Day 30 - Then and now

     The family and I have had some emotional days lately.  Some of this is related to working with our healthcare team on how to resolve Evan's on-going stomach issues and some of this is from our day-to-day reports of how his body is responding to the chemo treatments.  As of now Evan continues to have severe stomach pains.  Not wanting to increase his chances of constipation we've switched his narcotic to Nubain.  It doesn't have a constipating side effect, however it seems to only dull his pain for about an hour.  The rest is on Cristy and I to help manage the time and take his mind off of the discomfort.

Evan decided "my couch" looked more comfortable than his bed.

     Evan's rash is starting to fade away due to his body being more able to fight on its own (more on that later).  Also his hair is coming out much more frequently.  Not wanting to shock him we've decided to go with a haircut approach that calls for taking small amounts off at a time.  In addition to the general discomfort he feels, his temper is very volatile due to a month's worth of steroids.  Luckily for us he only has a few more days of that and then we have to wait for it to naturally metabolize from his system.

Beginning the hair shortening process.  He's not thrilled.

     When we first started this journey Cristy and I were extremely uneducated about leukemia and blood counts and side effects and cancer in general.  Like most families in our situation we've read any literature provided by the hospital so we can try to become more knowledgeable about the physiology behind the drugs and our child.  Below is a rundown of definitions and Evan's blood counts on day 1 all the way to now on day 25 of Induction.  Some of them have been higher, but he had a chemo session a couple of days ago and they've taken a very slight hit.

The definitions have been provided from Childhood Leukemia - A Guide for Families, Friends and Caregivers by Nancy Keene.  The types I've selected are generally the ones the doctors focus on when discussing his health status with us.  There are many other counts captured during his daily blood draws, however they don't indicate an increase or decrease in the leukemia cells.

White Blood Cells (WBC)

These are the cells the body produces to fight infection and parasites.

Value for healthy children - 5,000 - 10,000

6/17/2016 - 6,320 (this number was artificially inflated by the cancer)

7/16/2016 - 4,130

Hemoglobin (Hgb)

Hemoglobin carries oxygen to the body and are transported via red blood cells.  During induction and consolidation children may have low Hgb levels because both cancer and chemotherapy decrease the bone marrow's ability to produce new red cells.

Value for healthy children - 11.5 - 13.5

6/17/2016 - 6.8

7/16/2016 - 10.6

Red Blood Cells (RBC)

Red blood cells are produced by the bone marrow continuously in healthy children and adults.  These cells contain hemoglobin, which carries oxygen and carbon dioxide throughout the body.

Value for healthy children - 3.9 - 5.3/mil

6/17/2016 - 2.60

7/16/2016 - 3.91

Platelet count

Platelets are needed to repair the body and stop bleeding through the formation of clots.  Because platelets are produced by the bone marrow, platelet counts decrease when a child is on chemotherapy.

Value for healthy children - 160k - 380k

6/17/2016 - <1,000

7/16/2016 - 155k

Absolute neutrophil count (ANC)

The ANC is a measure of the body's ability to withstand infection.  Generally an ANC above 1,000 means the child's infection-fighting ability is near normal.

Formula - Segmented neutrophils + band neutrophils x WBC

Value for healthy children - 1,000+

6/17/2016 - None detected by instrument

7/16/2016 - 2,700

     If you're still awake after reading these definitions and counts then I'll fill you in on the rest.  Evan is scheduled for surgery Tuesday at 1:00 to withdraw bone marrow and spinal fluid for testing and to install the PICC line in his arm.  This will allow the medical team to administer chemo in the near future until his clot clears and we're able to put the port back in.  As long as there are no other unexpected surprises we're scheduled to leave late next week.  I think I speak for the entire family when I say that will be a very welcome change for all of us.  

Spending some time with the music teacher.

     The results of the bone marrow extraction will either show leukemia or not.  If not, he's considered in remission; if so, it will change his chemotherapy plan.  Although not confirmed until the bone marrow can be analyzed the general plan is to wait 7 - 10 days for his blood counts to rebound and then begin Consolidation.  This means new drugs, a changing frequency and dosage amount for the next 28 days.  Based on my reading the next round of drugs will reduce his blood counts and significantly curb his appetite.

     The end of phase 1 is in sight and good or bad it's been a hell of a journey.  I've found out a lot about myself, more about my wife and way more about the type of fighter my oldest son is.  The doctors tell us it gets easier on Evan because his body will begin to adjust, but I know we're far from out of the woods and this likely won't be our last trip to the ER.  We'll continue trying to take it one day at a time and provide support to each other to keep moving forward.