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Ansley’s Story

Ansley Abigail Smith is 6 years old (just turned 6 on March 10) Sometimes we call her A sometimes we call her AA and sometimes we just call her Ansley. She is a stubborn,  intelligent gorgeous little girl She has been diagnosed with stage 3 Rhabdomyosarcoma, which is cancer. She has a big sister named Lacy who is 10 years old. A dog named Jazzabell who is 12 years old ( our first baby ). The newest member of our family is a chinchilla named Ricky Bobby(I lost that battle). And mommy and daddy, Cassie and JR Smith. Ansley is in Kindergarten at Madison Elementary School. I am her mommy and decided to journal all of this because I believe that one day she may want to know all the details and how we found out that she was sick. 
       So Ansley was a normal healthy girl with seasonal allergies. She got sick with what we believed was a sinus infection. Her voice started sounding very nasally, like she was really clogged. I took her to her pediatrician on a Monday and they swabbed her throat for strep and checked her blood. No strep but a sinus infection and ear infection. Put her on antibiotics. She got worse, complaining of beside her eye hurting, throat hurting, very lethargic and tons of nasal congestion. Then a couple of small bleeds. Took her back to her doc on Wednesday. Repeated same tests. Gave her a different antibiotic In a shot. Went home and that night she started to bleed from the back of her throat a little. So I called doc again and they got her in to see an ENT that Friday. He looked her over and used a tongue depressor to look really good at her throat. He said he saw something in the back of her throat but he was not sure what it was. He thought it was swollen adenoids. He put her on a steroid and wanted to see us back the next Thursday. Over the next couple of days she got no better and her breathing was horrible. JR (her Daddy) and I watched her struggle to breathe that Sunday night and decided we needed to just go ahead and call the doc back. I took her to her Mimi's house that Monday morning and went to work. As soon as the ENT opened I called and told them we were very worried about her breathing. She also could not blow her nose I actually had to suck out the yuck with a baby syringe. He told us that if we were that worried just to go ahead and take her to the Huntsville Pediatric ER. They would call and let them know we were on the way. So after we arrived and they took a ct scan of her sinus area we waited for about 30 minutes. I ran to the restroom and when I came back to her room a new doctor was there waiting for me with Ansley and JR. She introduced herself as one of the 2 pediatric oncologist there and that she was an affiliate with St. Jude. She then began to tell us that there was a very large mass in Ansley's sinus area and palette that was eroding her bone towards her scull. She said I'm sure you've heard of the word "cancer" she said she felt like it was. She told us to go ahead and call on our family and friends and pack some bags. She
was sending an ambulance from St Jude to take Ansley there. We were in complete shock.we arrived at St Jude sometime after 1:00AM. The very next day they explained to us that they were doing a biopsy of the mass. They explained that there was a very small possibility she would have to have an emergency tracheostomy. But that was rare. Half way throughout the surgery the doc came out and said that the mass was much larger than they expected and if they did not do a trach that she may not live. I did not want to. But we said ok. So our baby who did not even know how sick she was was going to wake up with a tracheostomy and a stomach tube (because the mass was so large no way to swallow, also unexpected) and a double lumen chest line. They paralyzed her for 2 days. When she woke up she was terrified because she tried to talk and nothing came out. Lots of tests over the next day after she woke up. It seems like every time she would wake up, they would put her back to sleep for more test. We never got a chance to explain to her what was happening. She was put to sleep for a bone marrow biopsy and a spinal tap to check spinal fluid. The night after all of that, she stopped breathing on her own and was not responsive at all for 29 minutes. JR and I stood and watched her oxygen numbers plumett and there was NOTHING we could do to help her. All of a sudden the ICU room was FULL of doctors and nurses trying to figure out was going on. I stood in a corner and cried the entire time. No one could figure out why she stopped breathing or how she started breathing again on her own. At first they thought she had a seizure but then ruled that out for many different reasons. They talked for days about "the episode". Medical mystery. I believe it was God washing her body and filling her with his Holy Spirit. That's the only thing it could have been.  All of her test came back clean. No cancer had spread to any other parts of her body. They found a small lesion on her lung that they biopsied and came back clean. To remove it though they had to do an invasive surgery in her lung to remove it. So she has a large cut on her ribs which is very painful. But thank you God the cancer has not spread. 
              As of right now Ansley is very angry and depressed. The docs and nurses adore her even though she's not nice to them and ignores them:) They really do love her. They are constantly trying to make her laugh and spoil her rotten. Especially the male nurses, she really has
them rapped around her finger.  She loves Amy the music girl. She comes in and sings and plays her guitar for Ansley. Everyone knows Ansley LOVES the movie frozen. So Amy sings frozen songs to her. One of her nurses John drew her Olaf the snowman on her window. The specialist are teaching JR and I trach care, line care, g tube care and feeding, giving medicine and CPR. I have never been this overwhelmed in my whole life. JR is a rock. I couldn't do this without him. I am so lucky to have him and our amazing family and friends. We have such an amazing support system. We are blessed. My mother (granny) is staying at our house with Lacy so she can keep some normalcy in her life. She helps take care of the animals at home too. Lacy is so strong but misses Ansley and us. We are expected to be in treatment for 60 weeks. Chemo here in Memphis but radiation in Jacksonville FL. I have no idea how we are going to make this work but as long as Ansley And Lacy come out of this happy and healthy that is all that matters. She has her second round of chemo tomorrow. 2 weeks down, 58 to go. God is going to take care of Ansley. He is
working through these amazing doctors and nurses at St. Jude. She isgoing to be just fine and I thank God for that

Latest Journal Update

So long trachy:) 10/22/14

Ansley's trach was removed yesterday! This is a huge win for her. Her tumor is small enough that her airway is clear, thank you God!!!! It was a very emotional day for all of us but for different reasons. Ansley (as most of you know) does NOT like change of any kind. This was scary for her and when she woke up she completely panicked. After lots of good meds she calmed down a little, but she was nervous and upset all night. I can't imagine what it's like to have a large open hole in your neck. Her ENT leaves the hole open and let's it close naturally in case it needs to be put back in. After about 6 months whatever has not closed he will surgically close. I've shown her a couple of cute handmade necklaces meant for stoma coverage on etsy, but so far she wants no part of it. It was an extremely emotional day for JR and I because her oncology team was on board for her trach removal but her ENT was not. When we got up to surgery he decided he didn't want to take it out for no other reason except for the fact that he never takes them out in the Fall and Winter. Because her ENT in Florida had already suggested we get it out as soon as possible, AND the oncology was excited, when we got there and he said no, I seriously turned into the crazy Mom warrior. After a long stressful meeting with him he agreed to take it out. We have to be EXTREMELY careful about her not getting sick. That means no visitors if there is any possible chance of sickness. Symptoms including, runny nose, ear or headache, sneezing or coughing, fever, vomiting or diareah or rashes. Pretty much anything and everything! Also any visitors must have gotten flu vaccine. It has to be the shot and not the mist because the mist has the live flu virus in it. 
             Ansley is doing soooo good today. Miss Amy has been playing with her all morning. Thank God for that girl! Ansley has been all smiles and giggles for the last hour. Now we just just got work on getting her to eat something! We should be discharged literally any minute. I'm so excited for Ansley and I'm hoping she gets back a part of herself she lost now. I believe this a huge step for her mental healing and think it will boost her confidence. I hope so anyway! Thank you for all the prayers because God keeps him promises! 
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Comments

5 Comments

Judy Myers
By
Glad to see you are doing better. Loved your pictures on facebook going to Ronald's. I even saw you eating which must have made everyone happy. We will continue praying for you continued progress.
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1 person hearted this
Sharon Brazelton
By Sharon & James
We continue praying for Ansley and all of the family.
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1 person hearted this
Carole Arszman
By Carole Arszman
Praying every day for all of you, just hoping that your days will be sunny. Ansley, you will be happy that progress is being made, even with the changes. Bless your. Here's hoping you have a wonderful weekend with Lacy. Hugs ~
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1 person hearted this
Vicki Loomis
By Jay and Vicki Loomis
Many prayers coming your way.
Beverly Smith
By Mimi and Poppy
We love you AA! Hoping your adjustment is smooth and easy.