Some Days are Harder than Others

Yesterday was my transfusion. My mama took me, instead  of my  mom. Wile I was there I had a fun time with her. The first thing we did was get my height and weight. Once they do that they got all that done I get to the room they want me in. When I  get settled in, the doctors get their things ready, before they poke my port. Yesterday they didn't have to poke me one time, but two times! They needed to poke me two times because my blood was clogged. Nobody knew what it was clogged from. When they poked me  the second time I started to cry. I started to cry because my port wasn't numb anymore. It really hurt. The second thing they do is go and get my blood at the Blood Bank. That reminds me when my Auntie Chris donated blood and helped someone like me. Once they do that they get the end from the needle and connect the other line to mine. The other line has the blood in it. In the end of my transfusion I pack my things and go home.
By,
Mailyna

Getting Ready for Transfusions (Mailynas Version)

For my transfusion is not easy some times. Before I go to my transfusion I need to get my blood drawn. At my transfusion I take my height,weigh myself, and stay there for about 5 hour. Wile I'm there I have a bag filled with goodies. In my bag I like to bring movies, books, homework, beads, and my emla. I wear emla so that when they poke me in my port, it wont hurt so much. While I'm at my transfusion, I start to miss school and my friends. I start to think of what they are doing and how much fun they are having. But on the other hand I am looking forward to seeing all my doctors there. My favorite thing to do there is doing crafts with Gina. Gina is a child life advocate/supporter. She is a very nice person to spend time with. Another  person to spend with is Stacey. Me and her both made up a hand shake together. This is how it goes; elbow elbow ,wrist  wrist, touch your pearls, blow a kiss. When ever I go in room 1 she a and I do the hand shake in the air. After my transfusion me, my sister and my pop or mom go to Fentons for ice cream.

By Mailyna

Staying Healthy as a Hippo

A lot of times, when people find out about Mailyna's condition, one of their first reactions is "but she looks so healthy; I'd never be able to tell..." and its absolutely true.  We have a medical team that we work closely with, that has become an extension of our family.  We're a part of the Pedi Hem/Onc Clinic at Kaiser in Oakland, CA.  They've literally been a part of my life since 2002. Because my family is a huge support system for me, we all pitch in & alternate who takes Mailyna in every 3 weeks.  Sometimes its my mom, or my dad, sometimes I'll take her, sometimes her pop will take her... but the amazing thing, the staff at Kaiser KNOWS my family.  They ask about her extracurricular activities, they ask about my parents, about Mailynas sister... they just know.  This has become on of the most valuable relationships we've built.

Mailyna is 9.  She has been going into the Oakland Pedi Hem/Onc for her transfusions since she was 6 months.  We actually started off going in every 5 weeks back then, but as she got older, the doctors realized it was more beneficial to have her come in every 3 weeks, giving her less blood, more frequently.  It kept her stronger, longer.  Looking back now, I have no idea how we were able to keep her hooked up for hours on end when she was a squirmy wormy baby wanting to crawl; or as a toddler when she learned how to walk & run.  When we bring my younger daughter along with us for transfusions, shes ALL OVER the place!! 

We have a routine.  Mailyna has her "transfusion bag" that she packs up & fills with whatever we need for the next day.  Movies, books, snacks, her blankey & baby (well, no baby now since shes almost outgrowing that stage).  In addition, inside is her Emla Cream to numb the port-site for easy, no tears access & her tegaderm tape.  That way its all together & ready to go for the day.  Also inside, are her beads.

Generally, her transfusions would take all day.  From 9am until about 4, we were there.  To minimize the time there, we take her in for blood draws up to 48 hours earlier, which is a peripheral stick in her arm, that isn't numbed with anything.  You can imagine how THAT goes!  But it cuts our time there down to about 5 hours instead.  Its a long day, but absolutely necessary.  The preventative & proactive measures we take keep Mailyna her healthy self.

Its an absolute blessing that we are in an area of the world that has such amazing care.  Many countries that are known for Beta Thal don't have the same advantages.  I just pray that the advancements in healthcare continue to grow & thrive, so that my little monkey will stay as healthy as a hippo!

-Mia