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)

Day 40

Saturday.   Our Superman!

Labs today:
White blood cells: 0.7 (normal 4.5 - 13.5)
Red Blood cells: 8.0 (normal 13.5 - 17.5)
Platelets: 32 (normal 150 - 425)
ANC: 140 ( < 500 = severely neutropenic)

Day 39

Friday.   Day 8 of 8 of the second round of chemo.  Riley has handled it so well.  He continues to amaze me!! 
Today Riley participated in seminary.  Bro. Weiss who has facilitated church for Riley (by skype), has worked his magic again for seminary!  He cut through a little red tape at school to get wifi.  Riley's teacher, Sister Clark, has been amazing to make it happen in the classroom.  She has kept in contact with us and is willing to do anything to support Riley!  Awesome! Thank you!! 

Tonight the kids came by to see their older brother.  We helped Riley change his number on his window.  His count -up,  (not countdown).  Then we went crazy on the hall window too.  Of course the kids raided the nutrition room.  What is a visit with Riley without a juice and lucky charms and jello ?  :)

Vince then took the kids to the movies.  Mom stayed with Riley and me and we played a fun game together.  Really great to just enjoy T I M E together!!  When Vince got back he switched with my mom and she took the kids home for the night.  Riley had a friend come by for a visit, so Vince wisked me away to the movies.

Trey and Riley were just settling in for a night of video games and pizza when we left.  It was good to spend some time with my husband.  Just to be together, talk and pretend for a couple of hours that we were kinda normal.  I love him.  He is good to me!

Labs today:
White blood cells: 0.8 (normal 4.5 - 13.5)
Red Blood cells: 8.9 (normal 13.5 - 17.5)
Platelets: 41 (normal 150 - 425)
ANC: 208 ( < 500 = severely neutropenic)

Day 38

Thursday.   We met a volunteer named Michael.  He came around last week too.  He is finishing his second degree and trying to get into medical school. We found out through our conversation that he is LDS too.  It was very uplifting for Riley to speak with someone who not only talked about sports and liked to have fun, but also someone who has been on a mission and can speak of trials and enduring to the end.  They talked about perspective and he was so encouraging for Riley!  I am thankful for the angels that have been sent to uplift my son!  That is what it feels like.  Heaven sent angels.  Thank you to you all! 

Labs today:

White blood cells: 0.9 (normal 4.5 - 13.5)
Red Blood cells: 8.6 (normal 13.5 - 17.5)
Platelets: 43 (normal 150 - 425)
ANC: 126 ( < 500 = severely neutropenic)



Day 37

Wednesday.  Riley woke up and did his regular morning routine, but then fell back asleep.  That happens when you go to bed at 4am!!  Riley feels better at night and really takes advantage of the fact that he can sleep in the day.  So he woke up for good at about 1:30pm.  Our social worker made arrangements for Riley and me to get massages.  Nice.  I definately feel the stress settling around the shoulder area.  It felt really nice to have some of that relieved.  Riley liked it too.  We did our walk, Riley did the stationary bike a little and we hung out with the nurses.  We were discussing the fact that Riley's numbers are higher than they have ever been (and he is on day 6 of 8 for chemo...).  Although we don't like the numbers to be low, for fear of infection,  that is when we know the chemo is working.  Killing cells = low numbers.  The nurses ease my worries as they explain the cycle takes a few days to catch up to the results of the chemo.  My brain understands ... my anxious heart does not.  I have to remember that this is one of those "good days" that I need to cherish!  He really looks so great, and he is happy.  In a few days, he will not feel so well.  Cousin Trent came by and hung out for awhile.  Trent has an ROTC class at the Uof A, so he was in the area.  They watched a car show, talked about video games and had dinner.  Good day.

Labs today:

White blood cells: 1.0 (normal 4.5 - 13.5)

Red Blood cells: 10 (normal 13.5 - 17.5)
Platelets:  57 (normal 150 - 425)
ANC:  350 ( < 500 = severely neutropenic)

Day 36

Tuesday.  Day 5 of 8 of the second round of chemo.  Last day of all 3 medicines.  Chemo lasted for 10 and a half hours today.  Riley is a trooper.  Nana and Papa came tonight to spend some time with Riley.  They played a fun new game that a friend recently gave to Riley.  "The Logo game".  According to Nana, they laughed and laughed!! 

Labs today:
White blood cells: 0.7 (normal 4.5 - 13.5)
Red Blood cells: 9.3 (normal 13.5 - 17.5)
Platelets: 60 (normal 150 - 425)
ANC:  21 ( < 500 = severely neutropenic)

Day 35

Monday.  Day 4 of 8 for the second round of chemo.  Riley is handling it all so well.  Kyle and Kayla came by and hung out for awhile.  They went on a walk with Riley and then decided to help him decorate his window.  The patients mom from next door started it all by writing, "cancer fears me!".  Then Taryn, our nurse drew an Eagle.  So today was the day for Riley to put his mark on it! 

Then Riley decided to finish his walk.  We met up with Brandon, another patient, who is back in for another round of chemo.  The three of us walked and caught up with each other.  We were distracted as we chatted and were taken by surprise by Taryn and Melissa who got the boys good with some serious silly string!! 

Brandon and Riley warned the nurses that they would be plotting revenge!  They stopped to look out the window at the beautiful sunset on the mountains.  Riley talked about someday hiking those mountains again...   He'll get there.

Then later in the evening, we were visited by the Ross family.  They came as a "mariachi band", complete with chips and salsa for Riley to enjoy.  Funniest thing ever... they only knew Feliz Navidad in spanish, so that is what they played for him.  It was nice to have Riley hang out with such fun kids and I spoke to Sister Ross, who knows what this is like.  One of her older children had leukemia as a child.  He is 26 now and doing well. 

It really has been a great day.  A treasured day with my son.

Day 34

Sunday.  Vince and I switched last night.  He drove over to the hospital after work as I passed him on the freeway headed home.  I was able to spend time with the kids and have a regular night with them.  Vince was needing some time with Riley, so it is only fair that I share :)  Vince spent the night last night and was able to make sure that skype was set up for church today.  Not only did they get to hear our ward, but Papa spoke at their Stake Conference and Vince and Riley were able to watch it online.  Papa spoke on prayer. We are so thankful for our testimony of prayer and the wonderful gift that we have to communicate with our Heavenly Father through prayer.  We are aware of all of the prayers going out on our behalf right now.  We know and believe with all our hearts the power and strength that comes with those prayers! Thank you! 
Nana and Papa came over to the hospital after their conference to be with Riley, (Vince had to go to work).  Then Aunt Renee and Trenton came by bringing dinner.  It sounded like a party to me!  I am so thankful for their awesome support!  The genuine happy and cheerful attitude they bring can turn even a hard day into one with laughter!  I headed over tonight to be with my boy.  I love hearing about his day, and catching up.  Sounds like Riley had a great day!
Our motto ... {one day at a time ... and cherish each one!}

Nana's "air hug".  Love the looks they are giving each other!! :)

Labs today:
White blood cells: 0.8 (normal 4.5 - 13.5)
Red Blood cells: 10.4 (normal 13.5 - 17.5)
Platelets: 60 (normal 150 - 425)
ANC: 72 ( < 500 = severely neutropenic)

Day 33

Saturday.  Today was a quiet day.  Riley is low on red blood cells, which affects his energy.  Not feeling too talkative today.  I worry about him and the dissappointment we all feel about him not coming home this weekend.  Lets be honest... he wasn't going home... his numbers are too low...  But I wanted that to be the only reason.  Not that he still had leukemia cells in his marrow and they had to immediately start the second round of chemo.  UGH! 

Feeling sorry for myself...
Doesn't help a thing!

Looking at my son who is smiling right now... talking to the nurse about football.
I love him.  He is teaching me.

Aunt LaDawn came for a visit today.  She brought a birthday present for Riley.  So sweet.  We played a fun card game together.  I am very thankful for such wonderful family!

Labs today:
White blood cells: 0.6 (normal 4.5 - 13.5)
Red Blood cells: 7.9 (normal 13.5 - 17.5) (received 2 units)
Platelets: 61 (normal 150 - 425)
ANC: 54 ( < 500 = severely neutropenic)

Day 32

Friday. Started second round of chemo this morning.  Darn blasted white cells!! 
This is the round ... I just know it! 
One of the things Riley wanted to do if he could go home was to make sugar cookies! He has been craving them for the last few days.  Since he couldn't go home I made some last night after my board meeting.  The kids and Grandma helped.  Riley requested green frosting, so that is what we did!

This evening Riley had a few visitors, including Mr. Dwyer, Riley's 7th grade teacher from Red Rock.  He said it was the teacher in him... he had to bring a "thinking game" for Riley... chess.  It was awesome.  We had a nice visit, he was very encouraging for Riley.  So thankful Riley has such incredibe support!! 

Labs today:

White blood cells: 0.9 (normal 4.5 - 13.5)

Red Blood cells: 8.4 (normal 13.5 - 17.5)
Platelets: 56 (normal 150 - 425)
ANC: 27 ( < 500 = severely neutropenic)

Day 31

Thursday.  This afternoon we found out that Riley still has leukemia cells in his marrow.  When Riley was diagnosed he had 30% cancer cells.  This biopsy still showed 15-20 %.  NOT what we wanted or expected to hear.  The doctors were surprised because they say 70-80% of the time the patient is put into "remission" (not see leukemia cells in biopsy) after the first round of treatment.  They had talked about Riley maybe going home for a day or so before he started the second round, but now they will start chemo in the morning.  We were surprised and knocked down by this news.  Riley still so strong.  Determined.

Labs today:
White blood cells: 0.6 (normal 4.5 - 13.5)
Red Blood cells: 8.6 (normal 13.5 - 17.5)
Platelets: 65 (normal 150 - 425)
ANC: 24 ( < 500 = severely neutropenic)

Day 30

Wednesday.  Biopsy day.  After a round of chemo and 20 days recovery... what will they find?

This is Riley taking it easy after the biopsy.  Preston is entertaining him with playing the xbox. 

When Riley woke up in the post- op recovery room, before he even opened his eyes... he was asking for steak.  With A-1 sauce.  This boy has great taste!

We finally got xbox live to work!  It was a trick to get passed the hospital red tape... but we did it!  It is awesome that Riley is now able to play and talk with his friends.  It helps to feel normal, and not so isolated!  We are thankful!

Labs today:
White blood cells: 0.6 (normal 4.5 - 13.5)
Red Blood cells: 8.9 (normal 13.5 - 17.5)
Platelets: 27 (normal 150 - 425)  (1 bag transfused before biopsy)
ANC: 6 ( < 500 = severely neutropenic)

Day 29

Tuesday. Today was a good day. Riley continues to feel good on the marinol. No nausea, and craving funny things like corndogs and coffee cake... I drove around in search of coffee cake tonight. My son has the munchies. :) I just ordered nachos for him from the 24 hour room service and it is 10 p.m.

Papa spent the day with Riley. I am so thankful that those two like to hang out. What a blessing for Riley! Also Mr. Klell came by tonight. He hung out for a while and even went on Riley's walk with him. Riley's nurse made a lap counter for him. Ingenious. :) Good day!

Labs today:

White blood cells: 0.7 (normal 4.5 - 13.5)
Red Blood cells: 9 (normal 13.5 - 17.5)
Platelets: 32 (normal 150 - 425)
ANC: 14 ( < 500 = severely neutropenic)



Day 28

Monday. After the tough weekend, the doctors were determined to find "THE" medicine that would work for Riley.  Because of the regular reaction to the Marinol last night, Riley thought he could try it today and see how it goes.  It was a good day.  Riley felt good and ate food.  He asked for 2 Jr. Bacon Cheeseburgers from "Wendy's".  I ran right out and got that for my boy.  The rest of the day was regular.  No weird reactions.  I am so thankful!

We were visited by an organization called "Tu Nidito".  They do wonderful things for kids with serious illnesses.  They have a program called "courage beads".  They start a string of beads for Riley and he adds beads to it according to his story.  Each bead represents something.  His diagnosis, surgery, transfusions, bad days, good days, lost hair, tests, chemo.  It is really cool!  After Riley added the beads for his journey so far, he said, "Wow, look how much I've been through!"  It is a cool visual of his experiences and something he will always cherish!

Riley's hair is driving him a little crazy.  It is falling out in weird patches, getting on his pillow, and it still hurts.   Gina, our nurse today, gave him a good idea... Put soft tape on it and pull it off.  That is just what he did!!

Labs today:

White blood cells: 0.5 (normal 4.5 - 13.5)
Red Blood cells: 9 (normal 13.5 - 17.5)
Platelets: 30 (normal 150 - 425)
ANC:  5 ( < 500 = severely neutropenic)

 

Day 27

Sunday.  It has been a difficult weekend.  Poor Riley did not feel well at all today.  Because of his weird reaction to Marinol yesterday, (and he did not like the way it made him feel), he was given Adavan to help with nausea today.  It didn't work at all.  He couldn't keep anything down and felt soooo tired.  Out of it all day!  Vince spent the night with Riley and convinced him to try the marinol again for the queasiness.  And for heaven sakes... he needed to eat!!  Riley took the marinol and fell asleep kinda early.  It was a hard day.

Labs today:
White blood cells: 0.4 (normal 4.5 - 13.5)
Red Blood cells:   9  (normal 13.5 - 17.5)
Platelets:  35   (normal 150 - 425)
ANC:  10 ( < 500 = severely neutropenic)

Day 26

Saturday.  Odd day.  Riley continued with the Marinol for the nausea today, despite what happened last night.  Maybe this second dose would be better.  A little while later, Riley started to act very loopy. :)   It was a very odd occurrence, seeing my child "under the influence". 

On one hand... loopy.  On the other, eating and not throwing up.

 Riley would say stuff like, "Mom... mom... I do nnnoot like the way this makes me feel... haha, haha."

"Mmom, you're funny..."

"Mmomm, (looking around the room), I know that I am acting weird, but I just can't help myself.  Like I am saying to myself, don't talk, and I just keep talking."

"Mom, let's go for a walk around the halls.  (for the 4th time)

"Momm, take a picture of my eyes... I want to know what my eyes look like...

As the day went on "regular Riley" returned.  He did not know if the Marinol was worth the side effects.

Today was also moving day.  There were only 5 patients on our whole floor.  Because of this, our nurse Taryn asked if we wanted to move to a new room today.  That way we could have our pick of rooms.  We have to move every thirty days so they can do a deep clean of the rooms.  As we took one of our walks today, we decided on a new room, and I started to move our "stuff".  It is amazing what we have accumulated in a month at the hospital. 

By the night time Riley was feeling back to himself and still feeling good in the tummy.  Pizza for dinner!  YAY!

Labs today:

White blood cells: 0.5 (normal 4.5 - 13.5)
Red Blood cells: 9.2 (normal 13.5 - 17.5)
Platelets: 29 (normal 150 - 425)
ANC: 5 ( < 500 = severely neutropenic)

 

Day 25

Friday. Riley has been very nauseous, and has absolutey no appetite.  "Food is gross" he says.
Riley had a blood transfusion today (2 units of red).  He always has such a nice Benedryl nap during transfusions.  When he woke up his eyes were so dry that he could hardly focus.  He then began to complain that his throat was really dry, so dry that he had no saliva to swallow with.  The doctor felt like it was the patch that Riley was using for nausea (and then of course dried up even more because of the large dose of Benedryl from the transfusion).  They decided to take the patch off.  It didn't seem to help him.  The doctor told Riley about a medicine called Marinol that can really help with nausea and even increase his appetite. It can give the patient possible side effects, like hallucinations (although, rare).  Riley decided to take the Marinol.   All seemed fine for awhile.  Riley and I discussed  how his hair had grown back in a little.  He says it hurts.  It is like tiny cactus needles.  We were surprised that it had grown in at all.  The nurses told us that those little hairs will fall out, and they are.  In patches. 

Odd.


Riley's friend James came to visit. It was good to visit with him.  It is wonderful to have friends talk about regular stuff.

A few other friends stopped by and Riley had a good time.  Then he pointed out that several times during their conversation, he had forgotten what he was saying.  Even what the topic was about.  Odd.  We mentioned it to the nurse and she let the night resident know.  In the mean time Riley's pizza arrived.  The marinol had done its job and Riley was not only feeling better, but he was hungry!!  First time in 2 days!  Just as he had a few bites of pizza, the resident came in asking about the forgetfulness.  He did a few neuro tests on Riley and then said," just to be safe, don't eat any more... in case we have to do a few tests".  He explained that the symptoms could be from his new medication or from bleeding on the brain.  WHAT??  He left to go call the attending and we were left in a little shock.  Riley's nurse tried her very best to explain that it totally was his medication.  She explained that sometimes residents are a little lacking in their bedside manner.  The resident seemed like a really nice guy, but ... REALLY!?  Not long after, he reappeared with our pizza in hand, apologizing profusly.  He had spoken with the attending who knew without even looking at Riley that it was for sure his medication.  Even still... this rattled Riley.  Me too.

Labs today:
White blood cells: 0.5 (normal 4.5 - 13.5)
Red Blood cells: 7.4 (normal 13.5 - 17.5) - 2 units transfused
Platelets: 31 (normal 150 - 425)
ANC: 10 ( < 500 = severely neutropenic)

Day 24

Thursday.                                                    

Dec. 2011

Jan 2012

Jan 2012

I finished the puzzle today.  Puzzles are a tradition for the Gibson family.  Something we do after Christmas and through New Years.  It is always a very fun thing to do.  I thought it would be a fun distraction for me and Riley.  Turns out Riley wasn't much help :)  but  it was a great escape for me.  When I needed a mental break, I would just stare at this puzzle.  Somehow it helped me. 

Riley only ate a few bites of jello today... to please his mom : /  --- So nauseous! ugh.

Labs today:

White blood cells: .7  (normal 4.5 - 13.5)
Red Blood cells: 8   (normal 13.5 - 17.5)
Platelets:  32  (normal 150 - 425)
ANC:  7   ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 23

Wednesday.   Brenna came home from school today with this picture.  She was supposed to draw her favorite memory from Christmas break.  We really did have a nice Christmas at the hospital, but my heart hurts that my children, all of them, are having to go through this difficult experience.  I know they are tough.  I'm counting on their resilience.

Labs today:
White blood cells:  .8  (normal 4.5 - 13.5)
Red Blood cells: 8.2  (normal 13.5 - 17.5)
Platelets:  44  (normal 150 - 425)
ANC:   0  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 22

Tuesday.  Match Day!!!  I had Bryant at his 5 year old check up with Dr. Villar when we got the call from Riley saying that the results from the Bone Marrow Match came in. (We have been waiting for almost 2 weeks!)  Dr. Kopp told him we had 2 matches!!!  Preston AND Bryant are perfect matches for Riley!!  What an incredible blessing!  The chances that a sibling will be a match is only 25%.  Those are not the greatest odds.  So... incredible that we got two!!  Riley said that the doctors and nurses were giving high fives all around!  Everyone was so excited!  I hated to miss all the excitement, but we had our own celebration with Dr. Roberts and Dr. Villar.  Bryant is a miracle in his own right.  When he was born and again when he was 6 weeks old, he beat the odds.  Dr. Villar treasures our boy because of the experience we had with him. 

After the appointment, Bryant went to Nana and Papa's house for the day and I headed over to the hospital.  We were so excited about the match that we chatted with doctors and nurses and forgot to get any pictures for the day.  But what a wonderful day it was!!! We feel so greatly blessed for this miracle for Riley!!

Labs today:
White blood cells: .8  (normal 4.5 - 13.5)
Red Blood cells: 8.4  (normal 13.5 - 17.5)
Platelets:  16  (normal 150 - 425)   one unit transfused
ANC:  0   ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 21

Monday.  Riley is doing well besides a funny tummy.  He was feeling nauseous most of the day.  Still hangin in tough though. The doctor gave him a patch that sits behind his ear.  We'll see if that does the trick... His friend Jon Ross came to visit with his siblings, one of which had leukemia as a child.  It is so fun for Riley to have visitors!  What good friends he has!! 

Here Riley is on his walk.  Today he did 20 laps.  10 going one direction and 10 going the other.  Just spicing it up a little :)

Labs today:
White blood cells: 0.8 (normal 4.5 - 13.5)
Red Blood cells: 8.4 (normal 13.5 - 17.5) (received 2 units)
Platelets: 26 (normal 150 - 425)
ANC: 8 ( < 500 = severely neutropenic)

Day 20

Sunday.  Happy New Year!
What a weird way to start out a new year... but what perspective we have already on what is truly important and what can go by the wayside!! 
We started out the day by watching church on skype.  Brother Weiss has set us up with that for all 3 hours.  What a blessing!

The Dixons stopped by on their way to Texas.  They are moving there.  Then we did the regular, ... take medicine, read, puzzle.  Talk with doctors, nurses, watch espn.  The usual.  Then we started to get a flood of visitors.  As long as they are healthy, Riley loves to see friends and loved ones.  His friends stopped by with his favorite salt and vinegar chips.  Ernest, Kyle, Kayla and Ethan (and Sarah on skype- she stayed home with a cough).  Kyle's mom drove them over and was so wonderful to stay and let them hang out for a while.

Lillian Norris, principal of our school, came by.  I always enjoy talking to her as she is full of positive things to say!  I do feel such support from our community.  Then Aunt Renee came by with Madie and Trent.  They came bearing the gift of xbox!  They are letting Riley use an extra xbox that they have, along with many games.  Riley is so loved!  Trent and Riley have many games lined up!!  Awesome!!  Then our friends the Tarkets came by.  How lucky are we to be surrounded by such love and support!  Riley then had his shower, room cleaned and more medicine.  The usual nightly events.  He is a little on the worn out side now and has decided to relax, watch a show and go to bed. He has decided to start watching "24" on netflicks.  Vince and I were quite addicted to that show awhile back.  That will keep him busy.

Labs today:
White blood cells: 0.8 (normal 4.5 - 13.5)
Red Blood cells: 8.5 (normal 13.5 - 17.5) (received 2 units)
Platelets: 35 (normal 150 - 425)
ANC: 10 ( < 500 = severely neutropenic)