February, 2004

Nate ate the great American breakfast of an eggo waffle, bacon, and California rolls.  Nana and Papa took AJ over to my sister's house for her daughter's birthday.  Kind of strange walking through the house this afternoon without the little guy under foot.

For dinner, we had to go get more sushi for him.  He likes the gyoza too (basically, Japanese potstickers).  We also went by Blockbuster so Nate could pick out some movies to watch.  He watched his Scooby Doo movie we rented upstairs, while I hung out next to him typing this update.  He's so sweet.  Every so often he'll say "Daddy, can I tell you something?" and then he'll say "Daddy, I love you."  What a trooper.

Tonight Christa is supposed to hook up with her group of friends, the LSI girls.  They all used to work together, and they've all stayed very good friends.  I figure it'll do her good to get out.  I'll stay home with the boys.  Not sure when AJ will get home with Nana and Papa, but no sweat.

Today's a pretty good day.  Nate's feeling pretty good.  Christa checked his dressing on the Hickman line, and it was really starting to come up.  We needed to do his dressing change today anyways, so we did it in the morning while the baby was sleeping.  Nate started out complaining loudly and worrying about whether it would hurt, but Christa got started and it came off easily.  That was good.  After she changed the dressing, I did his cap change and line flush.  That part was done for the day.

Nate decided he wanted to go to Taco Bell for lunch.  This is the first time that he's wanted to go somewhere since our day at the park feeding the ducks.  I'll take this as a good sign that he's feeling well.  So, our big family outing was heading down to our local Taco Bell, all four of us.  Kind of cool.  Nate can't climb into our out of the van.  He actually can't even go up steps without a hand helping him up.  I'm sure it'll get better as his weight drops, and the steroid fades.

We're done with the steroid today, yeah!  We started the 6-mp tonight.  Hard thing is that it's supposed to be on an empty stomach.  Steroid boy doesn't stop eating, though.  So, I put him to bed at 8pm, woke him up at 10pm just long enough to give him his pill, then he went right back to sleep.  Luckily, he slept well.  Sometime in the middle of the night he needed to use the restroom, so Christa helped him.  I fed the baby a bottle about 4am, and he went back to sleep nicely.  So, in all, it was a good night.  No middle of the night food preparation.  We'll see how subsequent days go.

Good News!  Nate's leukemia is in remission!  It's official, we move on to the next stage of chemo, Consolidation.

Today was not just any clinic day.  Today was the last day of induction.  We headed off to the hospital bright and early so that Nate could have a BMA & LP.  Those suck.  In a very big way.  When we got there the did a blood draw for labs and took Nate's vitals.  His numbers came back great.  His Hgb was pretty good, but his platelets were up a lot, into the normal range.  His ANC, which was in the 400's last week, was something like 2500 today.  His nurse indicated that his numbers might be artificially elevated by the steroid, but they're obviously far better than before.

Now, his vitals were kind of fun.  Nate is weighing in now at 56 lbs.  I think he was about 42 lbs before we started this process.  Crazy.  He gained 1/3 additional body weight in 1 month.  And, my back is starting to feel it.  I've had to carry him a lot lately.  I'm sure the extra weight is hard for his legs, and his energy level is so low.  The real fun is when he wants to watch tv upstairs and I've got to carry him up the pretty steep staircase.  Doesn't really matter... he could weigh 3 times as much and I'd still find a way.

It was tough to get all the way through to the procedures.  Nate had to be pre-op, meaning no food.  The human garbage disposal had to abstain from eating.  It wasn't voluntary, that's for sure.  Christa and I had to withstand the fury until we could get started for the procedure.  Then, we traded off the food issue for the issue of getting poked.  Nate was stressing over that.  The nurses got him hooked up and gave him some of the sedative.  As before, though, Nate fought it off pretty good.  They actually did 3 doses of the sedative and 3 of the painkiller this time, rather than just the 2 last time.  Didn't make a difference.  He was completely alert and aware, and stressing over being poked.  We started off with the  LP, and he had to be on his side for that.  Lynn, his nurse, had some trouble finding the right spot in his back.  The weight he has added makes it much harder to feel the vertebrae.  Also, since you have to curl him up in a ball to get separation between the bones in the back for the needle to slip through, his much bigger belly is making it more difficult.  His knees can't get as close to the nose as they used to.  So, a couple of tries and no luck.  Whenever she would start to poke, he would straighten up his back and close of her access.  So, Christa and I swapped spots, and I used a bit of pressure behind his shoulder blades and head and pulled on the backs of his knees to bring them together.  This was good enough, because Lynn got it this time.  

After we finished dripping the spinal fluid into a collection tube for testing, they got the lab technician there.  The technician was to evaluate whether the marrow sample was good when Lynn took that.  So, we started the bone marrow aspiration.  Position isn't as important, but finding the right bone is.  And, finding his hip bone is difficult with the extra weight.  Lynn got it on her first try.  The nurses are really good at this.  Treating these kids gives them plenty of practice.

After the procedures, Nate did some recovering in the procedure room.  He was not a happy camper, and the sedative did nothing to help him cooperate.  He needed to lay flat for a while after the spinal, but he was insisting on sitting up on his knees.  He was screaming at us about that, but we finally got him sort of settled up on a pillow a little bit, and watching his movie.  He was getting a little mad about that, too, though, because he said he couldn't see it very well.  I think he had blurred vision from the drugs.  He kept asking when the stuff would wear off.  He told me "I can't control my brain".  Obviously he fights the sedative so that he can stay in control of himself.  Unfortunately, it just makes it harder on him.

He started eating once we let him sit up.  A bag of chips.  Some pieces of sushi.  Yeah, sushi.  That's what every 4 year old kid on steroids wants, right?  He has eaten California rolls nonstop for almost a week.  We've had to pick them up just about every day from a local Japanese restaurant.  They've got cooked meat in them, so they're ok for him.  No raw fish in his diet right now... But, it was hilarious watching the nurses faces as he munched his way through some rolls.  Then we took a trip downstairs to the cafeteria to pass some time until the results of the tests would be ready.  We grabbed one of those red wagons they have to haul the kids around in the hospital.  He was still woozy from the sedative, and couldn't walk very well.  So, off we went down to the cafeteria.  

We returned to the clinic waiting room, and hung out.  And waited.  And waited some more.  Finally, Lynn poked her head out, and said that Dr. Marina was really swamped, so she was grabbing one of the other oncs to review the slides.  A little while later, she was back, and you could tell by her smile that it was good news.  She said no leukemia, and the bone marrow looked really healthy.  So, she found us a room, and there we hung out.  We were waiting for Dr. Marina, so that we could ask some more questions.  We wanted some more information regarding the treatment protocols.

We talked with the Dr. for a while, asked some more questions, reviewed our understanding of the treatment protocols.  Stanford had adopted COG-9905 Arm A as the treatment protocol for standard risk leukemia if the patient was not on a study.  Or, we could enroll in the COG-9904 study, because Nate met the criteria (WBC < 50k, age between 1-9 years, TEL/AML1 positive).  We had come in thinking we would just follow standard therapy.  But some of our understanding of the protocols was slightly flawed, and the doctor straightened it out for us.  The doctor and staff left us so we could come to a decision.  We finally decided, and told them we wanted to enroll in the study 9904.  This was different from what we hinted at to Lynn earlier in the day.  It was funny, because she asked what made us change our minds.  She wondered whether we felt pressured by the doctor.  Honestly, we absolutely didn't feel pressured.  In fact, it seemed the doctor was almost indifferent to which treatment plan we chose.  She provided information very objectively, and let us make our decision.

So, the study coordinator was called, we signed the consent, and off she went.  A few minutes later, Nate was "randomized" into the study, and received arm D of teh study protocol.  This is the arm that has the 4 hour methotrexate administration, and the additional drugs for what appears to be a delayed intensification (referred to as DI).  This is the more aggressive treatment protocol in 9904.  I'll put up the treatment plan information soon.

For the next two weeks, we only have to give oral MP-6 once a day.  No more steroid.  What a beautiful thing.  Let's hope the hunger drops off.  Nate might get to lose a few pounds.  Two weeks from today Nate will have his first admission to the hospital.  He'll get a spinal tap to administer methotrexate into the spinal fluid, and IV methotrexate administration.  Then, 42 hours after starting the IV MTX, he'll get another drug to act as an antidote and stop the MTX.  This first IV MTX will be done with Nate admitted, but the following treatments will be done outpatient.  Our doctor had worked at St. Judes, and apparently they did everything outpatient that they could.  So, since we're getting 4 hr MTX rather than the 24 hr MTX, we'll be able to do the subsequent ones outpatient.  I think it's good, so Nate can sleep in his own bed.  More back and forth trips to the hospital, but that's fine.  Home is where he'll be most comfortable.

Christa, my wonderful wife, had the foresight to have a trophy made up for Nate for making it through induction.  He was quite happy to get that.  We gave it to him at the hospital, and then took a picture of Nate, Christa and Nate's NP, Lynn.  He's been so excited with the trophy since.  We have had to carry it to different rooms of the house.  Also, he keeps telling me, if I get hit by a hockey puck in the face, then if I'm really brave, he'll give me a trophy after my stitches.  This was spurred by a SJ Sharks hockey game that he and I went to in January, where one of the ref. got hit by a puck.  The kid has a memory like an elephant.

Other than the procedures, today was a great day.  A big part of the stress that Christa and I have been under is over.  Nate's treatment decision has been made, and we're moving on down the path.

Here's some pics:
Nate waiting for the doctor.
Christa, Nate and Lynn.

Food is again paramount in Nate's world right now.  Oh well.  Sushi and more sushi is what he wants.  

This afternoon we had an appointment with Dr. Marina to get some questions answered regarding treatment protocols.  Some of our understanding was not correct, and she helped straighten that out.  We've definately been beating our selves up trying to come to a decision.

Nate wanted to go with us, he even said he had some questions for Dr. Marina.  I don't think he wants to be away from us much.  So we brought Papa along to take care of Nate while we talked with the doctor.  They headed down to the cafeteria, big surprise, while Christa and I waited for our appointment.  We met with Dr. Marina and Lynn, his PNP.  We had a list of about 10 questions which we reviewed.  The more we've met with the doctor, the more I like her.  She doesn't beat around the bush, get's straight to the point.

Our hired help (the grandparents) took off fairly early.  They wanted to give us some time to talk about Nate's treatment plan and come to a decision.  The boys were in bed, and Christa and I spent a while at the kitchen table, going over the treatment plans.  Eventually, we broke out some scratch paper and mapped out the treatment phases to compare the COG 9904 and 9905 treatment plans.  We wanted to understand the arms better, in light of the info from the doctor.

Our tentative plan was to procede with the standard risk treament that Stanford follows, if you're not on study.  Apparently they use 9905 arm A.   Tomorrow would be a big day.

The word of the day is "bacon".  Last night, about every 30 minutes from 2am on, Nate would ask me "how many minutes until morning".  He had bacon on the brain.  I was laying with him so we wouldn't have to get out of bed to check on him every time he called for us.  Of course, it made for a long night.  In the morning, Christa made french toast and, you guessed it, bacon!  What a happy camper he is when he gets fed.

We have an appointment with Nate's oncologist tomorrow, so that we can get a bunch of questions answered before deciding on his therapy protocol.  That'll be over soon, which is good.  Talk about stress.  For better or worse, we'll have made a decision.

Christa headed to her OB appointment this morning, but they had to reschedule her.  The OB was in surgery and had 2 more patients in labor.  So, tomorrow morning at 8:30.  That's how it goes.  I'm planning on heading to work for the first time in 4 weeks.  Just a couple of hours to see everyone, and pick up my new laptop.  Gotta get back to contributing at work somehow.

Nate is definately looking a bit different now.  His belly is much bigger around.  His face has that tell-tale steroid roundness to it.  He's walking with a bit of a waddle.  And, his hair has gotten real thin.  Basically, he looks and walks like a middle age man with a gut.  But he's still my little buddy.

Another day of playing "what does Nate want to eat?".  He eats constantly.  But, he doesn't know what he wants.  So we play 20 questions.... "do you want a PB&J sandwich?  No.  Do you want a turkey sandwich?  No.  Do you want some ravioli?  No.  Do you want an apple?  Nooooo!".  I love to throw the fruit choices in there, because he should eat some good stuff.  But, he gets pissed... really pissed.  I've been told that if I bring him an apple, he's going to throw it at my eye.  He's getting very personal with his threats.

At the end of the day, he asked for funny face pancakes.  With bacon.  Kind of like some restaurants do on the kids menu.  We didn't have any bacon, so he got all worked up.  We're still loving how the steroids affect his emotions.  So, when Nana and Papa left, they stopped by the store and picked up some bacon so we'd have it in the morning.  We all knew that we better damn well have some bacon in the house come sunrise.

Nate is like a human vacuum cleaner... it's not right to see such a little guy eat so much.  It truly isn't right.  Just the drugs.  Who would have thought that sushi and pancakes went together?  (of course the sushi is actually cooked)

Kali came by and went for a walk with Christa.  That was great.  I'm glad Christa could get out and get a little excercise.   She's had so much demand on her lately, especially since I haven't been as much help.

Nate has really taken to playing card games.  Of course, that means one of us has to be playing it with him.  He's partial to playing "war" using a regular deck, he really likes his Uno game (it's the young kid's version), and a Tonka crazy-8's card game.  He likes to win, but he isn't getting too upset when he doesn't.  The hardest part is to hold the cards in one hand, while eating with the other.

Nate and Daddy playing cards.

Valentine's Day.  About 7am I started my calls for help.  I couldn't let Nate get sick from me, so I decided I would quarantine myself to the upstairs family room, and get someone to help out Christa with the kids.  I first called Nana and Papa.  They were up at Lake Wildwood, and I asked whether they knew what was up with Auntie Vicki and Auntie Reggie for this weekend.  I knew that Nana and Papa were headed up to Redding for Patty's baby shower up there, but I didn't know about the other aunties.  Nana didn't think they were going, so I called Vicki.  It was about 7:30  am on a Saturday, but hey, that's what family is for.  She said that she didn't have any special plans, so she would be able to come down and stay over at our house to help out.  So I called my mom back and she said that she and dad would head back to Santa Clara after they were done in Redding, so they could help out on Sunday.  Then Christa called her mom, and grandma Madie and grandpa Bob came over in the morning to help.

I headed up stairs, and watched TV.  And rested.  I hate being sick.  What I really hate is that I can't help with the kids right now.  I had been trying to be good, getting to bed early, just to make sure I would stay healthy.  But, I guess my body gave up the ghost.  So, here I am.  Now, I need to get healthy as quick as possible, so that I can be there to help on Thursday of this week.  Nate is due for a BMA (bone marrow aspiration) and an LP (lumbar puncture, also known as a spinal tap).  The last time we did those procedures, I helped restrain Nate, even though he was sedated.  I'm guessing it's going to be a long day.

Vicki and Alex showed up, and they were a big help.  Nate actually was hanging out with his auntie, playing card games with her and other stuff.  It was nice to see.

Funny story... Grandma went and got Taco Bell, cause that was what the prince wanted.  So they're pulling out his food, and it turns out they mistakenly gave hard shell tacos, not soft tacos.  Well, Nate blew a gasket.  I'm sure he's going to learn to swear soon.  Christa tried to convince him that she could just put it in a tortilla, and then it would be a soft taco.  He was having none of it, throwing a complete fit.  Grandma walked into the room and heard that they gave her the wrong thing.  So she gets mad, says "here give me those, I'm going back down there to make them do it right this time", or something to that effect.  Well, Nate quit his belly aching, and grinned like an imp.  I guess that was exactly what he wanted to hear.  

Today started out pretty well.  After Thursday's fun, we managed to get Nate to eat some food.  And, it stayed down.  That's a really good thing.  He wasn't really complaining about his belly hurting, no more than a normal day.  We had a pretty much normal day because of this.

Grandpa Bob came over in the afternoon.  This gave Christa an opportunity to run down to a trophy shop.  She had spoken on the phone with them about having a trophy made to celebrate Nate finishing the Induction phase of this chemotherapy.  They said that they would be able to get it done for Wednesday without any rush charges.  When Christa got back, we were able to do Nate's dressing change.  He started to have a fit, and complained (or screamed, if you prefer) a bit while the dressing was removed.  It actually came off really easy, so I think it wasn't any real pain, I think it was really Nate just pissed about being poked and prodded.  I got his caps changed and his lines flushed, so his line maintenance was done.

We also heard from Stacy, one of the nurses at the clinic.  Christa had called to clarify what protocol the doctor would want to use if we choose not to enroll in the 9904 study.  Stacy indicated Dr. Marina would want to use arm A of the 9905 protocol.  I have more reading to do to see what that entails.  I had already printed it out, but now I have to understand it better.

This evening, I started to feel like I was coming down with a cold.  I drank one of those vitamin-C packets that Christa likes, and we got to bed fairly early.  About midnight, Andrew woke up.  I was feeling crappy by then, and was starting to run a real low fever.  Christa tried to give him a bottle and put him back down, but he wasn't having any of it.  He wanted to be up, or something.  Of course, Nate woke up in this process also.  So, here we are at 1:30 in the morning, sitting at the kitchen table with AJ in his high chair, giving him a snack.  And he's busy playing peek-a-boo with us.  We got him back to bed, and this time he stayed, about 2am.  Around 6am (really, Saturday morning), I was running a fever of 101 and felt like crap.  I guess I've caught the flu.  That sucks, big time.  We can't afford to get Nate sick.

Clinic day.  We headed off to the hospital this morning, with Andrew in tow this time.  This is AJ's first trip to see where his brother goes.  Of course, he really doesn't care.  He just turned 1.  However, all the nurses got a chance to fawn over the little guy.  We figured we'll have to figure out how to manage our hospital visists by ourselves, not always relying on a babysitter.  Today was a good choice, because all we had were labs and a vincristine injection, so it should be a short day.  In hospital terms, that means probably only a few hours.

Everything went well at the hospital.  Nate's bloodwork came back, and his numbers were up.  His Hgb was solid, over 13.  His platelets were up to 96 or so, which was good.  His ANC was up over 400.  Last week, his ANC was 100 on Monday, 210 on Thursday, and now, a week later, was over 400.

On the drive home, Nate was talking about missing his friends from school.  He named several specifically, from both his current class, and some from last year.  He's still neutropenic, but maybe soon he'll be able to take a visit back to pre-school to see his friends.  His general stamina is definately down, and he's taking a couple of naps each day.

We went by the Wendy's drive through for some chicken strips and fries.  Nate's hunger is impossible to satisfy.  So, we got home and ate our lunch.

A little after lunch, Nate started complaining about his belly hurting... and this is when the day took a turn for the worse.  The pain was bad, and Nate was just screaming.  There was pretty much nothing we could do but hold him, and put on some cartoons to try and distract him.  After a while of this, he said he felt like he was going to get sick.  So, out came the buckets (which are strategically placed in the house), and it was a good thing.  He spent about an hour or so, periodically throwing up.  Not much fun at all.  Sometime around 4pm he fell asleep, with his head on my leg.  For the next 2 hours, I sat there, trying not to move (luckily I had the remote control and there was hockey on).  Eventually, I couldn't handle my leg falling asleep, so I moved him and he slept for another hour or so.  

He spent a couple of hours awake, and I managed to get him to eat a couple of crackers, and sip a little apple juice.  He took his medications, but about 15 minutes later he threw that back up.  Poor guy had nothing in him.  I took him to bed, and lay down with him.  He pretty well slept the whole evening through.

Because he was feeling so bad, we missed our dressing change for his Hickman catheter.  And his evening meds came back up.  Not the best of days.

We've spent the last few days trying to keep up with Nate.  He's not that physically able, but his mind is active.  The steroid makes him a bit restless, and he doesn't stay focused for very long.  He's keeping us busy, getting things out for him to do just in time for him to switch to something new.  That, and trying to keep him fed.  I'm going to hang a sign around his neck that says "Feed Me".

I've been doing a crash course in leukemia treatment protocols.  The doctor has asked whether we want to be included in a clinical study for treatment of leukemia.  This is study COG-P9904, treatment for low risk ALL.  It turns out that Nate's leukemia has a genetic characteristic, the TEL/AML1 translocation, that scientists believe makes it easier to treat.  This comes from prior treatment (backwards looking study), where the success rate of kids with the TEL/AML1 translocation was higher than those without.  However, all of those kids were treated using a standard protocol.  So, this new study is to determine whether kids with TEL/AML1 can be treated with less intensive therapy (and less toxic, meaning less side effects and late effects).  If we choose to enroll, Nate would be randomly placed into one of the arms of the study.  This could mean he would get a more "standard" intensity therapy, or he might get a less intense therapy.  

Our big concern, however, is that if he's treated with the less intense therapy, he might be more likely to relapse.  And, relapse is a very bad thing.  However, the higher toxicity of the standard therapy means that he would be at greater risk of developing heart problems, bone problems, liver problems, neurocognitive effects, etc.  How do you choose?  And, yet, Christa and I will.  Because we have to.

Continue to learn is the best I can do.  We have to decide right around the end of induction.  We've got about a week.

Nate and I headed off to the Day Hospital at LPCH for a blood transfusion, while Christa stayed home with AJ.  This is the first time only one of us has gone with Nate to the hospital.  He was feeling pretty good (it's all relative).  I packed up a couple of movies, lunch, and a few toys.  After his vitals were taken, he got a bed.  We got him set up in his room, with TV to watch a movie on.  We shared with a little girl, of probably 8 to 10 years old.  She was pretty nice, and spent a while playing video games.  The nurses got Nate's transfusion blood hooked up to his central line, without much fuss at all.  I'm so happy we decided to do the central line.  It means that he doesn't have to get IV sticks or blood draws using a needle.  Of course, we have daily maintenance on the line, but that's not very difficult.

We watched our Hercules DVD, and did pretty ok.  Somewhere in there Nate wanted me to go to the cafeteria for cheese pizza... I got down there, and there wasn't any.  So, I grabbed a bagel and some cream cheese, and headed back upstairs.  The nurses are very nice, and kept an eye on Nate while I was fetching food.  I think they've seen that once or twice.

Towards the end, Nate was getting a little tired, and he definately wanted to go home.  It was good that everything went smoothly, so we got out on time and headed home.

Clinic visit day.  The day started off pretty good.  Nate woke up complaining that he felt like he was going to throw up.  But he didn't.  Then, he got up and was in good spirits, helping Christa make pancakes.  After eating, he started complaining about his waist hurting again.  Lots of crying out.  I don't think his digestive system is back to normal yet.  

Grandma Madie came over to watch Andrew while we headed off to the clinic.  At our appointment, they took blood for Nate's labs.  Lynn checked Nate's belly to see if there might be something causing trouble.  She didn't find anything obvious, but she wanted us to see Dr. Marina just to make sure nothing is being missed.  However, the doctor was not available for while, so we headed up to the third floor to check out the inpatient kid's play area.  Unfortunately, Nate had gotten the idea that he wanted cheese pizza, and he's relentless these days when it comes to food.  We would have liked to have him hang out a little more, and become familiar with the place.  We want to take some of the fear out of the place, because future phases of treatment will require admission to the hospital.

We ended up down in the cafeteria, eating.... you guessed it.... cheese pizza.  Not the best choice if your stomach is troubling you, but Nate is nuts for food.

His labs came back and his numbers were down.  We're gonna do a transfusion tomorrow, bring his hemoglobin back up.  But, that'll mean a trip to the day hospital, and at least 4+ hours hanging out there.  Dr. Marina checked out Nate, and her opinion is that he just has gas in his intestinal tract.  They ran another blood test to check for a potential pancreatic issue, that might account for the stomach pain.  But, it ended up coming back negative.

When we got home, Nate watched a movie, and we got some time with Andrew.  By 8pm or so, both kids were asleep in bed.  Another day down.

Today was a bit of a struggle.  Nate was complaining that his stomach hurt, at different times.  However, he just seemed real emotional, and spent a lot of time crying without being able to say why.  He spent a good while watching TV, took a nap around noon, and then spent more time watching TV.

I ran out and got 4 new tires on the van, since it really needed them.  Driving up 280 on Monday in the heavy downpour made me realize I needed to do it soon.  My dad went with me, and while they put tires on the van, he and I had some noodles for lunch.  And a vietnamese iced coffee.  It was nice to get out for a while.  

When I got home, I spent time playing with Nate.  It was Transformers vs. Bionicles.  He was the Transformers, and somehow his guys always won.

Nate woke up some in the middle of this night.  Christa went in and comforted him, and ended up sleeping for a while in his bed.

Whooo hoooo!!!  We have output.  

Nate slept pretty well last night.  He woke up in the middle of the night with a bad dream (I'm sure someone was telling him they'd have to poke him 2 times, based upon some words he mumbled), so I crawled into his bed and slept with him.  He needs a bigger race car bed.  At least it's a twin, and not one of those little toddler beds.  When he woke up this morning, he called for me to take him into the bathroom.  He sat down on his little potty (from back when he was potty training so long ago), and managed a small bowel movement.  

After a little bagel and Jamba Juice (ordered with a double-dose of fiber boost), Nate had another movement, and now things are working good.  It's amazing how happy that can make a parent!  We're hoping this is the end of the stomach pains from the constipation.

The day ended up being a good one.  Probably the best in a week or so.  No hospital visits, everything working kind of according to plan.   Nate's even taking his medicine fairly well.  It's amazing that if the only thing that happens is the outburts and manic behavior caused by the steroids, then this is a good day.

Christa managed to go work out for a bit.  She wants to keep her strength up, which will help with her pregnancy.  And, the workout should help relieve some stress.

Nate cried out several times during the night, and I ended up comforting him in his bed.

Still constipated.  We talked with Lynn at the clinic this morning.  She wanted us to bring Nate in for a x-ray to check his abdomen, and of course the usual blood work.  The x-ray looked ok.  She said there was a lot of stool in there, but it wasn't too impacted.  So, she gave us a maximun dose of magnesium citrate for Nate, 2.5 ounces.  We mixed it into a glass of cranberry juice and managed to get him to drink the whole thing with some lunch.  He's still nuts for chips.  

We didn't get any production from the magnesium citrate.  So, Lynn got a ducolax pill for Nate to take.  These have to be swallowed whole, so Christa managed to find a jello at the hospital cafeteria.   The guy had to find one in the back and get approval from his manager.  Who would have thought that it's difficult to find jello in a hospital?  We put the pill into a spoonful of the jello, and fed it to Nate.  Ooops... he crunched the pill with his teeth before swallowing it.  A few minutes later Nate said he felt like he was going to throw up... and that's exactly what he did.  I had the garbage can in the waiting room handy for it.  I thought he was done, and we were trying to get into the back area and get a bucket, and he managed to throw up on the floor of the waiting room.  Oh well.  Poor guy.  

After he was done throwing up, Lynn sent us home, telling us to give him  more MiraLax, and another full dose of magnesium citrate.  We managed to get those into Nate before he went to bed.  Another day down, and still no output.

Nate's constipation has persisted.  He was up late last night (1:30 in the morning) with stomach pain.  We're dosing him with magnesium citrate oral solution.  The doctor says this is the more effective of the over the counter laxatives we can give Nate.  He's not having much fun with this, though.  More medicine is not what he's looking for.

Nana came over in the morning to help out with Andrew, because Nate has been hurting and wanting Mama and Daddy.  It's good to be loved.  Nana gave Andrew a bath, which he always loves.  After his morning nap, Nana took AJ over to her house, fed him lunch and kept him until it was time for his afternoon nap.  Papa came back over with AJ then, and we put him down for his nap.  

We spoke with the doctor and he wants us to give Nate phospho soda also.  This is a saline laxative.  We're alternating doses of the magnesium citrate.

Nate is hungry, but we're not letting him have anything but fruit.  He's quite mad about that, and letting us know.

We spoke with the doctor again, to find out what to expect if we don't get anywhere.  He said that if Nate hasn't had a bowel movement by tomorrow, then he might have to go into the day hospital.  They would then have to put a feeding tube down his throat to give him something called "go lightly".  Apparently, it's what they use to prep patients for intestinal type surgeries.  It apparently is very effective at moving things.  But the volume that is required just can't be swallowed by kids.  I guess it's very hard for adults to get it down.  He also said let's double our dosage of the magnesium citrate.

Nate's got a little gas going, but no BM yet.  I'm determined to keep Nate at this all night long if required, waking him up every 2 hours if that's what it takes to get things done.  I really don't want him to have to go to the hospital tomorrow.