Day 30 - Ryan starts throwing curveballs...

Ryan decided that this treatment has just been way too easy.  He is currently on antibiotics from his infection 2 weeks ago.  However, he managed to spike a fever this morning.  In addition, he has a swollen belly.  We started a second antibiotic this morning and called in GI and Surgery.  We did an XRay to look at his belly, and all looked fine.  But, they still didn't know what was going on, so we ended up in CT this evening, with contrast, looking at his intestines. 

The on-call doctor came in to talk to me this evening.  His transplanted intestines are 'thick'.  The theory is that this can be caused by:  1)  Infection in the intestines.  2)  Side Effect from the Chemo.  or 3) Rejection of the transplant. 

Any time the doctors use the word, 'rejection', it causes an increase in our worry level.  However, we are thinking that with his very low ANC numbers, it would be very hard to be in rejection (i.e. he has no immune system, he has no ability to reject.)

He has been tolerating the chemo so far, so we think that a side effect would be unlikely.  Not impossible, but unlikely.

Which leaves us with an infection.  While we are treating the infection in his blood, this might be an infection in his intestines.  We went through something like this about a year and a half ago (December 2015 or 2014, I can't remember).  Back then, the docs thought it was rejection, which involved 2 different emergency life flights over a two week period out to Seattle from Great Falls, but it ended up as an overgrowth of bacteria in the intestines.

So, we've shared our thoughts with the team.  Apparently, the weekend on-call doctor has called the team and we will talk more in the morning (Ryan just couldn't let them enjoy their holiday weekend).  They would like to do a scope and biopsy, but with his low ANC numbers, it's more risky.  So, for now, we will do the wait and see thing.  They've limited his intake to just clear fluids to give his bowel a chance to rest.  (another theory is a reaction to dairy, from eating too much ice cream, so this treats that as well.. )

On the positive side, he feels okay now.  He's resting comfortably, getting Tylenol for the fever.  And sometimes, doing nothing is exactly what he needs.  I'm staying overnight at the hospital, so I'll be here if anything changes.  (I'm giving Patrick a much needed night off)

Tomorrow will be here soon enough and we will see how the team wants to proceed. At this moment, we are just so grateful that we are here, and they are doing everything they can for our son.  Also, while brainstorming with Patrick, we really want to send a shout out to Dr. Farmer in thanks for including that second pancreas in the transplant.  It seems to be really helping him... :)

Amazingly, it's easier to stay positive tonight.  But please continue to keep us in your prayers!

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Blasts - (not checking this every day anymore)
ANC - 92
Hematocrit - 23.1
Hemoglobin - 7.8
RBC - 2.58
WBC - 0.7
Lymphocytes - 494 (up from 215)
Creatine - 0.2
Glucose - 90 (apparently, no one is concerned about this anymore..)
Platelets - 89
PT - 16.5
APTT - 48

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.