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)