Day 18 - Doing better today

Finished another Lego plane!

Ryan is feeling better today, thanks to the awesome advances in medical science.  Since the nurses caught his infection so quickly, he's already negative for his blood cultures since the first one.  We also got the results from the cultures.  Confirmed that it was E. Coli and Enterococcusus, which are both stomach bugs.

Talking with Infectious Disease and the team, they are sure that this was what is called 'translocation'.  Since Ryan has no immune system, and there are bugs that just live in your intestine, sometimes those bugs will travel from the intestines into the blood stream.  Normally, your immune system will kill these bugs off and all is good.  However, since Ryan essentially has NO immune system, he can't kill them on his own.  This is why we love antibiotics.  Patrick has been extremely impressed with the procedures of the nurses and doctors and he is absolutely positive that this bug was NOT from contamination from any of the staff... They are awesome!

So, he is feeling much better, no fevers and the infection is under control.  He will be on IV antibiotics for a few weeks, just to be sure that every little bug is killed off.  The doctors decided not to give him his PEG chemo today, due to his infection.  They considered giving it later, but since he is reacting so well to the chemo, they may just drop this dose all together (rather than reschedule it for later).

On the negative side, Ryan is starting to lose his hair.  Obviously, this is not surprising, but it was kind of hard for him.  He didn't mind, per se, but he was concerned that people would laugh at him.  Patrick was very good at comforting him, and we reminded him that he could always wear a hat.  And, as a boy, going bald isn't that bad.  He asked Patrick to shave his head, so it wouldn't look strange (falling out in spots), so they may do that later this week.  Kinda makes my heart hurt, but, again, we knew this was coming.

I'm still recovering from my trip to Orlando (gotta love jet lag) and we are getting ready for the end of school.  I'm trying to mentally prepare myself to see my oldest child graduate.  One emotional drama at a time... I'm starting to plan my trip out to Seattle for when the kids are out of school, probably next Thursday or Friday.

Thank you all for the continued support and love and prayers...

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Blasts - (not checking this every day anymore)
ANC - 0
Hematocrit - 21.3
Hemoglobin - 7.4
RBC - 2.43
WBC - < 0.2
Creatine - 0.2
Glucose - 87
Platelets - 30
Bilirubin (Direct) - 2.4
Bilirubin (Indirect) - 2.0
Bilirubin (Total) - 4.4

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.