Disconnected

Saturday, Vern and Hannah came up to Atlanta and Katie and I went home. It has been a good thing as all but one of the nurses James has had since then have been new-to-him. It seemed strange to be here without James and Vern, but now I am glad and have been catching up some on rest.

Sunday was a little difficult for James as he continues battling a staph infection, mucusitis and fluid around his heart.

Today, James is doing much better and is disconnected from his IV fluids and meds and is now getting everything by g-tube in preparation for coming home tomorrow. Of course, things can change at the last minute, but we are hopeful that all the home Skelly's will travel together to Atlanta to pick up all the hospital Skelly's and enjoy some time together.

Love, Stephanie

Too much excitement

More attempts were made by the transport team today to get James IV, access in order to give him the antibiotics he needs. All were to no avail. He finally ended up getting a PICC line (Peripherally Inserted Central Catheter). I starts out like an IV (I know, I asked the same thing) and then they insert special tubing through the vein to the main artery going into the heart (I think, feel free to jump in and correct me in the details, medical friends).

They were able to get the PICC line in because they use ultra-sound to identify the vein and then they use some sort of sedation to keep him calm and relaxed. He was secured to a papoose board. Once the line was in, they took x-rays to be sure it was placed right and there was a loop. They were able, PTL, to open the loop with a saline flush. Now he is getting his meds and sleeping. Unfortunately, he is showing signs of mucousitis. It was a mercy to me that Vern was here and Katie and I had left shortly before this procedure and gone to spend some time away from the hospital, per Vern's direction.

I think this is the hardest delay/extension for me so far. He did so well at home, I hate to see him lose so much ground. And I am tired of being here, feeling like I always have to be on guard and ready to defend James and ask suitable questions, advocating for him during whatever is happening.

The nurse practitioner who is always on the floor (M-F) told me today that James is probably the second most complex patient on the floor, including the Bone Marrow Transplant patients. I wish they would assign nurses to him accordingly. It would sure help my stress level!

With all the excitement around here it has been hard to find quiet time to read our Bibles and just be apart with the Lord for a little while. I am sure that will make a difference.

Some quiet boredom would be a really nice thing about now.

Love, Stephanie

Extended stay

Early this morning, James spiked another fever. I don't remember the numbers. The concern is that he may have a staph type infection. So sometime soon, someone will come up to try to get James an IV so we can give him vancomycin which is a good antibiotic to use against staph.

It is still possible that things could clear up enough that we could take James home this weekend. If that happens, we could take home an oral antibiotic to complement the vancomycin. However, we may determine it is best to stay here through the weekend and go ahead and remove his port early next week.

It just depends.

Vern stayed at the Ronald McDonald house last night and is here with us today. While he is here, Katie and I may take a break and go out to do some things. We are still deciding how to handle the days coming up.

Please pray for wisdom for us and for James, as he goes through another IV stick and fights whatever it is. On the up side, his counts are all good and we seem to have caught this early.

Love, Stephanie

for Mary--Could you somehow get me your e-mail address? You can leave it in a comment which I won't post.
for Marian--yes, we did get the stick. (Thanks!) No, we haven't had time to weave. :*) I will try to e-mail soon.
for Lori--I will post some info on pro-biotics as soon as I can. Maybe sooner than I had thought, since we will be here at least another day or two.

Blood test pass; Temp test no pass

This afternoon we were pleased to learn that James blood methotrexate levels were acceptably low and he could now go home. All the paperwork was in order and the nurse had logged into the computer saying we had gone home. We hadn't though. Vern was on the way and we were packing up our things.

And James was acting puny.

Then he felt warm, so I took his temp. He had a fever of 38.7 degrees Celsius (101.8 F). So we couldn't go home.

We suspect this has something to do with all the trauma to his port site (it's pretty red, even now). As a precaution, they are running a blood culture (another stick from the lab) and he got two shots of rocephine (an antibiotic). We will stay overnight to be sure he doesn't spike a temp again. Please pray that whatever is causing James' temps will clear up and go away and there is not and won't be any infection.

Vern was nearly 2/3s here and so he came on and spent the evening with us. He is staying at the Ronald McDonald house tonight. We hope to go home tomorrow... but as usual, there are 'no promises'.

The rest of the children are in great hands with our friends, the Clayton's. Pray for all the folks at home too, please.

Thanks for sharing our sorrows and our joys. We are mindful that the Lord is always with us, holding us in the very palm of His hand. I wish I had the time and opportunity to share so much more.

Love, Stephanie

So many pictures, so many memories

Here is just a small sampling of some of the normal things that occurred during our glorious two and a half weeks home from the hospital.

Settling in and getting stronger

Sitting with Katie for some extra support.

Sitting on his own--getting stronger.

Taking on the manly jobs

Owen, 11 helped Vern build the brooder and pen for the newly ordered chicks. He got the privilege of using a borrowed staple gun to finish up the job--stapling the chicken wire in place.

Farmers again!

It was an exciting day to drive to the post office in our new town and pick up our chicks. We ordered 100 meat chicks and 50 pullets (baby hens), seven of which will eventually go to a friend. The children are excited to be farming again as well. All of us are looking forward to healthy and taste-y chicken raised on pasture and processed by hand. The meat birds should be ready in about eight weeks. We are also waiting with great anticipation having our own delicious fresh eggs (from hens on pasture--which makes for tastey and healthy eggs!) It will likely be five to six months before we are eating our own eggs.

Note the little yellow chicks above--these are meat bird chicks. In about eight weeks they will be ready to 'process' for the freezer. You can now say you have seen feathered pigs! I hope to post more pictures of them as they grow. The darker chick in the bottom left corner above is a white rock chick and should grow to be a laying hen.

The pretty golden chicks in the photos above will grow to be Buff Orpingtons--my personal favorite laying hen.
Kitty thinks she might like to help with this new farming venture. Her responsibility is harvesting mice.
As much as possible we raise our meat birds out in the fresh air and sunshine. For their safety, they need to be kept warm and out of drafts for the first two to three weeks. For the remainder of their time, they enjoy fresh pasture at least daily.



100% boy!

In the kitchen
Supervising Hannah making his yogurt milk. We like to have James have as much *real* food as we can. Even while we are using his feeding tube.
Taste-testing.
Too thick, needs more milk.

That's it Hannie! You got it!

Sweet boy, doting sisters, favorite brother and DADDY

A Skelly family tradition called "Double-teaming."

Signing "Daddy" with a James accent.

Carrie Rose with no curls

Special Celebrations--Passover

While we are not religious or cultural Jews, we have a deep connection to the man who was, arguably, the most famous Jew in history. He celebrated the Passover just before he died on the cross to save us from our sins. Because of that, we desired to learn more about the connection. A number of years ago at a home school conference in Georgia, we attended a seminar that included a talk about the Passover Seder. We determined to at least celebrate it one time.

It has become our families favorite holiday celebration. We like to celebrate in on Maundy Thursday, but when we can't, we just try to enjoy this incredibly meaningful time.

Since we spent that time at the hospital this year, we decided to just pick a night and celebrate.

Everybody helps get ready for the seder in some way!



Our loveliest Passover Seder table yet, thanks to our wonderfully hospitable friends--I hope to introduce you to them in the near future.





Those that wish to participate in the hunt for the afikomen must cover their eyes while it is being hidden. Finding it is not such as easy task as one would think. But the prize is always worth the hunt!
After the party, the nap!

Chasing Hannah

Actually he wasn't chasing Hannah, but there was some extra motivation to pull himself up. While he was home from the hospital, James regained all of his gross motor skills (like pulling up to standing and cruising along the furniture). We will continue to practice the skills and work to build up his strength and endurance.

Thanks for rejoicing with us in the little joys of daily life.

Love, Stephanie

One whooped puppy

We enjoyed our visit with my folks and a delicious home-made lunch this afternoon. Thanks Mom and Dad!

Earlier I mentioned that I wasn't sure what the day held for us beyond their visit. We had hoped to visit the garden after James finished the chemo. Someone else, however, had other plans.

Once James' methotrexate was completed, we needed to use his port to draw blood for labs to determine the level of methotrexate in his blood. The port flushed just fine. There was some trouble drawing back enough blood to get a clean specimen and during the effort of positioning James, the port became blocked. Now nothing will go in or come out.

We had held his IV from yesterday, but it failed and James endured more sticks to try to get another IV started. Andy, the flight medic, who incidentally commutes from Toccoa, GA, tried three times to no avail for an IV, though he was able to get enough blood for the lab tests. The nurses tried to reaccess his port, but it leaked. This is essentially what happened the last time. Others are hopeful that tomorrow things will be different and they will try again to reaccess the port. While I do not share their optimism. I sure hope they are right and I am wrong--for James' sake.

In the meantime, flushing James with bicarbonate to quickly lower his methotrexate levels is critical. The nurse practitioner has worked out a plan for James to get what he needs and for the nurse and the doctor on call to run regular lab tests through the night to be sure everything is in line, since there is certainly no existing protocol for flushing a chemo patient this way.

The plan makes sense to me. But please play for wisdom in the implementation so that James will remain well-hydrated, that his pH levels would be correct and manageable and that he would fully flush the methotrexate within the first 24 hours (by 3:15 tomorrow afternoon).

After all the excitement, James fell sound asleep (see photo above) and took a good, long nap. He is now sitting comfortably with Katie in the chair (the nurse changed out his bedding), watching Pride and Prejudice (the A&E version).

I'm off to warm up supper, but hope to be able to post some more photos later. Thanks for checking up on us.

Love, Stephanie

Vroom, Vrooom!

Did you see all those baby chicks?

Aha! SuperJames!

Is that a camera to smile for?

Working Hard!!!

These are some pictures from home!

Love, Hannah

The good life at home

Snuggling and reading are popular at home activities.

No photos, but a job

After my last post, I set up photos to upload and then Blogger decided it wouldn't take them. I needed to do other things, so I set that aside. Today, the computer is being finicky. I will do what I can do.

Vern called bright and early this morning to let me know that he'd gotten the call from Mr. Davis, his new boss. He is probably at the school, as I type, signing the paperwork and meeting some of the teachers. Today is the last day of post-planning, so this is his last opportunity to talk to the math department head before he starts work July 31st. This is like planting our fields. Lord willing, we will now turn our attention to 'building our house'.

Dr. Keller came by to check on James. He was pretty tickled with how well James is doing. I teased him a little about his advertisement for the port over the Hickman. He was very good-natured about it. We also chatted some about supplements and beneficial foods for James. He said that they don't know why, but serious and systemic yeast infections seem to be far more common in people on chemo than it used to be. He even said he thought they should be using more pro-biotics and that he has concerns over some cancer diets that limit things like fresh fruits and vegetables. I currently have James on a high potency pro-biotic and we are looking to get him onto some 'green juice' as well.

Sometime today I'll meet with the dietician here to talk about James' calorie needs. It seems he is gaining weight far too quickly (almost four pounds in the two-and-a-half weeks we were out of the hospital) and we need to figure out what his real calorie needs are and how best to meet them.

We are looking forward to a visit today from my mom and dad who are driving down from northeast Georgia. It is nice to see them, a closer drive for them and they love to come see James, espeically.

Besides finishing up James' chemo, I am not sure what else the day holds. I will try again to post some photos, but, as I often tell the children, "No promises."

Thanks for checking in with us. We love to hear from you!

Love, Stephanie

Back on track, we hope

At 3:15 this afternoon we finally got James' chemo (IV methotrexate) running through his port. It was an effort to get to that point, but I am glad we got here. The methotrexate with run until 3:15 tomorrow afternoon, then James will get 24 hours of bicarbonate flush to help him get the methotrexate out of his system. My undertanding is that we still have a chance of going home Thursday evening. Our nurse today told me that she has seen them discharge patients as late as 7 p.m. That is good news.

When I talked to Vern he said something about James Arthur Arthur Skelly and suggested that we call him Murphy.

I'm still trying to get the name on his chart corrected. The nurses think we are funny.

Love, Stephanie

P.S. I was having difficulty with the computer earlier today, but everything seems to be working well (now that all the day people have gone home), so I will try to post some photos next.

A job?

Monday, while we were waiting for James to get out of surgery and trying to get a little snack out of the vending machine, Vern's phone rang. He almost didn't answer it, since he was in the middle of such an important task and he didn't recognize the number. :*)

But something compelled him to answer the phone and it was the principal from Johnson County, with whom Vern had briefly met last week when he submitted his application package for a math teaching position there. He was very busy last week with the finishing up of the school year and testing and all and he told Vern he would call him next week after their brief conversation. We thought he would call to schedule an interview and wondered how long the process might take and how many, if any others, had applied for the position. Instead, this man asked Vern if he could recommend Vern to the school board for them to consider him Tuesday night at their meeting.

Vern said yes.

We hope to know something more about this job by Wednesday or Thursday and we are grateful to the Lord for this turn of events as we learned last week that two of the positions Vern had applied for were already filled.

Please pray with us that if this is the job the Lord has for Vern, everything would work smoothly and if He has something better that He would close this door.

Love, Stephanie

James Arthur Arthur Skelly

At home James does just fine. But bring him through the hospital doors and something about him changes. He morphes. Into James Arthur Arthur Skelly. Even his chart says, "James Arthur Arthur Skelly."

When he comes here, the most simple thing becomes complicated. Getting a new port installed and getting fluids and chemotherapy through it should be a very simple, basic thing. It is not, after all, abdominal surgery. But somehow, something about James makes it complex and difficult.

Yesterday, the area around James' new port filled with fluid as they tried to use it to hydrate him. So we had to turn that off and get a peripheral IV placed--which essentially defeats the purpose of having this port in the first place. Marcus from the Emergency Room came up shortly after 7 p.m. to put in the IV. Thankfully nothing much happened with putting in the IV and it worked as advertised. We also went down to radiology and they did a quick contrast injection inot his port to be sure it was placed right and things could move through it. Last night James got his hydrating fluids and this morning we are waiting for someone to look at his port and say it is okay to use it. Then, we will try again with fluids for a couple of hours, and if nothing weird happens, I think we are supposed to start his chemo.

In the meantime, perhaps I ought to set my sights on correcting the name on his chart.

Love, Stephanie

Back in the hospital

James, Katie, Vern and I left home yesterday to come to Alanta. We stayed at the Ronald McDonald house near the hospital and left early this morning to be at the hospital by 6:30 a.m. James's surgery to replace his port was scheduled for 8:30, but was delayed because someone somewhere was waiting for results of labs that weren't drawn. I was not a happy momma and James was a hungry little boy.

He finally went into surgery at about 10:30 a.m. We were hopeful that this would be our hiccup for this visit, but at this point there seems to be some trouble with the new port. We are hoping and praying (and crying out!) that it is only the access to the port and not the port itself.

He still needs to get fluids (bicarbonate to neutralize the pH of his body fluid and hydrate him) before he can get his chemo and a delay in getting the chemo can mean a delay in going home. We are hoping we'll be able to go home Thursday.

Now that we have WiFi for a few days, I hope to be able to post some pictures and updates on life over the past week. It has been wonderfully normal!

Please pray:

1. that James' port would work reliably and not need to be replaced anymore.
2. that he would hydrate well and neutralize well so he can get his chemo on time.
3. for a boring, short stay in the hospital! :*), and a quick return to normal life.

Thanks for stopping by to check on us.

Love, Stephanie

Berries, berries, berries

One of our favorite books is Berries, berries, berries. It tells the story of one families summer berry picking adventures. In June, they pick strawberries, in July, they pick blueberries and in August they pick blackberries. Each time they pick berries, they eat them for every meal the next day and they make jam for the winter. In the winter, they eat the jam and look forward to picking more berries the next summer. They thank God for the berries. And for the jam.

It is a sweet story of agrarian family life and nearly every time we read it, we are hopeful and wistful that one day we will have our own berry patches and we will live out this favorite story.

Saturday, all the girls and Owen loaded up in the big red van and headed for Washington Farm. (Vern stayed home with James and had his own, almost private, World War Two movie festival :*)) Eight of us picked strawberries for a little over an hour and we ended up with 11 gallons of berries. We brought them home and washed and cut and ate strawberries. We froze some and for Mother's Day we had strawberries and angel food cake and strawberries and biscuits.

Thank you God, for strawberries.

d d

Good news

Yesterday, Vern, Hannah, James and I went up to Atlanta to visit with Dr. Keller. James was weighed (he keeps gaining weight and is now 12.5 kg or 27.5 lbs), measured (I forgot to ask how long he is) and milked for blood (for some reason they finger pricked him and then 'milked' his finger to get enough for the labs they wanted to run. It probably wasn't any worse than being stuck, but it wasn't really any better either.

Dr. Keller was really tickled with how well James was doing. When we left the hospital last Thursday, he was confident we would be fine until this Thursday. Evidently, he was the ONLY one who thought we would make it. We were hopeful, but not optimistic and all the doctors and nurse practitioners were SURE we would be back before our appointed day. James counts were good for him, all things considered. His hemoglobin is a little low (8.4), but not low enough for a transfusion. His platelets were a lot lower than they were when we left the hospital (down to 280), but that is good. I've forgotten his white counts, but his ANC, which indicates how well his immune system is working, was 2.8, which is on the low end of normal.

Dr. Keller was confident things would only get better for this next week and a half and so James will be scheduled to return to the hospital 21 May for a new port and chemo. This should be about a four day visit if all goes well.

In other family news:

Neighbors brought by four baby bunnies they uncovered while mowing their grass. Really they should have just left them, as wild baby bunnies do not do well in captivity. These made it for about nine days despite everyone's best efforts at nursing them around the clock. We understand is pretty good.

We have had some lovely weather here. It has been like warm Minnesota days. There is lots of green in the trees, but we could use some rain for the grass. Today is supposed to be hot.

The house and property we were considering is no longer available. The fellow who owns it has decided he wants to keep it in the family for now. He has no children.

We are considering a piece of land. A seven acre pie shaped piece. It was clear cut several years back and the overgrowth is pretty thick, but we have been visiting over there lately and are beginning to develop a possible vision for the land. The wide part of the pie piece is relatively flat, as best we can tell, and could be slowly cleared over time with the help of goats and some pigs. There is a lot of forest debris on the ground and the soil underneath is sandy. This could make some nice pasture as we work to 'take dominion' over it. The pointy part of the pie piece is much more sloping and looks like is would have a few nice potential home sites where the home could be nestled into the slopes.

Behind the land is a large parcel owned by a wealthy man in the area. He told the current owner when he purchased it a few years back that he might be interested in selling him additional land in the future.

The biggest challenge, I think, will be figuring out an affordable living situation. My personal preference would be to find a way to live on the land for a year or two before we build our home. There are a number of mistakes we could have avoided if we'd been able to do this in Minnesota.

Well, today's responsibilities are calling me and I need to move on.

Thanks for stopping by. Love, Stephanie

We're home!

I just finished typing up a nice post about home, how wonderful it is to be here and the tremendous welcome home meal (and sign) we enjoyed. I wrote something about the first night being tough for James (he's congested, we think it's allergies) and how we are getting him into a good routine, but it will take while for it to be reasonable (in terms of how much time of the day we are spending on his cares). I even wrote about not having to be back to the clinic or hospital til next Thursday as long as James is doing well. Dr. Keller is postponing the vincristine he was supposed to get over the next two weeks so that James' body has a better/longer opportunity to heal first. Then, poof, it disappeared into cyber space.

So, now I just want to get this up and let you know that as we get a handle on James' fluid needs, he is settling in well, though there are some definite issues we are concerned about (hydration and comfort being primary. I am starting to catch up on much needed rest. We are catching up on hugs and snuggles and we've been able to spend some time outside. I even went for a good walk with Rebecca and Carrie this afternoon.

IF all goes well with James, we will have a checkup appointment at the clinic next Thursday and then he will be admitted for some chemo May 21st.

Please pray:

1. that all would go well with James--specifically no fever, no infection, no mucusitis (this would be a miracle, but we'd like to ask), no pain or discomfort that cannot be taken care of at home.
2. that James' dry skin, yeast rash and his terribly dry, chapped lips would heal quickly and completely.
3. for wisdom as we settle back in as a family and work towards buying land to build on.

Thanks so much for stopping by and checking up on us. We are grateful for your support.

Love, Stephanie

We're leaving

Well, we are on our way out. Of course, we had to make three trips to the car with all the stuff from James' room. As Momma said, "A trip for each week we spent here!".

Please pray that
1. That the trip home would be safe!

2. James stays happy and that we can keep him well hydrated.

Love, Hannah

We passed!

Or rather James did. His blood methotrexate levels needed to be below 0.2 by 7:30 p.m. The lab techs actually drew it a little early and it came back at 0.07. So, barring anything unforeseen, we should be on our way home some time by early afternoon tomorrow. Yippee!

And praise the Lord!

Love, Stephanie

It's a James thing

Last night, our nurse, Katie, was trying to help us get to bed by a decent time by doing James' midnight vitals and his blooddraw a little bit early. It's a good thing we started early.

For some strange reason, his port (through which he had been getting bicarbonate fluids to bind with and flush out the methotrexate) decided to quit working. Katie couldn't draw blood out and she couldn't push fluids in. She got the charge nurse, who has 22 years of experience and she couldn't get anything to move either. They re-accessed his port (which is a wee bit traumatic for James) and, since the first needle was bent, we hoped that this would correct the problem. It didn't. They then tried to put some blood thinning medication in (called TPA). One nurse (I don't remember who did what at this point), pushed so effectively, that the sub port blew out and there was saline and diluted blood on the sheets. Oddly, it was clear there were clots in the blood that came out and in the tubing.

Two nurses tried to get IVs in and neither would work. Finally we called the emergency transport folks and someone was available to come help. He was very kind (everyone was very kind and very apologetic through the whole ordeal) and was able to get an IV near James' right hand. The only trouble was that James uses his right hand to 'talk' with sign language. Poor little guy was just crushed.

In addition to this, the first vial of blood they sent down to the lab clotted and they needed more.

Thankfully, we finally got settled at about 3:30 this morning. I was so glad I was able to speak with the nurse manager about nursing care continuity for James yesterday. She explained some staffing challenges they have been having, assuring me that that was still not an excuse for the lack of continuity in James' care and I asked if we could please have familiar nurses for these last couple of days as we prepare to go home. She worked it out so that we have our primary nurse today and tomorrow. I was so glad to see Maggie open the door this morning!

We all slept late and folks were just scratching their heads about the whole issue.

Today, Maggie tried again to reaccess the port. A tiny bit of blood pulled back, but the access leaked blood at the skin level, so they removed the access. Two more unsuccessful attepts at IVs were made and finally we called emergency transport for help again. They were tied up with a call so the alternative for now is a special bicarbonate solution running through his g-tube. It is VERY important for James to flush out the remaining methotrexate from his system.

We did enjoy the brief time without strings. After dancing in the hall a little, we made our way to the playroom and found some mats stacked like steps. James crawled all the way up (three steps) on his hands and needs. He was a determined little bug and he made it! I am so proud of him. He also played in an exersaucer and then we went back to the room to get hooked up to g-tube fluids and watch signing time videos.

His yeast-y rash seems to be spreading and the wound care nurse (who oversees the care of James' ostomies) insisted we begin using an antifungal powder instead of the cream because she says the powder helps dry James up and make the environment less hospitable to yeast. The trouble is that James sweats profusely. I am also concerned because all of his feeds have some level of sugar, which, of course, feeds the yeast.

One of our favorite nurses, Jenn, told me that it is becoming more apparent that James is going to right his own script for the next couple of years.

In spite of all this, there is still hope of going home tomorrow. Please pray:

1. that James' body would flush out the methotrexate and get down to the right levels before his blood test this evening at 7 p.m.
2. that his yeast would continue to do better with the powder (so far there seeems to be a difference).
3. that it would be safe for James to go home for the weekend (Thursday, Friday, Saturday, Sunday) and wait to return on Monday to fix his port and continue his treatment.

I'm afraid that if do get home tomorrow, I'll be so tired that I'll sleep the whole four days! :*)

Thanks for checking in on us. Love, Stephanie

Aiming for home

In talking with the attending physician today, I asked lots of questions to see what kind of assurance we have of going home later this week.

He told me that the biggest concern with James and the methotrexate is sores. Methotrexate damages the lining of the mouth, esophagus, stomach and intestine,causing mucousitis. It can be very painful and is treated with pain medication until it has a chance to regenerate and recover (I didn't think to ask how long that takes). Sometimes Tylenol is sufficient to manage pain, sometimes morphine is required. Methotrexate does not generally lower counts, putting one at risk for infections. So this should not keep us from going home as I first thought. The nador (or the low point after a particular chemo drug) for methotrexate occurs at about 7 to 10 for most people.

There is still some debate about whether or not James will receive his Vincristine as an outpatient or inpatient. The thought varies daily, it seems. Today's thought is that he will come in as an outpatient, but we should be prepared to check in. Just in case. Vincristine does not lower blood counts either, but, as we have seen over the past couple of months, it does tend to wreak havoc with the GI system. They are still planning on James getting his vincristine dose on Monday.

Aside from the possibility of infection (which should be relatively low right now), there isn't too much that should keep us from going home on Thursday.

Today a medical supply company rep delivered James' new feeding pump and supplies. Yesterday we got word that James MA was approved for April and May.

James' dose of methotrexate is nearly complete. Because his hemoglobin is falling, he is due to get a unit of blood once his chemo is complete. Earlier, Nan asked if a child James' age and size gets a full unit. He actually gets about 150 ccs of blood. If memory serves me from our conversation, an adult unit is about 325 ccs.

Please pray:

1. that James will not react to the blood he gets tonight.
2. that his body will clear out the methotrexate to safe levels quickly (that is another thing that could delay our discharge).
3. that the Lord would continue to protect James from infection.

Thanks for stopping by.

Love, Stephanie

Another busy hospital day

Last night, frankly, was miserable. James couldn't nurse at all (a huge source of comfort for him these days) because he was to be sedated in the morning for a lumbar puncture (LP). In the future, I will press for an approximate procedure time and he will be NPO for no more than six hours prior to that time. I just hate arbitrary edicts from people who do not know my son. (Climbs down off soapbox.)

The LP itself actually went very well and James was so relieved to finally snuggle, nurse and give up and take a good long nap. Me, too. We wouldn't have even made it through the night last night without Hannah. She did great and she got a good nap today too. Tonight she has a headache, so please pray for her health and comfort too.

After the LP, during which they took a fluid sample and pushed methotrexate into his spinal fluid, we had a busy day. Speech therapy dropped by and since he was doing so well, they encouraged physical therapy to stop by, then the audiologist came by. James new molds from February are now attached to his aids and he seemed to be glad to have them back--though not so glad while we were putting them in. We will be working on his re-adjustment to them again for the next while and tomorrow they are hoping to get him a hearing test in the sound booth.

We met a new oncologist today and then the discharge nurse and resident came back because they had forgotten to tell me that things were moving along for us to go home this week. They plan to have all their ducks in a row by Wednesday. This doesn't mean we will go home Wednesday, but things will be in place, so that IF all is well with James' counts and his elimination of the methotrexate, we might get home Thursday or Friday. Friday is more likely. Please pray that James' counts will say it is safe for him to go home--Thursday would be nice.

James' protocol for more of the offending Vincristine next Monday and he will be admitted for that--most leukemia patients get this in the clinic. But James is different and we live two hours from the hospital. It wouldn't be a big surprise if we end up being in the hospital for another 2-3 weeks.

Tonight, Jenn, James' nurse, came in to change James' ileostomy bag. There was a small spot under the dressing portion (a little smaller than an M&M) that is breaking down. Jenn is VERY concerned about how his skin will handle the chemo waste from the methotrexate that passes into his bag. There isn't much exposure, but it could leak and cause James some great discomfort. Please pray for protection for James' skin from the methotrexate and any other unknown irritations.

At home, Vern continues to submit applications for math and technology teaching positions near our new home. He did get word that one position was filled. There is also some talk about getting some meat bird chicks and some pullets (future laying hens) soon. Please pray for the Lord to lead Vern to just the right position for him and for wisdom as Vern gets ready to make some final decisions regarding our future housing. I know he is feeling confident because he went for the ten-year driver's license. You can change your address on it for free one time.

We've never, in our married lives, lived anywhere for ten years. I'm excited.

Pray for David

Not too long after we were admitted here, I met the mom of a young man, now 18, who was getting ready for his second bone marrow transplant (BMT). David is now 6 days post-tranplant--he has six siblings and two of his sisters are perfect matches for his marrow. He has had an increasingly difficult time and today was moved to the ICU. His blood pressure is really low (90/30, I think his mom said) and his pulse his high. His counts are near nothing and his temps are near 102F. They suspect he has some sort of infection, but haven't yet determined what kind.

A little history: When David was 15, he was diagnosed with ALL (the same kind of leukemia James is being treated for). Because he was 15, his cure rate dropped significantly (children diagnosed between the ages of one and nine have the best cure rate). Seventeen months into his treatment, David relapsed and had a BMT. Fourteen months later he relapsed again and that is why he is having BMT #2.

I really only know his mom, Pam. She loves the Lord and wants him to be glorified in all this. Please pray for David and his family. You can read more about David here. You can also use the link to the right under "Other families fighting cancer."

Love, Stephanie