Day +7, +8, and +9

 We've had a crazy, busy, whirlwind weekend.  Thursday, Nate's blood work showed 6 cells and Friday there were 25 (no neutrophils yet...so, no ANC), and his white blood cell count had gone from 0.1 to 0.3.  Still a long way to go...but we were so excited to see movement.  Nate was still fighting fevers but they were further apart and the temperatures were lower.  I also got Nate up and playing and walking around a bit on Friday. I left the hospital on Friday evening, with Nate in Lou Lou's loving care, to get home in time to take Wes to see the school play.  Three of Wes's neighborhood, bestest friends, were in the play (they are in 4th and 6th grade) and it was really fun.  All the kids did a great job!  Then, I met my friend for a late movie and got to sleep in the same bed as my husband!  This was all just on Friday night!

Saturday, Lou Lou and Papa took care of Nate and Grandma and Linde took care of Wes and Ellie, while Chris and I took a little time off to do one of our favorite things...race!  We competed in The Great Urban Race (which benefits The Ronald McDonald House and St. Jude's...by the way), which is part 5K, part scavenger hunt where you have to run around the city, solve clues and compete in challenges.  It's like a mini Amazing Race, and we love it!  Our team name was Super Nate, of course, and we wore our Super Nate shirts and our capes the whole race.  I even ate a scorpion...really, after the last 7 months, I certainly am not afraid of a little scorpion.  We finished 21st out of almost 400 teams and the top 25 qualify for the National Championship race in Vegas in November.  Who knows if we will be able to go, with Nate's treatment schedule, but we are certainly going to try.  Of course, Chris and I can't actually have a couple hours break from being cancer parents.  I was literally running down Scottsdale Road (in between balancing a beer on my head and eating a scorpion) talking to Nate's doctor about his central line being blocked...now, that's multitasking!  Turns out, that some time on Saturday morning, Nate's line stopped working.  They did some tests and found out that it has a small hole in it and is not fixable.  They had to put him under anesthesia Saturday evening and place a temporary PICC line in his arm.  Tomorrow morning at 9am, he will go back in to the OR to get his permanent line removed and a new one placed...the line that he JUST had placed a little over a month ago.  Ugh...always something.  We did get the good news from Lou Lou on Saturday morning that Nate's ANC was 75!  Woohoo!  An actual ANC...things are happening!  Go, cells go!

This morning, first thing, I got great news from Chris.  Nate's ANC jumped up to 840 and his fevers have slowed quite a bit!  Spectacular!  They consider his cells to be engrafted when he has 3 consecutive days of ANC above 500.  We are on our way!  He has several other things he must do before he can go home...such as, taking all medication by mouth and be able to go a couple days without a platelet transfusion...but, we are looking at possible discharge maybe next weekend.  I'm trying not to get too excited...but I'm excited!  I'll take 3 weeks in the hospital over 6, any day.  We started off our day, today, with a balloon release in honor of RJ.  His family had his services today and asked anyone who could not attend, to release a balloon in his honor.  It's the least we could do.  My sweet friend, Jen, her husband and kids blew up over 20 balloons this morning and we attached cards I made with some of RJ's information.  We hope to spread a little awareness where ever those balloons end up...RJ where show them where to go.  One of them hit a tree in the park and dropped it's card right in front of a woman walking her dog, which gave me the opportunity to talk to her about RJ, Nate and neuroblastoma.  See RJ, you're making a difference already.  It was sweet and emotional.

After the balloon release, we headed out to Mesa for my sweet nephew's baptism.  It was a really nice ceremony and a fun party with great people.  I am really so, so proud of my brother and my sister-in-law and I sure do love that little boy!  This evening, after a trip to Costco to get Wes some muffins he has been asking about for weeks (poor kid...I don't get to the store much these days), I headed back to the hospital.  Daddy, Nate and Softie were hanging out watching shows and watching Nate get stronger and stronger.  This week should be challenging and exciting as we work to get Nate the heck out of here and back home with our family where he belongs.

The pastor of our church posted this quote on Facebook earlier this week, "God never promised the perfection of heaven in our earthly existence, but because of his love and grace, He will bring blessing out of trials."  Man...aint that the truth.  There are a lot of things that suck about our life right now.  It is not fun to have our family constantly separated, to watch Nate suffer, to not be able to care for my family in the simplest ways that I used to enjoy so much....but, wow!  Look at our blessings!  Three beautiful children, a strong, fun marriage, a family and extended family whose love and support of us is unparralled, new and old friends and aquantainces who have come out of the woodwork to help our family, solid careers at amazingly supportive companies, and so much more than I could ever list here.  It would be easy to get down in the dumps about our situation...and believe me I do (though, I guess you all already know that), but I am trying EVERY DAY to focus on the blessings that God has bestowed on us.  Even in this most awful trial, the blessings still far outweigh the hardships...how is that even possible?!  Only through God, I suppose.

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!

Day -3, -2, -1 and True Love

Day -3 was Valentine's Day...and also Nate's last day of chemo.  We had a nice day.  Grandma sat with Nate while I snuck away to Wes's school Valentine's Day party.  Wes was so cute.  He was so darn excited to go through all the Valentines from his classmates...all the kids were.  It was really precious to watch.  I got back to the hospital in time for Nate's pump to start beeping...complete...chemo complete!  Nate also received so many nice Valentines and presents, including a big box of goodies and a giant fortune cookie!  Thank you to everyone who sent him something.  He loved it all!  If anyone would still like to send him mail, please do.  We will be here awhile and he loves opening mail.  We have everything hung up around the room.

Day -2 I worked all day and Nate was well taken care of by Papa, Grandma and Linde.  This was the day that he started to decline a bit.  Not really eating anything and having bad diarrhea and more vomiting.  He threw up all over Softie and even though Grandma told me to bring a clean one (uhoh...don't tell Nate...we have 3 Softies), I forgot it at home.  After working 12 hours, doing some quick grocery shopping, grabbing clothes at home, driving down to the hospital, parking by the ER (because it's after 8pm) and walking through the whole hospital carrying a crap load of bags...I realized I left my phone in the car and Softie at home.  So, I walked back through the hospital and drove back up the 51 to rescue Softie.  I didn't get back to the hospital and Linde didn't go home until 11:30pm.

Today was Day -1.  Nate is continuing to decline and it sucks to watch.  He is still happy and in good spirits but he is super tired and doesn't really want to get up and walk around or play much anymore.  He has pretty much completely stopped eating and drinking and is having bad diarrhea.  The vomiting has gotten more frequent and he really turns green and starts heaving at the thought of putting anything in his mouth...food or anything.  This is all to be expected...it still stinks.

Tomorrow will be his transplant.  It is similar to a blood transfusion and the cells will be infused through his central line.  There is a possibility for a reaction, so he will be given a bunch of premeds and will probably sleep through the infusion, which should take about 30 minutes to an hour.  This will be occuring between 10 and 11am.  I would like to ask for everyone to take a moment, if you think of it, at around 10am tomorrow and say a prayer or think good thoughts for Nate and his cells.  That the chemo is doing it's job and has killed all those "cancers hiding in his belly", as Nate says, and that his cells will do their job and repair his bone marrow quickly and completely.  We expect Nate's worst week to be next week as the chemo continues to wreak havoc on his body, before he cells have a chance to do their job.

   On Valentine's Day I noticed there were two distinct camps on Facebook...those who love it and soaked up all the candy and flowers...and those who hate it.  I suppose I've always had a love/hate relationship with Valentine's Day myself.  When I was younger I hated it...always wishing some special boy (who didn't know I was alive) would be my Valentine.  Now, I've had the same special boy as my Valentine for the last 16 years (who gave me a mixed tape of punk rock songs for our first Valentine's Day, by the way).  As the years have wore on, Valentine's Day has become less about flowers and an expensive meal as it has about putting a smile on our kids faces and sneaking away to a movie by ourselves.  It's all very sweet, but none of the sickly sweetness of Valentine's Day is what love is all about.  Tonight as I was giving Nate a shower and rubbing cream all over his skinny body...it came over me...THIS is true love.   Of course I've known this for some time, but for some reason it really hit me.  Real love...true love is about the hard times.  I truly believe this.  It's easy to love when things are fun and light and fluffy.  True love is sitting by your baby's side and cleaning up blood, spit, vomit and poop...on no sleep...with a smile on your face, because you love them so much you would do absolutely anything for them.  This is what parents do...this is what cancer parents do 1000 fold.  True love is not being able to see, touch or really talk to your husband much for weeks on end but to know deep down in your soul that you will get through this even stronger than before.  True love is hard...but man, it is SO worth it.  I am truly blessed to have so much true love in my life...every day.

Day -4

I swear that time is not a constant in the hospital.  It either goes very, very slow...when you are waiting for chemo to start, or waiting to get the heck out of here.  Or it goes very, very fast and before you know it, it's 9pm and you have had a shower or dinner yet.  Today was definitely a time suck day.  Though, I do know where our time went today.  We were very busy.

Nate continues to do well.  His eating seems to have slowed down a bit, but he is still eating.  I spend a lot of the day running back and forth between our room and the family lounge (where there is a fridge and microwave) making and getting food for Nate.  He can't decide exactly what he wants most of the time.  He is still throwing up at the thought of medication, but then, gets right on with his day.  They've gotten rid of some of his yucky medicines, but as long as his tummy is still wonky, as soon as he sees those syringes...he turns green.  Still, I am very happy with his level of nausea because he is only throwing up a couple times a day and it isn't slowing him down at all.

We moved rooms today.  Some rooms have benches to sleep on and some have chairs that lay flat.  We far prefer the "bench rooms".  The bench is much more comfortable to sleep on and it is right by the window and provides a nice place to have Nate walk over to during the day to sit and play.  I requested a switch to a bench room if possible, when we got here, and one became available today.  This room rocks!  Really, it's the little things that get me excited.  It's quite a bit bigger and just a whole lot more comfortable.  We are going to be here awhile...we might as well get comfortable.  It was a bit of a process to move over (we are going to need a U-Haul to move out of here when this is over), but we are all settled in now.

Today was also "Nate's day" in the play room.  They have a play room on this end of the 7th floor for the bone marrow transplant kids.  Normally, the kids are allowed to play in there as long as their ANC is above 250...they also used to be allowed to wander the hall.  This is not the case right now because it is RSV and flu season.  Apparently, last season they had a flu that got on to the floor and almost killed a couple kids, so all the kids have to stay in their room, no matter what their ANC is.  They have decided to let the kids have access to the play room one day at a time and it gets cleaned in between each kid.  Today was Nate's day.  Unfortunately, we didn't get confirmation that he could go to the play room until the afternoon, when most of the day was over.  Nate was a good boy and wore his mask to walk to the play room...something he NEVER does.  Really, the play room was nothing to write home about.  A few toys, but not as much fun as the main play room.  It was just nice to get out of the room for a bit.

I also spent a great deal of the day talking to the doctor, nurses and pharmacist about a medication error.  Two of Nate's chemo drugs are 24 hour infusions.  They were hung yesterday afternoon at about noon and because of a tubing change, started infusing about 2:30pm.  Which means the infusions should end at 2:30pm today and the bags would be switched.  Last night, about midnight, one of the bags went dry...all the medication had been infused.  I didn't know anything about any of this until this morning, but apparently last night everyone was called at home and trying to figure out what happened.  All of the nurses checks and balances were done.  All of pharmacies checks and balances were done.  We sit here and watch the nurses check themselves when hanging the chemo, making sure to double check the patient, the drug and the infusion rate.  I asked to pharmacist to come up and talk to me about their checks.  The pharmacist spent a lot of time going over their whole process.  Everything checks out.  So, what happened?  We don't know.  It will probably always remain a mystery.  Was Nate given the medication too quickly?  Honestly, this would be the best scenario because this chemo can be given faster and would probably cause no harm.  Was he given the correct medication?  Everything from pharmacy says that he was.  The only conclusion they can come to, is that it was a faulty pump...the same pump that gave the meds correctly the previous two days.  Unfortunately, a faulty pump is not very likely...but, there is no other explanation.  I am choosing to give this to God.  Everyone involved has gone over this again and again.  There is nothing more that can be done.  I am praying for protection for my boy.  Protection from the poison we know is going in to his body at the correct rate and protection from the unknown that happened yesterday.

At about 2:30pm tomorrow...a little over 15 hours from now...Nate's chemo will end...FOREVER!!  That's right!  Nate will not have any more chemo...God willing...EVER!!  We still have so far to go, but I am grateful to have that part of this journey behind us.  I am excited to see his hair again.  Nate has been off chemo so long (clearing up the blood infection) that peach fuzz has started to grow all over his head.  He also has a bit of eyebrows and beautiful lashes coming in.  Unfortunately, this will all fall our in another week...but, it is a beautiful glimpse of what we will get to see in the next couple months.

Day -6 and -5

Daddy took the weekend shift, so that he could spend some time with Nate and I could give Wes and Ellie some Mommy time.  It did dawn on me yesterday, though, Chris and I will not get to see eachother (other than a couple minutes in passing) for as long as Nate is in the hospital...4 to 6 weeks.  That's a long time to go without hanging out with my best friend.

Nate had a fun weekend with Daddy.  He is still doing great.  Lots of energy and eating...lots of playing.  He didn't start throwing up until Saturday.  Three times on Saturday, two times today.  All related to medicine taking or mouth care.  He has such a strong gag reflex and when he's on chemo, he just doesn't tolerate anything yucky in his mouth.  Unfortunately, all the medicines he takes (9 doses right now) are yucky and the mouth care he has to do 4 times a day is also yucky.  So, we get the bucket and cross our fingers.

His other least favorite time of the day is shower time.  It is important to keep his skin clean and healthy through this process, because it is another site of possible infection.  Nate is just not a big fan because we have to put tape over his dressing, which means we have to take the tape off...ouch!  Also, Nate does not tolerate being cold AT ALL right now because he is so thin.  So, we do his shower right before bed and he's pretty worn out and ready for sleep afterwards.

That's pretty much all I know right now.  Nate is snoozing and tomorrow will be his last day of chemo.  Here are a few pictures of Nate's fun weekend with Daddy.

Day -7

So, today was the day.  Chemo started at about 11am.  It started with a 30 minute infusion of a drug called Melphalan.  Common side effects (21-100% of patients): nausea, vomiting, loss of appetite, increased risk of infection, need for blood and platelet transfusions, mouth sores, hair loss and diarrhea.  Occasional side effects (5-20% of patients):  weakness, weight loss and inability to have children.  Rare side effects (1-4% of patients):  Low blood pressure, excessive perspiration, allergic reaction, a new cancer or leukemia resulting from this treatment, and damage/scarring of lung tissue.  Nate will get Melphalan on days -7, -6, and -5.

Then Carboplatin and Etoposide began as a 24 hour infusion that will be given throughout days -7, -6, -5, and -4.  Common side effects of these two drugs: nausea, vomiting, loss of appetite, increased risk of infection, need for blood and platelet transfusions, and inability to have children.  Occasional side effects: abnormal hormone function affecting levels of salt in the blood and urine, causing too much or too little urine, decreased blood pressure during the infusion, hair loss, and diarrhea.  Rare side effects:  metallic taste, numbness, tingling, clumsiness, damage to the liver, damage to kidney tissue, damage to the ear causing hearing and balance problems, mouth sores and a new cancer or leukemia resulting from this treatment.

Fun stuff, huh?  Not anything I ever thought I'd consent to giving my child.  Eight months ago, I hesitated even giving Tylenol unless he really needed it.

Nate handled the poison like a champ today, though.  He played and ate, all day long.  He was up out of bed, wandering around, pushing his IV pole (that was dripping poison into his veins) looking to "do something fun" and searching for snacks.  He played with a beach ball, bowled, drove cars around a painter's tape race track, did puzzles, watched movies, ate tons of snacks and rode the Smart Cycle video game...all without leaving the room.  Nate was a ball of energy all day long and continues to eat well.  So far, no sign of nausea or vomiting...which will be the first side effect that we will see.  Nate is getting IV anti-nausea medication around the clock every 3 hours, with 2 more meds available if he needs them.  I'm praying that this regimen can keep the nausea and vomiting to a minimum.

Nate did ask to go home...specifically to go to Chuck E. Cheese with Daddy...or to at least go to the play room or out in to the hall.  He can not go any of these places.  He was disappointed, but understood and accepted it.  Other than that, Nate and I had a really fun day, then Papa came to relieve me in the afternoon, so I could take Wes to his first baseball practice of the season. 


Sometimes I don't know something is going to be difficult until I'm in the middle of it.  Taking Wes to his baseball practice was hard.  The first thing that really struck me, is that I find it really difficult to be around a group of "normal" moms, especially ones that don't know about Nate.  It makes me sick to think that someone would look at me with Wes and Ellie and think that I am a mother of two.  I feel like I need to walk around with a shirt on that says, "I have 3 children, Wes is 5, Nate is 3, and Ellie is 1...Nate is in the hospital, bravely battling cancer".  It is also very difficult to listen to the "typical Mommy conversation".  "Joey walked at 15 months, but Susie walked at 9 months.  I have a roast in the crock pot.  We're remodeling our kitchen."  These thing used to important to me too.  I even try to pretend to engage in this "normal" conversation from time to time.  What do I really have to add to these conversations now anyways?  It just feels so empty now.  Will I always feel this way? 

Then, about 15 minutes in to Wes's practice, it hit me.  Nate is not here.  I started sobbing and had a hard time containing myself.  Nate LOVED going to Wesley's practices and games last season.  Nate actually thought that HE was playing baseball on the team as well.  He would always ask to go to "my baseball game".  I would bring his Little Tykes baseball tee, bat, balls and glove, and he would have a grand time running around and playing with the other brothers and sisters.  At the end of the season, I was given a trophy for being team mom and I gave it to Nate...he truly earned it for being their honorary player and number one fan.  When I left the hospital today, I didn't tell Nate where I was going because I knew it would break his heart.  I just didn't know that it would break mine to be there without him.  Then my mom pointed out that he may be missing this season...but, next year, he will wear a uniform.  Then, I REALLY started to sob.  I CAN NOT wait for that day...talk about sobbing!  Now, I'm the crazy mom who doesn't engage in "normal Mommy talk"...AND I cry at baseball practice.  Yep...that's me.

Stem Cell Transplant: Day -8

Today has been a pretty good day.  Grandma, Nate, Ellie and I met Liz, Lily, Jen and the kids at Chuck E. Cheese for some lunch and fun.  Nate is just doing so well!  He doesn't tire as easily, he was running around playing everything and even climbed up in to a monster truck a couple times by himself.  He also ate almost 3 pieces of pizza!  It was a perfect send off.

We dropped Ellie off at Liz's, said goodbye to Grandma and headed over to the hospital.  He was tired and cranky in admitting and was asking (ok...screaming) to go up to his room, so he could take a nap.  As soon as we got in his room, he started making himself at home.  He hung his Valentine's Day window clings up, unpacked his bag of snacks and carefully arranged them on the shelf.  Child life brought in a pile of new toys for him and he started searching for places to put them in the room.  He was taken downstairs for a baseline chest x-ray and by the time we got back up to the room, his need for a nap apparently disappeared.  He spent the rest of the afternoon playing with his new toys and eating snacks.  He kept climbing in and out of the bed and wandering around the room to get himself things.  This was awesome for me to watch because normally, no matter how good or bad he is feeling, he is perfectly happy to park his butt in bed and bark orders.  He almost never gets out of bed without someone making him, so I hope we can keep up the activity as long as he is feeling up to it.

He fell asleep right before the nurse was able to come in to do his dressing change and had to be woken up for it. Dressing changes are no fun...being woken out of a dead sleep for a dressing change, is a real bummer. He did awesome as always (with a little screaming and crying) and was then hooked up to some fluids and heparin (a blood thinner that will help prevent liver problems that are associated with this chemo). He also received 4 yucky medicines and took them like a champ. The chemo drugs will start in the morning.

So...what exactly is a stem cell tranplant?

First, high-dose chemo is given to destroy any remaining cancer cells in the patient's body.  Then, stem cells from the child, previously collected, are given back through the central line to allow their bone marrow to recover from the side effects of the chemo.

High dose chemo, in addition to destroying the child's neuroblastoma, will also destroy normal marrow.  This will result in low blood counts that will increase the risk of infection or bleeding during the first 2-3 weeks (or longer) and could lead to death.  During this time the child will stay in an isolated room with special care attempted at reducing the chance of infection.  The child will need IV fluids and feeding, medication for infection, and transfusions.  The doctors will try to prevent or correct any medical problem along the way.  After marrow function is recovered, the likelihood of developing an infection or bleeding is decreased but will continue as a risk for several months.  If the transplant proceeds as expected, the child will spend 3-5 weeks in the hospital.  It may be necessary to spend a longer time in the hospital if complications occur.

Nate will receive high dose chemo on days -7, -6, -5, and -4.  Days -3, -2 and -1 are considered "rest days", where he doesn't receive chemo drugs but will continue to receive supportive therapy as his body starts to decline.  On day 0, he will have his stem cells infused.  I've been told that the actual infusion of the stem cells is pretty anti-climactic.  There is a chance for a reaction, so the doctor will be in the room during the infusion, but it doesn't take very long and most children handle it fine.  We've also been told that the preservative they use to pack the stem cells, smells awful.  It's been described as smelling like creamed corn and apparently Nate may smell like it for several days...yum!  The stem cells take about 10 days to graft, or "take" and Nate will be feeling his worst probably around day +4 or +5.

I like to think of the stem cell transplant process as similar to Nate's worst round of chemo...maybe, plus some.  He would be in the hospital for 5 days getting chemo, come home for 5 or 6 days, all the while declining.  Then, he would get a fever and end up back in the hospital.  The worst round had him in the hospital for 12 days, battling fevers, mouth sores, vomiting and diarrhea.  This will be very similar, the only difference is that he won't come home for the 5 or 6 days in between.  This time, he will also get his stem cells back to help his body recover, rather than sitting around waiting for it to recover on it's own.  The other advantage is that he will be able to get IV anti-nausea medication around the clock while we are here.  Nate's vomiting always was worse at home when we had to rely on oral anti-nausea meds.  I am optimistic that his vomiting will not be too bad and that his stem cells will help him bounce back faster than ever.

I think that's enough information for one day.  I'll spread the love over the next couple days and go over the chemo drugs he will be receiving.  If any of this bores you...feel free to skip to the cute pictures.  This blog is as much a way to keep everyone up to date as it is a record for myself and for Nate one day, if he's interested.  Some time yesterday, this blog surpassed 100,000 hits!  That is pretty amazing to me.  There are actually people all over the world reading about Nate and praying for him!

Thank you for following his story, spreading awareness and praying for Nate and all the other babies battling this horrible disease.