Monday, February 1, 2016

A Long Time Coming

For almost 2 years now, I stopped posting, for the sake of updating purely on Mailyna's Facebook Page.  It was an easy outlet (and still is) since it is connected to my personal facebook, especially when she was in the hospital.  The visibility (and accessibility) just makes so much more sense!  But I didn't want to just let this blog slip away into oblivion.  To see what the last 2 years have been filled with, please check out her FB:  AMatchForMailyna

It's been almost 2 years now.  The last time we shared an actual blog, Mailyna was getting ready to go into the hospital for transplant.  5 weeks in the hospital, 97% of it in isolation.  The chemo was terrible, but the days to follow were worse.  We slowly watched this little ray of sunshine burn out, day by day.  But as the weeks passed by, the sparkle never left her eyes & she slowly, but surely, returned to us, stronger than ever.  Every bit of her recovery was more than we could have hoped for.  The doctors & nurses all loved her & shared how amazing she was doing!  She was sent home weeks earlier than actually expected!  Her hospital stay was followed by 6 months in home isolation.  Since it was the 2nd half of the year, Mailyna spend her birthday, and all of the holidays from June-December, with our small family, to ensure that no extra viruses entered our home or Mailyna's immune system.  Our family was blessed to have her released from isolation on Christmas of 2014.  

Mailyna went back to school January 2015, almost a year after she left for transplant.  The 2nd half of the school year is hard to jump into!  Mailyna went back a different person.  She lost friends that she thought were her besties, but it built up her character, to know who had her back.  

When we hit the one year anniversary of her transplant, we crossed our fingers, in hopes of reaching out to her donor.  As luck would have it, this wonderful angel that saved my baby, was just as eager to meet us!  We coordinated with the AADP, who worked with our donor, and over the summer of 2015, Mailyna & Kristine were able to embrace each other with open arms!

After starting school in the 8th grade, life seemed to resume back to normal.  Every 3 weeks, we go in for phlebotomy, to get rid of the excess iron.  It is the most effective, versus chelation therapy.  After leaving the hospital, her iron levels were nearly 1600.  At her last appointment, she was at about 800.  To (finally) have her port removed, she should be at/below 500.  We're almost there!  

I'm hoping to really pass this along, so that this blog can really be about Mailyna, by Mailyna.  She's 13 (I know, right?!) and she has grown into an articulate young lady.  She has spoken at several events in support of AADP, as well as BayKids, a nonprofit in the Bay Area, that works with children in local hospitals, to empower them with art & film making, to help distract them from their ailments.  Her acceptance speech and her short film, are both below.

I hope you enjoyed the crash course of the last 2 years!  Please visit her FB, AMatchForMailyna, for a better detailed account of her journey.  Thanks for checking in with us!

-One busy mama