Super Nate and His Trusty Sidekick

Ok first, let's talk about this drawing for a minute.  Isn't it amazing!!!  My cousins have a friend who is an amazing artist.  His name is Danny Beck and some of what he draws is "comic book style".  I think my cousin said that he has professionally drawn for World of Warcraft.  I guess they all decided that they wanted to see what Super Nate would look like on the cover of a comic book.  My cousin said that the artist wanted to try and draw Nate as he may see himself when he thinks of his alter-ego.  They presented Chris and I with a framed print of this, the other night.  What could I do but cry?!  It's so beautiful!  Softie Bear as his sidekick!  So brilliant!  I just had to post it for everyone to see.

Unfortunately, Nate is not seeing himself as so super right now.  I keep telling him how strong he is and he screams at me (in his high pitched scream that is used when he is really, really excited or really, really pissed off), "I AM NOT A STRONG BOY!!".  Ok...sometimes you just need your mommy.

His inner Super Nate is of course prevailing and he is improving.  Lou Lou stayed the night with Nate on Tuesday night so that I could have Christmas with my aunt, uncle and cousins and I told her that her job was to keep him fever free.  I got there on Wednesday morning and he had been fever free all night, had an ANC of 60 and had taken a bite of a cracker!  Hooray for Lou Lou!

This slow process is hard for me, because I just want him to be better yesterday.  I know it took him several weeks to get here and may take several weeks to recuperate.  The only problem is that he doesn't have several weeks until he is checked in for his stem cell transplant.  We haven't been given a date yet, but it will be soon and he needs to be as strong as possible.

He is skin and bones and has absolutely no desire to walk.  When I say no desire, I mean he throws himself to the ground and screams at the top of his lungs if you make him try.  We are working on it.  Right now, he can't leave his room so there really is no motivation to walk anywhere anyways.  I'm hoping being at home will give him motivation to get up and playing.

Yesterday, the doctor said that we would be here through the new year, because it would take them that long to get him off all of the antibiotics they have him on and to switch him from the TPN (IV nutrition) to the NG tube (feeding tube that goes from his nose to his stomach).  Really, I was devastated.  I try my hardest to stay positive and think positive and roll with the punches, but the thought of ringing in the new year here makes me sick to my stomach.  I know it's stupid and "it's just another day", but I can't shake this feeling in the pit of my stomach that it's a bad omen to start the new year in the hospital...even if, truly, I don't really believe in such things.  Dammit, he was here for Christmas, can't we get a break?!  I told her that we had really, really, really hoped to have him home Saturday.  She said she would see what she could do, but she wasn't making any promises.

This morning I woke to Nate screaming "BLOOD!!".  We both got to start our day with the pinching of two bloody noses...which we hate.  Kind of made for a cranky day.  His platelets were already on order, thank goodness.  We spent most of the day snuggled in the chair, watching various programs and dozing on and off.  Not too bad of a way to spend a day with your sweet baby boy, though I much more prefer chasing after him as he single handily destroys the house by playing with every toy in it.  We did get the great news that his ANC was 210!!!  I told the resident, "get us out of here by Saturday", as I waved my hand in front of her face Obi-Wan style.  Well, the force is strong with me.  If all goes as planned, we will be discharged on Saturday!  The anti-fungal was stopped today.  If he is fever free (so far, so good) they will stop the "big dog" antibiotic tomorrow.  If he remains fever free, they will stop the other two antibiotics and send him home with the oral antibiotic for c. diff. (the only infection that he actually tested positive for).

Then there is his nutrition.  He is so, so thin...scary thin.  He needs food.  He hasn't eaten in so long and his mouth is just now healing, so he is kind of scared to eat.  Every once in a while he will ask for something, but then decides against it.  Or, in a new turn of events, will chew the item and then spit it out.  I think his taste buds are all off too.  That happens with chemo.  He is also not drinking.  This is also probably due to the fact that he is getting all the fluid and nutrition his body needs right now through his IV.  He needs to be beefed up though, and we can't take a chance that he will get home and not eat or drink (though, we are hoping he will come home and pig out like normal), so they placed an NG tube today. They are currently building up his NG feeds and turning down his IV feeds.  At home, he will be given the chance to eat his meals, but if he doesn't we can give him formula.  At night he will get a drip while he is sleeping to make him extra beefy.  I was really hoping to avoid this tube, ever since we learned that it was a probability when he was diagnosed.  First, because he will hate it (and he does, he screamed like a banshee when it was placed and has pulled it out twice already).  Second, (I shouldn't be admitting this) I didn't want him to have another thing that made him "look sick".  Stupid and vain, I know, but it's the truth.  Now that it's in, I am very grateful for the stupid thing (though, Nate is not).  I'm happy knowing that Nate will be getting all the nutrition he so desperately needs in the coming weeks.  Always on a learning curve, we learned that insurance will not pay for the formula because they expect us to feed our own kid.  While I understand this logic, I don't know how much the formula costs but I bet it's a lot more than a PB&J, some grapes, yogurt and a cup of milk and I don't think they take coupons (yeah, laugh it up those who know me well).  Plus, last time I checked, we didn't have to pay for meals that we feed our kid...in the middle of the night.  You'd think they could pick up part of it.  Ah...insurance.  I am very grateful for our insurance though...it could be much, much worse.

So, that's my story for the day.  I am so thankful for the little strides Nate is making and I'm hoping for leaps and bounds once that ANC fully recovers and we are home.  I am so, so, so thankful that we should be home for New Years.  We found out today that kids under 12 will no longer be allowed at the hospital, unless they are a patient, until RSV season is over.  We knew this was coming and expected it to happen far before now.  So, I am also super thankful that Wes and Ellie were able to see Nate for a bit on Christmas.  I am also thankful for all of you.  Your kind, encouraging words and unending generosity help get me through the day sometimes.

Life is Hard

I know this is not news, everyone knows that life is hard.  I've had my share of hardships, but never knew exactly how painful and cruel it could really be until July.  Why does Nate have to experience this intense pain at barely 3 years old?  I have to believe there is a reason somewhere in all this, but I don't think I'll ever think it's fair to learn these lessons through a child.

I haven't written in awhile, for several reasons.  Really, I've barely been holding it together for Nate.  I haven't been in a good place and any post I wrote would be so chalk full of four letter words that my computer would probably have exploded.  I've also been so physically, mentally and emotionally exhausted that rehashing the days events was just more than my brain and heart could handle.  All I could handle was a few Facebook posts, pleading for prayers for my little boy.

Nate is sick, very sick, and has been for awhile.  His poor little body has had too much.  First, he had major surgery and just as he was beginning to recover and regain his appetite, he was hit with a nasty stomach virus.  He was not even given time to recover from the stomach virus, when his sixth round of chemo was started.  All this has resulted in a little boy who has not eaten more than a couple bites in more than 3 weeks.  He has lost more than 5 pounds, which is a lot on a 35 pound boy.  He vomited non-stop for almost 2 weeks, despite (and sometimes because of) constant anti-nausea medication.  He spent his 3rd birthday in his corner of the couch, propped up by pillows with barely enough strength to open a present.  He has barely been able to walk for more than 2 weeks and hasn't walked at all for almost a week.  He doesn't have to strength to sit, let alone stand.  Chris, Nate and I haven't had more than a couple hours of sleep in the more than 2 weeks.  We all...especially Nate...need a break.

Last Monday, I took him to clinic and despite his lack of energy, all his numbers looked good.  He was given some IV fluid and anti-nausea medication and we hoped he would start feeling better.  The real pain began on Wednesday.  He woke up with what I assumed to be mucositis (inflammation of the mouth and GI tract all the way down to his rectum), because he had been through this before...when he had these same drugs for round 4.  He could barely talk or drink.  It was clear that his ANC had tanked and we prayed that he would not get a fever.  He was running warm all day, but I never got a temperature greater than 99.8. 

Thursday morning, he was warm again and it was time for his clinic visit.  He was very tired and lethargic, but he also had not slept at all the night before.  We were a little late because he had vomited all over both of us as I was carrying him to the car.  We had to wait in the waiting room for a while and by the time he got in to have his vitals checked, he had a fever and his blood pressure was very low and heart rate very high.  His body was clearly under a massive amount of stress.  His blood was drawn and when his ANC came back as zero, they began to move quickly.  When you have a child going through chemotherapy, with no immune system, a fever and a system that is under stress, they automatically assume he is septic.  Blood cultures were drawn, fluid and antibiotics were started and he was admitted to the hospital.

The past few days in the hospital have been frustrating and tiring.  He keeps spiking fevers several times a day.  Two nights in a row he had fevers above 104.  They initially start with 2 antibiotics and add a third (big dog) antibiotic if cultures come back positive or if fevers keep coming.  He was started on the 3rd antibiotic because of the fevers, but his cultures are all still negative.  Next they look at the poop.  Especially because he has been having bad diarrhea.  The doctor ordered a stool culture on Friday and he had some big poops on Friday, but the culture didn't get done.  Saturday, his diarrhea was so watery that they couldn't get anything to do a culture.  Finally, Sunday morning he had a poop that they were able to culture and it came back with c. diff., a common infection for kids on chemotherapy to get (Nate has had it once before).  This was actually great news because we now had a possible explanation for the fevers.  He was started on a 4th antibiotic which is given by mouth and is specific for c. diff.  Since starting this antibiotic last night, we have seen some improvement.  He is still getting fevers, but they are much more low grade and he is a little more perky.  Probably because the fevers have been making him feel like crap.

The fevers are still no good though, so tomorrow we think they will be starting a fungal protocol.  He will be started on an antifungal and will get a CT scan of most of his body, looking for a fungal infection.  The problem with the CT scan is that it could show a false negative, meaning there could be a fungal infection that doesn't show up on the scan...so, they have to start the antifungal anyways.

We are also discussing his nutrition, because until his ANC comes back up and his mucositits heals, he will not eat anything.  They may start him on TPN (IV nutrition) tomorrow.  All this means that it may be a long time before he is able to come home.  The more things they put him on, the more things they have to be confident they don't need and can pull him off, before he can come home...even when his ANC comes back up.  Unfortunately, he may not need any of it.  The only confirmed infection is the c.diff. and the medication he gets for that is by mouth and can be given at home.  Everything else is being given because they can't take a chance that he has an infection hiding somewhere.  His body can't defend an infection and it would kill him.  We are desperately hoping to get him home by Friday so that we can turn our New Year's Eve and Day in to a 2nd Christmas Eve and Day, just for Nate.  We also just can't wait for him to be happy and feeling good again.  That just can't come soon enough.

Christmas was hard...that is why I want a second chance at it.  We had to do our best to make it special for Wesley...but it was not easy to paste on a smile when you are only getting 2 children ready for church and filling 2 stockings.  All of our family took turns at the hospital so that Chris and I could be everywhere we needed to be for all of our kids and families, and we couldn't be more grateful.  Nate mustered up enough energy to open up one present and to smile for a picture with Santa, but honestly, he couldn't give a crap if it was Christmas or not.  He was in pain and just wanted it to stop and for everyone to leave him alone.  He's pretty pissed off and so am I, so how can I blame him.

Instead of listing all the things I'm pissed about (though the above gives a pretty good description), I will list all the things I am grateful for.

1.  Strength from God himself.  I am mad and sad, but I am strong right now.  I prayed for this strength and I know it comes only from God, because otherwise there is no way I would have enough strength to move.

2.  My babies.  Wes and Ellie are healthy and Nate may be in pain and stuck in the hospital, but he is here with us.  There are many, many children who are not.  Way too many.

3.  Surgically cancer free.  I look at Nate and the pain he is in and I am beyond grateful that the problems he is experiencing are purely treatment related.  There are many children who are in much greater pain because the cancer is winning.  FU cancer!

4.  Spectacular hospital staff.  Nate has had the privelege of being taken care of by some really spectacular people.  Everyone at the clinic is awesome and our clinical nurse coordinator is the best.  We also have a favorite nurse at the hospital who happened to be Nate's nurse for several days of this hospital stay, which has truly been awesome.  I want to write an entire blog post about how awesome this nurse is, but I want to ask their permission first.

5.  Our family.  Really, we are so, so blessed.  Taking care of us and our children, sitting all day and sleeping at the hospital, wrapping gifts...everything.  I don't even know where to begin.

6.  Big private rooms.  It may seem isolating at times, but we never experienced the old building and I know that this has to be better.  I was able to bring all of our family's presents to the hospital to wrap while Nate slept, it was quite a sight.  There's no way I could have done that in the old hospital.

7.  An empty hospital.  The 7th floor was really more empty than I had ever seen it on Christmas Day. Someone from Hope Kids came for a visit and to bring a treat to all the Hope Kids who were stuck in the hospital.  She said most of the kids that were supposed to be there had gone home.  I am so happy that they were able to get so many children home to be with their families on Christmas Day.

8.  Nate's age.  Nate's age and stage of development has made a lot of things easier with this cancer treatment.  One example is Christmas.  Nate has absolutely no expectations for Christmas.  He doesn't know what day Christmas is and he doesn't remember our traditions.  We can do anything for him on any day to make it super special.  I am so grateful that he was not in the hospital in pain...and depressed about missing a normal Christmas.  Just another year or two older and it's a whole different ball game.  Wesley had the seconds counted down to Santa's arrival this year.  So, I am grateful that we were able to give Wes the Christmas that he wanted and deserved and we will be able to give Nate something equally as special when he is feeling up to it.

I think I will stop there.  I am grateful for so, so many more things, but I need to get some sleep and get ready to fight another day tomorrow.  Thank you for keeping Nate in your thoughts and prayers...he really needs them right now.



Chippy Star Rocket

So, this whole Elf on the Shelf thing has gotten pretty popular.  I first heard about the elf's full story last year.  I was still adjusting to life with 3 kids and figured it could wait another year. Then, I knew that Nate would be old enough that both boys would be in to it.  I really wanted to do it this year, because this is the kind of stuff I love to do.  When we knew we were leaving for New York shortly after Thanksgiving, for an unknown amount of time, I knew the elf would have to wait until we got back, but I still had hope that he would be able to visit our house for at least a week or so.

Then, we found out that we would only be home for a couple days before heading back to the hospital for almost a week for chemo.  Bethannah was sweet enough to suggest having a second elf for the hospital and sent us a stuffed version of the Elf on the Shelf.  The problem was that I didn't have the original Elf on the Shelf with the book to explain his story to the boys.  I thought I could use our 2 days at home to get an elf and introduce him to the boys, the second elf could come to the hospital with us...then the stomach virus hit.  As you know, I gave up much hope of too many holiday festivities.

Yesterday, as I was home nursing Wes and Ellie back to health, Wes requested that we watch the Elf on the Shelf movie that had been saved on our DVR.  Apparently, he'd already seen it and knew all about the elf.  Then, after the movie, came the dreaded question.  "Mommy, do you think an elf will come to our house?".  Well, crap!  I told him I didn't think Santa would send an elf because our family is split up so much this year.  He looked disappointed, but took it in stride.  After he went to bed, I frantically searched the internet, trying to figure out how to get my hands on a stinkin elf.  Keep in mind that I am in the hospital with Nate, then can't really leave the house until after Christmas.  I thought maybe I could pop in to Target really quick on my way to the hospital, but all the Targets in the valley showed sold out (this elf is hot stuff this year).  I checked online but would have to pay a ton of shipping if I wanted it to get here enough days before Christmas to be of any use...the thing already costs $30!  I decided that this was just another thing we would have to give up this year.

Tonight, Nate and I were sitting in his bed playing, when our nurse told us that we has some visitors with a special delivery.  Standing outside Nate's room was a family, a mom, dad, a boy and 2 girls, one of them with a hat and IV pole.  They handed us an Elf on the Shelf doll and book set!  They had one for every single kid on the oncology floor!  Their daughter is fighting the same fight as Nate and they wanted to brighten the 7th floor a bit tonight.  Boy did they ever!  Nate and I quickly called Wesley on FaceTime, I read both boys the story and they worked together to name our elf...Chippy Star Rocket.  Both boys, especially Wesley, are very excited.

Our nurse said that the parents asked her to write a note to the kids "from Santa", explaining that he left all these elves and needed help delivering them to all the kids on the 7th floor.  How special is that?!  I'm sure that this family knew this would be a special treat for a lot of kids...but how could they possibly know what it meant to me?!  How could they know that it was a beautiful reminder to not give up...even on something as little (ha...get it...little) as an elf.  So, I wrote the family 2 letters.  One for the kids, and one for the parents, explaining just what this meant to me and our family.

Thanks to Bethannah, elf number 2 was all ready and waiting at our house.  So, Nate will wake up to Chippy Star Rocket in his new location and Wes will wake up to the second elf (who Chris and I named Lucky...it was hard enough getting one name out of them) and a note.  The note will explain that Lucky is a helper elf and that Chippy Star Rocket sent him to help Chippy keep an eye on Wes and Ellie while Nate is in the hospital.  We will make this a magical Christmas, some how, some way...with the help of the beautiful people around us.

Beautiful Words

I just heard Nate's oncologist say the words, "Nate is surgically CANCER FREE".  Now, we are not fooling ourselves.  The hardest part of Nate's fight is still to come, but we will REJOICE in these victories along the way.  The results from the surgical biopsies have come back.  The tumor from Nate's liver had clear margins, which means that the surgeon got it all!  He took 6 lymph nodes, one that was right next to the tumor and the 2 next to that one tested positive for neuroblastoma.  The 3 lymph nodes around those, came up negative.  These means that the lymph nosed essentially have clear margins as well.  All this adds up to the fact that Nate has NO DETECTABLE CANCER IN HIS BODY!!!!

That does not mean that it is not possible that there are microscopic bits of neuroblastoma hiding in Nate's body that can not be picked up by the current technology.  One neuroblastoma cell is too many.  That is why Nate must continue to fight and complete the rest of these terrible treatments.  We have faith and we BELIEVE that these treatments will do what they are supposed to do and Nate will continue to be CANCER FREE!!!



The Plague

New York City makes some hearty stomach viruses.  We all, all 5 of us, have it.  So does Lou Lou and my friend, Jen's, son Dane.  We have unknowingly exposed many other people.  I am so hoping that they somehow escape this...it is no fun.
I'll spare you most of the details, but Ellie was up from 8pm to 12am vomiting.  Chris just got her to sleep when Wes started at 12:30am and continued until 6am.  I guess they at least had the courtesy to take turns.  After I wrote the post last night, I realized that my dinner was not settling.  I went to bed right away, with the bucket near me. 

Nate's chemo started at about 11:30pm last night.  This round is 3 different chemo drugs and one of them is a 72 hour infusion, so he will be done at 11:30pm on Thursday.  We have every intention of bringing him home to sleep in his own bed when the infusion ends at 11:30pm.  He has not vomited at all...but still won't eat.  He had half a breakfast bar, a hot dog bun and a few sips of milk today.  It's just not enough.  The kid needs some serious protein after surgery and he won't even drink his beloved milk.  It's so frustrating.  He may be headed for an NG tube.  No one has mentioned it, but I have it in the back of my mind.  It really wouldn't be the worst thing in the world, but I know he will hate it and I'm afraid he will yank it.  He just needs to start eating.  It's hard because he never feels like eating a ton until his ANC drops and recovers, which will be a couple weeks from now.  He just doesn't have the stores right now to make it that long.  Tomorrow, I will bring him a smoothie (with protein) from his favorite smoothie place, Paradise Juice, and hope he drinks it right up.

Today, Papa sat with Nate so I could come home to care for Wes and Ellie.  Chris went to work, but was home by 2pm hoping that lack of sleep was making him feel bad...no such luck.  Linde relieved Papa for the afternoon Nater shift and stayed until Papa came back to stay the night with him.  Chris is too sick to stay the night.  I'm feeling a little better and the kids seem to be better, but if one of them happens to throw up in the middle of the night again, Chris is in no shape to take care of them.  Plus, Chris and I shouldn't be spreading the love all over the hospital...it's bad enough that I was there yesterday.  We will keep the kids and Daddy home one more day tomorrow.  Thank goodness, this seems to be a 24 hour thing.  I will go spend the next couple days with Nate and try to get him to eat.  Always looking for the blessings, I spent most of the day snuggling with my big boy, Wes.  Something I don't get to do that often anymore.  His head still smells the same as it did when he was a baby.  Also, Ellie has finally been convinced that walking is the best mode of transportation for her now and is toddling all over the place.  Man, I love these kids!

You Just Have to Laugh...Right?!

Nate woke up this morning and immediately asked for a cookie.  He had a few bites of cookie and some milk for breakfast and that was about it, then we headed to the clinic.  Nate had blood taken, was examined, and I told them what had gone on over the weekend.  Nate's oncologist thought the vomiting was most likely due to the fact that he recently had such a major surgery.  I guess, "motility issues" are not uncommon.  All Nate's numbers came back great and he was cleared to start chemo.

I decided to take Nate to Target to pick out whatever he wanted to decorate his hospital room.  I also thought a little "non-hospital" lunch might encourage him to eat something.  Liz was out running errands with Jack and Lucy and met us at Target for a little shopping and lunch in the food court.  Nate picked out a silver tinsel tree, we got brightly colored lights and ornaments to hang from it and a red (Nate's favorite color) bow for the top.  We also picked up another set of lights, a mini stocking (and some candy to go inside), some gel window clings and an LED snowflake that changes colors.  I then took Nate down every food aisle and bought everything that he pointed at.  We ended up with breakfast bars, pretzel sandwiches, hot dogs, mac and cheese, yogurt, and cheese.  He never eats very well in the hospital, so I want to have lots of options for him if he feels like eating.  We headed to the food court and Nate ate one bite of an apple (because I begged him) and drank some juice.

Nate and I then headed to the hospital for Nate to be admitted.  Nate fell asleep in the stroller and I transferred him to the bed when we got upstairs.  He had a nice nap and when he woke up, we decorated his room.  We ended up switching rooms (they were nice enough to let us switch to a room with a bench, which is so much better than the chair to sleep on) and I decorated a second time...what else do I have to do.  Nate did end up throwing up this afternoon, and still won't eat anything...really, anything.

Fluids were started and not surprisingly, one round of hydration wasn't enough to start chemo.  They have to make sure his urine is really dilute and fluid is running right through him so that the chemo doesn't sit in his bladder and do damage.  So, he's on his second round of hydration and hopefully it will do the trick, so he can start chemo around midnight.  On another note, I mentioned that Nate had a kidney test when we were in New York to see if chemo had done damage to his kidneys (one of the major side effects).  The test showed no damage!  Thank you God!  Normal GFR (kidney filtration rate) for his age is 70 and Nate's was above 100!  Go Super Nate!

This evening I got a call from Daddy...Ellie is throwing up all over the place.  So, apparently this is a bug...not surgery related.  Something Nate picked up in New York or on the way home and passed on to Ellie.  I had the nurse call the on call doctor to make sure it is still safe to start chemo, and it is.  Ellie was supposed to go to Liz's house tomorrow, but we don't want to purposely expose their family to this bug.  Our wonderful family comes to the rescue again and the Grandparents will switch off taking care of Nate tomorrow, so I can go home and take care of my baby girl.  Please pray that Nate wakes up feeling like a million bucks tomorrow and starts eating...a lot.  Also, please pray that Ellie recovers from this thing quickly and the rest of our family is spared.  Honestly, a stomach bug seems like such a small problem right now, though I'm sure Chris isn't feeling that way as he takes care of our vomiting baby by himself.  Thank you, everyone, for your support, love, thoughts and prayers.



Home Again

We're home...and so happy to be home!  We had a fine flight home with some of the friendliest airport and Southwest crew that I've ever come across.  Security at Newark was nice and went out of their way to help us (Jen and I looked a little ridiculous with the amount of stuff we were lugging around).  While we were getting through security a lovely flight attendant asked where we were headed and if she could help us carry anything.  Turns out, she was one of the attendants on our flight and she carried Nate's car seat for us and put it on the plane.  She was absolutely the sweetest thing and took great care of us (and everyone else) on the plane.  During the flight, one of the pilots invited Nate to come in the cockpit after we landed.  Nate was very excited and shy and nervous.  Everyone was just over the top nice to us and it made the flight that much nicer.  You might think that everywhere we go, people would go out of their way to be nice to the little bald boy, but really it isn't the case.  Most people stare while trying to look like they don't notice him.  It's just so nice when people acknowledge my strong little boy and the battle he is fighting right now.

Nate has an appointment at clinic in the morning to be admitted for round 6 of chemo.  This is hard.  I've been away from home, mostly in the hospital, for almost 2 weeks.  We get 2 days home, then back to the hospital for 4 more days.  This also means the the timing of Christmas just sucks.  This is the worst time to start this round of chemo because it means his counts will be dropped at Christmas time.  There is a small chance that he could be on the upswing at Christmas...and we will pray for this.  Worst case scenario, he gets sick or gets a fever and is in the hospital for Christmas...this will just kill me.  The other possibility is that he makes it through Christmas without a fever, but his counts aren't recovering, which means we will have to limit his exposure to people (no church or big family Christmas party).  This would also be no fun, but if he is able to wake up in his own bed and run to the Christmas tree on Christmas morning, my holiday will be complete.

So, tomorrow he will start more chemo and we have to protect him from the many, many germs that are out there this time of year, if we have any hope of having him home for Christmas.  That means that this weekend was the only time we had to do anything fun for the holidays with the kids.  Visiting Santa at the mall, picking out our small "real" Peanuts Christmas tree, visiting the train park Christmas lights, going to a friend's Christmas party or seeing a movie in the theater, because all of this stuff will be off limits starting tomorrow.  I would love to tell you that we ran all over the city and had a grand old time this weekend.  We did not.

Saturday morning we got up and got everyone dressed in their cutest red outfit.  We headed to the mall for lunch and a visit with Santa.  Nate would not eat anything.  He laid his head on the table and said he wanted to go home...so we did...without seeing Santa.  He took a nap, and we hoped he would wake up feeling better, eat something and we could go pick out our tree.  He woke up and threw up when Chris gave him some medicine.  The rest of our weekend was spent trying to get Nate to eat and drink, without throwing up.  We don't know why he is throwing up.  We'll see what the doctor says tomorrow.  He finally started asking for some food tonight and ate a handful of stuff...then threw it up when I gave him his nightly medicine.  We're not sure if this will delay chemo at all.

This has been really hard.  I am happy to be home.  I am happy to have this surgery behind us, but Nate, and our family's fight is so far from over it makes me sick.  Some days I can handle the enormity of what we are going through, some days I can't.  I have so much to do and really, I don't want to do any of it.  I want to crawl under my covers and hide.  I tried on Saturday...it didn't work.  There is just so much I hate about this life we are living now.  Am I thankful that Nate is here with us and beating this?  Yes!  I am beyond thankful, but I am pissed that I have to be thankful that my little boy is alive.  How often to you actually think about how thankful you are that your children are alive?  This is something I think about constantly.  Also, I'm convinced that Ellie has Neuroblastoma.  This is not a logical thought (we actually had an ultrasound of her abdomen done after Nate was diagnosed), but I think about it all...the...time. 

All I want to do is bake cookies and decorate gingerbread houses, snuggle on the couch with my family and watch Christmas movies.  I want to get hot chocolate take the kids to see all the pretty lights in the city and pick out and decorate our Peanuts Christmas tree.  I want to do Christmas crafts and help the kids find the Elf on the Shelf every morning.  We can't do any of these things.  Our family is separated, half of us in the hospital, half at home.  This is not how it is supposed to be during the holidays...or ever.   It's been a really rough weekend, but I'm ready to tackle this thing in the morning.  I may hate this cancer life, but it is our life and all I can do is get up each day and try to make it through the day with a smile on my face.  So, that's what I will do tomorrow.

Discharge!

I woke up this morning, rubbed my eyes and looked at the clock...5am...fever time.  I jumped out of bed (hospital couch) and checked Nate's forehead...no fever!  I went back to bed for a couple hours and when we both woke up, I confirmed with the nurses...no fever!  Hooray, we are out of here!  We could have walked out of there first thing in the morning but we had to wait for the pharmacy to send up his pain medication to go home.  Jen walked over with the stroller to help me carry Nate's stuff back to the Ronald McDonald House...and we waited...and waited...and waited.  Dang pharmacy.  After several hours we decided to leave and come back later for the pain medicine.

We made it back to the Ronald McDonald House and ordered some lunch for delivery.  Nate ate nothing and as soon as we got back to our room he fell right asleep...he was just pooped.  We let him nap for a couple hours while we showered and I ran a few errands to find some snacks that Nate would eat and some rain gear (it has been raining all day today).

When Nate woke up we took him (ok...really we took Jen) back to the Toys R Us in Times Square.  We got some dinner at the Hard Rock Cafe and Nate ate half of a hot dog and a bit of a chocolate shake...more than he's eaten at a single meal, in a couple days.  He's still complaining of pain when it gets to be time for another dose of pain medication...which kills me.  I hate to see my little boy in pain...it just sucks.  I'm so thankful for a successful surgery and a fast recovery but sometimes it just gets to me that we have to be doing any of this.  I'm a little sad today...I think I'm just more than ready to come home.

Nate has a follow up appointment with the surgeon tomorrow morning.  I'm hoping we can get in and out of the visit quickly and hopefully it won't be raining and we can see a few more sights.  We have plane tickets heading home on Friday and I can't wait.

Post-op Day 4

Another super day for Super Nate...if it wasn't for those stinkin' fevers last night.  No one is sure where they are coming from.  Everything has been cultured and everything is negative.  Most likely, it is a little virus.  He came to NY with a slightly runny nose and when they swabbed his nose, it came up positive for rhinovirus (the common cold).  If it wasn't for the fevers he had last night, he would have been released from the hospital today. 

Unfortunately, when you have a kid with cancer and a Broviac (central line in his chest), no fever is a small fever.  They are talking about changing out his Broviac as a precaution.  They can't take the chance that there might be an infection hiding in his line that they are not catching with the cultures.  Unfortunately, this means more surgery.  Right now, we are just praying, waiting and seeing.  If he doesn't spike a fever tonight, we will be released tomorrow, Nate will have a follow up appointment on Thursday morning and we can be on a plane on Friday.  Then we will talk to Nate's doctors in Phoenix about possibly replacing his Broviac (this will more than likely have to be done at some point during his therapy...they don't last forever).  If he spikes a high fever tonight, he may have to get his Broviac replaced here.  We are hoping that doesn't happen.

The last few days, he seems to have been getting a fever at about 9pm, which we usually got to break with Tylenol, then he would spike another at 5am.  So far tonight, he got past the 9pm fever.  His temperature did rise, but didn't quite get to "fever range".  Now, he has cooled off quite a bit.  I'm anxiously awaiting 5am because I'd like to get out of here and headed home ASAP.  I miss my babies and I need a fountain drink something wicked (New York City does not believe in fountain drinks).

Other than that, Nate had an awesome day.  His kidney test was simple (I don't know when we will get the results).  Daddy caught a flight back home to Wes and Ellie and we got a special surprise visit from Uncle Chris, who is in town for business.  Chris was very surprised at how well Nate is doing.  He is no longer hooked to an IV pole, because he doesn't need anymore IV medications and he was almost running around the halls.  He played ball with me, the physical therapist and Uncle Chris and was kicking and bending and throwing like a champ.  I don't think Chris expected to be playing ball with a boy who had major surgery 4 days ago.  My super sweet friend, Jen, arrived tonight, after a long, delayed plane flight, to take care of Nate and I until it's time to come home.  I feel so much better having her here.

One last story for today...because I have to get this written down to keep for all time.  While we were waiting in nuclear medicine for Nate to be injected for his kidney test, we were going through all the pictures and particularly the videos on my phone.  I was sitting in a wheel chair with Nate in my lap and we'd been there for a long time.  In the middle of one of the videos of Wes and Nate that we were watching, Nate started to whimper and cry.  I quickly turned off the video and started asking where Nate was hurting, worried that I was holding him in a way that was putting pressure on his incision.  He whimpered, "I miss my brother".  Oh my gosh, it was all I could do to not break out in tears right then and there.  It was the sweetest and saddest thing.  Nate hasn't, through all of this, all the hospital stays, really expressed much sadness for missing home or people.  He really just goes with the flow.  Wes and Nate fight like cats and dogs most of the time.  Just recently is Wes starting to see the value in having a little brother.  Most of the time Nate ducks and swings as he approaches Wesley, as a defense mechanism.  It was just so sweet to see him cry over missing his brother.  Now, I REALLY can't wait to get home.

Super Date for Super Nate

Some lovely friends and family are working hard putting together this fund raiser for Nate, to help us with medical bills, the expense of this trip to New York for surgery, and his further treatments.  It will be a dinner and poker tournament at Coach and Willie's in downtown Phoenix on January 20, 2012.  I know they are still looking for sponsors for the poker tables and items for the silent auction and raffle.  All the details can be found on the invite and ticket form links posted on the right side bar of this blog and you can contact emilyamead@yahoo.com if you need more information.  Please share with your friends.  Thank you for all your love and support!

Post-op Day 3

Another great day for the Nater tot! The chest tube was taken out this morning, so no more extra tubes! Lots more walking with less complaint. Though, they stopped his pain pump and switched to oral meds which made his evening walk a little more painful. All steps to getting discharged. Lots more playing in the play room and a little bit of eating. He doesn't have a huge appetite yet, but he's working on it.

Tomorrow, he's going to have a kidney test done that was requested by our oncologist to be done between round 5 and 6. We tried to get it done before leaving for NYC, but with an irritating radiology scheduling department and the Thanksgiving holiday, it wasn't scheduled. So, while they'll have to put an IV in, and he won't be happy about it, we will be glad to get it out of the way and not have to spend another whole day at the hospital to do the test when we get home.

Hopefully, Nate will be able to be released from the hospital on Wednesday and on a plane home by the end of the week. The only hang up is a fever that he keeps spiking at night. He did it last night and again tonight. All his blood cultures, so far, are negative. We aren't sure where the fever is coming from. The nurse practioner said we aren't worried about it but it is "of note". If he keeps spiking though, they probably will not release him. Please send prayers that he is now done with these fevers.

Chick Magnet

Nate's scar...before and after.  The surgeon used the same incision and extended it a bit around his side so that he could get at his liver under his rib cage.  Part of me says, "Hey, we just got that thing healed!", but it is nice that he will only end up with one scar from both surgeries.  One..."totally awesome, they cut my tummy in half, twice, when I was two, don't you feel sorry for me and want to hug me, ladies"...scar.

Post-op Day 2

Nate continues to do fantastic! He walked part way to the play room last night and played for a while.

Walking really hurts, so he is NOT happy to do it, but it's good for him so we smile and cheer him on. Part of the pain of walking right now is the chest tube. It really isn't draining anything anymore, and hasn't all day, so it should come out tomorrow. He was also able to start a full liquid diet yesterday afternoon, instead of just clear liquids which allowed him to drink his favorite drink of all time...milk!

 

 

Last night, he was talking on Skype to Grandma and Linde and they asked how he was feeling. He said, "My tummy hurts, I can't go home". Then he said, "My tummy got cut in half when I was sleeping". Oh my gosh!! The poor kid! Really, what must he think of all this?! We tried to explain what was going to happen, but he isn't even 3 yet, how could he possibly understand it.  I just hope he doesn't become afraid to go to sleep.  I already know it's going to be rough getting him to sleep in his own room when we get home, because he has had so many days now with me and/or Chris in the room with him.

Last night, he spiked another fever that never really went away.  They ended up starting him on an antibiotic.  I guess they usually give an antibiotic for 24 hours after surgery and never started Nate on one.  They also took some blood cultures but we haven't heard anything in regard to those yet.

This morning he got up and had a waffle, 3 cartons of milk, and a Gogurt.  I got him up and walking and he and I played in the play room for 2 hours while Daddy went back to the Ronald McDonald House and showered.  I kept asking him if he wanted to leave the play room and he didn't.  He was having too much fun.

Last night, before he was allowed to eat food, he requested McDonalds, after seeing a commercial.  The poor kid was probably thinking, "We've been staying at McDonald's house for several days now and the guy hasn't even given me a Happy Meal!"  So, Daddy brought him a Happy Meal for lunch.  He ate all his apples, one nugget, most of his milk and most of a Danimal smoothie.  He then requested more McDonalds for dinner (more McDonalds in one day then I usually let him eat in several months) and got a Baskin Robbins milk shake for dessert.

I know you wanted to know this, but Nate has also pooped a couple times today.  This is all great stuff when you're talking about being released from the hospital.  He has been fighting a little fever, since surgery and also a racing heart rate.  His heart rate runs a little on the high side normally, but it hasn't been under 150 since surgery, which is pretty high.  A high heart rate is usually due to pain (check), fever (check) or a fluid imbalance.  We've been trying to keep his pain and fever under control but the heart rate hasn't been dropping.  Right now, as I type this, I've been watching his heart rate drop.  It's now down to 126 and he doesn't feel warm to me at all (the nurse will come in soon to get the official temperature).  I also asked him if he wanted me to push his button (pain medicine button) before he went to bed and he said, "no".  I'm hoping this is all an indication the his fever is gone for good and his pain is subsiding a bit.

We walked to, and played in the play room again tonight, right before his milk shake and bed time.  He cried a lot on the way there, but barely complained on the way back.  Such a strong boy.  I'll check with the doctor in the morning to see how much longer they think they'll keep him.  Once the chest tube is out...he's eating, walking and pooping.  As long as the fever stays away, I can't imagine they'd need to keep him a whole lot longer.

Post-op Day 1

Shortly after I sent the last blog post, Chris and I were able to call Wes and Ellie and video chat with them.  Nate was opening his eyes now and then, apparently heard his brother's voice and wanted to talk to him.  We put the phone in front of Nate and as soon as he saw Wesley's face he stuck out his tongue and blew raspberries at him!! It was the most beautiful sight!  I laughed hard as tears rolled down my cheeks.  He had just come out of major surgery a couple hours before, was still coming out of anesthesia and was on a bunch of pain meds to try and dull his pain...but that feisty personality...it's in there and can not be contained!

The night was ok.  Nate was obviously in a lot of pain and spiked a fever, which was causing his heart to race...all very normal after a big surgery like this.  I was in and out of consciousness all night and tried to be helpful but kept falling back asleep without knowing it.  Luckily, Nate had a great nurse who stayed on top of his pain and got the fever down.  Next thing I knew, it was 8am and Nate was sleeping soundly.

This morning, they took out the IVs he had in each hand and the arterial line he had in his wrist.  Hooray for free hands!  He has been sitting up all day watching TV (he even quietly sang the Phineas and Ferb theme song this morning) and playing a little.  They took his catheter out (another big HOORAY) and we took him for a short little walk.  As soon as he got up and moving, his chest tube drained a ton of fluid...that is a good thing.  The chest tube is his last "extra tube" and as soon as that comes out, he will be on his way to being discharged.  They will remove the chest tube as soon as the drainage from it slows down.

His lungs are a little crackly...also normal...so we are having him sit up, blow bubbles, we will have him walk again in a bit, and we are gently percussing his back to break some of that stuff up.  We have to help him get that stuff out of his lungs so it doesn't sit in there and cause an infection.  He has been taking sips of water and juice today and will slowly build up to eating.

Pretty great progress considering he came out of surgery less than 24 hours ago!!  Such a little champ!  Softie is faithfully by his side, helping him every step of the way.

Rocket Man

Nate will turn 3 years old on December 18th.  I've always been a fan of birthdays, but Nate's birthday this year...and every year from now on is just that much more special.  He has really fought for this one, this year.  He really deserved a great birthday party, but I wasn't sure how we were going to pull it off with surgery in New York, round 6, the holidays and a looming stem cell transplant.  Then one day it hit me...he is feeling good now, let's have a party now!  I sent off a quick email to all of Nate's bestest buddies to make sure that they would be in town the Sunday after Thanksgiving and we started planning his party.



I asked Nate what kind of party he wanted and at one point, with the help of Grandma and an internet connection, I think he had his heart set on a Curious George/Mickey Mouse/Little Einsteins/rocket party.

After much discussion, we decided on a ROCKET PARTY, as he would exclaim to anyone who asked.  It's only fitting because everything in our house has been about rockets, count downs and blasting off lately.  Nate insists that my minivan is a rocket (it even has automatic doors).  Every time we get in to go somewhere, Nate refers to me as "Captain Mommy" and has to count me down before I am allowed to start...I mean blast off...my car...excuse me, rocket.

I made jet packs for all of the kids, which was a bit of work but was all worth it to see those cute little bodies "blasting off" all over the park.  The jet pack races were just too cute.

Daddy got a water rocket kit and Nate helped Daddy, Sean and Mike blast off several water bottles.  It was great fun to count down and watch the rockets blast off.  Nate was over the moon that he got to help launch them.

Then, the pinata of course.

...and so, so, so many nice presents.  Nate can't wait to come home from New York and play with everything!

I made Nate a rocket cake fit for the occasion.  When he saw it the morning of his party, he ran up, hugged me tight around the legs and told me I was the best mommy in the whole world for making him his rocket cake.  Now, if that doesn't make it all worth it, I don't know what would.

Blasting off to 3!

Nate and Dane playing with the dollar store rockets I found for the goody bags.

It was a great 3rd birthday party!  I am so happy and relieved to know that no matter where Nate is on December 18th...he had a super fun birthday party with his friends.

Success!

This may not be the prettiest picture I've ever posted of Nate, but it's real, and really it's spectacular.  As you'll notice, our little super hero did it again and he is sucking on his Nuk...not a breathing tube!  He was able to come out of the OR off of the ventilator which means they also were able to take out the NG tube and we get to stay at MSKCC and not have to go across the street to the other hospital.  They also didn't have to place the central line.  So, he came out of the OR with 3 extra lines/tubes instead of 6.  The sooner the tubes come out, the sooner he'll be ready to go home!  The less tubes that have to come out, the better.

He is doing great.  As you can imagine, he is in pain.  He is on a good deal of pain medication to manage his pain and we are hoping he will mostly sleep tonight.  Tomorrow, we will get him up and started walking.  He has woken up a few times, briefly.  Once to take off his pulse ox meter (the little sticker wrapped around his finger to monitor his vitals) and tell me that he wanted his catheter out.  Never mind the giant gash in his side...he just wants that thing off his finger and that tube out of his penis!  Poor kid, hopefully the catheter can come out tomorrow.  Then he woke up to tell us that he wanted the oxygen mask off and his Nuk in.  Wish granted, they'll just keep an eye on his oxygen levels and make sure everything stays good.  The third time he asked us to turn on the TV, then fell back asleep before we got a chance to turn it on.  So, we're currently watching the Disney Channel so he doesn't wake up to yell at us to change the channel to "kid shows".  Such a little fighter!

The surgeon said that he lifted Nate's liver out and chopped out that tumor!  Hooray!  He did take some funny looking lymph nodes in the area that probably have Neuroblastoma in them.  This is a little scary but is very normal, I guess.  There are a lot of lymph nodes in the area and they frequently get Neuroblastoma in them.  We will have to wait for the biopsy results to see if they have active or inactive (killed) Neuroblastoma in them.  Either way...they are not inside my baby anymore!  The surgeon said that he lifted up Nate's aorta, vena cava, kidney and portal vein and looked all around...no Neuroblastoma!  Crazy...and awesome!

Nate will have round 6 and then will have a full work up of scans and bone marrow biopsy.  We are trying not to count our chickens before they are hatched...but we BELIEVE that Nate will be considered NED (no evidence of disease) at this time.  Amazing!  He will still have to complete his full course of treatment to make sure that every last Neuroblastoma cell is destroyed, but we love being ahead of the game.

Thank you to everyone for your thoughts, prayers and kind words today as we sent our baby into surgery.  I know God heard our prayers and Chris and I (and the rest of our family) really appreciated all the support.  It helped carry us through another rough day...with relatively few tears.  I will keep everyone updated on Nate's progress over the next few days as he recovers.  We love you all!

The Meetings

Our beautiful boy, watching TV, waiting for surgery.

Nate was taken back for surgery at 11:30am.  He was not able to have anything to eat or drink from midnight last night on...so, none of us had breakfast this morning.  Needless to say, we were all getting a little cranky as the time was wearing on.  We just got our first update at 2pm and they said that Nate is doing well.  The resection is under way and the doctor got started at 12:35pm.

On Wednesday, we had our meeting with the surgeon and one of the doctors from the Neuroblastoma team here at MSKCC.  Nate was being a crazy goof while we met with both doctors, but we wouldn't want it any other way.  They surgeon sat down and looked at Nate's CT scans and reviewed his history with us.  He said on a 1-10 scale of difficulty for the Neuroblastoma that he sees here (he sees some of the most challenging cases in the country), Nate is about a 2.  He said he gave it this difficulty rating only because he has to shave off part of Nate's liver and there is a risk of bleeding.  He also talked about making sure there is no part of his adrenal gland (where the tumor originated) left.  If there is, he will remove it.  The surgeon also said that he will look at all of Nate's lymph nodes in the area and if any of them look diseased (apparently, they look different), he will remove those also.

We were given the low down on what to expect after surgery.  Most of which we already knew, because Nate has been through this once before.  Basically, he may come out of the OR on a breathing tube and ventilator.  If this is the case he will have to go the the PICU (pediatric ICU), which is across the street at New York Presbyterian Hospital.  If he is able to come out of the OR breathing on his own (which he was, after his first surgery), he will stay here at MSKCC.  We are REALLY hoping and praying for him to come off the ventilator in the OR.  It's very normal and expected if he still needs the breathing tube, but I am not looking forward to seeing my baby sedated on a breathing machine.  Nate is our champ and we think he can do it!  He will have a chest tube to drain fluids, another (temporary) central line and an arterial line (which he pulled out the last time!).  We really don't know how soon Nate will get to come home.  It all depends on him and his ability to heal.  He did really well last time, so we are hoping for the best.  Most likely it will be anywhere from 5 to 10 days (we were told 7 to 10 by the surgeon, but have been told as short as 5 by the oncologists).  We just have to wait and see.

Chris and I both came out of the meeting with the surgeon with the impression that he didn't understand why we were here...why we had traveled across the country to have this "2 difficulty" tumor removed.  Strangely, this makes me feel good.  We know exactly why we are here.  We are here because Nate is our son and we would do anything for him.  Nate was lucky enough to have most of this tumor removed already in Phoenix, but the key word is MOST.  We want to make sure that ALL of the tumor is removed this time and who better to do that than the best Neuroblastoma surgeon in the nation (maybe the world).  No one in Phoenix ever said anything about Nate's lymph nodes.  The surgeon here is very thorough and that is what Nate needs.  Studies have shown that surgically removing the tumor, all of the tumor, is an important component to curing Neuroblastoma patients.  We have worked hard and are fortunate enough, with the help of so many awesome people and great organizations, to be able to bring Nate here...that is why we are here.

One other bit of information we got from the surgeon, was about the "spillage" that Nate experienced when his tumor ruptured as he jumped on our ottoman.  I off-handedly mentioned this to the surgeon as we were talking about Nate's history and he said that they have found in Neuroblastoma that "spillage" does not matter.  In some tumors, it is an issue, but not in Neuroblastoma.  This was awesome news to me.  Not that it makes a ton of difference, but when they kept talking about spillage at the beginning, my mom brain was running wild with mind pictures of nasty little cancer cells running wild on his insides.  I kept wishing we could have some how found this tumor, fairly early like we did, without the rupture.  All coulda, shoulda, woulda...but still puts my mind at ease a bit, and I'll take all I can get at this point.

We then met with one of the oncologists on the Neuroblastoma team to discuss Nate's 6th round of chemo and the antibody therapy they do here, versus the one they do at PCH.  It is still up in the air as to if Nate will receive his 6th round of chemo here in NY or at home.  It will all depend on how long it takes him to recover from surgery.  We will make the decision as the days go on.  If he is able to come home quickly, he will do the 6th round at home.  If his recovery here in NY is extended, he will probably receive the 6th round here.  Chris and I will make the decision in the next few days.  I drilled the oncologist pretty good about the antibody treatment and we got all of our questions answered.  I will explain more about it, once we have made some decisions as it gets closer.  It was just nice to talk to a doctor here, face to face, and get the information we need to make decisions for Nate's care.  We will drill the oncologists in Phoenix and make some decisions...we know which way we are leaning right now, so that feels good.

I'm typing this as we wait for Nate to get out of surgery.  We went to lunch with some great friends and have had some good distractions.  Chris is mastering Angry Birds.  I think I'm going to make a game called Angry Moms (and Dads), where we can launch bombs at cancer...in real life.  Well, I guess that's what we are all doing every day.  Surgery, chemo, radiation, etc.  These are the only bombs we have right now.  I just wish our babies weren't standing in the way.

Surgery in the morning!

I really want to write a post explaining everything we learned at the meetings with the doctors on Wednesday, but I need to get some sleep.  The hospital called at 4:30 this afternoon and asked if we could move Nate's surgery up to tomorrow morning, instead of Monday.  So, we have to be at the hospital at 6:30am for pre-op preperations and he is scheduled to be in the OR at 9:30am New York time...7:30am Arizona time.  I cried...a lot...when they called and asked us to change his surgery.  This is better, for many reasons, which is why we are doing it, but it is still hard.  I wasn't quite ready, mentally or emotionally, to be putting my baby boy through this tomorrow.  So, please send prayers and good vibes to my sweet, super boy and to the surgeon and doctors.  I will try to write a more informative post tomorrow as we wait for Nate to come out of surgery.  It will be a long surgery, 5 to 10 hours probably...or as the surgeon tells all of his patients, "as long as it takes to do a good job".