Day +18...ESCAPE!!



What a whirlwind week it's been!  Monday morning the doctors did their rounds and came in to see Nate.  Nate was doing fantastic and because his fever had disappeared before the "heavy duty antiviral" was really even given, they felt pretty confident that his fevers probably had been benign and not due to the virus that showed up in his blood work.  They said that he could finish out another day of the antiviral and go home Tuesday morning!! Incredible!

I began packing up the U-Haul's worth of stuff that we had acquired in our little room over the last month.  I took several loads down to mine and my aunt's cars on Monday night, so we could make a quick exit on Tuesday morning as soon as they said, "GO"!

 Tuesday morning, Nate finished up his meds, we went over discharge instructions, finished packing, got unhooked (finally!), put on some real clothes, and hopped in the wagon...ready to go!

First, the staff had a little surprise departure celebration planned.  Nate and I ran through the streamers, so excited to be heading HOME!  Mike Leach, from the Arizona Cardinals, and his wife were even there to join in the "party just for me" as Nate says.  There's even a little story about it on the Cardinals website.  I feel like I have been pretty good at keeping my emotions out of this transplant process, as much as possible.  I had one really hard day, out of 26, I thought I did pretty good.  I kept my head in the game and concentrated on taking care of Nate's needs from one moment to the next and tried not to get caught up in the big picture of the sad situation we were all in.  As we were packing up the room to go home and running through those streamers...I let the tears flow.  We still have so much further to go in this journey...so many more treatments to get through...but, this was a big one.  A big, scary one.  I was just so overjoyed to be mostly "on the other side" of this part of the treatment...that I let myself be consumed by the emotion of it.  Then, I had to explain to Nate that sometimes Mommies cry when we are happy...cause Mommies are silly like that.

Nate got to breathe fresh air (through a mask) for the first time in 26 days!  We hopped in the car and were on our way...well, then we had to turn back a few miles up the freeway to retrieve a forgotten suitcase (man, I couldn't get out of there fast enough).

 We headed to Lizzy's to get baby sister, Ellie, and to do a little playing.  Nate had SO much fun playing with his sister and cousins.  Remember, Nate hasn't even seen another kid for 26 days.  It was just so awesome to watch.  He was so excited to just chill with his brother and watch cartoons when Wes got home from school that he didn't even take a nap all day.  Again, this is a kid who's body has been put under so much stress in the last month that he could barely manage a walk across the room without needing a nap.  There's no place like home!

It was just the most incredible thing to wake up Wednesday morning to my whole family in the same place.  Ellie climbed in Nate's bed to give him good morning kisses and all three kids played with their "pet hospital" before Wes had to head to school.



Let me tell you a little story about the sweetest "almost 6 year old" little boy that I know.  It's not easy having a little brother with cancer and a baby sister...as the oldest kid, your needs always seem to come last...you can always wait.  I try to make sure he knows how important he is to all of us...I tell him every day how special he is...but it's still hard.  I still have to rely on him to be much more mature than his "almost 6 years".  Sure, he has his moments (don't we all?), but he takes all of this craziness in stride.  He cares so much for his little brother and is so incredibly sweet with him that it brings tears to my eyes several times a day.  He gets things for Nate when he needs them, plays gently with him, reads him books, carries Nate's TPN and pumps (which is too heavy for Nate to carry on his own) around the house so that Nate can walk around, and even "wrote" a very special song for his brother.  Thursday morning, I heard two sweet little boy voices over the baby monitor (we have the monitor in Nate's room).  Wes had gotten out of bed and gone straight to Nate's room to check on him.  They had a very cute conversation about where Nate wanted to go (to watch TV in the living room) and how he was going to get there (Wes would carry his TPN bag).  Then Wes helped him put on his shoes, because Nate is having a hard time walking without shoes on.  I just laid in bed, smiled and cried.  Even Ellie has been a sweetie. She found his blanket in the other room and brought it to Nate on the couch and laid it on top of him.



How has Nate been doing at home?  Spectacular, really!  He wasn't eating anything, at all, for the first few days...only water.  He would ask for every food on the planet, and I would get it for him, but he would just stare at it, or spit it out.  He started out getting TPN for 15 hours a day, for the first few days home.  Thursday, we went to clinic and all his blood work looked great.  He didn't need any transfusions, which is awesome.  Platelets are the last thing to recover and his platelets weren't normal yet, but not low enough to need a transfusion and they had been holding their own for almost a week.  They knocked his TPN down to 12 hours a day.  Friday...Nate started eating!!  He's still building up slowly, and still getting TPN at night, but I am so, so happy.  He didn't lose too much weight during the transplant (though, he still has so much he needs to gain) and we just hope that he can continue to gain and grow.  He has also developed a taste for chocolate milk (which I have been ,making with Carnation Instant Breakfast).  This is awesome because, before he would only drink white milk (with nothing added...I tried everything), and it's so nice to know that I can get some extra nutrition in him through his "chocolate milk".

He has been playing and playing and playing with his brother and sister and all the neighborhood kids.  When he first saw one of his favorite neighborhood friends, John, he "ran" the fastest I have seen him "run" in months and gave John a great, big hug...it was so sweet!  He is just getting stronger and stronger every day.  Our main challenge right now is getting his oral medication down him.  He throws up at the sight of it.  It just sucks to watch all that food we try so hard to get down him, come right back up.  We're working on it.  The only other challenge right now is keeping Nate at home.  He cried the other day because I wouldn't take him to the mall or Costco.  He just wants to be out in the real world like a normal kid.  We've had a really long talk about germs and he's such a smart boy, he understands so much.  He has been really good about wearing his mask and washing his hands to keep those nasty germs away.

We head to clinic again tomorrow afternoon  and will find out how all of his blood and electrolyte counts are doing.  They will make adjustments to his TPN...maybe get rid of the lipids, or maybe get rid of the TPN all together and just have him on IV fluids for a little while longer.  I can't wait to tell them that he is eating!  That's all I can think of for now.  Thank you to everyone for all your support through this process.  Thank you for the child care, meals, laundry service, pool service, and help clearing the clutter.  Thank you for helping us take care of Nate, Wes and Ellie and thank you for helping us take care of ourselves by giving us a break, visiting us in the hospital, checking in on us and making us laugh.  Thank you for the moral and emotional support and for all the thoughts and prayers.  Thank you for all the fun and uplifting notes, cards and packages.  You all know who you are.  You are angels on earth and we couldn't have gotten through this without you.

Day +14, +15, and +16

Remember that whole pep talk I was giving myself about counting my blessings and not getting down in the dumps.  Yeah...well, Friday was my time to get down in the dumps.  This life is hard and it is 24/7 non-stop, with no breaks.  Sure, we can breathe slightly easier from time to time, but it is nothing like the life we knew before and some times it gets to me.  We've been here for 3 weeks now (really, we've been here for 8 months now) and I'm tired of the hospital, I'm tired of missing my kids and my husband, I'm tired of asking for so much help from everyone...I'm just tired.  We were really hoping to be hearing the word "discharge" sometime this weekend...but then these fevers wouldn't stop.  Thursday, the doctors began grasping at straws and testing everything there is to be tested to try and find a source for Nate's persistent fever.  He had another fever at 8pm on Thursday night, but by the time the Tylenol came up from the pharmacy, the fever had gone away on it's own.  I took that as a good sign and made my mind up that we had seen the last of the fevers (positive thinking and all).  Shortly thereafter, word came from one of the bone marrow transplant doctors...Nate tested positive for a virus and they are starting him on a heavy duty antiviral.  A heavy duty antiviral that is hard on the kidneys...on top of the other 3 heavy duty antibiotics and antifungal that are also very hard on his kidneys.  I had a ton of questions, but couldn't get answers to any of them because I wouldn't get a chance to talk to the doctors until the morning.  Friday morning, Nate had gone the whole night without a fever (woohoo!) and I was able to talk to Nate's doctor and her opinion is that this virus can be scary for bone marrow transplant kids (probably not as much for the stem cell transplant kids), so they don't want to fool around.  She thought it was most likely the virus causing the fever and if the fever never came back that we could possibly attribute that to the heavy duty antiviral...possibly not.  Here's the problem, the heavy duty antiviral is IV only and therapy is anywhere from 1 to 3 weeks, which means we just bought ourselves another 1 to 3 weeks in the hospital.  I was devastated, the thought of doing this another 3 weeks was just too much for me.  I headed home that afternoon, hoping to recharge and renew and be ready to fight another week.

Wes had opening day for baseball on Saturday, with team pictures, a hit-a-thon and a double header.  He smiled a big gap tooth smile for his pictures, won a prize in the hit-a-thon and played a great game with some great hits and fielding.  After everyone took a good nap, Wes and I got started on a surprise we've been planning for Nate for a few weeks.  Then Jen and family came over for dinner and to make some Super Nate capes for the GCU Run to Fight Children's Cancer next Saturday.

We got all our stuff together, bright and early this morning to head down to the hospital to surprise Nate before he laid down for a morning nap.  Wes, Nate and Ellie have not all been together for 3 weeks now...Nate hasn't seen any kids at all for 3 weeks.  I know I'm fun and all...but kids need to play with kids.

Wes got the idea from a book to hold a sign to Nate's window telling him that he misses him.  Nate's window is 7 floors up...so, we knew that would be a little tough.  Instead, we made a sign big enough for Nate to see from the 7th floor and took it to a place that I knew Nate could see from his window.  We also got a bunch of balloons and released them, so that Nate could watch them float by his window (if you look closely in the window on the bottom left of the picture above, you can see Nate's bald little head watching the balloons float away).  We wore our Super Nate shirts and capes and all the kids thought it was great.

Nate had a great, fever free, weekend with Daddy.  They have taken him off of all his antibiotics because they weren't treating anything and they were all hard on his kidneys.  They took his pain pump away last Wednesday and he has done great without any pain medication.  The rest of his meds are being weaned and switched to oral.  They heavy duty antiviral will stay on at least until tomorrow.  They will repeat the viral test and hopefully decide to switch to an oral antiviral.  It that happens, we are looking at possibly going home by the end of the week...hopefully.  Nate is happy and cute and willing to get up and walk and play and begin regaining his strength.  There aren't too many places to go when you're stuck in this room, so we can't wait to get him home where he can "run" and play.  The only thing left is eating...which is a big thing...but, we are hoping this will improve when he is home too.  Nate's taste buds have been destroyed, so nothing tastes how he expects it to...everything tastes "yucky".  Once we get home, we will have so many more options to offer him...at any time of day.  He will probably come home on some sort of feeding device (IV or tube) to get him through until he gets more used to his "tasters" and starts eating again.  Getting him to eat again is not a challenge I'm looking forward to, but it is what it is and I'm up for it as long as it means my boy can come home.

  The house is ready, of course there is always more clutter to be cleared, but the rugs are cleaned, everything is sanitized, air filters are changed...all we need is our Nater.



Day +10, +11, +12 and +13

 First, I want to apologize for the lack of updates.  I don't mean to worry anyone.  I am tired...mentally, physically and emotionally.  Sometimes at the end of the day I just don't have the energy to recount the day's events.  We are all still good...just tired.  Nate's been in the hospital for 3 weeks now and we are all just more than ready to go home and all be together.

This week has been good...and frustrating.  Nate started off the week in the OR to have his broviac (central line) removed and replaced.  Our favorite surgeon (Nate's only surgeon here at PCH) removed the month old broviac and placed a new one in the same spot that his original one was located.  He did this to minimize the number of scars he has, which we appreciate, not to mention that we far prefer it's location in the middle of his chest to when it was off to the side.

Nate has been getting better and stronger every day.  His ANC has been skyrocketing, day 10: 3162, day 11: 8127...stopped G-CSF shots (to increase WBC)...day 12: 10,920, day 13: 8512.  Basically, this means that his cells are fully engrafted and his immune system is starting to work and heal his little body.  The only problem is that he keeps getting fevers.  Normally, the fevers stop when engraftment occurs.  This hasn't happened for Nate.  Nate engrafted a few days earlier than most kids (we knew he had super cells!), so one possibility is that his engraftment occurred early but the benign fevers are hanging around the "normal" amount of time.  The other possibility is that he has some infection hiding somewhere that is not showing up in cultures or being treated by the multitude of antibiotics he is on.  While we hope and pray that the fevers are due to the first possibility, we have to assume that they are actually due to the second possibility.  We can't take any chances, because if there is a hiding infection somewhere, it could literally kill him if left untreated.  So, this week has been full of antibiotic changes and additions and cultures and tests too look for and treat any possible infection.  If his fevers continue (his last one was at 6am this morning), they will do a head to toe CT scan this weekend to rule out anything hiding.  I'm really praying that we have seen the last of these fevers.

Other than that, Nate is doing spectacular.  He has some energy back and is willing to get up and play a little.  We played baseball this morning, he rearranged his floor, alphabet puzzle a bit and we looked out the window with binoculars.  He tires out pretty quickly and is sleeping it off now, but it's so nice to see him actually want to get up and play, even if he is wobbly.  Man, we had SUCH a rough December and January.  I was so fearful that we were headed right back there after this transplant.  I am so grateful to already see him so far ahead of where he was then.  He is not eating yet, but is drinking a decent amount of water.  He keeps asking for food, but everything tastes "yucky" to him because the mucositis destroyed his taste buds.  We keep telling him that his "tasters" are broken but they will heal up soon.  He is still getting nutrition by IV (TPN) and will probably go home on TPN and IV fluids for a while, until his "tasters" and stomach heal and until his kidneys are more out of the woods and he can get by with more normal (drinkable) amount of fluids...his fluid requirement right now is over 40 ounces a day.  Really, the fever is the only thing keeping him here.  As soon as that stops, they can start taking away antibiotics and we can go home.  We had hoped for Sunday or Monday...but, that doesn't really seem feasible now.  We will just have to wait and see when these fevers stop.  I'm still hoping for next week.

I'm going to get to work on the house this weekend.  Nate now has the same immune system as a newborn baby (all his immunizations have even been wiped out).  We have to make sure that everything is exceptionally clean for him, he has a special diet (including no restaurant food), and he can not be around big crowds for several months (about day +100), especially with the coughs and colds that are going around right now.  We would love, love, love play dates and visitors as we are home bound for the next couple months.  Please just be careful and don't come over if you think you or your children may have a scratchy throat or a sniffly nose.  Also, flu shots are a must until flu season is over (sometime in April or May)...and you can still get one if you didn't and would like to.

Getting the house prepared is no small feat, considering I'm not there to do anything.  Thank God for all our helpers!  Papa was there this morning to let the carpet and upholstery cleaners in.  My mom will pick up the dogs from the groomers for me tomorrow and will keep them at her house until we can get the dog doors installed.  The sweet lady that has been cleaning our house every couple weeks, changed her schedule around to come do a deep clean on Saturday, in case Nate can come home on Sunday or Monday.  I will work on more clutter over the weekend, take down and wash the drapes, replace the shower curtains, wash the front room couch cover and see what I can do about our moldy washing machine gasket (I hate our front loading washer)...the internet suggests bleach and a toothbrush, but I'm open to suggestions.  Whatever it takes!  We want our boy home.

Day +4, +5, and +6

I accidentally left my laptop at home and can't upload the pictures I've taken over the last few days with my camera, I only had this picture on my phone. I know it looks pathetic, but it pretty much sums up how Nate is feeling...like poop. He actually is trying to smile for Daddy in this picture. His mouth just hurts too much to smile well and his fever is too high to open his eyes much. My poor punkin'.

The last three days have brought a constant fever that does not fear Tylenol. His temperature has ranged from 101 degrees to 105 degrees almost constantly since Sunday night. Tylenol helps to bring it down a bit, but never really breaks it. The fever (and pain) causes his heart to constantly race. The lowest we have seen his heart rate in the last few days is in the 160's (normal is 70 to 110), but he is frequently running heart rates in the 180 to 190 range and even over 200. This makes him feel pretty yucky and exhausted.

The mucositis has gotten pretty bad. His mouth is sore, his saliva is thick and he has a little skin breakdown on his bottom. A scan today showed that his esophagus is pretty swollen and damaged from the sores. They are increasing the medication he is getting to help protect and heal his stomach and esophagus. His damaged esophagus could be a problem when it comes time to start eating again but we'll cross that bridge when we come to it. He is still sucking his pacifier (or at least holding it in his mouth) but he has stopped wanting to drink because putting anything in his mouth makes him throw up thick spit and blood.

All of his cultures are still negative, but he is on 4 antibiotics, an antifungal and an antiviral just to make sure they aren't missing any hiding bugs. The scan today showed a possible area of infection in his lung (the antibiotics will help with that) or it could be from inactivity (we are trying to get him up and blowing bubbles to help strengthen his lung). The scan also showed congested sinuses. They don't really think any of these things are the cause for the fevers (it is probably just due to his low counts), but everything is being covered by the antibiotics. As soon as he is fever free for 24 hours, they will start peeling away antibiotics.

Nate is on constant anti nausea medication, every 2 hours (two of which cause sleepiness), but I doubt the throwing up he is doing is really from nausea. His saliva is thick and gross, I think it sits in his stomach or esophagus for awhile and then just needs to come out. The throwing up is my least favorite part of this (I think it's Nate's too) because it is truly painful for him and I don't like seeing the blood that comes up with it. They are keeping his platelet levels fairly high because of the bleeding and damage in his esophagus, so he is getting platelet transfusions every day. On a side note...they had trouble getting his platelets the other day because the blood bank was out. So, go donate your platelets if you can, there are kids (and adults) waiting for them. He has also had a couple blood transfusions.

Nate has a morphine pump with a constant drip and a button to push if he needs a boost. He has done so well and doesn't seem to be in much pain, except for the throwing up. We really haven't had to push his button much. He is SUCH a tough cookie! Most people I know whine more when they have a cold than Nate has through this whole process. He's mostly been sleeping off and on, waking up every once in awhile to say something cute. I think I have to be careful or one of the doctors or nurses might just take him home, they love him so much.

This all probably sounds pretty bad...and it is...it sucks watching your baby go through this. We are all doing ok though. This is all to be expected and really is going much smoother than we really expected. Really, it could be much, much worse and more complicated. We are very happy and grateful that Nate's transplant process is pretty "text book" at this point.

Nate had a pretty good day. His blood work showed 6 white blood cells this morning. It's not much, but it means that those little cells are starting to do something. Come on super cells, GROW! The doctor thinks that Nate will start feeling better around Sunday. After hearing about Nate's lung today I decided we needed to get him up a bit. I hated to do it because I would just want to sleep too, if I felt like he does...but it had to be done. I had him sitting up and blowing and popping bubbles. We played some games, read some books with his Tag Jr. pen and painted a rock. Then the physical therapist came in and we actually had him walking around the room, bending and climbing...without any whining and crying. Such a strong boy!

I had kind of a rough day. Last night I found out that a little boy named Ben, who we see around the clinic and the hospital, passed away after fighting a very rare cancer for several years. Then, I woke this morning to the news that RJ also lost his fight last night. These were the first babies that I "knew" who have passed away since Nate was diagnosed. It hit me pretty hard. It's just too much. I haven't even written anything to RJ's parents yet. I don't know what to say. I'm sorry just doesn't cut it. I know there are no words that will comfort them right now. I pray that God gives Ben and RJ's family a peace that surpasses all understanding.

Day +1, +2 and +3

I headed home for the weekend with Wes and Ellie again, and Daddy took great care of Nater.  Nate got his first fever on Friday night and they were able to break it with Tylenol.  Then began the familiar cycle of fevers and now mouth sores.  So far all cultures are negative, which is a good thing, but they will continue antibiotics and daily cultures until his fevers stop.

I had a great weekend at home with the kids.  I had a few very sweet helpers (thank you ladies!) come over on Saturday morning to help kick off "Operation: prepare the house for Nate's homecoming".  Our house has become hopelessly cluttered over the last 7 months as my cycle of clearing out kid's clothes and toys has come to a complete hault and we seem to be acquiring more and more stuff.  I have been home so little and when we are, I either spend my day by Nate's side (when he's not doing well) or we are off seizing the day (when he IS doing well).  Now, I've always lived by the old poem, "The cleaning and scrubbing can wait till tomorrow
But children grow up as I’ve learned to my sorrow.
So quiet down cobwebs; Dust go to sleep!  I’m rocking my baby and babies don’t keep.",

but our house needs to be as clean as possible for Nate's homecoming.  So, we got to work.  We got a good start on Saturday and I continued to work in to the night after everyone left.  Wes and I tackled his room on Sunday morning and by the middle of the day, we had gotten a lot done but it looked like our living room and hallway had exploded and there were still pieces of toys scattered everywhere.  Then Chris mentioned that Lou Lou offered to stay the night at the hospital with Nate.  I was really missing him by then, but knew that this would give Chris and I some time to complete the work I had started.  Plus, we would actually get to spend some time together and sleep in the same bed!  We still have much decluttering to do, but I feel like I can breathe a little easier knowing that we got through the kid's rooms and craft area and through all of their toys and clothes!

Today, I had lunch with Wes and Ellie then headed to the hospital.  Lou Lou had taken great care of Nate, as always.  He's feeling pretty yucky right now.  He has had a fever all day long that decreases, but won't really break, despite fluid and Tylenol.  His heart rate has been running super high all day because of it.  He got some blood and his heart rate decreased a bit, but is still running high.  He is having some mouth pain and is starting to throw up mucous.  He was started on a pain pump today.  I'm hoping that the mouth sores do not get much worse, because that is really one of the worst parts of this.  I hate to see him in pain.  Nate had a turn in the play room today and made two, short trips in the wagon.  He doesn't have enough energy to do anything more than stand for a few moments while getting showered or weighed.  He is such a sweet, strong boy.  He is in good spirits and is still drinking.  He is just very tired and sleeps most of the day on and off.

I hate to be away from him but know that my weekends with Wes and Ellie and my Wednesday at work are really good for both of us.  I feel positive and strong.  This is not easy to do when you watch your baby suffer like this.  Picture your child's worst flu (with vomiting, diarrhea, fevers and sore throat) times 100...for 7 months (with a few breaks).  It's exhausting and depressing.  It's hard not to get sucked in to his pain, but I can't.  I need to stay happy and positive, so that he knows it's going to be ok.  I can't look back and I can't look ahead too far.  I have to stay in the moment and help him get through this moment and on to the next.  Soon, we will be over this hump too.

This weekend, Nate said to Chris, "I would like to take all my medicines so I can get better and go home.  Then I can go wear underwear like Wesley, because I don't want to wear diapers anymore.  I'm a big boy".  Oh man...my poor boy.  He's getting so big and smart.  He's starting to realize that this life he lives is not a normal life for a three year old.  How am I going to explain to him that we still have a good 8 or 9 months of intense treatment to go?  Radiation every single day, probably with anesthesia.  Then, on to week long hospital stays again for antibody treatment which causes so much pain that it may end up being the worst treatment of all.  I guess I will just have to explain it all to him...one day at a time.

Day 0: Transplant Day

 The early morning started off a bit rough, with Nate and I being woken up every hour for labs, weight check, and a finger stick to verify a low glucose from his labs.  He then started screaming for red juice, which I couldn't get for him from the cafeteria because it was 3am and the cafeteria was closed.  The PCT (patient care technician) said she would go down and find him some.  Honestly, I was in a sleep deprived, half awake stupor.  I probably mumbled something and laid back down, hoping Nate would fall asleep and stop screaming for juice.  I'm not sure where she got it, but a few hours later when they were getting the finger stick, Nate had some red Gatorade that he was slamming.  After barely eating or drinking anything at all yesterday, he woke up dying of thirst and drank a ton of "cold cold water".

I woke up pretty bleary eyed after a night of half sleep and not really knowing what was going on.  Then I remembered...transplant day!  One of Nate's premeds was a HUGE syringe of oral Tylenol...ugh...oral meds are just not going so well right now, and it's pretty important for him to keep it down.  I've learned over the last couple days to give him a drop...he will throw up...then I can hopefully get the rest down.  Luckily, it worked.  Nate had been asking for ice cream and went to town on some chocolate while he waited for all his premeds to be infused.

 Everything always runs a little behind and at 11:30am, all his premeds were finished, Nate was hooked up to all the monitors and they were given the go ahead to thaw Nate's stem cells.  The small bag was taken out of the portable deep freezer, thawed in a warm water bath, drawn up into a syringe and infused through his central line.  The infusion took 15 minutes.  The bag was washed and the wash was infused...then a flush...and done.  Nate did awesome.  Most kids puke when the cells are being infused because the preservative smells (and tastes for the kids) really bad.  It has been described as a creamed corn or garlic smell.  The nurse told me to be ready for Nate to throw up, especially because he has been so nauseaous the last couple days.  I had Nate suck on a sucker during the infusion and he didn't even flinch.  His vitals remained stable through the whole infusion and he did great!  I also could not smell anything!  Apparently, some people can smell it and some can't.  The nurse had told me that she can't smell it, but it gives her a headache.  Sure enough, right at the end of the infusion, I started to get a headache...weird.  Even weirder...Chris got to the hospital tonight and imediately sent me a text saying that the whole room stunk!  The preservative is excreted out of the lungs, so Nate's breath will smell like creamed corn for a few days.  I would say that it's too bad for Daddy that he has the weekend shift and he can smell it...but, he likes creamed corn. :)

Nate fell fast asleep towards the end of the infusion and slept hard for several hours.  He woke up a little goofy and hungry.  He actually ate much better today than he did yesterday.  They changed his anti-nausea medication and added a third one, so that he will be getting something every 2 hours instead of every 3.  The third medication makes him goofy, but if it stops him from throwing up and makes him want to eat, it's worth it.  Tonight they started TPN (IV nutrition), he received his 1st of three more doses of palifermin (to help decrease mouth sores) and started his daily Neupogen (to increase white blood cells) shots again.  His blood work this morning showed that his ANC was zero (no immune system), but his red blood cells and platelets were stable.  They will check every day and give him transfusions as needed.  Over the next couple days we expect fevers and mouth sores to start showing up.  We will just take each day and challenge as it comes.  Come on super little stem cells...multiply, divide...do your job, we're counting on you!