March 5, 2015

• Awareness

  This is Aplastic Anemia Awareness Week.

   

  

  This has been a week of remembering.  Going back down that long road we started October 11, 2011.

  On Monday, Joshy's teacher brought paperwork that must be sifted through and filled out before the start of the new school year.  Because Joshy will be going to school from April, there are extra forms & hoops to jump through.  There was also a list of things that need to be gathered to take to school.   Joshy needs a basket to hold supplies at school so I dug out the basket he had used before.  I found it filled with things he has used back in the day.

  

  The shoes were 4 sizes too small & the lone shirt was 3 sizes too small.  I guess it has been over 3 years

  In the basket, I also found the file folders that were sent back & forth to school; 1 for the teachers & 1 or the school nurse.

  

  The notes on the nurses notebook page, says that he was having many long seizures, refused food & drink, he threw up.  It was at that point that school called and I picked him up and headed straight to the hospital where we ended up staying for 6 weeks before being transferred to the  cancer center where we stayed for another 4 months.

  On Monday, Joshy also had a checkup... His labs were the best they have been since October 11, 2011!  His WBC's, RBC's, & Plts were just shy of the normal zone!   Liver numbers are slowly going back down.  Kidney number are still wonky.  BUT CBC's are getting closer to normal.  Some would say he might be going into remission, but doctors don't really talk about remission when speaking of Aplastic Anemia.  Aplastic Anemia is for life.   Even if/when numbers return to normal there will still need to be regular monitoring.   I just know that if we can get numbers close to normal we might be able to come off the immune suppression drugs.  In might be safe to go out more.  The trip back to IN in September might actually be safe!!

  Today I read a blog post from another Aplastic Anemia parent.  The stark reminder was there... leukemia, while dreaded, would have been the easier diagnosis.  There are more treatment options and the success rate of the treatment is far greater.  "Today, most leukemias have a 98% percent survival rate. Aplastic Anemia is closer to 70%."

  The road has been long.  The road has been rough.  We will always remain on this road until the LORD calls us home.  However, we have learned much along the way.

  

  • 5:45 pm
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