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.