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)