Day 121 -- (Day +13)

Wednesday.      Odd chemotheraphy effects...

          

  Striped fingernails from chemo cycles.

Skin sensitivity

"Chemo Tan"

Labs today:

White blood cells:  .6   (normal 4.5 - 13.5)

Red Blood cells:   10.7  (normal 13.5 - 17.5)

Platelets:      31  (normal 150 - 425)

ANC:    312   ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 120 -- (Day +12)

Tuesday. 

Engraftment!!  The new cells are coming in!!  AWESOME!! 

Riley has been sleeping and sleeping!  It is hard work to develop cells!!

(This is a picture of Riley's Port and Hickman line after a dressing change.) 

Labs today:

White blood cells: .3  (normal 4.5 - 13.5)

Red Blood cells: 10.4  (normal 13.5 - 17.5)
Platelets: 34  (normal 150 - 425)
ANC:  72  ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 119 -- (Day + 11)

Monday.  It was a rough weekend.  Riley made use of his morphine button and continued to have fevers.  At one point over the weekend he was laying in bed with his eyes wide open, body very still and whispered, "Mom... mom... do you see this?  Do you see the cowboys??  They are all around.  Don't you see them??  then he fell asleep.  He was awake, but not awake.    Odd.     He remembers it later as very real, but knew it couldn't be.  The fevers were consistent, which led to blood cultures... waiting... and thankfully negative results.  Last night Riley had a fever of 105.4   -Scary.  Fevers could be a result of infection, or just the fact that he doesn't have counts.  Today is Riley's 9th day of having an ANC of 0.  An ANC is a number which indicates your ability to fight infection.  (Typically a person is between 2,000 - 5,000.)  Riley's white blood cell count has been .1 or < .1 for seven days. 
BUT today... it is .2  -- hooray!
The doctor feels like last night's high fever was an engraftment fever.  We shall see what tomorrow brings... are the counts on the way up?  It is a few days earlier than we anticipated...

Labs today:
White blood cells: .2   (normal 4.5 - 13.5)
Red Blood cells:  10.8  (normal 13.5 - 17.5)
Platelets:  35   (normal 150 - 425)
ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Today was Riley's last dose of methotrexate chemo.  A small dose of chemo to suppress his immune system so the new can take over.  This is a significant day!!  Last day of chemo!!

Day 118 -- (Day +10)

Sunday.  Easter Sunday.  Look what the Easter bunny left for Riley!  Sprite is the only drink that settles well and as he says, "gives him a sugar coating on his sore throat".  That Easter bunny is so smart! :)   Taryn mentioned to me that they were serving ham and mashed potatoes in the cafeteria today for Easter.  Riley wanted some so bad.  "It just doesn't feel like Easter without ham!"  So I thought mashed potatoes were probably fine on the throat and I could cut up some ham in very small pieces. ...  Didn't work out too well.  It tore up his mouth...    Sprite will do. :)  Actually, we are thrilled he is getting sipps of anything.  Some transplant kids don't try anything for weeks!  Hang in there Riley!

Labs today:
White blood cells: .1   (normal 4.5 - 13.5)
Red Blood cells: 10.2  (normal 13.5 - 17.5)
Platelets: 52 (normal 150 - 425)
ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

fevers continue

Day 117 -- (Day +9)

Saturday.  Riley continues to have fevers.  Ugh.  Because of the fevers, the doctor tested Riley's blood again this afternoon.  His platelet count from his early morning draw was 37.  Acceptable for our situation.  What the doctor explained is that fevers burn up your platelets.  They are sensitive little things.  So his afternoon platelet count was 22.  Unacceptable.  Riley needs a transfusion.  Because of his continued reactions to platelets, our doctor spoke to the blood bank again and they agreed to "volume reduce" his platelets today.  The bag is put in a machine that spins off the plasma from the actual platelets.  The plasma is where they believe his reaction is coming from.  It takes an hour to spin them and another hour sitting in a dark room to "relax" (again... sensitive, huh?)  Riley received the platelets this evening and believe it or not, still reacted!!  Not as severe as before, but he wheezed and crackled.  Again, he received steroids, breathing treatments and benadryl, along with an x-ray.  My poor boy.  He handles it very well.  Just a fact of life for him I guess.

After the evening with Riley settled down, I went home for the first time in almost 3 weeks.  The last several weeks, our house has had germy bugs.  Coughs and stomach flus.  I stayed away for fear I would get it and  1. Give it to Riley and  2. Not be able to be with Riley during the hardest part of this whole ordeal.  Thankfully our household felt better and I was able to see my kiddos for an unusual Easter.  Vince had to work until 11:30 at night, so we gathered then for an Easter Egg Hunt in the yard at midnight.  (Nana and Papa were helping for the weekend as Grandma and Grandpa had to return to Las Vegas for a few days.) 

We had a wonderful and crazy time together!  Good thing my kids are such night owls!!  We were up until after 1 AM!!  This is an unusual year.  Our kids are really amazing to handle it all with such sweet spirits!!  I am thankful to know that we all will be together again soon! 

Labs today:
White blood cells: .1  (normal 4.5 - 13.5)
Red Blood cells: 10.3 (normal 13.5 - 17.5)
Platelets:  AM 37   PM 22  (normal 150 - 425)
ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)

Day 116 -- (Day +8)

Friday.   The last several days have been hard.  Riley hasn't been eating at all.  He cannot even swallow his own saliva at times.  They have a device set up for suctioning that out when he is unable.  He is coughing and gagging up gunk, which makes the pain in the throat unbearable.  Thanks to morphine, he is managing.  He has a morphine drip which now gives him 3.5 mg of morphine every hour and then a button that he can push that will pump in a quick 1.5 mg every 10 minutes if he needs.  
Things might be turning around a little...  Last night Riley asked for an Eegee's slush.  I ran out and grabbed one... flavor of the month, "Orange Dream".  Yum!   I am so thankful that he is comfortable enough to get something in his tummy!   The doctors aren't pushing anything (because he does have the TPN), but agreed that if he was able to get something... anything down, even water, that would help his stomach from "falling asleep" to its job.  It will make eating again easier if his stomach stays awake.  He has sipped on water up until this point, but can't always keep it down.  I was so happy that he is able to try new things!  Everyone is thrilled with how well Riley is doing through his transplant.  Yep, he is hanging in!
Other happenings for the day...
Riley was low on red blood cells and had 2 units transfused today.  Fevers continue.  He also continues to have respiratory come up to check him out and give treatments for his wheezing.   ---Another day done.

Labs today:

White blood cells:  < .1 (normal 4.5 - 13.5)

Red Blood cells:  7.1  (normal 13.5 - 17.5)   2 units transfused

Platelets:  48  (normal 150 - 425)

ANC:   0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)



    

Day 115 -- (Day +7)

Thursday.  Riley's platelets were low today and he needed a transfusion.  He had all of the pre- medications and guess what??  still had an allergic reaction!!  His breathing gets seriously wheezy and he tightens up.  Thankfully, the doctors are prepared for Riley's sensitivity and "respiratory" came up, he received steroids and and extra dose of Benadryl.  Oh, LIFE.  This is a picture of Riley continuing his breathing treatment during the day.  He's tough!!

Sister Clark, Riley's seminary teacher, came by today.  She brought a basket full of "EGGStrordinary thoughts" for Riley!  Notes written from his classmates and also a scripture reference for Riley to look up which refers to a character trait of his.  How wonderful!!  I continue to be amazed and so grateful for the huge support that she has been for Riley this year!  Especially on harder days like this!!  The timing was perfect!

Labs today:

White blood cells:  .1   (normal 4.5 - 13.5)
Red Blood cells: 9.9 (normal 13.5 - 17.5)
Platelets: 27 (normal 150 - 425)  (one unit transfused)
ANC: 0 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)