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.