In Honor of my Student Katie Lesley who has been gone now in Heaven for 7 years. We started the Katie Lesley Foundation, here is the story Haileys mom would like to share with everyone, this is why we do what we do, for children like Hailey!! We love you Hailey!! Hailey was born on june 2th and the very second i first seen her face i knew there was something special about her her. Hailey is a fun loving little spirit who makes friends everywhere she goes.. the grocery store,drs offices..if there are people hailey is going to make them love her. Hailey had always been very well behaved,as an infant she hardly cried and was very well adjusted so when she was 1yr old and started crying until she would turn blue and pass out and sometimes go into a seizure,we had 911 on speedial at this point and spent day after day at the drs office.. they were telling us that Hailey was having blue spells which is basically a temper tantrum.. that diagnosis just didnt fit hailey and I wasnt happy with that... over the course of the year we had a few overnights at the hospital and more frequent visits to the dr. It had been a couple months since hailey had an episode so we thought all was well,hailey was very smart,she walked and talked very early,she was 1 and could tell you every animal and what sound they made...by her 2nd birthday she could count to 10 in english and spanish. We woke up one morning shortly after her 2nd birthday and got ready for the day the same as any other,having no idea that this day would be the one that changed our lives forever.. Hailey was in a rather lovely mood on the way to her cousins birthday party at the park and was so excited to see everyone... she jumped out of the car ready to go,but i noticed her legs were very wobbly,hailey started to walk and i noticed her balance was very off... I told my mom that i thought something was wrong and we watched her for a few minutes and I knew something wasnt right. I left the party alone,just me and hailey and went straight to the er... when i told them about haileys past and what was going on now and they seemed worried,they asked a lot of questions and there was a lot of drs in the room watching her walk and turn around,looking in her eyes... I got really nervous because they all seemed very worried. They took hailey back for a cat scan,we had been in a double room with another patient, after what seemed like forever a nurse cam in and asked me to move to another room where we could talk alone. This was not going to be news i wanted to hear and i knew that,but i never imagined in a million years what she was going to say. She told me that they found a large mass on haileys brain and that she needed to be transferred to another hospital right away. We went to ochsner hospital in New Orleans where they told us hailey had fluid building up around her brain,hailey had a procedure do to re route the ventricles around the tumor to allow that fluid to drain. They did a biopsy to find out exactly what we we were dealing with. They said Hailey has an inoperable grade 2 pilomyxoid astrocytoma,a brain tumor. They made a treatment plan and she had a port placed in her chest to get her medication,blood and fluids. Hailey received 3 types of chemotherapy over almost 2 yrs. We went to clinic once a week to receive 2 types of chemotherapy and once every 6 weeks we gave her chemo by mouth at home. Hailey had a rough start with alot of pain and discomfort..soon she started to lose her hair but she wasnt in so much pain and she didnt seem to mind losing her hair,she would invite strangers to touch her head and feel how soft it was. Hailey was very sick but she didnt seem to mind that either,she was such a trooper and never complained about anything. After haileys surgery she had to relearn how to walk and when she did we noticed her walking was different,because of the tumors location on her brain and the pressure,her whole right side is weak. I was scared watching her walk because i knew without help she would hurt herself. We started physical therapy and Hailey got braces on her legs. Hailey finished her treatment,but because there is no chemotherapy made to go to your brain it did very little in the way of shrinking the tumor,but it did keep it from progressing. Hailey still has the tumor, the size has not changed much since we found it. Hailey has an mri every 6 months and so far there have been no changes. Hailey will not receive treatment unless there is a change . Hailey will start radiation when she is older. There have been a lot of other issues since treatment ended. Hailey has extreme anxiety from being sheltered and unable to attend parties and being alone with only her family..she missed out on a lot . Haileys had 2 eye surgeries and because her right side is weak her right eye is weak,she wears glasses to help with that,the right side weakness is a major problem for her,she can only use 1 arm and wears leg braces everyday,as long as Hailey has the tumor the weakness will be there. The weekly therapy helps but its not enough, so we started looking for something else. I decided on dance and called every studio I could find,i explained haileys situation. I wasnt satisfied at all with the responses i got, it was alot of umm, ok, well we will see what we can do.When i contacted Galloways and explained haileys situation to them it was like they were eager to work with her,they were excited to be able to help her. I enrolled her at Galloways and she was very excited to start dance. Hailey was in Mrs Natashas class with Mrs Barbara and ahe was taking tap and ballet. I was nervous though,because even though she tries her hardest and i believe in her,i wasnt sure how she would do because of her physical limitations. Tasha and Barbara worked really hard with Hailey. Watch weeks were the best because i could see the change in her, after just a short time hailey was able to do things that she couldnt do when she started,her leg was stronger and she was really dancing! The day of her recital was one of the happiest most memorable days of my life,after everthing Hailey had been through. There she was on stage,dancing like everyone else and doing just as good as any kid up there. I cried,not because it was cute but because i was getting to watch Hailey be a regular 4 yr old. This was the first time in a long time that Hailey was just like everyone else and not sick and frail and barely able to walk. I enrolled Hailey again the following year and because of financial reasons we had to pull her out. That was one of the hardest things Ive had to do,because I knew that she needed it. I woke up one morning and had a message from Mrs Jen saying that hailey was chosen for a scholarship... I mustve cried for and hour. I dont know that i will ever be able to thank the staff at Galloways enough for what they have done for my baby. They gave her the strength to do something that 2 years of physical therapy had not. Thank you so much to Galloways for helping my girl shine her brightest!!
Posted on: Thu, 28 Aug 2014 12:25:27 +0000
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