Help Team Anya Defeat Leukemia!!

Our Story:                        
My name is Rachael Sayre.   I am the mother of Anya Camille Valenciano, who was born on October 27th, 2006. 

Anya was given to us when her older brother Elijah Leon was taken from us due to congenital heart disease at the age of 8.   He brought her to us for comfort, and to let us know he is always here through her smile and strength!!  
Anya was diagnosed with Pre-B ALL (acute lymphoblastic leukemia) a week before her 7th birthday, and spent her birthday in the hospital undergoing chemo procedures.   She was started on strong doses of chemo right away and had to be given 5 to 6 units of blood and 3 to 4 units of platelets due to her blood counts being so low.   My sweet little girl started to have spleen and liver failure by the time they found out her counts was triple the normal range.  She had also developed an infection in her right arm from lack of sterilization when drawing her blood.   Anya couldn't move her Popeye looking arm, and was soon learning to use her left hand to accomplish what she loves to do most.   Art!!    She underwent surgery to have a port placed right under the skin in her upper left chest.   This is where all her blood and meds are given.  That way they do not have to stick her all the time when they give her meds.   The port is accessed through the skin by a needle which can be left in up to 7days.   

After surgery she was sitting up in bed with all her siblings talking and coloring.   I believe it was her sissy that asked her if she dreamed of anything while in surgery.   She said, "Yes", her brother Elijah came and took her to the park.  He pushed her on a swing and told her not to worry everything is going to be ok.  Elijah said to stay strong no matter what, and to never give up.  They played for a while, and then her grandmother Maria, (who passed in a car accident, and whom Anya had not met), walked her back.  Maria held her hand and told Anya she loved her.   Then Anya woke up!!!   Now she knows of her brother and what he looks like.   Anya was able to explain to us what her grandmother Maria looked like and everything Elijah and grandma were doing!  My oldest daughter looked up at me to see if I was listening to what Anya was telling her.  I had the same shocked face as she did because we just couldn't believe it.   We knew Elijah had always been with us. I remember when Anya was little she used to always come tell me, "I love you Momma", randomly throughout a period of time.  Later I heard if you lose a child that they can come through other siblings and speak to you, and that it's usually them saying I love you.  Just letting you know they are still with you, that their death was no one’s fault, and it is all ok.  

After a week in the hospital we were finally released only to return the next week.   All she did was sleep, and I had to help her with everything.   I would get her up to walk to the restroom or anywhere she would walk, and get anything she needed.   I held her as she slept many times in fear that she would not awaken the next morning because she was so frail and fragile.   I thought she was going to break!  

By the next month she had begun losing her long thick beautiful dark brown hair.   We had talked about the fact it could happen and how to accept it.   Her hair was falling out in clumps so we decided it was time to shave what was left off, and a friend of mine made an appointment with her beautician for Anya, my oldest daughter, and myself to have our heads shaved together.  Of course I went first so she could watch and see that I was going to be there and go through it all with her.  She was hesitant and feeling badly that day, but bravely got in the chair and let her hair hit the floor.   She just wanted it to be done.   After Anya's hair was gone it was sis' turn.   She has been my rock for the longest time.   Her sissy began to cry, and then laugh.   We were wondering what was wrong.   She is crying again.   Crying and saying "Mom".   "My hair's never going to grow back."   "I have black folk’s hair."   (She is mixed)  "I'm never going to have hair again."   "No mom... "    Then Anya had to comfort her sissy and let her know it was going to be ok!!   

We made it through the holidays which are really hard for me. By February she had gone into remission. In March she began growing hair again, and all 42 pounds of her began gaining her weight back.  The reason she weighed 42 pounds was the chemo had cause terrible mouth sores that kept her from eating.  Then she started a different round of chemo and became totally bald again.  

While we were at the gas station Anya began to cry saying everyone is staring at me.  I asked her out loud who was staring at her.  She started pointing at an adult and crying even more.   I began to lose it. I started to yell, but I looked at Anya and something told me it wasn't the time or place.  Even if I reacted the way I wanted to it wouldn't make a difference because a grown ass adult is already stuck in their stupidity. Instead I told my daughter, you know what, from now on start killing them with kindness. Smile at them, or wave, or say can I help you.  Anya looked at me as if I was crazy.  Her brother Isaiah said he was going to beat up anybody who stares or makes fun of her. Then she started to calm down and relax.  That day in the gas station parking lot we learned to ignore the little things.

Her hair started to come back finally and it was dark and curly this time.  My baby had her Grandpa Richard’s curly hair and I loved it.  She soon began to love it too because it was easier to manage and she received compliments all the time.  Those compliments always brought a smile to her face! 

Almost a year and a half into a two year treatment plan for leukemia she relapsed and had to start all over on this journey.  I just could not believe we were going to go through all the chemo again so soon after her remission.  She started to have all the same signs as the first time she was diagnosed, but this time she will have a bone marrow (stem cell) transplant.  Plus she will have radiation before the transplant!  Her two blood brothers were tested to see if they would be a match for the transplant.  They were not compatible, but boy did they want to be the one to donate her bone marrow.  It was the coolest thing ever for them to have blood drawn for their sister! 

Anya lost her hair quickly and her weight has gone way down. She has been in and out of the hospital with infections and has been in for many clinic visits.  My little one has spent most of the last three months in and out of the hospital. 

She became very ill, running a fever up to 104 and 105 degrees.  A few nights prior to when the fever started she had started talking in her sleep.  Anya never talks in her sleep.  At first she talked a little bit in her sleep.  The next night it was more, and by the third night she was carrying on a full conversation all night long!  I asked her if she knew she was talking in her sleep and she said yes.  I asked her who she was talking to.  She closed her eyes and turned over.  My sister asked if they were nice or mean.   Anya said, “He's nice”.  I asked who he was and she said, “I'm not supposed to tell.”  “He told me not to tell you.”  My sister asked what he looked like.  Anya opened her eyes, looked at me, and said, “he has dark curly hair like yours mama”.  “He looks just like you momma.”  As soon as she said it I knew it was my daddy (who had passed in November).  I said, “You've been talking to Grandpa Richard” and began to bawl.  Anya had a tear coming down her cheek because we both knew why he was there.  He was coming to talk her through the nights.  To make sure she was ok and letting her know she has guardian Angels watching over her.  Any time she needs him or is afraid she is supposed to call out for him and start praying.  He has kept my baby safe and here with me.  He has made sure she stayed awake through the night so that I am able to watch her sleep in the mornings.  He knows of the tremendous pain from chemo.

The pain from chemo never stops.  Your body begins to break down slowly.  Every chemo med has side effects.  One of the main side effects is it kills everything in your body.  Your bones become fragile and it gets hard to move.  It collects in your joints and causes them to hurt.  My little girl looks like a little old grandma trying to get around.  She has continuous nagging pain that does not go away!  It tears away at your teeth.  It causes problems with your organs.   Your mouth is full of sores and the whole digestive system has sores through out.   It makes your fingernails and toenails fall off.  Anya needs band-aids on her fingers because the chemo makes sores on her fingers that take a long time to heal.  You may see sores on her fingers in some of her pictures if you look closely. The many spinal taps cause scare tissue to accumulate.  The taps also cause severe headaches.  Chemo hurts.

Anya’s body may be hurting and fragile, but not her spirit.  She keeps her smile going.  It is a smile that keeps on giving.  Some of the time she puts on a smile for her visitors and family when she is feeling terrible.  Anya has to be extremely ill for that beautiful smile to be wiped off of her face.  No worry.  It is back in a snap. 

Since Anya relapsed, I have had many times that I just start crying, asking myself, how am I going to continue doing this?  How am I going to make everything work?  There is so much to do and to take care of. When you have a sick child your life becomes their life and you become this mindless beautiful wreck of a parent that is just in motion. Never knowing what day it is or if you are forgetting something.  And yes, I have my other children needing their mother and sister that I have had to leave home while Anya and I take trip after trip alone in a borrowed vehicle.  I have not had time or help finding us a place in Oklahoma City so that we are not driving back and forth.  We could all be together as a family helping each other out more and not being stressed out from being apart if we lived closer to Anya’s hospital.  Especially in last minute situations when she gets sick and we have to up and leave to drive her to her doctor. 

I am a single mom.  It is up to me to get everything done.  I can only do so much.  I may tire out eventually, but I cannot go down.  I must be strong.  Who would take care of my babies?  No one!  Therefore sometimes I have to let my pride go and ask for help.  

Thank you for caring.