Day 16

Wednesday. Riley woke up this morning with a sore throat.  The doctor looked and found an open sore on his uvula, (the thing that hangs down in the back of your throat).  Ouch... so everything he eats and swallows, passes there.  As if eating wasn't hard enough already!  Mouth sores are common with chemo.  I have a feeling this is just the beginning.

Getting this shot was kinda funny.  The doctor is holding the light and Riley is saying Ahhhhh... and I had to snap at just the right time to see all the way back there.  I did it so Riley could see what his sore looked like.  OUCH!  (btw, look at Riley's wiskers.  Long, huh?  He has not shaved since being admitted to the hospital.  He says, "what is the point? It is all going to fall out anyway.)  He has a point.

Later today during Riley's shower, he discovered that his hair was falling out.  He had already decided that when it starts to fall out he would just buzz it all.  So we took the official "BEFORE" pictures...

Riley's comment, "Man, but I have such good hair!!

(I know buddy, I'm so sorry!!)

(It will grow back, I promise!!)

We decided to crank up the volume on some music and have a little fun...

Riley's teacher advisor and a friend came by the hospital that night.  Riley asked them to bring some gel.  They wondered what he was up to until the big reveal.  Then he wanted to finish it off.

My handsome boy.

Labs today:

White blood cells: 0.6 (normal 4.5 - 13.5)
Red Blood cells: 7.9 (normal 13.5 - 17.5)
Platelets: 43 (normal 150 - 425)
ANC:  0 ( < 500 = severely neutropenic)



Day 15

Tuesday.  Riley received platelets today.  I knew he would be out for awhile and I needed to do a few errands and get some laundry done, so it worked out well.  He snoozed and I scurried around town.  I picked up his new glasses at Walmart.  Bought a few snacks for our room.  Ran home and put in our laundry.  Downloaded music on his new ipod. Tried to "clean up" Christmas at our house.  It was a busy afternoon.  I don't feel like I can relax at home.  I just needed to hurry and get done whatever it was that had me there, and then hustle back to be with Riley.  Vince and the kids are in Las Vegas this week for the traditional Gibson Christmas / New Years.  If they were home, I of course would have stuck around.  ...  It just felt weird... Our house was so empty.  Our life has just changed.  We are different.  Still getting used to that.

Picture on my way out today.  This is where we are...

Labs today:
White blood cells: 0.6 (normal 4.5 - 13.5)
Red Blood cells: 8.2 (normal 13.5 - 17.5)
Platelets: 13 (normal 150 - 425)  (received 1 bag transfused)
ANC: 42   ( < 500 = severely neutropenic)

Day 14

Monday.  Feeling like a new man today.  Amazing what a little blood can do!  Today Riley's nurse Taryn, pulled some strings and got Riley up on the roof of the hospital for a little fresh air.  We were escorted by security up to the helipad.  It was really cool!  We loved it, what a view!  One side looks over to the U of A football stadium.  The security guard said that during football games you can see replays from the giant new scoreboard.  We also had a great view of "A mountain".  Tucson is a lot greener than you think.  It was cool looking  over the city and seeing so many trees!  If we looked off into the distance, we could see Picacho Peak.  Home.  What a view! 

Later today Riley met Brandon.  A 16 year old fighting cancer.  He was diagnosed last May.  He has been through a lot.  Riley and Brandon did their walk together and talked up a storm.  Good for them both. :) 

Riley received a package a few days ago.  It said not to open until after Christmas.  We were obedient and today this is what we found!

I am so thankful for ALL THOSE who love and care for Riley.  They truly boost his spirit and remind him of their concern and love.  It means more than anyone could possibly understand.  Just to know that loved ones are cheering you on in hard times ... means the world!!

Thank you!!

Labs today:

White blood cells:  0.6   (normal 4.5 - 13.5)

Red Blood cells:  8.7   (normal 13.5 - 17.5)
Platelets: 22   (normal 150 - 425)
ANC: 24   (< 500 = severely neutropenic)

Day 13

Sunday. Christmas Day.

Not exactly a regular Christmas around here. The staff was amazing though and they did everything to make us comfortable and happy. Santa and Mrs. Claus came around to see us and brought many gifts for all of the kids! Wow, that was pretty cool!! We had a fun morning together opening presents. I was just so happy to all be together!  Nana and Papa came early to help us celebrate Christmas.  After a while Papa found a safer place in the hall.  I thought that was pretty funny!  It did get a little cramped in our room.  :)

Then about 10ish Riley started feeling tired. We kicked everybody out of his room and let him sleep. We knew his red blood cell count was low.

A few hours later he woke up for a bit. Just around church time. Bro. Weiss from our ward set skype up for church. Completely awesome! Technology is amazing!! Riley watched a bit and then felt light headed and foggy. He went back to bed and we got the blood ordered. Because of his reaction to blood products, he is always premedicated with tylenol and benydryl. That knocks him out and he slept for the rest of the day. The other kids still hung out in the other room, playing, playing, playing! They had a ball.

The red blood cells take 2 hours each to go in. Riley had 2 units transfused today. By the night he was kinda waking up, but really took about another hour to get out of the "fog" of medication. By about 9 at night he was ready for the day. Ooops. Days and nights get switched around here. Riley decided to do his laps around 10pm. The nurses loved seeing him race around the floor. He is superman!

Labs today:
White blood cells: 0.4 (normal 4.5 - 13.5)
Red Blood cells: 7.4 (normal 13.5 - 17.5) (received 2 units)
Platelets: 29 (normal 150 - 425)
ANC: 36 ( < 500 = severely neutropenic)

Day 12

Saturday.  Christmas Eve. 
So, even though Riley has to spend Christmas in the hospital, the nurses and staff are so wonderful, they really are making it OK that we have to be here.  Besides the fact that Santa has been to our floor 3 times this week... We also have had carolers and wonderful people (who we don't even know) bringing gifts for Riley.  The staff here has made it possible for the rest of our family to spend the night here (in a room next to ours). A volunteer walked around this afternoon with a cart full of cookies, milk and carrots.  They were passing them out for kids to set out for Santa and his reindeer tonight. Santa will be here in the morning with gifts for all the kids.  I think it will be a magical and memorable Christmas!  Our most vauable present is that we are here, all together, celebrating as a family.  What a blessing that we no longer will ever take for granted!

This is where I finished my wrapping this year.

Our Christmas Eve dinner (in the UMC cafeteria)

The kids loved roaming around the halls.  From the nutrition room to the play room, it was a fun adventure!

Labs today:

White blood cells: 0.5 (normal 4.5 - 13.5)
Red Blood cells: 7.8 (normal 13.5 - 17.5)
Platelets: 33 (normal 150 - 425)
ANC: 85 ( < 500 = severely neutropenic)





Day 11

Friday.  Today was an amazing day. 
I woke up to the nurses starting Riley's chemo a little before 8:00. 

Day 10

Thursday.  This was a busy day! 

Chelsea, the child life specialist, talked to the kids today and explained what was happening to Riley.  (What it meant to have leukemia.)  She explained what "good blood" was, and what "cancer blood" was.  She explained about him losing his hair and what a port was.  She did a great job.  The kids even asked a couple questions.  She was able to explain a very complicated sickness in a way that they could understand.  They each made their own sample of "good blood" and "cancer blood" using red hots for the red blood cells, small marshmallows for the white blood cells and rice for the platelets.  They liked it.

We then saw Santa near the library downstairs.  For the first time EVER, Bryant wasn't afraid of Santa.  He even sat next to him!!  So shocking I had to get a picture.  Santa gave each of the kids a cute little pillow pet.  (Maybe that is why Bryant like him so much.) 

Then we went to the clinic to get the kids blood tests.  They were each so courageous!  We had Chelsea with us and she helped Bryant and the kids be a little distracted with a cartoon on her ipad.  The clinic was ready for us.  They had several nurses available to help our group, so they thought it would be a good idea to do it all at once.  ...  Looking back, I would not do it that way again.  We thought at the time that it would help ease anxiety to do it all at once.  But instead, I was not able to comfort each child during their time of need...  I kinda went from one to the next trying to give comfort to all, - all at once.  Not an easy thing to do, and it all kinda happened very quickly.  Vince was with Riley during our appointment at the clinic because his work, DPS, brought in baskets of goodies for Riley and the proceeds of a bake sale they held on our behalf.  (So wonderful!!)  Vince made it down to the clinic right at the end.  He helped distract and comfort.  It worked out, they were each so brave!  But it was a little crazy!

Look at those pale faces!!  Poor, brave kids!   The nurses ended up taking 3 big tubes of blood!!  EACH!  They were all so brave.  Really brave.  Bryant sat still as a statue, even with a tear rolling down his cheek... but he would not move!  What heros, each one!

It will take about 2 weeks to get the results from the blood tests.  There is only a 25% chance for each child that they would be a match for Riley.  The outcome of a transplant with a sibling donor is so much better than with an unrelated donor. We are praying for a match!!
It has been a big day.  We are so thankful for all the wonderful support and encouragement we are getting from so many around us.  We are acutely aware of these many blessings.

Labs today:
White blood cells: 0.9  (normal 4.5 - 13.5)
Red Blood cells: 8.4  (normal 13.5 - 17.5)
Platelets: 13  (normal 150 - 425)  (one unit transfused)
ANC: 126 ( < 500 = severely neutropenic)