Day 10

Our goofy boy is back!

Yes, Nate is still in the hospital.  I have not really felt like writing and there really hasn't been much to report.  Yesterday and today, he finally is starting to make some progress.  He had much more energy yesterday and was speaking much more clearly.  He still wasn't swallowing much and was still having a bunch of spit build up, but not as much as before.  I was able to talk him in to eating a couple bites of food and a few sips of water.  Not much, but 100% more than the previous 7 or 8 days.  Today was even better.  He kept saying "no" to any food I offered him, so I decided to try his favorite candy, PEZ.  Sure enough, he downed 3 packs of PEZ in no time flat.  Clearly, the sores in his throat are better, or he wouldn't be able to swallow PEZ.  He is still on TPN and I'm still convinced that he won't eat until they turn it off.  I talked them in to turning it off in the morning.  I also haven't had to push his morphine button all day yesterday or today, hopefully we can have them turn the drip off tomorrow.  Over the weekend, his ANC went from 0 to 100 and back to 0.  Argh!  Monday it was 47 and today 115.  We are praying and praying that it is above 250 tomorrow.  Even if his ANC does get to 250 tomorrow, we aren't sure if they will let him go home, but Chris and I are surely going to push for it.  We've all been tortured long enough.

Nate is feeling much better and has a ton of energy, which is hard because they won't let him leave the room.  Once he comes in to the hospital with a fever, he can't leave his room until he leaves the hospital...even though we have been there for 10 days and he has been fever free for over 6 days.  I've been coming up with lots of games to keep us occupied, but it's getting difficult.  He even missed meeting Larry Fitzgerald and some ASU football players because of his isolation.  Good thing he doesn't care that much about football yet...and no one in this house cares about ASU football. :)

Nate is supposed to start round 5 of chemo on Friday.  I talked with one oncologist who said he didn't think that Nate would be ready...but he didn't really have a lot of answers for me, so we're just waiting to see what Nate's body does.  The Dr. (who is not Nate's main oncologist, who makes the decisions) said we could wait until the following Friday.  That would be so, so great to have a week off...except...there's this little detail of a surgery in New York.  I know that everyone involved is used to these delays, but it really can't be delayed too much because it will start pushing Thanksgiving and the surgeon is not there...major problem.  So, Chris and I have decided we will push them to keep checking Nate and start chemo as soon as his little body will allow.  Not really what we want to do, but it's what must be done to secure this surgery.  All of our travel plans are up in the air and I can't even make any phone calls until we see that Nate's numbers have recovered and we can start round 5.  I'm taking deep breaths, but to say that this causes me anxiety is an understatement.

This has been rough, really rough.  It's just so awful to see him in pain and it really hit us like a ton of bricks how quickly he went from being totally awesome to totally awful...and he has been in the hospital SOOOO long.  The hardest part about this is that we didn't really get much of a break this round and we know we are not getting any kind of a break after the next round either.  We have to take him right from chemo to surgery, and that is so hard.  This weekend was pretty tough.  We had a really cute 1st birthday party for Ellie...but Nate was not there.  Our family was not together and it kills me.  I am really happy that we at least celebrated together on Ellie's actual birthday, the day before everything went downhill.  I also had a super emotional day on Saturday, partly due to the outpouring of love and support for Nate and our family.  My sweet friend, Jen, organized the most amazing car wash to raise money for Nate's care.  She told her boss at Walgreens about Nate and he immediately jumped in to action to help.  So many people I don't know worked their butts off organizing the event, washing cars, making hot dogs, collecting donations and doing so much more that we probably don't even know about.  I was not there because I was trying to get things together for Ellie's party after having been stuck in the hospital all week, and also because I really didn't think I could handle it emotionally.  I was already in tears all day from the outpouring of support I saw on Facebook.  The turn out was incredible and the amount raised far exceeded any of our hopes!  Thank you so much to everyone.  There is no way I could ever thank you enough or show you how much it truly means to us.  We promise to pay it forward one day soon.  Also that day, a friend from high school, Leigh Ann, came to drop off the cake she had offered to make for Ellie's birthday party.  I have always made the kid's birthday cakes and I had a hard time accepting the offer from Leigh Ann at first.  I am so glad I decided to give myself a break because there is no way I could have made a cake with Nate in the hospital for so long.  Leigh Ann made the most perfect, beautiful cake for my sweet girl's 1st birthday piggy party...and it was so delicious that our guests gobbled up the whole thing in no time flat. She also made the absolute cutest smash cake...and little pink pig cookies.  She went so totally above and beyond, I almost couldn't handle it.  The love and support from all around is just so much to emotionally handle sometimes.  We have thoughts of..."do we deserve this", "how are we ever going to live up to this", "how could we possibly thank all these people" and "we wish we were helping with these efforts, not having to ask for the help".  Not to mention that sometimes having your heart so full of the love around you, makes it feel like it will burst.  These are just two examples of the many, many, many ways people are helping us through this.  I want you to know that if I forget to thank you personally or through a note or on this blog, it does not mean that we are not eternally grateful.  I really don't actually have enough hours in the day to thank everyone...wow...isn't that incredible!

I'd like to clear some things up about this blog.  I know that I did indeed ruffle some feathers with my naughty language a few days ago.  When I said I was sorry if that word offended you...I meant it.  I really don't want to offend anyone...but this blog is really, my story.  I know that many of you come here to get updates about Nate and he is obviously the reason for all of this...but he can't write a blog and Daddy has no interest, so the task of updating everyone is left to me.  When I started this, I had no intention of letting everyone in to the mind and heart of a mother to a child with cancer...but here you are.  It's not a pretty place to be and there are many, many four letter words here...only because there is no word in the English language that accurately describes how I really feel about cancer.  Ultimately, this has become and outlet for me and I need it, but I want everyone to know that I am not as "bad off" as maybe I seem in my blog entries.  I spend ALL day being happy and positive for Nate, Wes and Ellie.  I am absolutely positive that Nate will beat this cancer.  I search for our blessings daily and usually they grab me before I have a chance to look.  I take each happy, free of cancer worries, moment that my family is given and I run with it and do something incredible and fun.  The reality is though...that this is not a positive experience.  Yes, I look for the positives in everything, but really I just want to be taking Nate and Ellie on play dates to the park and to be volunteering at Wesley's school.  Not, taking Ellie to the babysitter and Nate to the hospital and never able to even pick Wesley up from school. We are constantly making the best of it...but really it sucks.  Cancer is stealing this year from all of us and I'm not happy about that.  I need a place to scream and yell and kick...and this is my place.  When Nate throws a royal fit about having to take another medicine or get another shot...I want to throw myself on the ground and throw a royal fit too...but I don't.  I smile, encourage, use my happy voice and tell him that he's strong and brave and it will be over in a second.  Then I come home, get on the computer and throw my fit to you all.