Day 19 - Staying strong

Today was good... The doctors were pleased with his numbers, and decided to give him Tuesday's dose of PEG chemo.  His infection is totally under control and he's feeling good.  He's still losing his hair (which is totally expected), but he's hanging on to some hair and Patrick is hesitant to shave it, yet.

We got to Skype tonight, which was a little emotional (he missed me) but ended up just fine.  After about 30 minutes, he asked if he could get off the phone to watch his cooking show, which I took as a good sign.  He is very puffy (the steroids create what we affectionately call 'prednisone cheeks'), but he could still smile and tell me about his day.  His throat is still bothering him, so he's pretty much only eating ice cream (again, thank goodness for the TPN).

He scraped the inside of his nose and gave himself a bloody nose this afternoon, which required gauze and a funny picture.  Patrick has also been drawing on his hands with highlighter, so it glows in the dark.

Today was my last day of teaching for the year at Stanford, so a small weight has been lifted.  I still need to finish grades and cleaning my room, but I'm also one day closer to heading out to Seattle.  Allen's graduation is on Saturday, and then the rest of my kids finish up school next Wednesday.

Thank you to Char Lensing for the fried chicken and coleslaw and Thank you to Lois Hill for the Bailey's poke cake... :)  (And I feel as though I haven't thanked everyone for the awesome dinner's we have received... THANK YOU ALL SO MUCH!  We really appreciate it!)

Thank you all for the prayers and good thoughts... We love you!


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Blasts - (not checking this every day anymore)
ANC - 0
Hematocrit - 20.9
Hemoglobin - 7.2
RBC - 2.38
WBC - < 0.2
Creatine - 0.3
Glucose - 91
Platelets - 40
PT - 17.5
Bilirubin (Direct) -
Bilirubin (Indirect) -
Bilirubin (Total) -

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.