Day +18...ESCAPE!!



What a whirlwind week it's been!  Monday morning the doctors did their rounds and came in to see Nate.  Nate was doing fantastic and because his fever had disappeared before the "heavy duty antiviral" was really even given, they felt pretty confident that his fevers probably had been benign and not due to the virus that showed up in his blood work.  They said that he could finish out another day of the antiviral and go home Tuesday morning!! Incredible!

I began packing up the U-Haul's worth of stuff that we had acquired in our little room over the last month.  I took several loads down to mine and my aunt's cars on Monday night, so we could make a quick exit on Tuesday morning as soon as they said, "GO"!

 Tuesday morning, Nate finished up his meds, we went over discharge instructions, finished packing, got unhooked (finally!), put on some real clothes, and hopped in the wagon...ready to go!

First, the staff had a little surprise departure celebration planned.  Nate and I ran through the streamers, so excited to be heading HOME!  Mike Leach, from the Arizona Cardinals, and his wife were even there to join in the "party just for me" as Nate says.  There's even a little story about it on the Cardinals website.  I feel like I have been pretty good at keeping my emotions out of this transplant process, as much as possible.  I had one really hard day, out of 26, I thought I did pretty good.  I kept my head in the game and concentrated on taking care of Nate's needs from one moment to the next and tried not to get caught up in the big picture of the sad situation we were all in.  As we were packing up the room to go home and running through those streamers...I let the tears flow.  We still have so much further to go in this journey...so many more treatments to get through...but, this was a big one.  A big, scary one.  I was just so overjoyed to be mostly "on the other side" of this part of the treatment...that I let myself be consumed by the emotion of it.  Then, I had to explain to Nate that sometimes Mommies cry when we are happy...cause Mommies are silly like that.

Nate got to breathe fresh air (through a mask) for the first time in 26 days!  We hopped in the car and were on our way...well, then we had to turn back a few miles up the freeway to retrieve a forgotten suitcase (man, I couldn't get out of there fast enough).

 We headed to Lizzy's to get baby sister, Ellie, and to do a little playing.  Nate had SO much fun playing with his sister and cousins.  Remember, Nate hasn't even seen another kid for 26 days.  It was just so awesome to watch.  He was so excited to just chill with his brother and watch cartoons when Wes got home from school that he didn't even take a nap all day.  Again, this is a kid who's body has been put under so much stress in the last month that he could barely manage a walk across the room without needing a nap.  There's no place like home!

It was just the most incredible thing to wake up Wednesday morning to my whole family in the same place.  Ellie climbed in Nate's bed to give him good morning kisses and all three kids played with their "pet hospital" before Wes had to head to school.



Let me tell you a little story about the sweetest "almost 6 year old" little boy that I know.  It's not easy having a little brother with cancer and a baby sister...as the oldest kid, your needs always seem to come last...you can always wait.  I try to make sure he knows how important he is to all of us...I tell him every day how special he is...but it's still hard.  I still have to rely on him to be much more mature than his "almost 6 years".  Sure, he has his moments (don't we all?), but he takes all of this craziness in stride.  He cares so much for his little brother and is so incredibly sweet with him that it brings tears to my eyes several times a day.  He gets things for Nate when he needs them, plays gently with him, reads him books, carries Nate's TPN and pumps (which is too heavy for Nate to carry on his own) around the house so that Nate can walk around, and even "wrote" a very special song for his brother.  Thursday morning, I heard two sweet little boy voices over the baby monitor (we have the monitor in Nate's room).  Wes had gotten out of bed and gone straight to Nate's room to check on him.  They had a very cute conversation about where Nate wanted to go (to watch TV in the living room) and how he was going to get there (Wes would carry his TPN bag).  Then Wes helped him put on his shoes, because Nate is having a hard time walking without shoes on.  I just laid in bed, smiled and cried.  Even Ellie has been a sweetie. She found his blanket in the other room and brought it to Nate on the couch and laid it on top of him.



How has Nate been doing at home?  Spectacular, really!  He wasn't eating anything, at all, for the first few days...only water.  He would ask for every food on the planet, and I would get it for him, but he would just stare at it, or spit it out.  He started out getting TPN for 15 hours a day, for the first few days home.  Thursday, we went to clinic and all his blood work looked great.  He didn't need any transfusions, which is awesome.  Platelets are the last thing to recover and his platelets weren't normal yet, but not low enough to need a transfusion and they had been holding their own for almost a week.  They knocked his TPN down to 12 hours a day.  Friday...Nate started eating!!  He's still building up slowly, and still getting TPN at night, but I am so, so happy.  He didn't lose too much weight during the transplant (though, he still has so much he needs to gain) and we just hope that he can continue to gain and grow.  He has also developed a taste for chocolate milk (which I have been ,making with Carnation Instant Breakfast).  This is awesome because, before he would only drink white milk (with nothing added...I tried everything), and it's so nice to know that I can get some extra nutrition in him through his "chocolate milk".

He has been playing and playing and playing with his brother and sister and all the neighborhood kids.  When he first saw one of his favorite neighborhood friends, John, he "ran" the fastest I have seen him "run" in months and gave John a great, big hug...it was so sweet!  He is just getting stronger and stronger every day.  Our main challenge right now is getting his oral medication down him.  He throws up at the sight of it.  It just sucks to watch all that food we try so hard to get down him, come right back up.  We're working on it.  The only other challenge right now is keeping Nate at home.  He cried the other day because I wouldn't take him to the mall or Costco.  He just wants to be out in the real world like a normal kid.  We've had a really long talk about germs and he's such a smart boy, he understands so much.  He has been really good about wearing his mask and washing his hands to keep those nasty germs away.

We head to clinic again tomorrow afternoon  and will find out how all of his blood and electrolyte counts are doing.  They will make adjustments to his TPN...maybe get rid of the lipids, or maybe get rid of the TPN all together and just have him on IV fluids for a little while longer.  I can't wait to tell them that he is eating!  That's all I can think of for now.  Thank you to everyone for all your support through this process.  Thank you for the child care, meals, laundry service, pool service, and help clearing the clutter.  Thank you for helping us take care of Nate, Wes and Ellie and thank you for helping us take care of ourselves by giving us a break, visiting us in the hospital, checking in on us and making us laugh.  Thank you for the moral and emotional support and for all the thoughts and prayers.  Thank you for all the fun and uplifting notes, cards and packages.  You all know who you are.  You are angels on earth and we couldn't have gotten through this without you.