Meet Maya!

We are so excited to feature darling little Maya for our August fighter!  She is a super strong little lady who is facing the battle of her life.  Here is her story told by her mother Rachel:

'October 12, 2012.  This is the day that my eleven year old daughter, Maya Elisabeth, was diagnosed with cancer.  Pre-B Cell Acute Lymphoblastic Leukemia to be exact.  I felt as though the world had stopped turning.  This is her story.

It was Maya’s sixth grade year and her first year of middle school.  She had fully embraced this transition and was enthusiastic about everything.  She was getting to know all of her teachers and doing really well with school work, Math and Science being her favorite classes.  Maya had joined all kinds of clubs, was playing volleyball, doing chorus & band, and was a pommie on the McHenry Jr. Warriors squad.  She was busy and she was loving life.  

Over about a two week period of time, I began noticing some things that were out of character for my girl: exhaustion to the point of taking naps, weight loss, dizziness, bruises, pale/grey complexion, stomachaches, and low-grade fevers.  Maya was also less chatty than usual and was just not herself.  In isolation I had chalked each of these things up to Maya being rundown from her extremely busy schedule, the sports she was participating in and being a pre-adolescent.  And then I had a weekend with a few “light bulb moments” that put my mom’s intuition on high alert that something was wrong and all of these symptoms and observations came crashing together in my mind.

I already knew that these were symptoms of Leukemia but, I Googled Maya’s top symptoms anyway and Leukemia came up over and over again.  My fears multiplied drastically when our pediatrician was concerned as well.  He is old-school, he is conservative and he rarely bats an eye at anything.  He had me take her to the closest lab for a blood draw and told me he would call as soon as he got her results even if it was late at night---that was a first and I was very scared.  Ironically, she was wearing an outfit to promote breast cancer awareness that day, the details of which I will never forget, down to the pink ribbons in her long hair gathered into a ponytail.  I have a very clear memory of driving home and actually shaking my head to try to clear the thoughts I was having that my sweet little girl likely had cancer.  

I spent the next morning getting ready as if I knew I would be going somewhere and cleaned up my house as if I would be having visitors.  By 10:30am I could not wait by the phone any longer.   I picked it up and called the doctor’s office myself.  Our doctor got on the phone and kindly told me, “I have the results, but it is not good news.  I believe she has Leukemia.  You need to put her in the car and drive her to Children’s in Chicago right now.”  I was in shock, but I was not surprised if that makes any sense.  Looking back, it is all very surreal. We spent about six hours in the ER and all the while, the nurses and doctors were incredibly kind and interested in Maya as a person.  This has been an ongoing theme in her treatment at Lurie Children’s Hospital in Chicago.  Telling Maya she had cancer that day remains the most difficult moment in my life at this point.  I knew I had to be the one to tell her and I knew the way I told her would be with her forever.  I managed to not cry, to be calm and to be straightforward.  I realized in that moment that as a mom, I had the ability to be stronger than I could have ever imagined for my child—I would need this strength in the months to come.

From there treatment began quickly.  Leukemia is aggressive and they address it quickly, but it is an extremely long process with specifics that you cannot imagine. Nine months of intense frontline treatment with weekly clinic visits for chemotherapy followed by another two years of maintenance treatment with monthly clinic visits for chemotherapy.  Beyond that there are different types of chemo that are administered at home in between clinic visits.  A road map for the next several months of treatment was given to us outlining a schedule for chemotherapy, spinal taps, bone marrow aspirations, steroids, clinic visits, home health nurse visits, and inpatient stays.  We also were instructed and quizzed on caring for Maya’s picc line and administering the various medications she would need to take for the next month.  We were overwhelmed, in shock and doing our best to keep Maya in good spirits while also managing childcare and schedules for our two younger children at home, Emma (age 9) and Jackson (age 3), and keeping everyone we knew informed.   Maya stayed in the hospital for a week and then we were able to come home.  

 

Over the course of the last eight months, Maya has undergone many treatments--some of them painful, driven many, many hours back and forth to downtown Chicago, taken numerous medications, had a few blood transfusions and two allergic reactions to chemo, undergone four bone marrow aspirations,  spent several nights in the hospital for inpatient chemo treatments, had a picc line inserted and removed, had a port inserted, lost her hair two times, suffered many side effects from chemo, missed out on having a “normal” sixth grade experience , and dealt with the toll all of this takes on a child’s body & soul.  There has been fear and anxiety-- I spent 58 nights sleeping on Maya’s floor to comfort her and probably myself--but she has been extremely brave and positive through it all.  Our younger children have also been significantly impacted by this situation and the concept of a “new normal” does not exist in my book.  There is no such thing as “normal” when a child has cancer for anyone in the family, no matter how well it’s going.  

 

However, there are still blessings to be found…during the same eight months, Maya has also attended school as much as possible and earned straight A’s, attended a weekly private dance session, spoke on Fox Chicago news about her diagnosis and raising awareness for St. Baldrick’s which she raised over $7,000 for, was recognized as one of two students in her school district for a community Character Counts award by the McHenry City Council, donated $750 for Cal’s Angels to provide a wish for another child with cancer and volunteered with them, attended a week at camp for children with cancer, participated in some very cool experiences made possible through the generosity of others, and has hung out with her friends and family as much as possible.  She has done more living in between her treatments than anyone would have believed possible.  Maya has adopted Bob Marley’s words from his song “Three Little Birds” as her motto, “Every little thing is gonna be alright” and she lives this to the best of her ability with a little help from the people who love her.  We are blessed with an amazing support system.  

Maya is looking forward to being on a less intense treatment schedule for her seventh grade school year and is working hard to rebuild her physical stamina in order to participate in pommies as she has the last four years.  She has long-term goals for her future to attend college and work in the fashion industry, and she is always brainstorming new ways in which she can give back to the “cancer community”.  Maya has developed a tremendous empathy for other children and families going through the nightmare of cancer even while she is still enduring it herself.  As her birthday approaches, she has asked for Barbies & Legos to donate to children being treated on the outpatient and inpatient oncology floors at Lurie where she is treated, rather than receiving gifts for herself.  She told me that she has everything she needs and she wants to bring a little “sunshine” to the kids at the hospital.

And for the rest of us, we have found that not only does the world keep turning even when a child you love has cancer, but life continues in a way in which you feel the passing of every minute. You recognize that how you choose to spend each of those minutes and who you choose to spend each of those minutes with, matters more than anything.  Raising awareness for the lack of funding for pediatric cancer research has become something I am very passionate about.  No child and no family should have to experience this.  Maya’s treatment will last approximately two and a half years if all continues as planned.  She is doing well currently, but relapse is always an unspoken fear.  It is a long road with no guarantees and because of that, or maybe in spite of that, we will live our lives with purpose, with joy and with hope every single day.'