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

Sunday, April 29, 2007

Audience Participation Requested

Today I unintentionally viewed our profile and I noticed that nearly 81 people have viewed it (I'm sure there have been duplicates) . Wow! I know that's not much in the blogosphere, but it seems like a lot to me!

My guess is that not all of you who read here have read the profile and that most of you are (gasp) lurkers! :*).. It's really okay. I lurked for a long time before I ever commented on a blog. At the time, I felt like I didn't express myself very well in such a limited space, so I lurked for a while longer before I commented again. There are still blogs that encourage me and I don't feel I have anything to offer, so I just lurk even now.

I feel a little more free to comment now that I have a blog--if people are interested, they can learn more about the strange person who commented on their blog and get a better picture. I also realize now how encouraging it is to blog and have folks comment.

So far, I haven't been very good at responding to comments. I am trying to remedy that. I am hoping that James' journey with leukemia will get a little less bumpy (no guarantees) and that we'll be able to focus on some other kinds of posts--like homesteading, thoughts on the Christian life, our family... I would also like to find a way to list an e-mail address without worrying about spam--we already get enough!

My request to you today is to ask you to comment. It doesn't have to be long or deep, but I would love to know who reads here and how you came to read here, if you don't know us. If you have a blog or a website of some kind, please leave us your address. I won't encourage you to leave e-mail addresses to post because of the spam issues. So, please, pretty please, with sugar on top, click on the comments link below and leave your name... and how you found out about us.

Thanks in advance. I hope to do more of these in the future, but thought this would be a good intro.

Love, Stephanie

Looks like I was wrong

But this would be a great thing to be wrong about!

James has been up to full g-tube feeding rate (40ccs per hour) for about three hours now. His TPN has been turned off for about two hours. James is doing great.

The GI docs and I were concerned that the ileostomy would make no difference in James stomache motility (how quickly things move through). The surgeons and oncologists were hopeful that this would fix everything.

Of course, the real test will be once James has future doses of Vincristine.

Please pray that I was and am wrong. :*)

Two months

Yesterday was two months from James' diagnosis. During those two months, we have been in one hospital or another for all by three days. For those who are wondering, this is NOT typical of most children diagnosed with Acute Lymphoblastic Leukemia (ALL). Just this week, we met a little girl named Kate who just got her ALL diagnosis. She is going home today. However, James is, well, James is James and he just likes to keep us all on our toes!

Today, James is getting formula through his g-tube at 35 ccs per hour. The goal to meet his calorie needs is 40 ccs per hour, which we should hit today around 2 p.m. An hour later he will be off his TPN.

He is also being weaned off Dilaudid (which he has been on for pain since his ileostomy) He probably doesn't need it anymore, but it must be cut back very slowly to avoid withdrawal symptoms.

After midnight, James can have nothing by mouth (NPO) to prepare for sedation for a Lumbar Puncture (LP) tomorrow at around 9 a.m. During the LP, he will get methotrexate and then he will get more by IV over a 24 hour period. James will then be monitored regularly after the IV is done until the methotrexate in his blood gets down to an acceptable level.

In the meantime, he will need to keep feeding. I am not sure what the exact plan is, but I am hoping that James will get to eat food and have bolus formula feedings during the day in order to encourage him to eat, then get formula at night to supplement.

IF the discharge nurse and the team here can figure something out for James' home care AND he does well with feeds and the methotrexate, there is a possibility we could go HOME on Thursday. Need I say I am VERY excited about this possibility. We will have to be back here next Monday (not sure if in the hospital or just in the clinic) for his Vincristine (the chemo drug we all believe has caused the bulk of James issues over the past two months).

Please pray:
  1. that James will continue tolerating his tube feeding increases well.
  2. that he will come off the pain medication with no trouble.
  3. that the methotrexate will fight any leukemia cells, but not harm James or give him any side effects.
  4. that the nurses CAN figure out a way to handle James' home health care so we can go home.

Thanks for checking on us! We love hearing from you. Please leave us a comment or e-mail us at our regular address (if you don't have it, post a comment with your e-mail (it won't show up, I promise) and I will e-mail you.

Love, Stephanie

Nan, so glad you had a nice birthday.

Ann, hope your computer is up and running soon. I miss hearing from you. Hope Kelsey and the baby are doing well.

Friday, April 27, 2007

No news is good news

At least most of the time. Usually when I can't get a post up, it means we are busy in a good way, or that there is nothing new to report. Occasionally, it will be a delay for me to wrap my brain around what is going on so I can report on it. I PROMISE, if things get BAD, we will make a way to post so you can know that we need extra prayers.

We do covet your prayers and appreciate you checking up on us and James. Thank you for all your thought prayers and good wishes.

Thursday, we enjoyed a visit from my mom and aunt. We ate lunch together in the garden, and when James warned us that he was getting drops of rain on his almost-bare head, we moved to shelter just in time to avoid a real downpour.

Love, Stephanie

Family time

James improvement has been so great, we have been out and about, exploring the hospital. Yesterday we discovered the library. I had also been having some trouble with the laptop, but Vern, my hero, worked some of his computer magic and now it seems to be working much better (read: it hasn't dumped all my 'hard work').

The main Skelly clan came up today for some family time. Courtesy of the Cancer Center, they have a motel room nearby (we don't fit in a room at Ronald McDonald house). We are very grateful for the time to be together.

The weather was phenomenal today and we spent a good bit of time outside.

We even got all together on the same side of the camera. No easy feat for this crowd!
Just the children: Carrie, 4; Hannah, 13 (and a half); Owen, 11; Katie, 15 holding James, 2; and Becca, 7.

The still-happy couple. Dr. Keller said the other that he generally sees two results in families who experience childhood cancer. They either deepen their faith and their 'life/family mission' and their relationships with one another and their god, or they fall apart. By God's grace, we deeply desire to remain in the first category. We believe the Lord is honoring that desire. Please pray for us as the Lord brings us to mind.
James' social worker, Kris, who took the photos of our family, has given us an excellent beginning here at Egleston's. She is leaving for London with her husband in another month. Today was her last day here. We will definitely miss her (though she has left us in good hands). I'm sure Kris would like me to tell you that a couple of weeks before we met her, she shaved her head for a fundraiser to help raise money for children with cancer.

We're looking forward to another special family day together tomorrow. It blesses this Momma's heart to see James' eyes light up at the sight of his sisters, his brother and his daddy.

Love, Stephanie

Tuesday, April 24, 2007

My, how time flies

I can't believe it's been four days since we posted anything. I'm sorry if we caused you to worry.

Friday night was a difficult time for pain management. (note to self: when no one will listen, insist they call the physician on call at home, no matter what time it is). Saturday was a nice family day. Vern came up for the day with the children. My mom and dad came down for the morning. The visits were very nice, but overshadowed by James' pain which still wasn't being fully managed--although we were working on it and making a little bit of progress. Vern took Katie home and left Hannah to help. I miss Katie, but am glad for the time with Hannah. This has been a great opportunity for her to examine more closely her interest in nursing.

By Saturday night we made a couple of pain management leaps, which helped. On Sunday we think we finally figured it out. That helped a lot, but the delay in managing James' pain resulted in a nasty rash on his back and some constriction in his lungs. He had some nebulizer treatments, but sitting up and moving around seemed to have helped a great deal. The doctors aren't exactly sure what the rash is, but yeast is suspected and so he is getting an anti fungal for this.

By Sunday morning, he was already passing gas and waste (it's more liquid than normal stool) into his new ileostomy bag. Monday morning we tried a little bit of pedialyte into his g-tube. His belly got firm again--but just up top (if that makes sense). We stopped the feeds and I heard this morning they may try again today. The oncology doctors and the surgeons are hopeful that with his colon now resting and things emptying out that his stomach will start working again. Although I don't share their optimism, I surely hope they are right!

Monday morning I woke up and thought for sure it was Sunday. With James' pain better controlled, we were able to get him out of bed to snuggle and play a little. He was pretty need-y. At bedtime, we decided it was time to switch back to one hospital bed. (I never did get a picture, but we had a hospital bed up at full height next to a hospital crib. One of the nurses suggested it since she had noticed that James finds a great deal of comfort in snuggling either with me or one of his sisters.) We were thrilled to claim the extra space back. The room seems much bigger again.

Kris, James' social worker, is trying to get another motel room for Friday night so Vern and the children can come and spend some more family time with us. We are looking forward to more time together. I hope, by then, James will no longer need his pain meds so we can really enjoy the time together. Another case worker is looking for aid that would cover James' at home medical needs until his medical assistance is approved.

Please pray that James' rash will clear up quickly, that he will recover fully from his surgery, that his stomach will begin to move things out of it on his own.

I will try to get some photos up soon.

Love, Stephanie

Friday, April 20, 2007

The end of a long hospital day

James made it back up to us around 4:30 and we very gingerly moved him from the gurney to my lap in the rocking chair. It took him a little while to settle down and nearly right away he signed that he wanted to nurse. I can't let him nurse, though, because we have to keep his little belly totally empty until he starts to move things through. We will know when this occurs because he will begin to have air in his ileostomy bag. That could take up to a week to happen and hopefully by then, everything will be well healed. In the meantime, he will continue to get the TPN.

At about 8:00 p.m., our new nurse came in. She got James a crib, so he could sleep alone and we wouldn't have to worry about bumping him. She moved him into the crib for me--I am a wimp about moving James after surgery..especially abdominal surgery (this is James' eighth surgery--five of which were abdominal surgeries). It took him a little while to settle down again, but now he is resting very peacefully. The nurse will keep his morphine up every two hours all night long in the hopes that he won't have too much break through pain. If you wake up tonight, please pray that James will sleep peacefully and not have pain.

Once James was settled in his crib, we asked the nurse if there was any other option for getting food in the hospital--we are thoroughly tired of hospital fare. She told us about the hospital's best kept secret. Each night, between 9 and 11, some dear soul caters food--sandwiches, salads, fruit and pizza. Katie went down to get us something for a late supper. It was a welcome change.

Tomorrow we are looking forward to a visit from the family--it's a two hour drive for them. My folks will also come down for a visit (it's a different two hour drive for them). Hannah will stay and Katie will get to go home for a change of pace and scenery. We have had a very good two weeks together and I am grateful to have had to help and her company. As an aside, when Katie joined me here, she was 14. She'll be going home as a 15-year-old. Talk about time flying! She is growing up to be a wonderful young lady and I am very proud of her. I hope to be just like her when I grow up!

Y'all have a good night, now. Love, Stephanie

Surgery's over

Dr. Parker just came by a little after 4 p.m. He said everything went great. He is very hopeful that it should work and we should hear back on the biopsies Monday or Tuesday. While he was in there, he went ahead and took out James' appendix, since they believe it is no longer needed. It would be a big mess, he said, if James were to get appendicitis during chemo. No doubt.

We hope to see him in the next half hour.

Love, Stephanie

Happy juice and dancing flowers

"The call" for James came around 12:30.

His nurse, Crystal came in to give him versed, otherwise known as 'happy juice'. It wasn't long before James was pretty happy. He forgot he had been wanting to nurse and was waving and smiling. A sweet, goofy, drunk sort of smile. He bobbed and weaved a little and nearly fell backwards out of my arms before I realized just how relaxed he was.

Once we were downstairs, James enjoyed the dancing and singing flowers again and Katie got a few pictures.

Rumors and rules

Update: I checked with the resident and she said that the 'call' was just to see if James would be ready to go if they called for him. But we are still waiting for 'the call." Pray it comes soon. S

Rumor has it that surgery has called up for James and we expect to be going down soon. In addition to the ileostomy, they will be taken some tissue from James' colon to biopsy. The pathologist will check to be sure that there are no segments of James' colon that are aganglionic (without nerve cells) in order to rule out addtional areas of Hirschsprung's disease.

We expect the whole procedure to take from 2.5-3.5 hours from the time we hand James over to the anesthesiologists.

Unfortunately, some things happen recently at another hospital that has caused most hospitals to choose to no longer allow parents in to the OR for the sedation/anesthesia process. It's the ol' 'one bad apple' deal. I have treasured the times I have been able to go in with J bames, love on him as he goes to sleep and sing to him and pray for him and the OR staff while I'm in there. I'll miss that.

As the Lord brings James to mind, please pray for him and the folks doing his surgery (the surgeon is Dr. Parker, but there are many others providing support). Please pray, too, for an easy recovery for James.

Love, Stephanie

Thursday, April 19, 2007

The short and long of it

The oncologists, surgeons and GI docs got together after seeing the results from his contrast enema. The consensus is that James needs an ileostomy. The plan is for this to happen tomorrow. James will be an add-on, but we are hopeful it won't be too terribly late before he goes for surgery--that would be a good thing to pray about.

I had a really good conversation with Dr. Iffie this afternoon. I told her that if when we came to the hospital and were told 'Plan on living here for the next eight months', we could live with it and make it work. (As an aside, children who have the other kind of childhood leukemia--AML--do stay for about eight months.) But, we can't deal very well with this three more days, oh, one more week, oh wait, we have to fix this, oh, four more days.... She was very understanding and said she couldn't deal with that either.

Then she laid it all out on the line for me. She said we should plan to be here for at least another two weeks. Then she explained that because James will need so much care at home--medications, supplies, special formula (possibly), medical equipment, etc.--he will have to have a home health care agency to look after him, do home visits and provide supplies and equipment. No home health care agency will touch us until James has medical coverage, but the hospital can keep him and continue his care. (We actually heard this in Minnesota too, just before we left) Once James' Medicaid is approved, the hospital can bill for previously provided services. The home health care company cannot do this. Essentially, James will need to be in the hospital until his Medicaid is approved. Knowing this is actually a relief. Not because we want to stay in the hospital, but because we kind of suspected this would be a longer stay than many were anticipating. Now we can plan with a more realisitic perspective.

After Dr. Iffie's visit, we enjoyed our own visit to the garden. James waved to the little boy with the trumpet.

Love, Stephanie

Our address

A while back, Mary asked for an address to send cards to James. I got the address from the nurses finally, but then felt uneasy publishing them on the blog. Vern agreed and suggested this option:

If you would like to send something to James (or think you would), use the comment link below and make a comment. Include your e-mail address (which I absolutely promise not to publish, since I don't want to publish my own e-mail address!) and let me know you want the address. I'll be happy to e-mail the address to you...and don't want you to feel obligated to send something just because you asked for the address.

If you comment and need me to e-mail you, please include your address, because I probably don't have it here.

Thanks for your prayers, love, support and concern about us.

Love, Stephanie

Whiney mommy

Yesterday, I whined.

We got a new oncologist on the floor, Dr. Iffie, who is from Nigeria. She took my whining in the spirit in which it was intended and things started moving. The surgeon came by to chat about the possibility of James needing a colostomy to get him through chemo. This was something Vern and I had already realized was a possibility and so we are prepared for the idea, if those that know, believe it would help.

Last evening, James had a contrast enema which showed that he has no strictures. This is a good thing and means that James' surgeon in Minnesota was able to remove all the colon affected by Hirschsprung's disease. The enema part was also effective in cleaning James out to some degree.

Today we are waiting to hear the consensus between the oncologists, the surgeon and the GI docs. My goal is to get James up to snuff and go home as soon as we can. There is plenty we are needed for there--not the least of which is giving lots of hugs--and we will have plenty more opportunities to be here in the future.

Please pray for wisdom as we consider the decisions that need to be made.

Love, Stephanie

Wednesday, April 18, 2007

In the Garden

Here are some photos of our garden visit yesterday for lunch.

Tuesday, April 17, 2007

Little victories

We took James down to the garden and enjoyed lunch in the fresh air and shade. It wasn't quite as quiet as yesterday (there is construction nearby on a new wing of Children's hospital). I'll try to post a few pictures later.

After a little rest, James had a small victory. In the hospital world we have to quantify things so there is a smear, small, medium, large and extra large. Of course, most are relative to the size of the patient. James' was smear. But it is a clear indicator that there isn't any complete blockage prevent the passing of things, so we are now clear to proceed with yogurt and milk through his g-tube. He got his first feeding of 10 cc s (about 2 teaspoons) and will continue to get 10 cc s each hour until he either doesn't tolerate it or he does fine for about 8 hours and we bump his feed up. I'm not sure to how much just yet.

So please pray with us:

1. that James will have more victories--preferably larger than smears :*).
2. that James will tolerate his yogurt boluses and we will be able to continue on.

Love, Stephanie

Today's important prayer request

It seems that James' theme during chemo is going to be "pray for poop". That would be a good thing to pray for today. And probably every day from now on, because it isn't going to get any easier than it has been.

Today we are waiting for some sign of things moving--even a 'smear'. Then we will proceed with feeding through James' tube (starting with yogurt and milk) as long as his belly doesn't get hard. If it does, surgery will have to give him some relief with the rectal tube again. Otherwise, we'll just press on with feeding and then maybe we will get to go home. Which sounds like a great idea.

In the meantime, we're thinking about lunch in the garden again today-- with James.

Love, Stephanie

Monday, April 16, 2007

Fresh air and sunshine

While James was in surgery yesterday, Katie and I thought it would be really nice to get outside for a bit. It was a beautiful sunny day here. In fact, I would say that April and October are generally Georgia's best kept secrets. At any rate, I told James' nurse we planned to eat outside and she suggested we go to the garden. So we did. It is a lovely, quiet, private place with access from the outside only to people with security badges. It is also someplace we can take James whenever he is stable.

We are looking forward to taking him.
Here are some pictures for you to enjoy in the meantime.

Love, Stephanie

James likes the sounds of brass. We're not sure he knows what a horn looks like though.
Love those purple Johnny jump ups.

Lots of pansies--one of Georgia's winter flowers.

Katie especially liked the climbing vines.
Lunch on a bench in the sun. In April. It doesn't get much better!

The amazing thing was how MUCH new growth there already is on the bushes!

We have a porta-cath

Sunday was a pretty relaxing day for the Skelly hospital detachment. We enjoyed a visit from my dad, who thoroughly enjoyed playing James' version of catch. The main Skelly crew had a two-hour power outage in the morning and another seven-hour outage in the evening. There's a little motivation to keep some more emergency water on hand :*).

It wasn't until 2:45 that they took James into surgery to insert his porta-cath. He finally came back up to us at around 5:00. At the moment I am not real thrilled with the porta-cath, but I hope I'll adjust over time. Katie suggested that we will like it much more at home and less in the hospital. At this point, I would tend to agree. James' nurse, Maggie, brought up a 'dummy' and showed us how the whole thing works, so that does help. Right now, for those of you who might understand, the access is oriented to go up and over his back. I think I may like it better when it comes down in front instead. But that is a week away--unless we are able to go home first.

Love, Stephanie

Sunday, April 15, 2007

Various and sundry news items

A taste of home

We had a great visit with the home folks. Lots of snuggling, as always. We watched another Fred McMurray movie--Follow Me, Boys. I thought it was a great family movie. James thought so too. He laughed and laughed. The children enjoyed 'riding the bed' a few times (til mean ol' mom put the kibosh on that one :*) ). Vern and I were able to make a quick run to the nearby Whole Foods Market, where we picked up some good quality yogurt and milk for James. While we were out, it began to rain. It was a gentle, warm rain. The likes of which we hadn't experienced in seven years or so. It is good to be 'home'. We also noticed that the architecture and landscaping here are different--and we like it. I kept telling Vern I should have brought the camera to take pictures of all the lovely flowers and and trees. But I had left it in the room. It's okay, we'll be back.

On the way up, the home contingent picked up a couple of toys that James could play with here. He sure enjoyed them and I think he will get a lot of good playtime with them. They also brought up a Mr. Fixit Bible Adventures DVD we ordered from Timberdoodle during their 'damaged book sale in February. It was worth it! There are 12 episodes on one DVD and they are captivating to James (and the other children) who aren't used to a lot of excessively fast-paced, flashy programs. Last night, Katie, James and I watched the whole DVD. I'm guessing we'll do it again.

No porta-cath yet
James had to get an IV placed in his leg yesterday since I pulled out his Hickman. It took four big people (three nurses, plus Katie) to hold that strong little boy down :*). He wiggled just enough to foil the first IV, but Leah got it on the second try. Since James was an add-on for his surgery yesterday, he ended up getting bumped by more important cases. He was moved to Monday, but, as I understand it, is still and add-on. Please pray they would be able to get his porta-cath in Monday. Until they get it in, he has to be 'stuck' for his every-morning lab draws. And that is no fun for anyone.

James' nurse yesterday, Dr. Keller and the fellow for this weekend.

The heavy medical stuff

We also sat down with Dr. Keller. He went over the road map with both of us and Vern was able to ask all his questions and here the answers for himself. We talked a lot about James' fragility and how easy the drug toxicity affects him. We appreciate Dr. Keller's sensitivity to James and the fact that he realizes and is wide open to the fact that there may need to be some adjustments to James' treatment depending how he handles certain aspects of it. While Dr. Keller does say he can't recommend any particular complimentary treatment options, he is in favor of lots of good healthy food for James--of course, we are too. Vern felt comfortable enough that he went ahead and signed the consent forms. While I am not sure I could have made that decision on my own, I support Vern fully and will be doing all I can to support Vern by helping James handle the treatment and get lots of appropriate good things to build him up.

The other thing we talked with Dr. Keller about is James' feeding/pooping issues. This is really important because we all believe that the bulk of James' problems with the chemo are due to the toxicity issues he has with a drug called vincristine. It is very likely that James already had these underlying issues, but that we were able to keep them under control by serving him plenty of good yogurt to keep lots of healthy flora in his system as well as regular prune juice to keep things moving along. However, the vincristine throws the balance further out of whack as it attacks the nerves of the intestinal track almost as well as it attacks the leukemia cells. In most normal children, this causes constipation. In James, it seems to come closer to an intestinal shutdown. The treatment protocol we have chosen for James is a slightly older protocol that uses less vincristine than current protocols, but it still calls for vincristine and we are all concerned about how James will handle this.

In the meantime, we need to get in place a 'rescue protocol' that will help James keep moving things through so we can nourish his little body and keep him hydrated now and later on. So we would ask you to please keep praying for wisdom to sort this out and find something that works for James and for James to poop regularly. I know in my heart that God cares very much about this little 'unmentionable' item in James'.
James will start on his roadmap tonight.
If the porta-cath goes in tomorrow, and we can come up with a plan to keep James hydrated independent of his IV fluids, we might be able to go home on Wednesday, Lord willing.

Love, Stephanie

Saturday, April 14, 2007

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

Another little setback and some sweet photos

James talked to Daddy on the phone. Then he wanted to practice some more.
Is he smiling for the phone or the camera?
[Insert your own appropriate caption here]
Yesterday (Friday) we tried starting James on formula. His belly started to get a little distended, though it remains pretty soft. The docs decided to stop his feeds. At this point, I think they are pretty concerned about a recurrence of last weekend. That is good. We do not want to repeat that!
While stopping feeds is a little bit of a set back, it gave me more time to think about this whole situation and consider things I have learned and know about James that would help the doctors.
Late last night, at just the right time, one of the surgical residents stopped by at just the right time and I took the opportunity to share my thoughts with her. She thought they had merit and passed them up to her fellow, who thought that it was a good idea. So they are recommending that we get James back on erythromycin as a motility drug, along with miralax morning and evening. I am hoping things will start working for James by Sunday night.
In the meantime, I am working on my own recommendations for getting James back to eating.
Please pray that things will start working and that if this is the wrong thing, the Lord would make it clear early on and He would show us the right thing to do. Please pray, too, for wisdom in putting together my proposed plan for James' eating and in presenting it and for wisdom for those making the decisions.
Love, Stephanie

Thursday, April 12, 2007

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


This morning Dr. Keller came by and brought a small stack of papers for me to study. It's the proposed treatment plan for James which has been prepared with the consultation of many oncologists--here, in Minnesota, Colorado and Texas.

My mission for this morning is to carefully read the plan, talk with Vern about it and come up with questions in preparation for meeting with Dr. Keller this afternoon.

James is sitting sweetly with Katie watching lots of silly old television shows. His numbers (white blood cells, hemoglobin, Neutrpophils-which indicate the bodies ability to fight off infection and platelets are the best they've been since this whole thing began February 28.

Please pray for wisdom and insight as we look at the treatment plan for James.

Love, Stephanie

Wednesday, April 11, 2007

Moving right along

James continues to improve here. He hasn't needed any pain meds since early Tuesday morning. His personality is beginning to shine again, which is always encouraging. He selectively waves good-bye to some of his nurses and doctors, which just makes their day. He is getting feisty when we (or the nurses or techs) have to do things he doesn't like. This evening he was playing with the lumens from his central line, kind of flipping one of them from side to side like a little rope. He even smiled for the camera!

This morning James had to be NPO (nothing by mouth), including breastfeeding, from about 7 a.m. until 11:30, when he was scheduled for a HIDA scan. This scan checks for gallbladder function using some incredible 3-D imaging technology. The initial scan took about 45 minutes, then we had to go back downstairs for one more picture around 3:30 p.m. The preliminary results say that his gallbladder is functioning as it should. It was certainly less stressful on all of us to have Katie here to help with James during the time he couldn't nurse.

Even earlier this morning, James had another x-ray to see if he still has air in his belly. We had hoped this would show that things have emptied enough so the tube could be removed. We haven't actually heard back the results of the x-ray, but James still has his tube. I will be asking some more questions about that tomorrow during rounds. The hard part is that the surgeons (the responsible folks I need to ask these questions of), come very early in the morning for their rounds.

We missed the physical therapist today (she came twice--both times we were downstairs for James' scans). She is supposed to come by again tomorrow and I think James will be ready for some activity.

During James' scan, Katie and I checked out the gift shop, the eating area, the chapel, the little aquarium and the cafeteria. We decided that the cafeteria has much better food selections than the hospital room menu. Why is it that the sick people have to eat the worst food? At the gift shop, we picked up a little box of Tide so we could do laundry and now we have clean clothes.

I hope to hae some idea tomorrow of what milestones we need to reach in order to take James home.

With James feeling better, it's a little easier to get some good photos to post, so without further ado..

James snuggled with Katie during some of the easier time of waiting for his scan while watching whales on the TV.
After catching up with nursing, James has a nice smile for the camera.

From the home folks--Vern has a list running and is adding to and crossing off, feeling like he is getting a handle on things there.

Thanks for checking up on us.

Love, Stephanie

Moving right along

James continues to improve here. He hasn't needed any pain meds since early Tuesday morning. His personality is beginning to shine again, which is always encouraging. He selectively waves good-bye to some of his nurses and doctors, which just makes their day. He is getting feisty when we (or the nurses or techs) have to do things he doesn't like. This evening he was playing with the lumens from his central line, kind of flipping one of them from side to side like a little rope. He even smiled for the camera!

This morning James had to be NPO (nothing by mouth), including breastfeeding, from about 7 a.m. until 11:30, when he was scheduled for a HIDA scan. This scan checks for gallbladder function using some incredible 3-D imaging technology. The initial scan took about 45 minutes, then we had to go back downstairs for one more picture around 3:30 p.m. The preliminary results say that his gallbladder is functioning as it should. It was certainly less stressful on all of us to have Katie here to help with James during the time he couldn't nurse.

Even earlier this morning, James had another x-ray to see if he still has air in his belly. We had hoped this would show that things have emptied enough so the tube could be removed. We haven't actually heard back the results of the x-ray, but James still has his tube. I will be asking some more questions about that tomorrow during rounds. The hard part is that the surgeons (the responsible folks I need to ask these questions of), come very early in the morning for their rounds.

We missed the physical therapist today (she came twice--both times we were downstairs for James' scans). She is supposed to come by again tomorrow and I think James will be ready for some activity.

During James' scan, Katie and I checked out the gift shop, the eating area, the chapel, the little aquarium and the cafeteria. We decided that the cafeteria has much better food selections than the hospital room menu. Why is it that the sick people have to eat the worst food? At the gift shop, we picked up a little box of Tide so we could do laundry and now we have clean clothes.

I hope to hae some idea tomorrow of what milestones we need to reach in order to take James home.

With James feeling better, it's a little easier to get some good photos to post, so without further ado..

James snuggled with Katie during some of the easier time of waiting for his scan while watching whales on the TV.
After catching up with nursing, James has a nice smile for the camera.

From the home folks--Vern has a list running and is adding to and crossing off, feeling like he is getting a handle on things there.

Thanks for checking up on us.

Love, Stephanie

Tuesday, April 10, 2007

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

Looking for a road map

James is quite the popular little guy in the pediatric oncology community these days. There has been a good bit of discussion about his situation and his recommended treatment between the folks here, in Minnesota and at the Children's Oncology Group (COG). The doctors who managed his care in Minnesota have weighed in with a "Minnesota Position". Essentially, what they would recommend for James' care if he were still in Minnesota. Then there was a big discussion about what the COG recommended. Dr. Keller said, "The e-mails were flying." Pretty much all weekend.

It seems there is a good bit of consensus now. My understanding is that Dr. Keller hopes to use an older protocol from the late 1990s-early 2000s. It uses drugs that aren't quite so potent as the vincristine against the intestinal tract. Initially, there was some discussion about James potentially needing radiation to the brain in addition to his chemotherapy. Considering James' age and Down syndrome, all involved agree that the risks of this are far greater than the potential benefits. Instead, James will get extra treatments of methotrexate, which is known for its ability to attack leukemia cells in the central nervous system.

As of yesterday, Dr. Keller was waiting to hear from the doctor who directed the studies on the protocols in question to see if there was anything she knew of that might contraindicate using this protocol for James. At this point, all are primarily concerned with giving James' body a chance to heal.

The surgeon who placed James tube came by today to talk about establishing a protocol to help protect James from future outbreaks of enterocolitis during the rest of his chemotherapy. It seems reasonable enough and includes a couple of things to do before each round of chemo, both of which can likely be done at home.

Please continue to pray for wisdom for James' doctors and their 'counselors' as they come up with a plan for James.

Love, Stephanie


With James' potassium back on track and ruling out the teflitis yesterday, the GI team got involved again and they brought the surgical folks with them. They all came by to see James and ask me some questions about James' history. The information they gathered comfirmed their suspicions that James' problems are caused by enterocolitis, which is very common in children who have had Hirschsprung's disease.

Enterocolitis is essentially an inflammation of the lining of the bowel that causes the sphincter muscle to tighten up, retaining stool in the colon, destroying the lining and allowing infection to fester and attack the colon walls. If left untreated the results can be devastating--the colon can burst causing all this infectious fluid to spread throughout James' little body. If he survived that, clean up would surely be an incredible challenge. Somehow, no one is exactly sure how, a history of Hirschsprung's disease seems to predispose many children to enterocolitis. In other words, some of this is just in James' genes, although, it is likely brought about by the chemotherapy and it will be something we will have to work to protect him from during the course of treatment . For as long as this has been going on, it is likely another miracle that James has not yet had any more systemic infections.

Last night, James had a rectal tube placed to decompress his colon. So far he has drained about 750 ccs (about 25 ounces). Right after placement, he had an x-ray to be sure the tube is where it belongs. This morning, he had another which shows things have improved significantly. The hope is that over the next day, he will decompress enough that the tube can be removed. In other children (not on chemotherapy), they might also run a flush through the tube (either sterile water or saline, I can't remember which) to help clean things out. But there is some concern about doing that with James and the surgeons are hopeful that drainage will be sufficient.

Dr. Briones, the attending oncologist, was pretty nervous about the whole thing. He called last night to check on James and he is anxious to have the whole procedure completed. This morning he was wondering how long the whole process would take. He even said we really need to pray that James doesn't get an infection from this.

So, please keep praying with us that the infection James has (actually it's an inflammation of the lining of the colon) will clear completely and that he will be protected from further infection. We are thankful that this whole thing seems to have been contained so well--a miracle in itself.

Sunday, April 8, 2007

Life goes on

Thursday morning, Vern, James and I left bright and early to bring James to meet Dr. Keller and the crew at the AFLAC Cancer Center in Atlanta. We didn't factor in quite enough time for traffic around Atlanta, but that didn't seem to phase anyone.

During our visit, James' blood was drawn and everything looked great, except his potassium. Which was critically low. They determined we needed to admit James to correct this deficiency, which can cause heart arrhythmia and GI problems. The rough guess was that it would take two to three days to correct the problem and make sure it wasn't going to continue to be a problem.

What they didn't take into account was all the mid-course GI issues James was bringing with him from Minneapolis.

This morning, however, it seems we all realized what we were missing and now that James' potassium is looking great, we'll be hanging around for a while to see what we can do about his GI issues.

His belly is very distended (sometimes this can be related to low potassium) and gassy. He isn't passing gas or stool again. Last night we had some significant pain issues and now James is getting morphine again, although there is the usual concern that it could exacerbate the GI issues.

He has also had two fevers this hospital stay and is getting extra antibiotics. We are waiting to hear the results of blood cultures regarding infection and a CT scan regarding his belly. There is some concern that he could have teflitis (an infection of the bowels), though tests seem to be ruling it out. Once it is ruled out, we will move on with the GI doc and his oncologists to help regulate things and find some tolerable way to nourish his little body. In the meantime, he is back on TPN.

It has been very good to be nearer to home. Vern was able to bring the children back up Saturday. (He stayed with us Thursday night and went home Friday afternoon). We had asked about getting a room at the Ronald McDonald house, but there wasn't one available and they weren't big enough for our family. The social worker offered to find us a motel room through another organization's program, we applied and were approved. We were blessed to be provided with lodging for Saturday night and we enjoyed the weekend together as a family.

Katie is staying with me, at least for a time to help and be company.

My folks drove down from north Georgia/NC to see us all--especially James--and my Dad brought his not-very-frequently-used laptop. This is a huge blessing multiplied by the fact that the hospital has WiFi that we are able and welcomed to use. AND it works in James' room.

Please pray that we would have wisdom and find the knowledge we need to make choices regarding James' care and pain management. Pray for his doctors as well for wisdom and for eyes to see James' needs. Vern would like us to pray for wisdom for him to know 'what to do next' as there are many important things vying for his time and attention.

Please continue to pray for protection for James from infection.

With the blessing of the laptop, I hope to catch up on a few things, Lord willing and James tolerating! Thanks for checking up on us, thinking of us and praying for us. As always, we welcome your notes, thoughts and questions through the comments link below.

Love, Stephanie

Wednesday, April 4, 2007

Safe and sound

What an incredible trip we had. Through hail and severe thunderstorms, in traffic jams, and long days. We are so grateful to be all together again. Even though Vern, James and I will travel to Atlanta tomorrow.

We arrived in Milledgeville this afternoon and just spent time together. The children were in with Mrs. Anna (still pronounced missanna :*)) and we 'surprised' them there. We ran a few errands in town and relished being together.

Of course, billions of things went through my mind as we travelled. I did take some pictures that I might try to post another time. But now we are here and together and it is past my bedtime.

I am so thankful to have such a wonderful husband. He drove the whole way back from Minnesota (the fact that he loved driving the car we used did help, I'm sure). James blew out diapers all over the bed each night in the motel room and it was good to have an experienced nursing assistant available.

We are also grateful for all the wonderful thoughts and prayers on our behalf. Thank you (even though it seems so incredibly inadequate.) Tomorrow promises to be a long day. Please keep praying for James and for wisdom for us.

Love, Stephanie

Tuesday, April 3, 2007

Crossing the border

As of 3:05 pm GA time, the on-the-road Skelly's crossed the Kentucky border. They're hoping to make it to Nashville or perhaps Chattanooga tonight. James is doing well-- sleeping most of the time, I think. Hannah feeds him through his G-tube every half hour. We are all eagerly looking forward to having them home. They're really close!


Monday, April 2, 2007

They left...

the hospital at 2:00 pm GA time, and were passing Tomah, WI, around 6 pm. I just talked to Momma and they're coming up on Rockford, IL and hoping to continue till 9 MN time since James is traveling so well.

Please pray that:
1. they would be able to keep James hydrated
2. for safety
3. for protection from infection
There was one other prayer request, but I forgot it :*(.
I apologize for this late update. Should've gotten on earlier and posted this.


Keeping things in perspective

One of the incredible things about a journey like childhood cancer is being in the hospital, having friends and family who are so sorry for all the things we are enduring and looking around and seeing so many families that have it so much harder than we do.

I recently met another mom on the floor whose seven-year-old son, Hunter, had ALL (the same leukemia James has) at the age of three. He went through three years and three months of treatment and then 11 months of followup. Just after his 11 month follow up check up, he relapsed. It took three weeks for them to diagnose his relapse (to determine what kind of cancer it is) and he just finished his first month of treatment. He will have to have a bone marrow transplant at some point soon. They have been in the hospital here or in Des Moines for seven weeks, they expect to remain here until Hunter has his transplant (probably in two more months) and then they will have to stay a minimum of 90 days following his transplant. His mom, Tori, was finishing up her second year of nursing school during his first year of chemo. Her husband couldn't deal with all the stress and now she is a single mom with three children. Home is Des Moines, IA.

I also met another mom whose four week old daughter, Chloe, has been in ICU for all but a few days of the last month. She was born in Red Wing, MN with the vessels in her heart reversed (as I understand it). She had surgery and then was placed on a special machine, needed to keep her alive, which can cause blindness and developmental delays or retardation on down the road. The only time, Jennifer has been able to hold Chloe was the three days they weren't in ICU. They expect to be in the hospital for at least one to two more months and are very uncertain about what kind of care Chloe will require when they take her home. This mom, Jennifer, has a 20-month-old son at home.

The remarkable thing about these moms, and others I have met, is that none of them complain about their circumstances. They talk about it without bitterness and are senstive to others who are walking through other trials that may not be as severe as their own.

It is a privilege to meet these people. I'm sure they would appreciate your prayers.

Love, Stephanie

A slight delay

We had a good night once James finally got cleaned out. He rested very comfortably for the night. His nurse got us up early (about 5:30), at my request so that we could give him a bath, change the dressing over his central line site (not my favorite thing to do, by far, but not as nerve-racking as I was afraid it would be.

This morning James' blood work came back saying that his hemoglobin was too low to travel, so he will have to get a pint of blood before we can leave.

Because it has been a while since he has gotten blood, they will need to do a type and cross before they can start the blood transfusion. The transfusion takes about two hours to do and the doctor just said to plan on a four to six hour delay.

This may mean it will take three 'easier' days to get to Toomsboro. Please pray for wisdom to balance our strong desire to be home and be together as a family again with James' needs. And that we would know how to help James' little system to work better (especially in terms of moving things through) while he has to deal with the added stress/complication of chemotherapy.

I hope to post a quick note whenever we get to leave--or if there is a longer delay.

Love, Stephanie

Sunday, April 1, 2007


It worked, PTL! James is resting nicely and his belly is much softer. The plan for the night is to make sure he all hydrated and ready to go tomorrow. Since everything is now 'clean and fresh' we'll feel pretty good about the trip to Georgia.

But please don't stop praying!

Love, Stephanie

April Fools

Today is April 1, and therefore April Fools day. This evening there has been alot of slime going around. Tara, one of the nurses acted in company with the charge nurse, Kathy, and they slimed the HUC's phone. (The HUC is the unit secretary.) I helped out by watching out for Jill, the HUC, and told Tara when I saw her.)

Then to get back, Jill slimed our door, because she thought that Tera was our nurse. She was not. Barb, James' evening nurse got the slime. Next, Jill slimed Kathy's phone and mouse and got Kathy to use her mouse.

Jill came into our room and asked me to come out in a few minutes, which I did. I went to the other side of the nurses station and talked with some of the nurses. When I went back, Jill had slimed our door to get me. That time she failed, I saw the glint of the light in the slime and having watched them slimed the other nurses, I opened the door just above the slime.

It has been real fun this evening. Thanks to April fools day and all the nurses.

Love, Hannah

My hero

This is the better of two pictures I got of James and Vern (it's a lighting thing). My hero (our hero) arrived this afternoon after two days, 21 hours and 1,351 miles on the road and I got to watch him glory in the chance to snuggle, rock and comfort his hurting little guy. He left about 6 p.m. to spend some time with and stay at his mom's.

We are still hoping to leave tomorrow morning, but there has been no poop yet. Glycerin suppositories didn't do the trick and an enema (half of one, actually) is next up on the roster. Please keep praying. I promise to post the outcome... okay, I'll just let you know if it works.

Love, Stephanie

Pray for poop

James is having a harder time today moving things through and his belly is distended. We have given him something called Miralax (I think that is how it is spelled) and are hoping for some action today. It would, more than likely, help his comfort level quite a bit. It is hard to eat, or to have food but into your belly via a g-tube, when you are already full.

I am trying real hard to come down with a cold or something. It will be my second one. Must be the hospital.

At about 10:30 (local time) Vern was leaving Janesville, Wisconsin. We are hoping he will arrive around 4 or 4:30.

The doctors are hoping to get us out of here by 9:00 tomorrow morning, so we still have a few things to do. I need to go pick up James meds and supplies from the pharmacy and sit down with his nurse to make a chart of when he is supposed to get everything. We have most of our stuff packed in our bags and a box and we hope to get some of that into the car this afternoon.

Please pray:
  1. for continued safety and good driving for Vern.
  2. for good health for all of us (no colds, etc).
  3. for James to poop and get comfortable and be able to eat.

Love, Stephanie