Magnificent Maya

Here is a letter my mom wrote to the

Leukemia and Lymphoma's Team in 

Training about me.  

I am the honorary Hero for the LLS Team in

Training's Flying Pig Marathon:  

12/24/2012

It’s Christmas Eve morning, and the first thing that pops into my mind when my eyes open (as it does every morning) is, “Thank God she’s alive and okay”.  Not the usual first thought in the morning for a mom, but in my case, the mom of an 8-year-old daughter battling Acute Myeloid Leukemia, this thought is not at all uncommon.

 My name is Bonnie Collins and I am the mother of Maya, a strong, feisty, loving, full-of-life little girl who is in the fight of her life.  I often feel angry (amongst many other emotions that pop up during the coarse of any given day) that this has happened to my baby.  NO child deserves to go through what Maya has endured.  I question “why” every day, and I know I may never know the answer, but life goes on, and I just have to be thankful for having her here, with us today, in this moment, where I can touch her and hold her, and pray pray pray that she remains with us, and that next year, at this beautiful time of year, I will still be able to hold her and love her with all my heart and soul.

Our journey began on April 6 of this year after months of nosebleeds, fatigue, paleness and finally a blood test that revealed something was very, very wrong.  I remember, like a dream, walking into the small, stark room with the team of doctors, heart pounding, and looking at our oncologist (still in disbelief that we even HAD an oncologist… a word that always has struck fear in my heart and now we had our OWN oncologist) as she set a box of Kleenex onto the table.  I knew, right then and there, that it was going to be bad.

I compare Maya’s diagnosis to a fall, starting at the top of the basement steps, but each time we met with the doctors who delivered more information we would fall down a few steps, until finally, we had hit the bottom of the cement floor.  That day, in the stark room, we received the initial diagnosis, “leukemia”.  Knowing several people battling leukemia and lymphoma, I was not entirely surprised, and to be completely honest, a little relieved.  Thanks to people like you, raising funds for research for blood cancers, the diagnosis of leukemia is USUALLY not as daunting as it used to be.  I knew that most leukemia is now almost 90% curable.

So my initial thought when we received the diagnosis was, “Oh, we’ll be fine. She has a 90% chance of surviving!  We can do this!”  I left the meeting feeling “okay”.  She still had cancer, and it still was scary, but I felt like it was something we could handle.

The next day was the first fall down the steps.  The doctors had performed more testing on her blood and found that she had AML, a rather rare form of leukemia, especially in children.  They told us that now her chances of survival had dropped to 60%.  My heart sank, but still trying to maintain optimism, I told myself, “The odds are still in our favor!”. 

A few days later the doctors entered our room with grim faces and once again my heart sank and I felt us falling and falling down those cold, hard steps.  The genetic testing had come back and they had found that her leukemia contained a genetic anomaly called “Monosomy 7”, which made her leukemia, already tough to treat, even tougher.  “25% - 30% survival rate” and “bone marrow transplant is her only option for survival” were the doctor’s words that were ringing in my ears.  I thought I would throw up.  We had hit that basement floor and the impact hurt.  Hurt like nothing I had ever felt before.  It literally knocked the wind out of me.

So, our journey began.  And it was horrific.  Starting with blood draws with many sticks as they couldn’t find her veins.  Painful bone marrow biopsies that rendered her unable to walk at times. CT scans with die that burned her veins.  Insertion of a PICC line into the vein in her arm that went up, around her shoulder, and down towards her heart.  Then the chemo, in big orange bags marked in huge letters “CHEMOTHERAPY”, hanging from her “pole” and running into her little pale body.  (One type of chemo that she received the nurses handled very carefully because if they touched it it would burn their skin!)  Knowing we were poisoning her, but at the same time knowing this “poison” would make her better. Then the dreaded nausea began.  Holding the “bucket” while she vomited, sometimes every half hour for days on end.  Many times we didn’t make it in time for the bucket and we’d wear it on our clothes, one of the many marks of a “cancer parent”.  But pretty soon she became an “expert vomiter” and quickly learned to hold the bucket herself.  One of the many skills of a cancer patient.  One of the many skills that an 8-year old should NEVER have!

Infections, high fevers, a trip the ICU… the list of horrors go on and on.  Sometimes driving home from the hospital to meet my 10-year-old getting off the bus and not being able to see the highway through my tears.  Wondering if we’d even make it to the holidays.  Returning to the hospital to relieve my husband with fear in my heart. Wondering how Maya would be.  Would she be lethargic and weak, or would she be chatty and back to her feisty old self?  Every day brought us something different, a new symptom or pain.  It was like a wild roller coaster ride with so many twists and turns, never knowing what was up ahead, and terrified of what was coming.  A roller coaster that we couldn't get off.  So we hung on for dear life.

But we’ve made it.  She sailed through her bone marrow transplant and we are now on the other side of this nightmare and I pray that we remain so.  She is currently cancer free, thanks to God, her amazing doctors, and people like you who have funded blood cancer research and made it possible for her to come this far.  But there is still so much more research that needs to be done.  Many blood cancers, similar to Maya’s, have a very low cure rate.  I pray that she remains cancer free, but if the unthinkable does happen, I pray that advances are made for her type of cancer in the near future to help ultimately cure her.

I’m not an athlete by any means.  I’ve never been a runner and the last time I rode a bike was probably 5th grade.  I’m in awe of anyone who can run a marathon.  I can only imagine the pain that you must endure at times.  Please think of my Maya during these times.  Think of her as a  healthy and vibrant 8-year-old who is full of life.  It’s because of what you are doing that has brought her this far.  It’s because of you that will bring so many other blood cancer fighters to complete health.  Thank you from the bottom of my heart.  Have a wonderful Christmas.  Celebrate life and love and HEALTH!  Life is precious.

The summer after this letter was written Maya relapsed.  She underwent her 2nd bone marrow transplant on August 2, 2012.  She remained in remission for 4 precious years but unfortunately relapsed the summer of 2016.  She received her 3rd bone marrow transplant at St. Jude Children's Research Hospital in September 2016 but sadly lost her battle due to complications from the transplant on October 3rd, 2017.  She is forever in our hearts.  #MayaStrong