Day 33 - We got a visitor!

We got a visitor!  Breanna and Adam came by to visit (Breanna was Ryan's 4th grade teacher, last year)  While he was a little grumpy today (coming off the steroids makes him hyper sensitive to change), Patrick and I really enjoyed the conversation!  It's amazing how nice it is to see familiar faces!  Thank you both so much!

Today was a good day, with no procedures or changes or problems (I can't say that too loud, or he'll hear me!).  Labs looked great and the swelling and redness on his belly is going away.  The doctors are really pleased!  The outpatient Oncologist, who will be our primary doctor once we start the next phase, came in to visit us today, and give us a roadmap of what to expect.  The are currently thinking of having us outpatient in clinic on Monday morning... which would mean discharge from the hospital sometime in the next day or two.  Woo hoo!  (but don't tell Ryan!)

So, the next phase should consist of 8(ish) weeks, depending on how his numbers go.  If he holds on to high enough platelet and ANC numbers, and doesn't get an infection, and doesn't have anything else go wrong, the phase takes about 56 days, or 8 weeks.  But, this is Ryan and things never go as planned, so we're just going to go with it.  If something goes wrong, we may delay a few days until things get back to 'good'.


The first 2 weeks will consist of 4 day a week clinic visits, with IV chemo and some oral meds, and of course, lab draws and some IV fluid.  One of his chemo meds can dehydrate you, so they want to give extra fluid on those days.  In addition, he'll have weekly spinal taps for the first 4 weeks (we will plan on going straight to Interventional Radiology for these, rather than trying without it)

We are holding steady, just grateful that things are going so well.  Thank you all for your posts on Facebook and the blog... I really appreciate all your thoughts and prayers!!

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Blasts - (not checking this every day anymore)
ANC - 1562 (holy cow, this is awesome!)
Hematocrit - 26.4
Hemoglobin - 8.9
RBC - 2.94
WBC - 2.4
Lymphocytes - 490
Creatine - 0.2
Glucose - 61
Platelets - 73

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.
ALT/AST - these are liver numbers, letting us know how much stress the liver is under.  Normal range is between 10-50.