Day 51

Wednesday.  The Williams family (my sister Becky), came into town last night.  We are lucky enough to have them here for a whole week!  They came to see Riley of course, but also wanted to help our family.  Becky said, "we are not here to be entertained... we are here to help".  They are awesome!!  Another perk is the instant fun with cousins!!  All of the kids are so excited to play with these cute Williams kiddos!!   It was great for Riley to see them.  Becky and Ben are very fun and so positive and encouraging.  We had a very fun visit! 

Labs today:
White blood cells: 0.6 (normal 4.5 - 13.5)
Red Blood cells: 10.4 (normal 13.5 - 17.5)
Platelets: 35 (normal 150 - 425) 
ANC:  12 ( < 500 = severely neutropenic)

Day 49

Monday.  Riley has had a few hard days.  He is a little sick and tired of people (including me) talking about food.  He is  tired of the same ol' menu at the hospital.  He is eating, but his weight still is going in the wrong direction.  Tough.  The routine of it all is getting to be a bit much.  He doesn't get time to himself... ever.  He has mentioned that the only time he is alone is in the shower.  He is constantly monitored.  How much did you drink Riley?... all the way to...How much did you pee Riley?  He doesn't feel well.  He has been at the bottom for quite some time now.  It is hard to be happy when you don't feel well.   I totally get it.  This is hard!!  I am amazed that he has had such an amazing attitude this whole time... 49 days!!!  That is a long time!!  No one expects him to be cheerful about it... yet he has been.  The nurses constantly talk about how incredible he is, what an amazing attitude he has!!  AND he does.  ...  Riley, take a break from being so tough!  It is fair to be upset!!  This is hard.  Not what you were expecting to be dealing with as a teenager.  This would be incredibly hard for anyone to deal with.  Really!!...

But know a couple things, my brave boy...

Dad and I love you.  You are a cherished son!

So many love you and want the best for you!  You have an enormous cheering section!!

You have a strong spirit and a strong body to fight this thing!!

So many we have met on the 6th floor are struggling too.  Is there something we can do for someone else?  Sometimes your own problems seem smaller in comparison to someone elses.  (It is good to serve.)

When you can endure and make it through those tough minutes, hours, days, weeks... you are strengthened every time.  You will be able to make it through the next tough time.  (This is life.)

You have a Father in Heaven who knows you Riley.  He loves you and has a plan for you.

Remember the gift of the Holy Ghost will bring peace and comfort to you.  Continue to live worthy of that gift (one of the greatest gifts Father in Heaven can give you).

You are a fighter Riley.  Keep fighting!!

Love, Mom


Labs today:
White blood cells: .4  (normal 4.5 - 13.5)
Red Blood cells: 7.8  (normal 13.5 - 17.5)  --2 units transfused
Platelets:  12  (normal 150 - 425)    --1 unit transfused
ANC:  4  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 45

Thursday.  Early morning blood draw showed his platelets were at 11.  Way too low!!  So Riley woke up and had breakfast and went back to sleep because of the benedryl.  Our doctor ordered the nurse to run the platelets through over a half hour instead of 2 hours like they have been.  It is the plasma that the platelets sit in that he is reacting to.  Less time exposure to the plasma means (hopefully) no reactions.  Our wonderful nurse stood over Riley as the platelets were going in this morning.  Just keeping a good eye on my boy!  He did well.  Papa just came over to spend the afternoon and night with Riley.  I am off to Wyatt's Pinewood Derby!  Life continues. :)

Everytime Riley has a transfusion, I think about the amazing gift that someone, a stranger, has given to us!  I feel completely indebted to these "volunteer donors".  These wonderful people who give of their time and body truly are saving Riley's life.  To date, Riley has received 22 blood transfusions.  When the nurse walks in with the red blood cells or platelets, (depending on his need),  I feel as though they are holding gold.  It really  is worth so much more than money could ever buy.  Thank you donors.  You are saving and forever changing lives!!

Labs today:
White blood cells: 0.5 (normal 4.5 - 13.5)
Red Blood cells: 8.6 (normal 13.5 - 17.5)
Platelets: 11 (normal 150 - 425)  - 1 bag platelets
ANC:  0 ( < 500 = severely neutropenic)

Day 44

Wednesday.  So Riley slept most of yesterday (because of transfusions), which meant that he was up all night last night.  He woke up from his Benedryl induced sleep at about 8:30 at night and was ready to do his exercises.  He was full of energy now that he had new red blood cells.  (Amazing how that can turn you around so quick!)  My boy had me up late...  Riley wanted to go for a walk in the middle of the night, which felt like the middle of the day to him.  As you can see the clock in this picture, it was getting toward 2 AM!! 

The night nurses were excited to have Riley cross over to their side! :)  I went to bed about 3 and Riley was still wide awake!!  When I woke up at 7, he was already signing in to seminary. He took his morning meds and our nurse let us know that Riley's temp had been creeping up.  (This is expected when your ANC is 0 !)  They got the doctor and took a blood culture and started him on antibiotics.  Riley said, "...but I feel so good!!"  The doctor replied, "I'm glad you feel good Riley, but you still have bought yourself some antibiotics!!"  Around 10am Riley started to feel tired.  I reminded him that he had been up ALL night!  He slept from 10ish to 4pm.  Vince came by after a job and we hung out with Riley. We were trying to keep him up a bit so he could sleep tonight.  He wasn't feeling the greatest, but still able to rest and visit.  Riley was headed down hill, around 6:30 we realized he should do his walk and take his shower so he could be done for the night.  We only made it around 7 times.  He started to feel dizzy and oh so tired!!  He dived into bed and felt a little sick.  He is required to shower every day with surgical soap and they clean and wipe down his bed and room while he is in the shower.  (Everyday he has new sheets and pillowcases.)  So he took his shower and then felt even worse.  He looked pale and could not keep his eyes open.  My boy needed more blood.  Even though it was night, they agreed that he needed a transfusion.  Red blood cells usually don't cause reactions, platelets are the problem.  So they got the transfusion going and Riley was out for the night at 8:30pm. 
Riley told me tonight that even though he didn't feel the greatest, it had been a good day.  So positive.  That's my boy!

Labs today:
White blood cells: 0.4 (normal 4.5 - 13.5)
Red Blood cells: 7.8 (normal 13.5 - 17.5)  one unit transfused
Platelets: 20 (normal 150 - 425)
ANC: 0 ( < 500 = severely neutropenic)

Day 43

Tuesday.  Papa stayed with Riley last night.  When I called Riley this morning, he was already up and signing in for seminary (7:15 this morning).  Good boy!  He did let me know that his hemoglobin was 6.4 today.   Low.  He will be having a transfusion today (2 units).  They want to do the transfusion in the day when all of the doctors are around, (becasue of his allergic reaction on Sunday).  Unfortunately because of the Benedryl, he will be going right back to sleep.

Riley received the Benedryl about 11am and slept until 8:30 tonight.  He woke up ready to do his walk.  He is amazing!

Our neighbor brought an amazing gift for Riley.   Personalized M&M's.  Really cool! 
Thank you Shelly!!  Amazing!!

Labs today:

White blood cells: 0.4 (normal 4.5 - 13.5)
Red Blood cells: 6.4 (normal 13.5 - 17.5)   2 units transfused
Platelets: 26 (normal 150 - 425)
ANC: 8 ( < 500 = severely neutropenic)



Day 42

Monday.  Only 10 in the morning and already a hard day.  I called Vince to see if Riley was up for seminary today and he said no, he had a hard night.  Besides the pain he had in his stomach, last night during the transfusion, he had an allergic reaction to the platelets.  The doctors helped him, and he was fine, but he was wheezing.  Wheezing!!  Ugh, they stopped the transfusion of platelets and did not give the red blood cells at all.  So with this information now swirling about my brain, I get the kids off to school and then get myself ready.  I had an appt. with the counselor at the High School to withdraw Riley and return his books. I head over there and was doing fine... until the nice lady at the desk asked what I was there for...  Tears flow.  I couldn't help thinking how badly I wished Riley was at school, having a normal day.  Instead, I was there to withdraw him.  It felt horrible.  The counselor gave me a hug.  I quickly composed myself, and signed the paperwork she had prepared for me.  I am now at the hospital.  Riley is sleeping.  I have spoken with the nurses about last night and now I am waiting for the doctor to come in.  ...

Labs today:
White blood cells: 0.5 (normal 4.5 - 13.5)
Red Blood cells: 8.2 (normal 13.5 - 17.5)
Platelets: 39 (normal 150 - 425)
ANC: 15  ( < 500 = severely neutropenic)

Day 41

Sunday.  Riley is having pain around his stomach.  He feels a deep pain, as though when he is digesting food, it is passing open sores.  That happens with the chemo.  It kills rapidly dividing cells.  Anything from his mouth down the GI tract, to the bottom can be affected.  The pain comes and goes.  Overall he is fine.  More annoying than anything.  He still is in great spirits.  We watched church, he played some video games, talked and hung out with friends and family that came by. 
Riley is low on both platelets and red blood cells today.  They said as long as he feels fine they can wait until tonight to give them (so he will sleep at night rather than the day, because of the Benadryl).  Glad to see the numbers doing what we want. 

Irene, one of our favorite techs, brought valentines to our room today. 

Riley wanted to keep our Christmas tree around.  We took off all of the ornaments after Christmas and just enjoyed the warm glow of the white lights.  We thought it would be fun to decorate it for any season.  Irene is on top of it!!

Labs today:
White blood cells: 0.6 (normal 4.5 - 13.5)
Red Blood cells: 7.6 (normal 13.5 - 17.5)
Platelets: 21 (normal 150 - 425)
ANC: 15 ( < 500 = severely neutropenic)