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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

Ansley in the Hospital 10/12/14.

   I haven't written in a long time because honestly Ansley has had more crummy days than happy days. She was admitted in the hospital yesterday for neutropenia.  She also has mucusitis in her throat which is quite painful and makes it too difficult for her to eat. It is incredibly frustrating because we are already struggling with her weight loss. She is very cautious about eating because she scared she will throw up. Well, because she does throw up. We are lucky if she can go 2 days in a row without throwing up. She is on every possible medication you can imagine. Now on top of everything else she has sores in her throat! No child should EVER have to endure this crap. We are lucky if we can get in 2 hours of school a week. She tried on Friday and the teacher came out and said she was falling asleep. She is on too many narcotics to be learning anything. It breaks my heart that she is so far behind all other children her age when before she got sick she was ahead. I know what everyone that is reading this is thinking: just concentrate on getting her better and don't worry about the rest, right? Well as any mother knows, mothers have enough room to worry about every aspect of our children's lives. No matter how big or small. Plus I have so much faith that she will be better and back at MES, we have to think about her returning to the normal world again. Anyway, her ANC has been 100 for 2 days which is better than zero. She had to receive platelets again (third time this month we found out she is allergic to certain platelets. She had a very severe reaction the last two times she got them. So now she received platelets that have been specially washed for her. Once again, St. Jude is incredible.
                     On the up side, she lost her first tooth! She's super cute without it:) she lost all of her hair again. She super cute without it too!!! She doesn't think so, and she was pretty upset again but not quite as upset as the first time.  My mother & Lacy & AA were riding in the car with us and the windows were down a bit & she was leaned against the window looking very peaceful and this is what she said: " I love it when my fuzz blows in the wind". So hopefully we break out of here within the next couple of days. She has to be fever free for 48 hours and her ANC needs to be up to at least 500. Oh & she is scheduled to get her trach out on 10/21 IF all goes as planned! That's a HUGE win for her! Thank you for the love & continued prayers and support!!!!
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Comments

5 Comments

Judy Myers
By Judy & Jim Myers
Just read your post. We pray for her always and will add even more. God bless you all; you have such strength. Ansley will do well in school later. After all, if she can put up this kind of fight to get well, catching up in school will be no problem. Blessings to you all.
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Laura Bryan
By Laura Bryan
Praying for Ansley and all of you!
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1 person hearted this
Carole Arszman
By Carole Arszman
Please know that all of you remain in our thoughts and prayers. Please don't worry about lessons now. Ansley will have plenty of time to catch up. So sorry that you are still having some rough days. We will think and pray for happier days ahead. Hugs.
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Brenda Wingate
By Brenda Wingate
So sorry AA is having so many difficult days! Prayers continue that she feels better soon! She is a beautiful, bright girl and will catch up with her peers! Don't worry so much about academics right now! (This is coming from a mother and teacher)
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Vicki Loomis
By Jay and Vicki Loomis
Praying for more happy days for all of you.
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1 person hearted this