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 


Tuesday, May 14, 2013

Meet Our Superhero Caden

Caden Monster

What is Caden's favorite ice cream? "My favorite is strawberry, no MINT, and peanut butter." (I asked, all together at the same time?) "ew no thats DISGUSTING" (which do you like the very best?) Mint, like I get at kids world (at give kids the world on his make a wish trip)

What makes Caden smile/happy? "Balloons! Balloons make me happy, and sissy too."

Who is Caden's favorite superhero? "MOMMY!! and superman!"

If Caden could have any superhero power...what would it be? "Balloon power to float high in the sky and lift up houses.



About Caden:
Caden was diagnosed with Leukemia when he was 28 months old, he was previously a typical healthy little boy, that all changed overnight-literally. He was admitted to the hospital and the process of pokes, blood draws, spinal taps, x rays and bone marrow aspirations began right away.  Words can not describe the feelings that come when you have to hold down a screaming child, when they look into your eyes and sob "I'm sorry" as if they are being punished for something. We had to just do all these things though, they needed to know the specifics to his leukemia, to know just the right defense to mount. 

Caden has Acute lymphoblastic Leukemia, the treatment process is THREE AND A HALF YEARS long! He has endured, thousands of pokes, and numerous side effects. The treatment for leukemia leaves children with a seriously low functioning immune system. As a result, even everyday infections are a big threat. Caden had a particularly rough go with an opportunistic pneumonia, he spent weeks in the hospital trying to get better. He stopped eating for weeks, he ran a fever for weeks, required multiple antibiotics around the clock, and more blood transfusions than we care to count. He had all the 'usual' effects we are told to expect as well, one chemo causes neuropathy and foot drop, this caused him to basically have to relearn how to walk with little sensation in his feet, what he could feel was painful. 



Steroids are a big part of treatment, he has taken them since the get go. He gained 1/3 of his body weight due to steroids at one point. They also cause mood swings, irritability, excessive hunger and pain. All his hair fell out at one point, and he has developed SVT, a heart condition where his heart beat goes out of control, racing as fast as 255 beats per a minute and requiring a special medication to make it stop. He has endured over 20 spinal taps to date, to deliver chemo into his spinal fluid in attempt to keep the leukemia out of his central nervous system. Caden is currently in remission, meaning his cancer is under control. We hope and pray it stays that way!! 

He will continue with his chemotherapy cycles through November of 2013. He is now 5 years old, and has spent more of his short life being treated for cancer than not, the hospital is like a second home and his favorite people are nurses and doctors. It isn't the life we ever imagined we would be living. He knows no other life, and while that is sad for we, his parents, to think about, its incredible to see how happy he is! Despite everything he has gone through, he always has a smile that can light up an entire room. Caden was the first child to receive a cape from kiss the toad creations cape sponsorship program, its funny how that simple gesture, that simple item, can have such a big impact. 


To a little boy, the cape is the finishing touch to let him know he really is a REAL super hero! He has worn it to clinic and 'flown' all around the house in it. When little sister joined the family, he very matter of factly stated that she couldn't fly, because she didn't have a cape yet. It brought smiles, laughs, joy and hope! That cape really does have super powers! On those hard days when he doesn't want to 'do this' anymore, we have something tangible to help him through. He may not realize it, but he is MY hero :) 

We would like people to realize, childhood cancer is not rare, and leukemia is one of the most common types of cancer in children. Little is known about the cause, and little federal funding is allocated to researching causes, or new treatments. Several of the drugs Caden is taking today, in 2013, were developed in the 1950's- they are not still in use because they are so wonderful, they are in use because there are no new alternatives. Cancer and its harsh treatments attempt to rob these children of a childhood. Its not fair, and it needs to change. In the meantime, we are so very thankful for all the wonderful people, providing little ways to give back to these children who've sacrificed so much! 



Follow our Superhero Friend Caden on Facebook: http://www.facebook.com/teamcadenmonster 


Caden's Mommy Is A Superhero Too:

This year, Caden's Mommy has answered the call to be a hero!  She is having her head shaved to stand in solidarity with kids fighting cancer, but more importantly, to raise money to find cures. 

Please support her with a donation to the St. Baldrick's Foundation.  This volunteer-driven charity funds more in childhood cancer research grants than any organization except the U.S. government.  

Your gift will give hope to infants, children, teens and young adults fighting childhood cancers.  So when we ask for your support, we are really asking you to support these kids.  Thank you! 

To make a donation, please go here