The Harnisch Family

The Harnisch Family

Sep 1, 2014

September - Platelet Disorder Awareness Month

After two years...yes has been TWO WHOLE years since my last blog post.    :-(   Life has just been SOO busy...

Well...I just learned that September is "Platelet Disorder Awareness" month...

as a an effort to share "McKenzie's Recent Journey"...I felt inclined to fire up the 'ol blog goes:

Bruises. What's the big deal?  We all have 'em.  
And what energetic (just as clumsy and careless as the next person) 6 year old doesn't have bruises?  It's pretty much a right of passage, am I right?  Well, our soccer playing, acro dancin' bike riding, tree climbing, always rolling on the ground with her little sister, McKenzie was no exception...however, in addition to the "I fell and bumped myself" type of bruises, she also had a significant amount of "unexplainable and refusing to heal" type of bruises (mostly on her legs, back and arms).  After several weeks, and more random bruises appearing on top of previous random bruises...add to that a new development of nose bleeds that would not stop.  I finally decided it was time to pay a visit to the pediatrician. 
Doc ordered up a CBC.
Drew McKenzie's blood.
Sent it to the lab.

Within minutes doc returned to our room.
"Mom", she said with a serious face, "McKenzie's platelets are significantly low".  "To put it into perspective, it's important for you to know that the average platelet count is 250-400...and McKenzie is currently at a 6.
"We still need to cross other "concerns" off the list, but it's likely McKenzie has a condition known as ITP (Idiopathic Thrombocytopenic Purpura).  Which is an auto-immune disease/blood disorder, in which her body attacks her platelets. 
"I just got off the phone with the Hemotology/Oncology clinic over at Children's Hospital. They have a room available for her and want to begin inpatient treatment right away."

As you can imagine...I was overwhelmed.  But more than anything, I was SCARED.  It was explained that without a sufficient amount of platelets a person is subject to internal bleeding.  These nose bleeds she has been experiencing could be indicative (or at least a precurser to) bleeding in her brain.  Big time fear set in.
A curious McKenzie from across the room chimed in "What does this mean?
"Well McKenzie" doc said matter-of-factually. "Here's the deal"  "Your body is low on platelets" "You and your mommy are going to get in your car and drive to a nearby hospital"  A worried look on her face, McKenzie asks "Why"?  "McKenzie this is a fun Children's Hospital, with lots of really nice doctors and nurses who are going to give you some medicine to help make you feel better".  "Do we have to stay the night?"  "Yes, it will be just like staying at a fun hotel, with games, and movies and stuff"   Will it hurt?  McKenzie asked.  "Yes, McKenzie, it might"  "But only for a short time.    This infusion is important in helping your body fight off these bad white blood cells, that are attacking your platelets.  Right now your Platelet count is very low, and it's important that we get that back up to safe levels"      "okay" McKenzie said. 

so what's any "self-respecting" mom to do in my shoes, at that moment?  
1) Call Joe (bring him in the loop - Macy was hanging with him at the office during our doc visit)
2) Call my mom (to cry and ask her to pick Toby up from the groomer - oh and let Macy sleep over!)
3) Call my sisters (cuz that's what they're for)
4) Oh and post to Facebook of course.  This is the status update that brought my friends/prayer warriors into the loop and made us feel LESS ALONE!       
"Well...Miss McKenzie is getting treated to an immediate "staycation" at Children's Hospital resorts & fun park - courtesy of Blue Cross Blue Shield. Congratulations??  :-(   Due to an unfavorable CBC, specifically extremely low platelet count (among other symptoms), she will begin inpatient treatment for what is likely to be Idiopathic thrombocytopenic purpura (ITP). They'll run more tests to cross other concerns off the list. At this moment this is all we know for sure.

Please keep our sweet princess in your prayers. Hoping for a comfortable stay, quick recovery and complete healing."


It turned out to be a long night...three failed attempts at inserting Intravenous Immunoglobulin (IVIG) into her veins (her bruising was just too significant). An IVIG is an infusion of antibodies extracted from the plasma of over one thousand blood donors...which will essentially overwhelm those "bad" antibodies that are attacking her platelets.   finally, around 3am...the fourth attempt was a success.

Long story forward FIVE months later...McKenzie's body responded positively to that first IVIG infusion.  Since her diagnosis in April, she has only been restricted from activities for a short time. Her counts, while still low, have maintained at consistently "safe" levels.  We continue to go in weekly (sometimes bi-weekly) to have her platelet counts checked.  So far so good.  She was given the go ahead to resume all school activities, dance classes and sports.  I'm not gonna lie though...girlfriend HATES those frequent visits to the hospital.  Some weeks are all out drama-fests.   :-/
We are optimistically hopeful that, after a few more months of close monitoring, it will be determined that she has an "ACUTE" version rather than a "CHRONIC" version of ITP and she will go into "remission."  It can take as long as six to eight months for this to happen.  Crossing our fingers, and sending many prayers up daily! 
Something that brought strange "contentment" and satisfaction to McKenzie's heart and mind, was coming to the realization that everyone has their "stuff".    "Macy has her "thing" and now I have my "thing."     Okay.  I suppose that's one way to look at it!

In the meantime, we do the best we can to make her appointments fun.  In some way, I see it as wonderful "mommy/daughter" bonding time.  #alwaysasilverlining!   :-)

In other news...McKenzie tells us she wants to be a scientist when she grows up.  
ha!      #figures.    :-)

 I love this kid!