A Sister's Life Changing Experience Of Faith And Hope Part Eleven

I waited till the doctor left the room to ask the decision for what was going to happen with my sister. My parents remain silent and my sister tells me. She tells me that she wants to do the study, she wants the doctors to find a cure for her rare bone disease and she wants doctors to find the cure for the other syndrome. She tells me that one of the things the doctors have explained to her is that the study will also help with the other one they caught early. She explained that this study might even have another study that can do a reverse cure study in Seattle Washington that would allow her to get back into a normal life, just like before she found out about her two diagnoses that she never knew she had. I ask about the risks for that one and she said the worst that could happen with doing something that far away is she could have a little bit of a mobility disorder that would limit what things she could do in life that wouldn't allow her to do some simple things like driving or cooking. I then ask about the benefits. She then tells me one in thirty million people like her who have done these before her, have succeeded and have lived to tell their stories, but half of those people who succeed still live with some of what they once had but the cure hasn't been found because these are just studies that don't necessarily cure you fully, but cure most, if not all symptoms that you live with. I feel as though I have been punched in the stomach and someone has pulled on my sleeve of my shirt to say, no matter what happens she would live some kind of a normal life but she's still going to be living with two disorders and maybe a third, if these treatments don't work. I try to stay faithful, and I try to stay hopeful but how is it that my sister can be so positive if she doesn't get to live a healthy normal life. I mean doesn't she want to get rid of these disorders once in for all. Then there was something that happened, a new person came into my sister's hospital room. They had a girl about my sister's age, and the girl began to talk about she knows what it's like to have the disorders my sister has because she has them herself. She tells my sister, no matter what she does, it won't reverse what you have been born with but it will help those who are researching to find a better cure. I know this sounds crazy, but she told my sister that if she does go through with what she wants to go through then remember three things. She told my sister to remember that you have to have faith that this study can help. You have to remember that hope is what will help you in the long run, and finally even if the study doesn't work out for you, not to let that get you down because you're unique in how God created you in His Image, and nothing is more important than that. She then told us how she's been a patient of this hospital for awhile now because her case is more mild than my sisters, but the medicine treatment my sister is having right now, will help build up good cells of my sister's immune system, so that if she is transported ten hours away today then she won't feel as nauseous to be sick. Finally, before the girl leaves she tells us that whatever happens today for any of us, remember God is in control and he knows what He is doing. He knows that there is a plan for everyone and she'll be praying for us, but she wanted to give us her email address and her home address so we could write to her, and keep her in the loop of what was going on with my sister. We then told her goodbye and we all prayed with my sister at the moment. The doctor came in and said the ambulance was ready to transport my sister to the one hospital that had been ten hours away doing the research study. My dad went with my sister this time, and my mom and I decided to go home. I send my very first email to the girl, who was with her mom not that long ago in my sister's hospital room and tell her that my sister is about to do her very first transplant reverse study at LiliamVille Hospital and the girl quickly replies back with praying now.

A Sister's Life Changing Experience Of Faith And Hope Part Ten

The dream or what felt like one is when my sister woke up and started to talk. She was speaking fine. The doctor came in to check on her and said that there was a way to reverse her rare bone disease, so that she could still have somewhat of a normal life like she has been. The doctor said that there is a transplant reverse study being done in LiliamVille Hospital which is ten hours away from here.The doctor said that doing this study means she would miss a lot of school, but if it works then they will transport her to the nearest hospital from where the hospital doing the transplant reserve study is. Which would mean my sister would undergo surgery and hopefully be able to live a normal life. The doctor tells us some risks of the surgery and some benefits of it. I ask my parents in a hushed voice if they think it's such a good idea and knowing my parents they nod their head yes that they're willing to try. I shake my head in disagreement because of the risks, but my parents explain the benefits of this. I try to stay positive but sometimes it's so difficult to be positive with so many things going on, that involve the person you care about and love so deeply. I mean don't get me wrong but my sister is like my best friend, and if I were to lose a friend, it would sadden me with a grief that I wouldn't understand. I just want every treatment option to work and this plan to do a study that has potential risks but some great benefits, that's where I have the most trouble with being able to know how hard it can be to even think about letting my sister do something like this. Yes, I want her to get better. Yes, I want her to live a long life and yes I want to see her back as the Christmas Spirit Cheerleader at school again, so she can preform it on Christmas Eve and Christmas Day, but how can she when she might have to be ten hours away from where we live now. I mean it's a crazy thought, but does it hurt me to know that our parents are actually considering this. Well yes, because what happens if she passes away during this surgery if the transplant reverse study is not a success, and I have the last chance of ever saying goodbye to her, right here and now. I mean I know it's wrong for me to say but this is how I feel inside. I don't let the doctor or my parents, or sister know, because I don't want anyone worrying. I know that just because I feel this way, doesn't mean it won't happen. I mean it could or it might not but if it does, or were to, then I feel like what I did from the beginning, would be something that would change not only my parent's lives but it would definitely change mine. I know that there is still hope that the surgery if she were to have it, then that little bit of hope that I saw in the beginning would be okay. I  know my faith would grow stronger everyday, and that the light of hope I had once seen, wouldn't fade like it did before. Although, that is only like a fairy tale when I say that because I honestly am not sure what will happen, or if a decision to do this is going to be made today or not. I guess I'll find soon enough, that is once my parents and the doctor have had a talk with my sister.

A Sister's Life Changing Experience Of Faith And Hope Part Nine

Well, we made it into a hospital room and my sister is lying in the hospital bed. Our dad went to go get a coffee not too far from we are now and well mom decided to work on a puzzle book she brought with her, and the puzzle book was given to her by her mother our grandma who made it by hand with love and care. I on the other hand decided to keep my sister company, by talking with her about how everyone at school as missed her and then dad came in. He sat beside mom and decided to say he talked with the doctor who would be in shortly. Dad told us the doctor had another patient he had to see another patient. So, we waited for the doctor and then the doctor came in. Well the doctor examined my sister, and decided to call the nurse in. The nurse shortly than after came in and the doctor told her to start her on the medicine treatment right away. The doctor, asked my parents to step outside for a moment. I stay with the nurse and my sister. I even hold my sister's hand, and stroke her hair, letting her know everything is going to be alright. She blinks and tears start to run down her face, and I know what she's thinking. I assure her everything will be fine, and she'll be going to school tomorrow. She looks at me with tear stained eyes and wants to believe me and wants a light of hope to come into the room, and not have anything else be wrong with her. The nurse tells her she's all done and she'll be back to check on her in a few minutes. I tell her thank you because my sister has fallen asleep. I don't blame her, it's been a crazy day. The doctor comes in with my parents, and then goes to talk with the nurse, that just left. My parents, look they have both seen a ghost. Mom can barley look at me and just clings to dad. I look at my dad and he has this quivering lip, like he can barley speak and by the time I ask what's wrong, mom leaves the room. My dad explains that my sister has a rare bone disease called Coloialian Syndrome, which means that on top of her one syndrome they found, unfortunately this one she was born with but they caught it early after she was born, so it can be treated. This bone disease makes my sisters vitamin d and calcium levels low, if she doesn't get enough hydration, but also the right amount of food that will boost her immune system. The doctors want to keep her overnight for observation, but that would mean she wouldn't go to school. My dad says, she will have plenty of time to go back but the reason for keeping her overnight is because they want to monitor if the medicine for both syndromes will have been a success to make sure that she can still have a normal life, and this time they're hopeful that it will work. I mean that's good that the news is hopeful, but I was really hoping she would have been able to leave with us tonight. Then all of a sudden, something happened right before our eyes, something miraculous that no one would have believed would have happened but something did happen and it was like a dream.

A Sister's Life Changing Experience Of Faith And Hope Part Eight

I saw something incredible, for the very first time since my sisters accident. What I saw, was her doing the routine that she has loved ever since she was picked to do when she got voted by the student body to become Christmas Spirit Cheerleader. She cheered, she danced, and she did dozens of the tricks that were put into the routine. It was like she was her old self again. I was amazed, yet astonished. I was happy, yet tearful. I was proud to know that her determination doesn't let her down. It's December 12, 2007 and she's going to be able to do the performance on Christmas Eve and Christmas Day. I know she will, because she's my sister and nothing can bring her down, or so I thought. My mom gets off the phone just now, and she has an expression on her face that scares me. I ask what's wrong or at least I try to. My dad's already getting up from the table and consoling her in his arms. I know that can't be good. The light of hope I once stared into, seems to be fading away again. It seems like that a little cloud of gloominess is coming back, as I watch my sister drop her pom poms and go over to my parents, she looks at them as if she can read our mother's mind and she tells me that the doctor was hopeful that the first iv treatment for the syndrome would work but they want her to take a medicine that is similar to the iv treatment but she has to go to the hospital every so often to get the medicine and if she doesn't throw up or feel nauseous then she can come back home and still attend school tomorrow just like planned. If it doesn't work, she has to go to a research clinic to figure out what will and the nearest clinic is two hours away by car, but there is another one that the doctor recommended to our mom and that clinic is in California, which is awful because I couldn't imagine being without my sister or my parents for awhile. I love them so much that I want not a single thing to happen to my sister. My dad did tell us that the good thing about a research clinic is that they are going to try different tests and treatments to help my sister if the medicine at the hospital doesn't help her. So maybe there is still a light of hope out there somewhere, and with me telling you that, then maybe I shouldn't give up so easily like my sister. I mean my sister is a fighter. She wouldn't quit for anything in the world, so why should I? Okay don't answer that, because I know the answer is I shouldn't. Here is one more piece of news, my sister has to go to the hospital now for the medicine treatment which should only take a few hours, but I decide to go with them, this time. I mean I want to be there to support my sister, because if it doesn't work, she'll need somebody to hug. I'm going to pray that it works, and that this treatment will help her, so she doesn't have to go anywhere. I want her to be in school tomorrow. Although, we just arrived and now we wait to be brought back into a hospital room where my sister is going to get her very first medicine treatment.

A Sister's Life Changing Experience Of Faith And Hope Part Seven

Today, I'm getting ready for school and my dad has gone to work. My mother is still sleeping and my sister is awake. I ask if I can make her any breakfast and she says she's not hungry yet, just tired. I understand because of everything she's been through. I ask if she would like some water and she shakes her head no, and tells me that she's just going to get a little extra sleep for a few minutes. So, I decide to eat breakfast and then finish getting ready. I'm just about to head out the door as my mom stops me for a second. She tells me to sit down a minute but I try to explain I'll be late if I sit anymore. She says it will only take a second. I sit down. She walks into a different part of the house and as I can't see what she's doing, I can only think of gently and quietly sneaking out the front door before she comes back into the room. I'm just about to get up when I see she's coming back. So the only logical and reasonable thing I can think of doing is to sit back down. She sees I am sitting just like I was before she can even tell that I was going to leave. Mom then tells me she was going to give me this when the time was right, but she thinks now is a good time. I take the box that is colorfully wrapped, and I open it. When I see what's in front of me I cry but I cry tears of happiness. I don't know what to say because I'm speechless. If I were to tell you what I got you would think it might be silly or crazy, but to me it's a gift of thankfulness and it came from the heart. It came from my mom's heart because she made it. She made it with love and care. She decided to give it to me now, because she wanted this to be a special moment between the two of us. She tells me that there is more. When I ask how there could be more, she just tells me that I have to wait till dad is home from work and when I get back from school today. She now has me curious but I know I need to be patient and wait. Although some of you are probably wondering what my gift was from my mother and well the gift was a photo blanket. A photo blanket of our family together and a special photo of my sister and I in our room we shared growing up. Along with the photo blanket there was a sweater that read: Best Sister in the world to deserve an honor of watching out for a younger sibling. I know what you all must be thinking now, how could a sweater be able to have that much lettering. Well it has that much because my mom made it for me. Anyway, my mom says I better go but we'll spend more time together with dad, and my sister when I get back. So I go to school, and the principal stops me. I think oh no, I'm going to get my first detention for being late but I'm not. In fact the principal wanted to know how I would like to be the school's honorary leader for the program we have for those with special needs. I accept and with my sister coming back tomorrow, both of us will have our thing. I'll be making a difference in children's lives by teaching them about kindness and growth and my sister will be doing her Christmas Spirit Cheerleader routines again, since she's been out of school for a bit. I tell the principal thank you for the opportunity and then I go on my way to my very first class of the day. There isn't a half day today, so I go to all my classes, including lunch and then I head to the gym to do the routine with the group of girls my sister has known since we've been in this school, and then I go home. Finally, as I got home my dad was there home from work. My sister was up, and it looks like my mom and her had just finished doing all the schoolwork she missed, while being in the hospital. I put my book bag down a minute, as my parents give me something together. They tell me that this is the last thing they have for me, and it's nothing big, just a little something they thought I would enjoy having. So I open it up, and this time it's a scarlet and silver locket that is in the shape of a pink heart, and inside is a photo of my parents, myself and my sister. They thought I could wear it, so I would always remember how much family is important. Then out of nowhere, my sister gives something to my mom, and my mom hands it to me. My mom said when my sister couldn't move well or talk well because it hurt,  she could see it in my sister's eyes and expression that she wanted me to have something that she thought would be the perfect gift. So I open it and inside the box, was a beautiful charm bracelet. My mom said it wasn't made by her or dad, but I knew that it had come from the gift shop, but I could tell there was an angel charm on there with my name engraved in it. My mom then told me she had a lady in the gift shop make it special, because she knew my sister would have wanted me to have something that would make her feel special for what she did for her. I cried more tears of happiness but then I saw something that I've never seen happen in my life.

A Sister's Life Changing Experience Of Faith And Hope Part Six

So it has been difficult with everything our family has been through, but my parents and sister were finally home. I am beyond thrilled and so was my sister. I mean she's overcome some obstacles but this new one is going to give her the determination to never give up. I ask her if she wants to practice the routine with me, so that when she goes to school tomorrow she can have it ready to preform when that time comes. She shakes her head no, as she just walks to her room. My parents tell me to not take it as she just got home, and wants to rest. My parents told me they gave her supper at the hospital, after the treatment. They told me it was just courtesy and policy that after an Iv treatment for my sister's condition that they give as much water and food that my sister can handle. So, we decide to have supper together. I tell them all about my day and how practice went.My parents are thrilled and they expected nothing more or less from me. My sister, now asleep is going to have her first recovery day at home tomorrow and have my mom help her catch up on some of the schoolwork she's missed. Our principal is okay with that because he understands how frustrating everything has been for our family. I on the other hand, have to get up for school in the morning, and still go to the practices until my sister is at school. The principal says she can come back the next day after her recovery day so she can catch up with everything she's missed. Oh, I had almost forgotten to tell you. The person who had called me next was my sister from her hospital room. Yes, I know what you're thinking, how could she be calling from the hospital if she is at home now. Well to answer all of that, this was before she even was home and I knew she was going to be coming home, after everything that has happened. Yes, this was the same day that my dad told me everything when I was at practice. Now, I must be going to bed myself because it's been a very exhausting day and I just want to sleep. My mom has already gone to bed, but before she did, she told me how proud she was of me for continuing to do marvelous and outstanding things for my sister. I told her thanks mom, and that I loved her. She told me that she loved me too. Now as for my dad, he told me that he's going to bed in a few minutes, but he was going to watch a little bit of J10 New Broadcasting News Network. I also might be knowing that you're thinking that's a long name for a news station, but that's what our community wanted. Okay, well that is what the mayor wanted and we can't stop that decision. When I say we can't stop it, I mean there is always this election every so often that allows people like my parents, to vote on what the news station should be called. Now let me just say that last year it was called, May Channel 9 News News Network. Now I didn't like that name, but you see where I am going with this, no matter how our community or our parents vote in the election, it's always up to the people who work for our mayor and then the mayor gets the final word. So this year, our news station name is called, J10 New Broadcasting News Network. I tell my dad goodnight, and he says it back. Finally, I get ready for bed and just as I'm about to, I check on my dad once more. He's not there anymore, because the television is off, and he's gone to bed himself. So I decided to go to bed and get ready for a brand new day full of happiness and excited to see what tomorrow will be for everyone.

A Sister's Life Changing Experience Of Faith And Hope Part Five

I answer the second time it comes around and I gulp. I gulp because I'm fearing the worst right now. I'm fearing that my sister has either passed away, or that the results have showed something different. I try to be spirited and admirable. I try to be brave, and I try to be positive in all of this going on. I know before I answered the second time, I saw the missed call was from my mom. The second time before I answered finally, it was from my dad. I still remain silent as my dad tells me the reason mom was trying to get a hold of me was because there was a little bit of good news and that there was some bad news. I gulp, and think of the worst possible scenario when I hear that there is some bad news. I sigh when I hear there is some good news. I wait for him to tell me good news and he says the bad news first. I definitely fear the worst and I sit down. I know what you're probably thinking, stop saying you fear the worst when you said that already but you know in any situation, you don't know what people go through till you've been through it yourself and you know how to deal with the situation. I just pray my sister is fine and she hasn't left us and that she can walk, and use her arms and hands. My dad tells me that my sister has CaluianiSyndrome which means that her body can only take so much food and water, that she needs a iv treatment to help her but the good news is that they have been doing therapy with her since her accident and she can walk and use her hands and arms. She can come home and go back to school. She'll be able to do her Christmas Spirit Cheerleader performances and practices. Although my dad said they caught the CaluianiSyndrome early, so it can be treatable but there are some side effects to it. I sigh in despair because I really thought since they caught this syndrome early that she would be okay and nothing bad could come from any of this. My dad told me that some of the side effects of CaluianiSyndrome can cause tiredness, vomiting, possible to catch pneumonia if outside for long periods of time, can cause a skin irritation of a breakout of hives if having any dairy products. The syndrome also has one main huge side effect, that my dad reads and this is the one I dread, but I don't let him know that. He reads to me that the main huge side effect of this syndrome is that people can pass away from it, but if caught early it can be treated with an iv treatment, so that it will help some symptoms of nauseousness, or vomiting, and if it is caught early,  that people who live with this syndrome, can live a long time, but if  gets left untreated, and most cases for this syndrome normally go unknown, then they can pass away sooner than having a long life expectancy. I cry because there are tears of happiness but I also know that my sister is going to fight through this and she is going to do everything in power to not let this news, get her down. My sister's name, as I've not told you is Penelope Ann Johnson, and my name is Elena  Kate Johnson. My dad tells me that the other news that he has is, they will be giving my sister the first iv treatment in the hospital today, and then that should give them time before supper or before I get home from school today, that they should be home. I am crying more tears of happiness because this is making me thrilled to know my sister is going to be alright. Does this mean she's out of the woods yet? No. Does it mean she has more work on getting better? Yes. I believe that some light of hope has come back, into our lives and that our faith is getting stronger and I feel like this is a new beginning. I feel like things are becoming a wonderful reality and that this is the best news that we could have ever received tonight. In a few ways, I feel relieved, and in other ways I feel sad because of everything my sister's been through. I ask if she can talk well now, and my dad doesn't say anything because the phone goes silent, and I see mom's calling me from her phone, and that dad has hung up. I would love to know what goes through my parents heads as this happens, but my mom's connection on her phone is silent and I see she has hung up as well. Then I see an unknown caller comes up on my phone. This time, I'm not sure what to expect and I don't know if I should answer because it could be a prank call or it could be someone who wants details on my sister. All I know is that I answer and what I hear on the other end is amazing, but why it's amazing and the reason I say that, is for another time for you to know and find out. I will say that everything you've read so far about us, has been really difficult.