him lying down, so the ever-so-slight pressure of the g-tube button inside his belly didn't press inside preventing further erosion and allowing healing to begin. Saturday night, we began using James' g-tube for feeding and Sunday morning he got a bolus of formula. There was no leakage and it didn't seem like it was getting any worse, so they discharged us on Sunday.

Between the time James got his IV out and we left, he was walking around (with the help of a Little Tikes shopping cart toy) and visiting some of the nurses. One even commented that she didn't know that James could use his legs! He was really doing great and all the nurses that had seen him back in April (when he had colitis and got his ileosotomy) were pretty excited for him. Of course, we were glad to head home and even more glad to BE home!

During our visit at the hospital, we ran in to Nathan Suerdieck and his mom, Allison. Nathan was having a BMT for a rare disease called, HLH. It usually occurs in small children, but Nathan got it last year in his teens. Just a year ago, they weren't sure he would even make it. Nathan has lots of medical issues to deal with now, but he has a great attitude and Allison is a big encouragement to me too. They live just 25 miles away from us, but we had lost touch when we all left the hospital... so we exchanged info and now we can keep in touch! If you would like to learn more about Nathan or pray for him (I know he and his family would be grateful), you can look him up on http://www.carepages.com/ and enter his name.

When we 'moved in' from the car to the hospital, we met a very helpful young man on the elevator, Germaine, whose five-year-old son had been in the hospital for a week with inexplicable high blood pressure. We talked and shared and were able to pray with him. I'm sure he would appreciate any prayers you might offer for his precious son.

One thought I did have about regular hospital visits is to wonder if James would do better when he finally gets his ileostomy reversed, if we have some regular contact with the hospital and some of the nurses.

I should have written sooner (I did try last night, but couldn't sign it), because I don't remember all the silver linings from this visit, but there were more...

As always, the best part is coming home! Thanks for praying for us and checking in on us.

Love, Stephanie

Our awesome God

Well, we here at the Skelly household hereby proclaim "Pray for James" a resounding success. No credit to us, but all to the LORD, with HUGE THANKS and gratefulness to all who participated (by signing up and by just praying without signing up)!!

In spite of the sign up not working entirely like I had envisioned, and the links from the blog here not working like they were 'supposed to' (due, primarily, to my ineptness and inexperience), 19 people signed up for 22 of 47 slots to pray for James. Others called or e-mailed and said they couldn't sign up for a particular time, but that they would be praying extra for James. A dear friend from church and member of our community posted a note on her blog, asking readers to help cover James with prayer.

We, including the children, were blessed and humbled as we watched the sign up e-mails come in the first evening. There were many names we'd heard, of people we do not know ourselves who have been praying for James and our family.

Yesterday, Hannah and I saw from a computer at the clinic, that our own "Skelly children" signed up to fill a gap. Later, they told me that one had prayed "that someone would sign up for 4:30" and when they checked after their time, someone *did* sign up for 4:30 (Thanks, Mrs. Stevens!)

Along the way, some would suggest we e-mail a bunch of folks, friends who might not be reading the blog, to tell them. I didn't feel like we were supposed to do that, so I didn't. I didn't have a good reason, just a check. This morning, Katie commented that it seemed that God wanted us to see that this was bigger than us, bigger than our church, bigger than what we could do ourselves and that we would be humbled and He would get the glory.

As the day progressed yesterday, the children asked what we should do about the night-time slots that weren't filled. They thought I was going to assign them times to wake up and pray! LOL! I had this sense that the Lord was going to fill these slots and I looked forward to hearing from folks over the next days and weeks about how they woke up in the night and prayed for James. I expected He would wake *me* up to pray, but He didn't. I had a wonderful night of full sleep (James and Hannah did too!) I do not even remember my head hitting the pillow.

In this morning's e-mail, I learned from a sweet friend in Minnesota that her church's sister church, in a nearby larger town, has round the clock prayer. One hundred sixty eight hours a week, they have church members who come in for an hour of prayer around the clock! So this friend put a note in the chapel asking folks who were there to pray for James during their hour! Providentially, one of the people who prays early each Friday morning was Katie's and Hannah's piano teacher (and lover of our eggs and chickens) when we lived in Minnesota!

This morning, Hannah told me that when she was praying for James before "pray for James day", she prayed that lots of people would sign up. She said that even though all the slots weren't signed up for, '22 people is still a lot!'

Although I know that all of us are special to God, I believe that James is 'one of the least of these' that Jesus spoke about and that he has a special place in the Lord's heart. Sadly, people like James are easy to 'pass by' in this world. So for me, as his Momma, to see so many folks so willing to pray fervently for my little boy touches me deeply in a very special place in my heart and I am SO VERY grateful!

THANK YOU from the bottom of my heart and very depths of my soul!!! May our awesome and mighty Lord bless you 'real good'!

I guess I can't finish without telling you how James did yesterday and is doing today. In a word, GREAT!

We did have some normal doctor's office delays and there wasn't enough blood for his chemistries, so we had to get more and rerun the test. This delayed his spinal tap and chemo, which he ended up getting around 12:30. Everything related to the clinic went off with out a hitch and while we had to wait to do things, when we were done, it had all seemed 'too easy'. We were not able to see anyone from GI (some big miscommunication which we will need to work on for next time!), the Wound Ostomy Nurse came to see James and was pleased with his site, has a baseline for what it looked like on Thursday and said, 'call if ANY thing changes!'

Just before James got his spinal tap, he got versed (the happy juice) by g-tube. It wasn't too long before he was pretty relaxed and by the time Nurse Stacie was done with the spinal tap, James was sound asleep. Shortly after, Nurse Liz, who has been doing pediatric oncology nursing for 30-some years, came in to give James his vincristine with a butterfly needle. She was great and had no trouble getting the needle or the chemo in and we learned a lot about the history of treating pediatric cancer from our visit with her. While we don't look forward to more vincristine, we will appreciate the opportunity to learn more from Nurse Liz.

Dr. Keller said that his counts are TOO good (WBC 5.61; Hgb 11.2; Platelets 820K; ANC 4040). He is concerned that James may not be getting enough chemo to actually serve a purpose. So, Dr. Keller increased the dose of the same drug that he increased last time (mercaptopurine or 6 MP). If all continues to go well, Lord willing, we will do local counts and chemo at home in one week and three weeks and return to the clinic April 3rd!

Please do continue to keep James in your prayers. Funny thing about chemo is each kind has it's own purpose and wreaks it's own havoc in it's own time. Thanks for encouraging us and ministering to us by sharing this time of focused prayer for James!


Love, Stephanie

Flashes of hope

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

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

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

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

Love, Stephanie

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

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

The adventure continues

Today Vern, Hannah, James and I headed for Atlanta at about 0830 to be here for an 11oo show time in day surgery. The plan: to remove James' second failed port, replace it with a new double lumen Hickman and have a spinal tap, during which he would get the first part of his methotrexate. The rest of the plan included being admitted to the hospital to get the rest of his methotrexate and then flushing and hopefully, Lord willing, being home for supper on Friday night.

Just before James was supposed to leave for the OR, Dr. Keller came to see us--it was his first visit to the day surgery floor. He came to tell us that the whole hospital was so full that there was no bed for James for tonight. His preference was that we at least proceed with the port removal and Hickman insertion, but he gave us the option of delaying the chemo til next week or coming back tomorrow to be admitted (he is fairly confident there will be a room for us, because they expect to have five discharges tomorrow on the cancer center floor and James will have priority for a bed because his chemo would already be started).

At first, I thought that perhaps pushing out the chemo would be a good thing in terms of planning for other things going on at home. Then I found myself saying that we could stay but we needed a place to stay for the night, and we wanted to be able to continue with the normal protocol, just like we had been in the hospital in order to not delay James' chemo. That meant we needed to be able to give James his bicarbonate solution--either by g-tube or by IV-- so that he would be more likely to be ready for chemo in the morning. Dr. Keller thought that was a great idea and reiterated the importance of starting James' IV methotrexate within 24 hours of getting intrathecal (in the spinal fluid) methotrexate. He left to get the ball rolling with the social worker to find us a place to stay for the night.

I was truly impressed with how things came together. It seems that the Lord has had his hand on everything, causing it to work out for our good, even when things didn't seem so great. If I tried to explain all the good, it would take too much space and time, but I'll try to share a few.

The Ronald McDonald house was full, so we ended up staying at a nice motel just down the road from the hospital. We got their last room (paid for with funds from a special hospital account with donations solely for helping families like ours), which ended up having a kitchenette. In order to save funds and eat better, we had brought our own food from home, so we were able to easily fix and eat supper and take care of all James needed. It has been a quiet, restful evening (for the most part) and we are looking forward to retiring soon.

Because we were in the hotel, we had to use our feeding pump, which decided not to work. We ended up calling the company, which is local here, to see if they could help. They ended up bringing us the new, upgraded version of the pump and setting it for us to have a couple of extra helpful features. This was a wonderful bonus, which I realize not all will appreciate, but you'll have to trust me. :*)

By, hopefully being at the hospital one fewer night, that will be a little less lack of continuity in nursing care and more sanity care for mom.

I'm always glad to have more time with Vern--even when I have to share him!

There were some other amazing and encouraging things as well. While we are in the hospital, I hope to be able to share a little more of what is going on in the homesteading part of our big adventure.

In the mean time, sleep well.

Love, Stephanie

Bad, bad mom

James and Katie resting after the Momma-caused trauma.

This morning, when I got out of bed, I forgot that James' feeding line was laying across me. I don't know how or why I forgot, I think I was distracted. As soon as I stood up I realized I was tangled in the tube, which is like an IV line, and James cried.

Immediately I felt horrible and scooped him up in my arms, afraid to see what damage I might have caused. To my amazement and relief, he settled down pretty easily. I hoped it wasn't a big deal. Once he was settled down, I peeked, cautiously (remember, I don't do blood well). There were some things outside the dressing area that shouldn't be, but there was no blood.

Katie and I got ourselves together, sort of, and I called for the nurse. She is new to us, but I already like her. She checked his tube and called for a chest x-ray to check placement. Then she told me, very nicely, that she suspected it was out and would need to be replaced. I really felt terrible. Jennifer did tell me that the hardest part of taking the tube out was already past and that I shouldn't feel bad.

After the x-ray, I took James from Katie and the tube actually dropped to the floor.

The silver lining in all this is that James will get a different kind of central line--a port-a-cath--which will allow him to go swimming this summer (though only in a chlorinated pool--no lakes, streams, rivers, etc.--but he couldn't do those anyway with his g-tube.) It looks like they will be able to put the line in this afternoon. James is the first add-on after five scheduled procedures.

In the meantime, he will need an IV and we are looking forward to a visit from the home folks today.

Love, Stephanie

A busy hospital day

I was able to spend a good deal of time reading the protocol for James' leukemia treatment. The papers are in a technical shorthand and there is a good deal of supplemental information. Some of the pages are in a sort of chart form, indicating what treatments and tests or studies will (or should) take place each week. Since James has already completed his first four weeks, this starts with week five. The charts continue through week 130. For each page of the charts (there are seven) there is a corresponding page with more thorough information about how each drug will be dosed and what supportive care will be given. Following these pages, there is a page with a list of four years of checkups following the end of treatment (every month the first year; every other month the second year; every three months the third year; every four months the fourth year). Near the bottom of the page it says for 5-10 years following the end of treatment, have checkups every six to 12 months. The gut-getter is the line below that that says, "Studies to be obtained at relapse."

In addition to the 'roadmap' package, Dr. Keller gave me a 'consent' package too that includes pages listing each chemotherapy drug and its potential side effects by likelihood--likely, less likely and rare, but serious. We have already seen some of these side effects and part of the plan would be to work to minimize the negative side effects that could happen again. To be honest, reading all this stuff is enough to make me want to take James and just go home.

The package is daunting to me. Less so to Vern.

Dr. Keller came by late this afternoon after getting tied up in a conference call came to apologize and ask if I would be available tomorrow morning because he wants to thoroughly go over the whole package with me. Since I have no where more important to be, I'll be here :*).

To this point, the only alternative treatment available for childhood ALL is to do nothing. Or take James home and just take real good care of him--feeding him good food and building him up. Right now, we aren't sure we are comfortable with this approach either, but it bears some consideration.

The next thing to look into is complementary treatment or therapies that might help James better tolerate the chemotherapy he would be getting. This would include nutrition, whole foods, perhaps supplements and fresh air and sunshine. There isn't much in the way of known complementary therapies for childhood ALL either.

The social worker, Kris, spent some time with us today. She went over many programs that are available to children and families fighting childhood cancer through privately funded organizations. Some provide meals for families in the hospital, others reimburse mileage expenses, some provide funds for meals during hospital stays, a few provide some sort of recreational/vacation type opportunities for families or camp experiences for the children, siblings, or families. There is even an organization that takes personal information and preferences of the child with cancer and creates a song just for them.

Early this evening, we got word that James' rectal tube could be removed so we had a quiet little party and afterwards James sat up and played with toys for a while (pictures above--isn't it great to see him play!). It's amazing how much more he feels like doing things now.

Today at lunch and supper he was practically begging for food. Tonight the attending physician, Dr. Briones, checked in and asked how James was doing. I said he was HUNGRY, and wasn't there anything we could do to get the GI docs and the surgeons to talk and decide whether or not James could eat something. He said not til tomorrow. I said, nicely, that I thought that was not right to make a small child like James wait overnight simply because the docs couldn't figure out how to get together. He agreed and asked what James would eat and I said probably anything soft, but yogurt would suit very well. He said, well yogurt is good. Go ahead and just give him yogurt. So we did. And James was a happy little boy.

During our visit with Kris, it came up that we were particularly missing good yogurt and sunflower seeds. This evening, after her workout, she brought us some really good yogurt (which actually made it in time for James to eat it), sunflower seeds, trail mix, and a carrot cake for Katie's birthday, which is tomorrow. We are very blessed.

Good night. Love, Stephanie

The view

We have had some pretty incredible views over the past 40 or so days of being mostly in one hospital or another. You may remember that Owen and I had front row seats to the big storm in Duluth and the ensuing cleanup. We also had a nice view of Lake Superior, including sunrise over the lake. We had a room with a view of the Mississippi River complete with chunks of ice floating in it some of the time. And we had another room with a view of the older dormitory buildings on the campus and the University of Minnesota.

Now that we are in Georgia, we have a new view:

Please don't misunderstand. I am truly not complaining. The room is great in many ways. It is not so close to the nurses station, so it is much quieter. It is larger than most of the other rooms and it has great storage. It has a better bed for the other 'adult' that stays with us. It is private and has it's own bath, which we are welcomed to use. It has WiFi and we can be right in the room with James (and each other) and use the computer for all sorts of things, without tying up the phone line!

Love, Stephanie

Easter at our place

While we didn't get to do our usual Resurrection activities (which also include a family celebration of Passover), we did get to be together as a family over the Easter weekend. Through a generous gift from the Leukemia Lymphoma Society (I think), Vern, Hannah, Owen, Rebecca and Carrie stayed at a nearby hotel Saturday evening. Katie stayed at the hospital with James and me.

On Saturday, we watched an old movie called "The Happiest Millionaire".

We enjoyed singing hymns together. The nurse enjoyed it too--she kept making excuses to come back into the room to listen. And Vern read the John's account of the resurrection.

In the afternoon Sunday, my folks drove down from northern GA/North Carolina and we enjoyed a visit with them. Vern and my dad went to a nearby greek restaurant and brought back some deelicious food. (Thanks Dad... and Mom!)

We do normally have special things we like to do around this time of year. Hopefully we will still be able to do some of them. But, we remember

the mind of a man plans his way, but the Lord directs his steps.

Family traditions are a wonderful thing, and I hope to one day do a series on ours, but God trumps.

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.

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

A very good weekend

James has had two very good days and we are very, very grateful. Somehow the weekend just filled itself up with good things and I didn't have much opportunity get on the computer.

Saturday morning, Dr. Wiermaa came in to check on him. When she asked how he had done Friday, I told her about the diarrhea and how he had such a hard miserable time in the afternoon. I described his behavior as being 'like an angry violent teen-age boy in a tiny little boy's body". She just turned to me and said, "Steroids." Then she went on to explain how steroids can sometimes change personalities. She did say that it doesn't last, but that sometimes it can by very hard in the midst of it. She also said that people on steroids tend to need less sleep and that, at some point, they also have an increased appetite (we haven't seen this one yet!). In addition to this, James' discomfort from other aspects of his treatment could make the personality change bigger than it would otherwise be. That seems to explain what happened to James on Friday--the discomfort from all the treatment issues, especially stomach-cramping with diarrhea, pushed him beyond his pain limits and instead of being weepy and crying, like he has in the past when he was in pain, he got angry and aggressive. Please continue to pray for us to have wisdom to help James stay comfortable. Your prayers this weekend sure seem to have made a big difference and we are learning a lot about how we can help him over the coming weeks and months--we just need what we've learned (and more) to come to mind when we need it!

By Saturday, the area seemed to be pretty well dug out from the storm (although there are still HUGE mounds of snow pushed off to the sides of roads and sidewalks). James was taking a good afternoon nap and Owen and went for a walk OUTSIDE!!! in the SUNSHINE!!! We went about three blocks to a nearby Whole Foods Co-op where we picked up a sandwich and some salad bar stuff to share for lunch.

After a late lunch, we moved from the PICU to the regular pediatric floor. They actually have designated "chemo" rooms which have some special features, like private bathrooms. In our room, James has a hospital crib (sometimes we call it the baby jail, because it has a top and the sides can go all the way up to keep him safe inside), I have a regular hospital bed which is very multi purpose (of course I can sleep on it flat--it is actually quite comfortable-- and we can prop it up part way (great for snuggling James when he is needy) or all the way when we pile in to watch TV. Owen also raised the bed to full height for a better view looking out the window!

When we were moved to our new room, James and I went in style, riding in the hospital bed!!! Owen was going to take a picture of us coming around the corner, but he decided it would be more fun to follow along and count points for the nurses for each time they bumped in to something with the bed! By the time we got to our new room, we were joking with the nurses, asking if this was St. ****'s Spa and ChemoTherapy :*). I'd rather laugh at the days to come than fear them.

Once James was settled in for the night and Owen and I had arranged everything we could, we snuggled on the multi-purpose hospital bed and watched an old Erol Flynn WWII flick. We called it 'history' (note to self: check to see if it was based on a true story).

Saturday night wasn't quite as easy as Friday night. It certainly wasn't bad. James woke up a few times, just needing Momma and that was okay. The third time (of three) we sat in the rocker in our new room, opened the drapes and really watched the sun rise over Lake Superior! Beautiful! Then we thanked God for the clouds as the sun rose a little higher and the daylight dimmed a little, closed the drapes and climbed back in to bed!

One of the times I was up with James, his nurse came in to let me know that his lab results had come back and his White Blood Count was below 2 and we had to treat James extra carefully because he is now at greater risk for infection. People coming in to his room need to take extra precautions if they have or have been exposed to illness. We need to keep his door closed. The air system in his room has been switched to positive pressure so that the air flows pushes out most of the bad germs. And we need to be careful about what comes in to his room.

Sunday morning was a little slow going, simply because of the late night (due to the history lesson) and three times up with James. We almost got going in time for the family to arrive. The whole gang came together and I think the nurses were a little concerned with how full James' room became!

We had a wonderful time together and some of us picnicked on a sloppy joe feast provided by a special friend. We shared stories and food and just enjoyed being together. Back in James' room (he couldn't leave, so Hannah stayed with him), we sang some hymns together and James clapped along with the appropriate songs. It was a special treat to see him enjoy the music he has likely been missing very much.

After a little more close family time, Vern headed out with most of the children--leaving Hannah behind to help this week. On the way down with the children and some of the things we were sending home, we ran into other special friends who were coming to visit! They brought sweet encouragement and fresh fruit and apple juice!

Once we got all settled again, Hannah and I put together a little CD player for James, since we now had batteries to run it. Now that the music is playing, James is having a great time in his crib listening to it! We also enjoyed some delicious broccoli cheese soup from yet another friend.

We have so much to be thankful for!!

Love, Stephanie

Silver Lining

In this post, I shared how we are seeing the Lord provide for us in special personal ways. There have been other silver linings, too, and I hope to chronicle some of them.

When we left home for Duluth initially, we thought we were racing a big storm. We ended up getting here in plenty of time. This has proven a good place to be in the storm. Up on the eighth floor we had a better view of the city and even with all the blowing snow, we could see some lights most of the time. During the brief time we couldn't, we were treated to an awesome lightning display that would briefly turn the sky pink! Once the snow stopped last night, we could look out from our towering window and see a wonderland that most won't get to see. We never had any trouble being warm, dry or fed. This morning we had front row seats to watch some of the snow plowing efforts.

Love, Stephanie