Showing posts with label Strength. Show all posts
Showing posts with label Strength. Show all posts

Tuesday, June 4, 2013

Meet Our Superhero Mia


What is Mia's favorite icecream? 
"Vanilla with Rainbow Sprinkles and Sour Gummy Worms"


What makes Mia smile/happy? "Blowing bubbles, Disney Princesses, swinging at the park, playing with her sister and her giant stuffed dog and stuffed horse, sucking her thumb, dancing, snuggling, having messy fun painting and drawing and signing." 


Who is Mia's favorite superhero? "Superman"


If Mia could have any superhero power...what would it be? "A magic wand to cure all cancers"


How Mia's superhero cape has helped her: The cape gives Mia a sense of comfort, makes her feel like a superhero.  It gives her a boost of boldness and an air of mystery, just like with any superhero.  Rachel's cape makes her feel SPECIAL.  So much fuss is made over the sibling with the diagnosis and sometimes the child that doesn't have cancer feels left out even though everyone goes out of their way to include them.  And people really do go out of their way to make sure Rachel feels special.  When they wear the capes people take notice and make comments like "cool cape" and this produces mega-watt smiles.  


A message from our superhero: 

"A superhero can come in any shape and size and to Never Ever Give Up!"


ABOUT MIA:
Mia was diagnosed with a brain tumor on her pituitary gland just days before her 2nd birthday in November 2011.  Although born at a typical weight and height between 15-18 months we noticed her growth and weight gain had ground to a halt.  Thus began a 5 month odyssey to determine the cause the reason she stopped growing and gaining weight.  She was put the wringer of tests and saw almost every specialist imaginable.  All test results were normal or negative.  The gastroenterologist we were working with at the time wanted her to undergo a surgical procedure to receive a feeding tube to see if she was able to gain weight that way however before putting her under anesthesia she referred us to a neurologist who scheduled an MRI of her brain to "rule things out".  The results of that scan changed our lives forever.  We knew the reason for her lack of weight gain was now due to a brain tumor and not due to  an autoimmune or GI issue.   The location of the tumor causes Mia to be super small for her age.  Should you meet her in person you would know that she doesn't let that get in her way at all. We call her our small but mighty warrior.   The location of the tumor does however mean that surgical removal is not an option as it is deemed too risky.  She also has several spinal lesions of the same tissue type along her spine.  Mia started weekly chemotherapy in December of 2011 along with receiving supplemental nutrition nightly.  The tumor is benign and slow-growing yet still considered cancer.  We are the family in our community that has a child with cancer, part of the most elite of clubs that no one ever wants to join. 

Through some challenges with three different chemotherapy protocols involving allergic reactions and growth in the brain tumor and lesions we are happy to report that the current protocol she is on has kept things stable since January of this year and she's also gained weight and grown since diagnosis.  We hope to find out early this summer about her being able to go off treatment. 

She has endured so many things that a child her age shouldn't have to.  But she's taken the ER visits, hair loss, inpatient stays. blood infections,   nausea, vomiting, inpatient stays, MRI's every 3 months, blood draws, nightly supplemental nutrition, countless appointments with specialists with stride.  Her amazing "dream team" of doctors and nurses has become a second family to us along with our other patient families.  We never want to know them for this reason but we can't imagine our lives without them. We try to keep things as normal as possible for Mia as well as for our 7 year old daughter Rachel(who is also a superhero in her own right).  In many regards Mia is a typical 3 1/2 year old.  She goes to preschool and adores her weekly dance class.  She's excited to go to camp this summer.  However, so many aspects of our world are far from typical.  Neither one of our children should have to know what the word cancer means.  We hope one of the blessings they can take away from this journey is compassion for others, helping out in any way you can, having hope when things may seem bleak, knowing that you can be brave and courageous and scared at the same time.  Crying doesn't mean you are weak....scars are battle wounds. 



We are so thankful for the support we have received from our family and friends.  They haven't wavered in their love, concern, prayers and hope for our warrior.  "Mia's Peeps" have shown us their love from day one.  We are so touched by the outpouring we have received from people we have met throughout Mia's journey from the foundations and organizations we have learned about and from our other fellow cancer families that understand the emotions and situations first hand.  For the people we haven't yet met in person but have let us know they are rooting for Mia and praying for her. We feel bonded to all of you forever.   

From the very bottoms of our hearts we want everyone to understand how much it means knowing so many care about Mia and Rachel too and how they only want the best for them. It gives us strength and lifts our spirits so that we can stay strong for Mia.  She's our hero, our warrior, our inspiration.  Thank you for helping us embrace our lives and this "new normal" road we are now on, the good, the bad, the bald. 


Tuesday, May 21, 2013

Meet Our Superhero Emma


What is Emma's favorite icecream? 

"Chocolate icecream"


What makes Emma smile/happy? 
"Whenever she hears Justin Bieber, she smiles" 

Who is Emma's favorite superhero? "Catwoman"

If Emma could have any superhero power...what would it be? 
"The power to make sick kids better because she does not want them to go through what she did."

A message from our superhero: 
"Thank you for the love and prayers.  I love you more than you love me."


About Emma Routh:
Emma Routh is spunky, fun loving 7-year-old girl that like so many other girls her age - have an affinity for Hello Kitty and Justin Bieber. However, unlike her peers Emma is battling fanconi anemia – a rare blood disorder that leads to bone marrow failure. While accompanying her family to her baby brother’s doctor visit several years ago, the pediatrician noticed that Emma was not growing and ordered a chromosomal breakage test that led to the diagnosis. Emma has bravely undergone chemotherapy and a bone marrow transplant and continues to surpass milestones that defy her physician’s original prognosis. 
 
Emma has a deep rooted love for life and continues to find the good in every situation becoming a role model for so many of her family members much older than herself.  Her infectious spirit has given her family the strength to continue their journey and provide them with hope not only for Emma, but for all of the children like her. They feel confident that Emma will grow up to be an unbelievable woman, achieving all of her dreams and making a difference in the world.

Fanconi anemia is a rare genetic disorder leading to bone marrow failure. The rest of a FA paitent developing AML (leukemia) compared to the rest of the general population is 800-fold. FA effects all systems of the body and paitents are extremely likely to develop a variety of other cancers. FA is found in 1 per 131000 births. in the US around 31 babies are born with it a year. sixty percent of people with FA have at least one physical abnormality. The median age of survival is 24. 

Follow our Superhero Friend Emma on Facebook: https://www.facebook.com/prayersforemma