Make the Most of Every...Single...Day

I have been avoiding writing this post.  I need to write about and pay tribute to a couple very special kids and I know I won't do them justice...so, I've been putting it off.  First, I'll write about the easy stuff...Nate.

Nate has been doing fantastic and we've been thoroughly enjoying our time at home.  He finished his first round of antibody strong and was discharged by Friday noontime.  We could tell he felt a little wonky on Saturday and Sunday, so we kept it low key and close to home.  That Tuesday, Nate had a clinic appointment and started his first, 14 day, round of Accutane.  Daddy is responsible for preparing it every morning and every night because it causes MAJOR birth defects if even touched by a pregnant woman.  No...I am NOT pregnant (despite my little April Fool's joke) and do not plan to be...but Ellie came a little earlier than planned and we aren't taking any chances with this medicine.  Chris just punctures the capsule, squeezes on a spoon full of fruit juice concentrate, and Nate takes it like a champ.  He's had a lot of dryness and peeling on his face from the Accutane, which we care for with lots of cream, but otherwise he is handling it very well.  Nate had another clinic visit on Thursday for some more blood work and we were told we didn't have to come back until he was admitted for round 2 of antibody...awesome!



Wes had his last baseball game and his last day of kindergarten (is it really possible that kindergarten is over already?) and we've got summer in full swing.  There's been lots of playing and playing with siblings, cousins and friends.  Lots and lots of messing up the house.  Swimming (or riding in a boat if you are Nate), the zoo, an eclipse, play dates, and movies (both watching and creating).

We don't have too many weeks that Nate is out of the hospital and Wes is out of school this summer, so I am planning fun for every possible second.  We took a day trip to Apache Lake last weekend with our buddies the Woods family and had such a great time.  It was a lot of fun, a little relaxing and we made lots of great memories.  The boys loved fishing and helping drive the boat.  Ellie loved the snacks.  Chris made all the kids call Sean, "Captain", Captain Sean spotted a few sea monsters along the way and Nate crawled under the bench and took a snooze until a wave of water splashed him in the face to wake him up...memories.

Nate and I checked in to the hospital Monday morning to begin round 2 of antibodies.  We knew this week would be an easier one because he is just getting a 96 hour infusion of IL-2, the immune system stimulating medication.  Most kids do fairly well with this, but sometimes they have allergic reactions and fevers.  Nate has been doing really well.  He is CRAZY!  He is running and jumping all over the hospital as I try to keep up with his IV pole.  We are playing, playing, playing.  I brought his potty to work on a little potty training.  We really haven't worked on potty training at all.  How can you effectively potty train when he has been too weak to even walk and had constant diarrhea for most of the last year?  I knew this would be an easier week, so I thought we'd give it a try while we're stuck in the hospital.  He has done really great!  We will just keep working.  Next week should be a pretty tough week with lots of pain and high fevers, so we'll take it one day at a time.  We should hopefully get to go home Friday and will check back in Monday for IL-2 combined with antibody.

 While I was enjoying every minute at home with my family, it was also a very heart wrenching, difficult week.  We lost two sweet children, from our clinic, to neuroblastoma, in the same week.  Two children that are both very dear to my heart.

First, I learned of Jake's passing.  You may remember me asking for prayers for Jake and his family a while back.  We met Jake and his mom at clinic and had an instant connection.  Jake was a sweet boy and a strong fighter.  He battled neuroblastoma on and off for 6 years, from the time he was 2 years old, with his family by his side.  I attended Jake's memorial service.  It was a Catholic service, entirely in Spanish.  As I sat through the service in tears, it stuck me.  I am not Catholic, I do not speak or understand Spanish.  Under normal circumstances, Jake's mom and I would not be friends, our paths would probably never cross.  Yet, here we are, bonded for life because of our little boys who have had to battle this disease.  It's so completely tragic and beautiful at the same time, but I would give anything for our paths to have never crossed...for our boys to not have had to battle this disease...for Jake to be here playing with his family.  We love you Jake...forever 8.

 Then there is Ava, sweet Ava.  Right when Nate was being diagnosed, before we even knew for sure what Nate's diagnosis was, a friend from high school mentioned that she had a friend who's little girl had neuroblastoma...Ava.  I contacted Ava's mom, who gave me some good information and the link to Ava's caring bridge site.  During Nate's first couple hospital stays, I sat and read through every single word of Ava's caring bridge...all 2.5 years of it.  The story I read was amazing, strengthening, encouraging, inspiring, and horrifying.  The amount of stuff this little girl had been through in her neuroblastoma journey through treatment and many relapses was incredible.  The fact that this sweet girl could still be smiling and her mom could still be standing gave me a such hope.  Here's the thing though.  They weren't just smiling and standing...they were living...living, loving and thriving.  Thriving in a world of cancer and treatments and endless traveling to search for a cure.  In those early days of Nate's diagnosis, I just didn't know that was possible until I read Ava's story.  We saw Ava and her mom around the clinic and hospital frequently, where I would continue to get great advice.  We were even lucky enough to fly on the private plane to Houston with Ava, her mom and Grandma.  It was such a pleasure to spend some time with this incredible girl and her amazing family.  Ava lived every day to the fullest until she was done fighting.  Ava was diagnosed at 18 months old and bravely battled neuroblastoma for 3.5 years.  We love you Ava...forever 4.

Hug your family and friends tight.  Tell them you love them.  Live every day to the fullest.  Do it for Jake, Ava, Ronan, RJ, and Brennan.  Do it for all the children whose time was cut way too short.