Leilani Emosi's PledgePage
Leilani Emosi
Sunday, June 6, 2004 8:35pm Hawaii Time
Hi. Leilani's mom here. Leilani has had a rough week. Last night at 2:30am she spiked a fever close to 101 and off to Kapiolani we went. She got two heavy doses of IV antibiotics and a lot of hydration. She received the normal examinations by the doctors, blood draws, blood cultures and 15 minute blood pressure and fever checks. They allowed her to come home today on oral antibiotics. Her counts have not fallen too badly yet, that should be around Wednesday.
On Friday she pretty much hit the wall. Her dad and I feel that the reality of her situation set in a little more this week because she was not feeling well. She had some struggles with understanding why she is having to go through this "Leukemia" all over again.
Her dad and I decided to share with all of you because we know each one of you care for her. She always talks about her guestbook signers and how she feels blessed by the love and response she gets on her website.
Leilani expressed some serious issues to me on Friday. We were on our way for her to finish her 9th grade testing and she began to cry. I asked her to tell me what had her so sad. She said she only wants to be a "normal" teenager. She wants the freedom to do as everyone else her age is doing. She is limited in her activities and can't plan any long term things because we are never sure when she will be in the hospital. She cried and cried. She said she is so tired of being sick. She feels none of her peers can relate because none of her friends have experienced serious illness, much less twice! The two friends that she sees once a year at camp that had Leukemia were both babies and don't remember a thing. She explained she is feeling very isolated and frustrated. She was due to go to camp today for the week. Camp Anuenue, for kids with cancer and those in remission. She had expressed fear about going as early as Wednesday before we came home from Kapiolani. We had hoped that she would feel better and attend. She decided against it. She has very valid concerns. One, she is afraid to be away from home feeling so badly. Two, she said I "mom" am her safety net and I would not be there. Three, she was worried about forcing herself to participate and feeling worse because of it. Dad and I sat down with her and listened with a tender ear. We can imagine and certainly understand the anxiety about camp and just everyday living. It is very hard for anyone to go through what Leilani has to endure everyday.
We feel helpless sometimes as parents. We are unable to answer the "why" questions. All we can do is love her, hold her, pray with her and assure her that we will be there every minute of every day. Leilani told me as she cried on Friday that she was worried that she had done all she is going to do in life. Of course this put the fear of God in me thinking she was giving up. I told her that I believe she will have a long rewarding life and to do her best to keep her core solid and grounded. It is okay to cry and be sad and wonder why. But, don't give up. She told me she wouldn't. She told me that she never sees herself being able to go to Disneyland or New York. These are things that she has wanted to do for a long time. Living in Hawaii sometimes hinders the ability to vacation, as I am sure many if not all of you can understand. Dad and I will do our best to grant her wishes somehow. Dad and I also often talk about how careful we have to be so that Kawehi doesn't fall between the cracks. The needs of the "healthy" child are often overlooked because of the overwhelming demand for the one going through treatments. We feel Kawehi is okay, but continue to remind ourselves to be careful. She needs just as much love and time, if not more, as Leilani does.
Tonight Leilani learned of the passing away of little Ryan Ma. She was 17 months old with a rare blood disease and was right on the same floor as Leilani. Leilani and she exchanged smiles and coos from time to time when Leilani was in-patient. On Wednesday they both sat waiting for x-rays to be taken and shared some special time in the waiting area. She is very sad. This is another of many deaths Leilani has had to mourn in her short 14 years of living. Even though the diseases are often very different from hers, they are still very close to home. Especially when you know the person. Leilani just beamed when she saw Ryan. She was a little doll. We will miss her.
Thank you so much for reading and caring. It is a daily struggle to keep our heads up and be strong for our children. They are what is important though. Dad and I have complete faith in God, Leilani, her doctors and our family. We will beat this too. It will just take time. We will journal again soon. It may be a few days. Leilani needs to get back on her feet again and find her strength. Your kind thoughts and prayers are so appreciated.
Thank you all so much,
Valeri
Leilani is 14 years old. She has been diagnosed with Leukemia.
For those of you who know her, you will agree, she is energetic, sincere and honest. Her spirits, no matter what, are upbeat and it fills everyone around her with a smile. If you haven't met her you are missing a great joy ~ you should make it a point to visit, email or call.
Leilani was in remission. The shock of being told that this is happening again is something the family was definitely not ready for, but then again, how could you be? Ese, Val, Leilani and Kawehi are strong willed and filled with faith ~ fighting from day one and not going to stop.
Her family is in need of support to help with the fight. Help can be in many forms: Prayers, Visiting, and Financial.
If you have the time or means to support, it is greatly appreciated.
Aloha.
Sunday, June 6, 2004 8:35pm Hawaii Time
Hi. Leilani's mom here. Leilani has had a rough week. Last night at 2:30am she spiked a fever close to 101 and off to Kapiolani we went. She got two heavy doses of IV antibiotics and a lot of hydration. She received the normal examinations by the doctors, blood draws, blood cultures and 15 minute blood pressure and fever checks. They allowed her to come home today on oral antibiotics. Her counts have not fallen too badly yet, that should be around Wednesday.
On Friday she pretty much hit the wall. Her dad and I feel that the reality of her situation set in a little more this week because she was not feeling well. She had some struggles with understanding why she is having to go through this "Leukemia" all over again.
Her dad and I decided to share with all of you because we know each one of you care for her. She always talks about her guestbook signers and how she feels blessed by the love and response she gets on her website.
Leilani expressed some serious issues to me on Friday. We were on our way for her to finish her 9th grade testing and she began to cry. I asked her to tell me what had her so sad. She said she only wants to be a "normal" teenager. She wants the freedom to do as everyone else her age is doing. She is limited in her activities and can't plan any long term things because we are never sure when she will be in the hospital. She cried and cried. She said she is so tired of being sick. She feels none of her peers can relate because none of her friends have experienced serious illness, much less twice! The two friends that she sees once a year at camp that had Leukemia were both babies and don't remember a thing. She explained she is feeling very isolated and frustrated. She was due to go to camp today for the week. Camp Anuenue, for kids with cancer and those in remission. She had expressed fear about going as early as Wednesday before we came home from Kapiolani. We had hoped that she would feel better and attend. She decided against it. She has very valid concerns. One, she is afraid to be away from home feeling so badly. Two, she said I "mom" am her safety net and I would not be there. Three, she was worried about forcing herself to participate and feeling worse because of it. Dad and I sat down with her and listened with a tender ear. We can imagine and certainly understand the anxiety about camp and just everyday living. It is very hard for anyone to go through what Leilani has to endure everyday.
We feel helpless sometimes as parents. We are unable to answer the "why" questions. All we can do is love her, hold her, pray with her and assure her that we will be there every minute of every day. Leilani told me as she cried on Friday that she was worried that she had done all she is going to do in life. Of course this put the fear of God in me thinking she was giving up. I told her that I believe she will have a long rewarding life and to do her best to keep her core solid and grounded. It is okay to cry and be sad and wonder why. But, don't give up. She told me she wouldn't. She told me that she never sees herself being able to go to Disneyland or New York. These are things that she has wanted to do for a long time. Living in Hawaii sometimes hinders the ability to vacation, as I am sure many if not all of you can understand. Dad and I will do our best to grant her wishes somehow. Dad and I also often talk about how careful we have to be so that Kawehi doesn't fall between the cracks. The needs of the "healthy" child are often overlooked because of the overwhelming demand for the one going through treatments. We feel Kawehi is okay, but continue to remind ourselves to be careful. She needs just as much love and time, if not more, as Leilani does.
Tonight Leilani learned of the passing away of little Ryan Ma. She was 17 months old with a rare blood disease and was right on the same floor as Leilani. Leilani and she exchanged smiles and coos from time to time when Leilani was in-patient. On Wednesday they both sat waiting for x-rays to be taken and shared some special time in the waiting area. She is very sad. This is another of many deaths Leilani has had to mourn in her short 14 years of living. Even though the diseases are often very different from hers, they are still very close to home. Especially when you know the person. Leilani just beamed when she saw Ryan. She was a little doll. We will miss her.
Thank you so much for reading and caring. It is a daily struggle to keep our heads up and be strong for our children. They are what is important though. Dad and I have complete faith in God, Leilani, her doctors and our family. We will beat this too. It will just take time. We will journal again soon. It may be a few days. Leilani needs to get back on her feet again and find her strength. Your kind thoughts and prayers are so appreciated.
Thank you all so much,
Valeri
Leilani is 14 years old. She has been diagnosed with Leukemia.
For those of you who know her, you will agree, she is energetic, sincere and honest. Her spirits, no matter what, are upbeat and it fills everyone around her with a smile. If you haven't met her you are missing a great joy ~ you should make it a point to visit, email or call.
Leilani was in remission. The shock of being told that this is happening again is something the family was definitely not ready for, but then again, how could you be? Ese, Val, Leilani and Kawehi are strong willed and filled with faith ~ fighting from day one and not going to stop.
Her family is in need of support to help with the fight. Help can be in many forms: Prayers, Visiting, and Financial.
If you have the time or means to support, it is greatly appreciated.
Aloha.