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

Insight on My World

This is a re-up of something I posted on my other blog, but it seemed fitting to move it over to share here also.  

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I happen to be "reminiscing" about the good ol' days with my pal & decided to peruse my old myspace account (that I havent touched in well over a year!) & came across the blog post I did back in 2007 when Mailyna was granted "her wish" to go to Disney World her kindergarten year.  It made me remember her kindergarten year today when I ran into another parent at the "ice cream social" at Mailyna's school & we chatted about our kids being in the same classroom this year & remembering when they were little kinderbabies.  So heres the article that from 2007, that ran my baby on  the front page of the Daily Review.

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Straight off Myspace:

Below is the article ran in Sept 8th's Daily Review about Mailyna.  Make a Wish is real & does great things for kids who truely deserve a little bit of sunshine in their lives.  I'll be forever greatful that my daughter was giving such a wonderful opportunity...

WISH COMES TRUE

Fairview girl gets trip to Disney

Foundation provides vacation for 4-year-old suffering from disease

By Karen Holzmeister, STAFF WRITER

Article Last Updated: 09/08/2007 09:28:16 AM PDT

Almia Armas and her daughter Mailyna Mayate, 4, in their Hayward home Thurs. Sept. 6, 2006, are going to Walt Disney World in Florida with the help of Make A Wish foundation. Mailyna suffers from a life-threatening blood disease.

FAIRVIEW — Mailyna Mayate resembles a little princess in her pink-spangled gown, rhinestone tiara and wand sparkling with pixie dust.

The 4-year-old feels like one, too.

 

In late August, she started kindergarten at Stanton Elementary School in Castro Valley. On Sept. 16, she turns 5. And, she was asked Thursday, "Mailyna, what are you doing Saturday?"

"I'm going to Disney World," she said, giggling before collapsing in a fluffy heap to work on Cinderella and Little Mermaid puzzles.

Yes, at 11 a.m. today, a lim-ousine is taking Mailyna, her mother and her grandmother to San Francisco International Airport.

They'll fly to Florida and stay five nights at "Give Kids the World" Village, a resort in Kissimmee, where Mailyna will eat at the Gingerbread House. They'll also have passes to four Disney theme parks, Universal Studios and Sea World in neighboring Orlando.

A special trip for a special little girl?

Yes, and the fulfillment of a special wish by the Greater Bay Area Make-A-Wish Foundation for a child who has undergone more physical turmoil in her short life than many adults.

Mailyna suffers from thalassemia, a life-threatening blood disease. Her body cannot produce red blood cells.

She has had blood transfusions every five weeks since she was 6 months old. Just before her first birthday, a port — or small reservoir — was implanted in her chest for the transfusions. It lasts five to seven years before a replacement is necessary.

If her body temperature exceeds 101.5 degrees, Mailyna is hospitalized for three days for antibiotic therapy. She has liver biopsies yearly. She's currently not a candidate for a bone marrow transplant, which could introduce blood-forming cells into her body.

In addition, Mailyna takes medication every day to reduce the effects of iron overloads on her body caused by the transfusions. The oral medicine is a blessing, said Mailyna's mother, Almia Armas.

Until a year ago, Armas had to prick Mailyna's arms or legs with a syringe at bedtime, so that medication could pump through her daughter's body overnight. The child's limbs grew hard and callused, and it hurt her to walk.

Now, looking at affectionate, effervescent Mailyna, you would never know she is anything but a normal child.

"She is normal," Armas insisted. "She plays, swims and dances Tahitian dances. She loves to go camping and to the snow, to work on the computer and to take pictures with my camera."

In part, Mailyna accepts her illness "because she knows nothing else," explained her grandmother, Eileen Armas.

Love and diligence account for Mailyna's quality of life.

She lives with her mother, grandparents, aunt and uncle near Don Castro Regional Recreation Area. Mailyna's father is not involved in her life, Almia Armas said.

The family has good medical coverage, in part due to Armas's employment and insurance plan at Kaiser Medical Center in Oakland, where Mailyna is treated in the pediatric hematology department.

"I wouldn't trade my life for anything else," Almia Armas, 25, said as Mailyna cried "Mommy!" and leaped into her arms. "She's my world."

And, for five days, Mailyna's world will be one of princesses and heroines whose names she reels off affectionately and quickly:

"Aurora (Mailyna's middle name). Cinderella. Sleeping Beauty. Snow White. Ariel. Belle. The Little Mermaid."

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Personal Disclaimer: I am sorry that in the paper they printed my statement that her father is not involved... while he is not a constant in her life or actively involved the way my family friends & loves ones are, he does see her occassionally & I have no doubt that he loves Mailyna very much, so I am sorry that everyone who has read it will perceive him in that light, regardless of whether or not the statement is true.  So to her dad, I'm sorry.

So, What is Beta Thalassemia Anyway?

Thalassemia is the name of a group of genetic blood disorders.  There are 2 types, Alpha & Beta Thalassemia.  Rather than provide a heavy description of both, I'll provide a quick breakdown on Beta, since that is what my experience focuses on.  Please check out Cooleys Anemia on a full description.  The following excerpt has been copied directly from their site.

"People whose hemoglobin does not produce enough beta protein have beta thalassemia. It is found in people of Mediterranean descent, such as Italians and Greeks, and is also found in the Arabian Peninsula, Iran, Africa, Southeast Asia and southern China.

There are three types of beta thalassemia that also range from mild to severe in their effect on the body.

Thalassemia Minor or Thalassemia Trait. In this condition, the lack of beta protein is not great enough to cause problems in the normal functioning of the hemoglobin. A person with this condition simply carries the genetic trait for thalassemia and will usually experience no health problems other than a possible mild anemia. As in mild alpha thalassemia, physicians often mistake the small red blood cells of the person with beta thalassemia minor as a sign of iron-deficiency anemia and incorrectly prescribe iron supplements.

Thalassemia Intermedia. In this condition the lack of beta protein in the hemoglobin is great enough to cause a moderately severe anemia and significant health problems, including bone deformities and enlargement of the spleen. However, there is a wide range in the clinical severity of this condition, and the borderline between thalassemia intermedia and the most severe form, thalassemia major, can be confusing. The deciding factor seems to be the amount of blood transfusions required by the patient. The more dependent the patient is on blood transfusions, the more likely he or she is to be classified as thalassemia major. Generally speaking, patients with thalassemia intermedia need blood transfusions to improve their quality of life, but not in order to survive.

Thalassemia Major or Cooley's Anemia. This is the most severe form of beta thalassemia in which the complete lack of beta protein in the hemoglobin causes a life-threatening anemia that requires regular blood transfusions and extensive ongoing medical care. These extensive, lifelong blood transfusions lead to iron-overload which must be treated with chelation therapy to prevent early death from organ failure.

Treatment of Thalassemia

Blood Transfusions

The most common treatment for all major forms of thalassemia is red blood cell transfusions. These transfusions are necessary to provide the patient with a temporary supply of healthy red blood cells with normal hemoglobin capable of carrying the oxygen that the patient's body needs.

While thalassemia patients were given infrequent transfusions in the past, clinical research led to a more frequent program of regular blood cell transfusions that has greatly improved the patients' quality of life.

Today, most patients with a major form of thalassemia receive red blood cell transfusions every two to three weeks, amounting to as much as 52 pints of blood a year.

Iron Overload

Because there is no natural way for the body to eliminate iron, the iron in the transfused blood cells builds up in a condition known as "iron overload" and becomes toxic to tissues and organs, particularly the liver and heart. Iron overload typically results in the patient's early death from organ failure.

Chelation Therapy

To help remove excess iron, patients undergo "iron chelation therapy," in which a drug is introduce dinto the body which binds with excess iron and removes it through the urine or stool. For many years, the only FDA approved iron chelator was Desferal, which has to be administered through a painful and difficult infusion process. When using Desferal, a needle is attached to a small battery-operated infusion pump and worn under the skin of the stomach or legs five to seven times a week for up to twelve hours.

In November 2005, the FDA approved an oral chelator, Exjade. This is a pill which is dissolved in water or juice and drunk, once a day. Many patients now have an option in terms of chelators, and it is hoped that more options will become available in the coming years.

The Compliance Problem

Compliance with chelation therapy is vital to the thalassemia patient's long term survival. However, many

patients find the administration of Desferal so difficult that they do not keep up with it or abandon treatment

altogether. If they do not have access to another chelating option, this is extremely dangerous. Lack of

compliance with chelation therapy leads to accelerated health problems and early death."

So, how does someone end up with Beta Thal Major? Basically like this:

From the Beginning

The story of our life has been a hectic one.  I wish I had begun blogging our experiences from the beginning, especially since I have yet to find any parents or families that have shared their own.  My hope is that I can create a story of Mailynas life that she can look back on to see & remember her great journey.  I also want to share our experience with parents who find themselves in our position & are looking for real life experience, rather than what doctors tell them about others.  Talking about her struggle is something that causes 3 major things for me.  The 1^st is strength to push on & be the support system for Mailyna.  The 2^nd is pain at remembering how tough my baby has to be, every single day.  The 3^rd is vulnerability.  A lot of times, I can talk freely about our life in the most matter of fact way that some people don’t understand.  But for me, it’s a coping mechanism.  Its our life.  It’s the only thing that keeps me from bursting into tears.  The beginning of our story is a tough one for me & causes tears to well up, but here it is…

I found myself 19 & pregnant.  My longtime high school sweetheart & I were already living together & just “knew” we wanted to spend our lives together.  The pregnancy was unexpected, but welcomed with open arms.  I had horrible morning  (ALL DAY really) sickness the first 3 months that dropped my weight drastically; celebrated my 20^th birthday; dealt with my great grandmother passing within days of my prepping to announce my news... but the kicker… a simple routine blood draw that showed something called the “beta trait”, which would change my life forever.

The trait isn’t really a big deal & doesn’t majorly affect the carrier.  In some instances, people could go about their whole lives with the trait & never know about it…  unless they decide to have children.  My then husband had to go for a blood test, only to find out that he too, was a carrier and they immediately sent us for genetic counseling.  We found ourselves driving all over the Bay Area to meet with this specialist & going for screenings & tests.  Ultimately I underwent an amniocentesis as soon as my doctors gave me the green light, roughly 4 months, so we could find out whether our baby would show any repercussions of its trait parents. 

Through out our genetic counseling, we were given odds.  There was a 25% chance that the baby would get both good genes & not inherit the trait at all.  There was a 50% chance that the baby would get the trait (one good from me, one bad from him & vice versa).  Then there was a 25% chance that we would both pass on the beta trait, resulting in the full disorder, Beta Thalassemia Major.  Its definitely a scary thought, but the odds (75%  vs  25% ) were in our favor.  I actually found an online article that sums it up exactly here.

Test results took 2-4 weeks or so.  All the while, this little girl was growing inside of me.  I was in my 5^th month watching tv after work when I received the call that the baby inherited both traits.  I remember sobbing, alone in my apartment for hours.  We were called into the genetic counseling office again to discuss the outcome.  Turns out that not only does she have the blood disorder, it’s a rare form that meant she wouldn’t be able to make any red blood cells.  She would need regular blood transfusions and chelation therapy because of the iron overload.  It was a whirlwind of information thrown at my highly emotional, pregnant mind.  I dove head first into the internet to research everything I could find, as we met with the specialist & clinics here in the Bay that cared for the Beta Thal community.

Although we were given the option, we decided to continue the pregnancy.  This angel was growing inside of me & I loved her with all my heart.  We had a game plan for our little girl & after a full 12 hours of labor, a healthy baby girl, Mailyna Aurora entered my world & changed my life forever.