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)