Day 16 (ish) - Hanging in there..

Sorry for not writing last night...  I was very tired after our flight home.

I talked to Patrick and Ryan is starting to struggle with the chemo.  His ANC is down to 26 and his WBC is practically 0.  He is exhausted and can no longer eat.  He ate some ice cream, but really doesn't want to eat anything significant.  (Another thank God that we have TPN so we can keep him hydrated and he can live on TPN without eating). 

He pulled a tendon in his leg a few days ago, and it's really hurting him.  They can't give him aspirin or any normal pain reliever, because it would mask a fever.  And with his ANC level so low, he can get a bug at any time.  So, they are giving him Dilaudid for pain (which is an opioid pain reliever), which is making him loopy, but helps with the pain.

Because of his low numbers, we will probably not be heading out of the hospital any time soon.  He could pick up an infection at any time.  In addition, his liver numbers are starting to come up.  Obviously, with a liver transplant, we are very aware of the symptoms of liver failure, and Patrick noticed that his eyes were a little yellow.  The doctors were expecting this, so no one is really overly concerned, but they are aware...

We got home safely from Orlando, but are pretty wiped out. 

Thank you all for the love and support and prayers!

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Blasts - (not checking this every day anymore)
ANC - 28
Hematocrit - 21.5
Hemoglobin - 7.6
RBC - 2.54
WBC - 0.2
Creatine - 0.2
Glucose - 98
Platelets - 21
PT
APTT -
Bilirubin (Direct) -
Bilirubin (Indirect) -
Description of lab numbers, in layman's terms:
Blasts - roughly the number of leukemia cells found in the sample.  We want this to be 0.
ANC -  This tells us how well his body can fight off normal infections... We want this to be greater than 500..  Normal would be greater than 1500.
Hematocrit/Hemoglobin (H&H)  - This is a number of how much blood is in his system.  His normal range is 28-32/9-11.  The numbers are linked, so they are usually referenced together.  We will transfuse him more Red Blood Cells if he gets below 21/7.0.  (this is the blood you donate at blood drives, and we expect to use lots of it)
RBC (Red Blood Cells) - The number of Red Blood Cells in his body.  Normal is 4 - 5.5.  He has always been low, so we are happy with numbers around 2.5.  This number will go down with chemo.
WBC (White Blood Cells) - This tells us how many white blood cells he has (in thousands).  Normal is between 4.5 and 10.  We expect this to remain low, between 1.5 and 2.5 for a while.
Creatine - This is a good number to make sure the kidneys are working.  Normal range is between .5 and 1.2... If this gets higher, it means his kidneys are struggling.
Glucose - This number tells us that the pancreas is working.  Some kids struggle with diabetes as a result of the meds.  We want to see this number remain above 60 and below 150.
Lymphocytes - Non-cancerous T-Cells and B-Cells.  Normal would be around 1000, so we expect this number to be low.  This is the number of cells that will kill off bad cells like viruses.
Platelets - This is the number of platelets in the blood, which helps with clotting.  Normal is greater than 150.  We will transfuse more platelets if he gets lower than 30.
Co-Ags (PT,APTT) - These numbers tell us how fast he clots.
Bilirubin (Direct/Indirect/Total) - Bilirubin tells us how well the liver is working.  Normally, these numbers are less than 1, which is good.  However, when the liver starts to be under stress, they may go up.  Total Bilirubin is the Conjugated (Direct) + Unconjugated (Indirect).  The doctors said these numbers might come up, as his liver is trying to process all the meds we are giving him.

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