Wednesday, September 30, 2009
Monday, September 28, 2009
Almost three decades ago, I was living with the possibility of losing a child to an illness that became life-threatening. I can understand the terror that Travis and Haley are going through as they have to wait and wonder and watch as their little one struggles to survive. I remember sitting in the hospital, wondering what was going to happen. As a mother, I wondered if my baby was going to live. My baby was so precious, so tiny and I felt helpless. All I could do was wait and pray.
Jay and I had just had our fourth child. We could not have been happier. We had been blessed with three beautiful girls and we would have been happy to have either a boy or a girl. Back when I was having babies, you didn’t get to find out what you were having. It was always a surprise. After nine months of waiting, we were so excited to hear the doctor announce, “It’s a boy!”
When he was only 3 weeks old, he contracted pneumonia. After going to my local pediatrician several times, I felt silly when they told me I was overreacting and the baby was fine. Travis had quit eating and was sleeping non-stop. I couldn’t get him to wake up. Finally, we rushed him to the emergency room. I was devastated when I found out what he had and that I should have taken him in earlier. I was so afraid we were going to lose him.
At one point, the doctors told us his heart, lungs, and liver were enlarging. At times, his heart literally would stop. I still remember Jay pulling me aside and telling me he didn't think our little boy was going to make it. I remember Jay telling me that it would be okay; we would get to raise him in the next life. I cried at the thought of losing him. I had a strong testimony of our eternal plan, but I could not let him go. He was my little boy; I had carried him for nine months and I wasn’t ready to let him go. Even so, Jay and I decided we should have Donalyn, Elizabeth, and Vicki come to the hospital to tell him goodbye. I have experienced some painful physcial accidents in my life, but none could ever compare to the pain that ripped out my heart during that time.
How grateful I was to see him recover back to health and be able to lead a life of good health. He has truly been blessed. Travis has always been a optimist and light in my life. He has always taken such good care of his mother. Even as a young man, he doted on me and treated me like a queen. I can remember the “love” notes he would leave for me. One was posted on the wall in the laundry room where he knew I spent a lot of time. I think it stayed up there for years. I never got tired of looking at it. When he was just a boy, him and his best friend Jared Thatcher, invited me and Neta (Jared’s mom) on a double-date. They asked us if they could drive because they weren’t old enough too.
Now the irony of the present day is that I am watching the son I almost lost watch his daughter struggle with life and death. I am not sure which hurt worse. Being a young mother watching my baby fight for his life, or being a mature mother watching my baby as a grown man feel the same way I did so many years ago. I can say I truly know his pain and his fears.
I know this. I am so proud of the man he has grown into. He is handling his situation so well, with so much optimism. Watching him as a baby, I had no idea what a comfort he would be to me when he grew into a man. I only wish I could do something for him to help ease the pain. There truly is no greater pain than to watch your child suffer. The strength of his testimony and his love for his God is a great example and a blessing to everyone. He truly desires God’s will for Ari and accepts this trial with the greatest humility.
Ari has the strength and tenacity of her father. She is a fighter in every sense of the word. She won’t give up until her last breath. What courage she has and what bravery she has shown at such a tender age. There is no doubt she is a special spirit. My prayers continue to be with their family. I love them all very much.
Sunday, September 27, 2009
Saturday, September 26, 2009
Friday, September 25, 2009
I wrote back to some of my friends that wrote to me and wanted to share more with them about Ari's experiences. She has come so near to death, it is unbelievable, sacred, hoped-for, hoped-against, and many more emotions all rolled into one. Haley has been my rock. I watch her and cannot believe what an incredible woman and mother she is.
When you marry someone, you have no idea how this person would react during an immense trial. You're wrapped up in "being in love." I thought I was in love with Haley when I met her. I thought I knew what a great woman I was marrying. I thought she was a spiritual, faithful daughter of our Heavenly Father. The small knowledge I had then at that time in our courtship, is a tiny grain of salt compared to what I feel for her now. She has become the ultimate mother as she has carefully tended to our little angel. Not just during the hospital, but during the many months that preceded Ari's condition. Haley spent many sleepless nights holding her, giving her water, changing her diaper, and loving her as only a mother can. My respect and love for my wife has heightened to unimaginable degrees as we have held onto each other through this ordeal.
Date: Thu, 24 Sep 2009 05:52:16 +0000
To: Josh and Joni
Subject: A story from the past
Thanks you guys for all of the offers. Here at the hospital they have a laundry room and a kitchen. Everyone in our area of the hospital are basically living at the hospital because most of the kids are on life support or they are in a very late stage of cancer and the odds are highly against them. So the hospital does provide good living quarters. Due to the necessity of the parents wanting and needing to be there 24 hours.
I would love to see you guys. I haven't seen Josh for so long. Right now for some reason I think a lot about when Josh and I were younger. I don't know why, its actually odd. I think I long for the days of peace and no worries. However I really am grateful for this experience Haley and I have grown so much from it in so many areas and different ways.
It truly has been a great blessing from God to allow us to have this experience. It is no doubt a challenge. For example, this morning around 2:00 a.m. She got a fever of 105 degrees due to the infection in her lungs and the virus in her liver. Unfortunately, the chemotherapy has damaged or has shut down her immune system. So she can't fight those two off and it literally starts killing her. This morning when it happened her eyes got dark circles around them. She got so weak she couldn't hold her head up she began shaking like she was in a minor seizure or convulsion. She had just drank a gallon in a half of water because of her "DI" diabetes insipidus she was literally dying of dehydration and the water she drank did nothing but go right through her. We (doctors) still haven't figured out her DI and how to accurately treat it for her.
The nurses had just checked her blood the hour prior and it was somewhat stable considering her stage of sickness. Nothing was too alarming. Her heart beat got really slow around 20 bpm and she could not breathe on her own. I told the nurses that her blood must be low or weak. The nurse told me she just checked it an hour ago and it was fine. I insisted there was something wrong. I said, "She's dying."
The nurse said "She's just sick from the fever."
I firmly replied, "No. This is like last week when we had to do an emergency blood transfusion.
She said, " I'm only supposed to check the blood every four hours and she just got a blood transfusion at 10:00 p.m."
More firmly I insisted, "We need the doctor. She is dying."
Within 5 minutes the doctor on the floor came in, immediately looked at her and ordered for blood to be transfused. The disease LCH and the fevers had attacked that blood and burnt it up within one hour. The doctor said we were within minutes of losing her. In the last month we have had 3 of those situations. Sadly, because of the virus and infection it has made it that much more of a challenge for her.
When it happened this morning, I was waiting for the doctor. I was watching the monitor that displayed her heartbeat and her oxygen intake. Her heartbeat dropped to around 20 bpm. I knew she was dying and I knew she only had minutes left.
Haley was holding her and encouraging her to fight and hold on saying that we will have help for her soon. Haley whispered to her, "We all love you. Your brother and sisters love you. We're all so proud of how strong you are and the courage you have. We love you so so much and we want you here with us. But if you have to go that is okay. We will see you again, we just want you to be peaceful and happy."
Haley tried hard to fight back the tears so that she could continue to encourage her, but the emotion was so much for her to bear. I reached down and took hold of Ari's little hand. It was very cold. I bent over and put my hand under her head and neck. I kissed my little angel goodbye. I thought we were losing her. Then I told her that I love her. At that point, they came in with the blood. Miraculously, she pulled out of it and we have another day with her.
The biggest challenge to me is wondering if God wants her back or not. Haley and I wonder at times if we encourage her to fight so hard and that is just prolonging her passing. But it is next to impossible to not fight and believe that she will recover. Haley and I have committed to have a positive attitude and to learn from this experience. We will fight and encourage all that we can. But, we put our faith in Christ and the Atonement and put our trust in God's decision. I do have to admit that at times Haley and I feel like we have it hard (well Ari has it hard), but then we meet someone else and they tell us their child's situation and their story. Then Haley and I actually feel guilty.
Thank you so much for all your offers.
I received emails from some of my friends expressing their love, support, and prayers for my family. It truly meant so much to me to know that I am blessed to have lifetime friends. The world changes so quickly and people hardly ever stay in the same place anymore. I feel fortunate that a lot of my friends are friends I have had since childhood.
I am feeling overwhelmed by the people that have supported us. I run into people almost every day who have said they are following the blog. In some ways, I feel like I don't want that. It's like when I am driving in my car, sometimes I won't put my seatbelt on. I know it doesn't make sense, but I think that I don't need a seatbelt because I'm not going to need it. I'm not going to get in a wreck. In that sense, I don't want this blog. I don't want people following Ari's condition because it means she has a condition to follow.
I do want eveyrone to know that I am grateful for all of your love and support. I know my family has received emails and notes from hundreds of people wishing us well and wanting them to forward their thoughts. I appreciate it so much. There is not much anyone can do to fix this problem, but the support certainly helps to ease the pain. Thank you, from the bottom of our hearts.
Thursday, September 24, 2009
Like I wrote before, this all started as a journal entry and as I wrote it into my journal I thought it would be somewhat entertaining for all of you to read it.
I do want to tell you all thank you for helping me have such an enjoyable child hood. I have met many people as we all have since our days in Page. Many of them have shared their lives with me and have related their stories of "growing up" I often feel privileged to have had not only the friends that I had, but also all of your families that took part in my life.
I saw President and Sister Grygla about 3 months ago in St. George at my son’s soccer game. Kelly’s daughter was playing right next to us. When I saw sister Grygla she had already spotted me and with much enthusiasm she was saying "Travis, Travis Lane? Is that you?" It felt like I had just met up with a relative that I had not seen for some time. She and I talked and talked. I confessed to some of the pranks that Josh and I had pulled. She and my mother were both there and both not believe that Josh and I actually were the culprits of those pranks. Specifically the time that Josh and I took Gryglas suburban and drove it to Larsons house. Then took Larson’s truck and drove it to Gryglas. This was all before Josh and I were legally old enough to drive.
I have just read what I wrote. It kind of sounds silly, but as I wrote it into my journal. I thought that you all would find some humor in it. As you can tell I took parts of what I wrote in my journal and put them in here so it is not the best illustration..
I sincerely want to thank all of you for helping create a day in my life that would provide so much peace, comfort, and relief at such a challenging time in my life. I have not only dreamed it once, but at least 7 times in the last two weeks.
By Travis Lane
Now this is the dream that I have had many times in the last two weeks. Keep in mind it was actually part of a day of our lives. (Not the soap opera but an actual day of our lives). I think it still sounds like I am talking about the soap opera. I wonder if any of you remember this day. It was on a hot summer day. Remember when it would rain in Page in the summer time? Now not just a sprinkle of rain but when it would rain for about two hours causing the streets to almost flood with water and if you would stand out in the rain for just 30 seconds you would be soaked.
Josh and I were behind his house playing in the river of water that was created from the run off coming down the street into the desert. We would sit right at the beginning of the start of the water and slide down about 10 feet. Josh and I thought that we were reliving a part in the movie the "Goonies" We walked back up to slide down again and Tammy, and Shanna were there. I remember the first thing I noticed about you two is that you didn’t have any shoes on. I thought to myself "are these girls crazy" You two would run around on those rocks just as if you were wearing the best pair of hiking boots.
Here is the rest of the dream, which is actually a past reality. We played there for what seemed like a long time. Then Andrea came walking down the street with a purple umbrella. I remember the color distinctively because I had never seen a purple umbrella before. It appeared that Andrea had already known or met Tammy and Shanna. The four of us continued to slide down this little river over and over again while Andrea would stand right on the edge of the sidewalk in front of Jones' house watching us go down the small river and then hike back up. Then after that became boring someone suggested that we actually crawl up this drain that came out from underneath the road. That is where the majority of the water was coming from.
I don’t know who was headed in first, and it definitely was not me or Josh. That is when Andrea warned us of all of the bugs and insects that were inside that pipe. It scared me enough to not want to do it but that did not stop the rest of you. I remember acting like I was talking to Andrea so it did not look like I was afraid to go into the pipe. I remember you guys made it look like so much fun all of a sudden you would come shooting out of this pipe from nowhere down a small waterfall into a 10 foot long river.
After witnessing the enthusiasm of Josh, Shanna and Tammy I thought I would try it. Sure enough it was not as fun as you three made it look. (It hurt) I remember thinking am I missing something because this hurts really badly. I didn’t give up I tried it again, the second time it hurt even worse. I thought are they really enjoying this? Then Andrea asked me is it fun Travis? I replied with an enthusiastic excitement "It’s the funnest thing ever you got to try it!" (I think that was the first lie I told in my life) I could tell after my response Andrea was really wanting to try it but she still hesitated. I went back for more and oddly to say the third time was enjoyable. I think what had happened is I learned where the big rocks were and I learned to go around them, making it a more enjoyable ride.
Then Tammy was telling Andrea how fun it is and she’s got to try it soon after all of us were trying to encourage Andrea to take part in this crazy activity. I remember Andrea kept saying "my mom will be so mad at me if I get my clothes dirty." Finally with much debate Andrea indulged on the safari. We were all down ready to greet her hoping that she would find the same type of insane excitement that we had found. Andrea got up and trying so hard to fight the tears back, mustered the words " That was really fun." At the time Andrea and I knew each other the most out of all of us. I could tell that her experience was much similar to mine and the words "That was really fun," were a complete lie.
After everyone ran to the top to go down again, I said to Andrea "Are you ok?" She responded with a wrinkle in her eyes, a squinted nose, and tight lips. "No, it hurt." I then said, “On the third time it is fun." She responded "I have to go down one more time before it is fun?"
Tammy became adventurous and scouted out another natural amusement. She had followed the water and it lead us to a much bigger waterfall that at the end dropped us into a pool of water of about three feet. We all walked around it sizing it up to see how it compared to the one up stream. There was no way that I was going to go down it, that was crazy and suicidal. All of a sudden, I see Andrea lunging into the waterfall with her eyes closed sliding down this jagged ravine. Then it shot her in the air into this pool of water that she was submerged into. For a split second, I thought she was seriously injured or maybe even worse. All of a sudden she sprung out of that water with both hands in the air shouting "That was so fun!" She was right. It was a blast. I’m not going to say that it did not hurt, but it was fun. The adrenaline made up for the pain. We played on that waterfall for what seemed like hours. I remember thinking to myself “I don’t think life can get much more enjoyable than this." Afterwards, we all hiked up the hill to Jones’ house and Sister Jones had hot apple cider for us. It was the first time I had ever tasted apple cider. I felt like an oddball because everyone else had tasted it but me.
By Travis Lane
My email continues:
On top of Arianna’s condition I have three business transactions that are about a 4.8 Million dollar loss. I guess that is not as bad as it seems considering I have some business deals that have come to me because of two of those deals. They will make up the loss and much more. However, at this point it is still a 4.8 Million loss and it is frustrating, stressful, devastating, and humiliating and just a complete bummer to lose 4.8 Million.
Well it is what it is and there is a reason I have shared these last two paragraphs with you.
Now here is the corny part, about two weeks ago I started having this dream. (Very odd that I would dream considering I would only sleep about an hour a day) However, I would have a dream of a day in the past. (It is an actual day of my life when I was about 10 or 11 yrs old). I am going to share this dream with you, but first I want to recap on how I met you each one of these people that are in this dream, because that leads into this repetitive dream I have had, which turns out to be an actual event in our lives.
Josh, I remember the first time I met you; your family had been moved into your house on Rim view for about a week. We invited your family over for breakfast and in your back pocket was a "Boys Life Magazine" I didn’t know that magazine even existed at the time. You showed it to me and I saw all of the neat things in there from Chinese Stars to Smoke Bombs. Later that week we placed our first order and our box of stink bombs, smoke bombs and booby trap contraptions showed up. We were instant best friends from there on out.
Andrea, I met you before I even moved into our house on Rim View. Remember my cousins lived there before I did? (Tyler Hendrix) Ok, tell me if you remember this how I do? I think we were about 5 years old. I remember that you, Tyler, myself and Cindy? Was that her name? She lived right across the street from you. Then she moved and no one ever lived there since. This is the first day I met you. I went over to Tyler’s house, which later became my house. Somehow we ended up playing with you and Cindy. It seemed like we played all day. I remember playing in Cindy's backyard. Someone proposed that we should all get married. You and Tyler were to get married because you two had dark hair and Cindy and I were to get married because we had blonde hair. I was all for it but, you had some definite reservations and questions about it. You would not agree to it until you consulted your mom. We held off the ceremony until you returned with an answer from your mom. The response was very wise; we were too young to get married so your mom would not permit it.
Shanna and Tammy, I met you shortly after you had moved into your house.
Continued at: http://prayforari.blogspot.com/2009/09/story-from-past-part-v-dream.html
By Travis Lane
I continued my email to my friends. This is what I wrote:
The following is a journal entry that I thought you might find enjoyable. I actually revised the journal entry to a story for you guys. So it’s not the exact journal entry.
My youngest daughter Arianna, is 22 months old. She has a disease called Langerhans Cell Histiocytosis (LCH). It is a fatal disease and a chronic illness. It acts like a cancer and in some ways is much more deadly than cancer. The negative side on this disease is that it will spread much faster than cancer and it will attack more aggressively than cancer. There are two types of this disease. A single symptom and a multi-symptom. The single will develop in one part of the body and the multi will develop in multiple areas.
Unfortunately, she has the multi-symptom and it has developed in her brain, lungs. kidneys, liver, spleen and bones. It is a blood disease making it possible to be carried throughout her entire body. Sadly, each section of her body that this disease has contaminated has caused other problems for her as well. For example, the disease in her brain has completely damaged her pituitary gland. This has caused all kinds of short term related problems but the long-term damage is that she will have "Diabetes Insipidus." Her lungs have a terrible infection in them, not allowing her to breathe on her own at times and accumulating a large amount of fluids also causing her lungs to swell about twice their normal size. Her kidneys have an infection as well as they are swelled to three times their normal size. Her liver and spleen are also infected to the point that they are not functioning and they also are three times their normal size. The disease in her bones is the most painful. They explain the pain like getting a cavity in your tooth drilled on without receiving Novacaine.
We have been at Primary Children Hospital for the last three, almost four weeks. During our stay here, the doctors wanted Haley and I to receive counseling to prepare for Arianna’s death. Arianna had developed to a point that appeared that she would not be able to recover. PCH informed us that out of all of the cases they have treated that Arianna’s was the most severe and was similar to a late stage 3 of cancer. Needless to say, we had our other three children come up to say their goodbyes to their little sister.
The following week was a challenge physically, spiritually and emotionally. There were many times I thought I was watching her take her last breath or witness her last heartbeat as I would watch the doctors and nurses hook her into the life support breathing machine. I would watch the monitor that displayed her heart beat per minute count down from 120 bpm to 110 to 90 to 70 to 50 to 20 bpm. Her Breathing would go from 90 to 50 to 40 to 10. They would then aggressively run a tube from her nose into her lungs to vacuum out the fluids on her lungs trying to allow her lungs to take in oxygen. Sadly, that event has taken place many times.
She also has a viral in her body and because of the chemotherapy her immune system has no ability to fight the infection or the viral in her body. The viral and infection have become more life threatening than the LCH. The doctors have all questioned, why she has continued to live. She fights just enough to stay alive, she just will not give up. I’ve heard of miracles but the fight she puts forth is beyond belief. You have to see it to believe it kind of thing. The doctors shake their heads wondering "How does she continue to make it." I have never been so inspired in my life, as to witness this daily fight for life when all odds are against her. I wonder every day "How can a little tiny human fight with such determination and belief of success?" The answer came to me a couple of days ago, of what appeared to be her last breath. It’s not the human in her fighting it’s the Godly spirit inside of her that knows and understands something the human does not.
(You have just received the very quick watered down version of Arianna’s life these last three weeks.) Liz started a blog for her to help keep people updated on her condition. Sometimes its updated and sometimes it is not. http://www.prayforari.blogspot.com/
Continued at: http://prayforari.blogspot.com/2009/09/story-from-past-part-iv-how-i-met-my.html
By Travis Lane
Edited by Elizabeth (Lane) Hibbard
The dream stayed in mind. The three friends kept coming back to me. Many more memories came to my recollection. I felt like I needed to reconnect with those friends. I wanted them to know how much their support was helping me. Even if they didn’t know it had been coming to me through my dreams. I am glad we are in an age of information and that we can instantly email people—even if we haven’t spoken to each other for years. I’ll warn that my original email was full of typos and poor grammar. Liz edited for the sake of the blog. Here’s what I wrote:
Date: Tue, 22 Sep 2009 05:23:14 -0700
Subject: A story from the past
To: Josh, Shanna, Tammy and Andrea
How are all of you? I really hope that things are going well for everyone and your families. It has been a long time since I have spoken to any of you or even seen any of you.
Josh, I don’t know when I saw you last I believe it was shortly after your wedding? You emailed me about what 4 months ago? It was a pleasant reunion. I thought when we were kids that you and I would never go a day without talking to each other. To my surprise it has been many years. I don’t know if your wife is still planning on running the St. George Marathon in October. You are still very welcome to stay at our house. Haley and I most likely will not be running it this year due to the sickness of our youngest child, however if by some surprise we are able to make it back in time we will still run it. Haley and I have run it for the last 7 year. It has become a tradition of ours every year. Out of all of the Marathons and triathlons I have participated in I believe I do enjoy the St. Marathon the most because of the scenery. We would really enjoy it if you stayed at our house even if we are not there.
Shanna, I think the last time I saw you was when you, Chris and your oldest child came to Page. I think your oldest child was about six months when you guys came down to Taco Bell to say hi and you were leaving town. I hesitate to write you this letter because I know as you read it you will be correcting my punctuation, grammar and spelling. At least the poor spelling will be limited because of spell check. (So correct away.)
Tammy, I think I last saw you and Moss at the M.T.C. You and I were both teaching there and Haley, my wife, had done some type of sewing for your wedding dress. You and Moss were to be married shortly.
Andrea, it has been a while I think, well the last time I believe I saw you was when your car broke down at University Avenue. I forgot the crossroad, but I was in my blue jeep about two cars behind you. I got out and pushed your car to the side of the road and got it fixed. Shortly after, you were on your way. It does seem like I saw you and Zack at times in Page when Haley and I lived there. The most surprising thing to me is when Haley and I lived in Page was how good of friends your mom, Leslie and Haley were. Haley and Leslie used to run together often.
The reason for this letter is to express the gratitude in my heart for the great friends that you were to me when we were younger. I didn’t realize how much of an impact all of you had on my life growing up until lately I have reflected much on my life. I have a lot to be grateful for in my life. A current and recent experience has put me in a state of mind of much gratitude for life, family, friends, Christ, testimony of the gospel and an understanding of the purpose of life. For some reason this experience has caused me to reflect on a time in my life—actually a specific day of my life. I have hesitated to share this with you, because it is kind of corny. (All right, Shanna, how do you spell corny?)
Continued at: http://prayforari.blogspot.com/2009/09/story-from-past-part-iii-about-aris.html
Edited by Elizabeth (Lane) Hibbard
This whole journey with Arianna’s sudden sickness happening so quickly is certainly not something anyone would expect. No parent could ever wish up their child the pain and agony that Haley and I have watched wretch and possess the body of our sweet, little angel, Arianna.
Yet, here we are, in a hopeless circular hell that keeps going round about. We’re her parents. Her little eyes look soulfully at us, as if we have the power to stop the doctors from hurting her. I’ve had to hold her down while the doctors “hurt” her. I’ve had to listen to her sweet little voice cry out, “Daddy, daddy, help me!” And, I can’t. For the first time in my life, I can’t help her. It hurts more than any pain I have ever felt.
We’re watching helplessly each day as she struggles with her pain. We have kept our spirits high and our attitudes positive whenever we are around her. We don’t want her to see tears or pain in our eyes, so we keep it carefully hidden. If she could understand the pain we feel, she may very well give up just to save her parents from their agony. Sometimes we have momentary lapses where we want her to give up simply so that she may be free her from this body that is inflicting such pain and torture.
I have been experiencing a recurring dream that I can’t help but ponder on in my waking hours. It’s so strange, sometimes I only sleep one hour a night, but I still have the same dream. I’ve tried to figure it out. Tried to understand what meaning it holds. I’ve come to the resolution that it doesn’t have any meaning, it’s just a safe place for my mind to go to get away from the challenges we’re experiencing in the waking hours of my life.
The dream, however, has touched my heart. It is of a time in my life when I had no worries. I didn’t have the stress of financial burdens. I didn’t have to worry about where I lived or what I had to eat. I had good friends and a carefree life. I didn’t have the daily struggle of watching my own child suffer. The dream is not actually a dream in the sense that it is a fictional story. The dream is about a real-life event I had with three of my closest childhood friends. But the memory comes to me in a dream.
As I have thought more about that dream, I realized just how much those moments of my childhood meant to me. It is no small coincidence that during the worst part of my adult life, that dream with those friends has crossed through the boundaries of time and reached out to me as a way of supporting me. Though nothing more than mental imagery, it is a real as if it happened yesterday. The feelings, the camaraderie, the innocence, and the childlike illusions are all intact. And, those feelings buffer the pain and illustrate just how beautifully interwoven each of us are in the tapestry of life.
I woke up this morning and checked my email as I always do. Travis sent me a touching email he shared with four of his closest childhood friends. The tears flowed as I read his words. It is truly impossible to understand what a parent who is fighting for the life of their child must be going through. I will post parts of that email as I get time throughout the day to edit it. It's beautiful.
I am going to start working in St. George again next week and will be away from my children for four nights each week. My heart was aching as I thought of having to leave them. But, knowing it will only be temporary and will get our family to a better place, we have chosen to make the sacrifice now.
I still remember the quote that President Jones had on the wall of the seminary for all of the four years I attended. It read, "Sacrifice is trading what we want most for the moment, for what we want most in the end." That may not be exact, but that is the closest I remember it.
After Travis' email, I not only felt a sliver of his pain, I felt that I should be grateful that my situation is not the same as his. It's funny how we keep hearing that. Travis and Haley were glad they weren't in Vicki's shoes; and Vicki was glad she wasn't in their's. My friend, Lisa (Hamilton) West, always made the comment clear back in high school that if we all threw our trials into a pile and could go and pick out the ones we wanted, we would still probably take ours over someone else's.
I know people who have lived through some of life's hardest trials, and they always say, "I wouldn't trade this experience for anything." I think that is because through our greatest trials we also receive our greatest blessings. I know that Travis and Haley testify daily of the blessings they have received from this trial. Certainly, they would not have chosen it, but they have such a positive outlook they not only are leaving a legacy for their children, but for those who watch their example.
I don't think anyone who knows of their situation has not taken time to reflect on their own lives. Perhaps even hear their own murmurs and complaints. Hopefully, you have also felt gratitude as you thank the Lord for all of the blessings in your own life. This experience has touched me and I am thankful to Travis and Haley for sharing it with so many people. They are angels whose lights are shining bright, not only for their daughter, Ari, but for everyone else as well.
Tuesday, September 22, 2009
They can all still use prayers and support. Please keep them in your prayers throughout the day. It is certainly a trial for their family and they can use all of the strength they can get.
Monday, September 21, 2009
Saturday, September 19, 2009
I spoke with Travis yesterday to get an update. Essentially, Arianna has stabilized. What that means is she isn't dying anymore. She still has serious health issues, and best case scenario is that she will have a very long stay in the hospital. She is currently responding to the chemo treatments, but still struggles with pain.
In addition to being diagnosed with LCH she also has the following medical conditions: 1) DI (Diabetes Insipidus*); 2) Metabolic Disorder. Her body does not break down proteins correctly; and 3) Her pituitary gland does not function properly. Although her other symptoms should not be related to LCH, the doctors are hoping that treating the LCH may improve her other health problems.
Travis and Haley continue to stay at Primary Children's Hospital with Arianna. They have had lots of visitors come and support them. Their other three children, Kaley, Taylor, and Alaina are living with Dona and Corey Shock in Mt. Pleasant, Utah. They are all enrolled in school and have been receiving alot of attention from their Aunt and Uncle. They are enjoying being in the country. I've heard Kaley (who is an exceptional house cleaner) has been helping Aunt Dona keep the kitchen clean. They are able to Skype their parents regularly, so that has helped them to keep in touch.
They are very grateful for the calls, blog comments, support, and prays from everyone. It has made a daunting situation much more bearable. I think their optimism has been an example for everyone. I am personally grateful to be a part of their lives and be blessed by their faith and stalwartness in pressing forward with a smile on their faces.
*Diabetes Insipidus (DI) is a disorder in which there is an abnormal increase in urine output, fluid intake and often thirst. It causes symptoms such as urinary frequency, nocturia (frequent awakening at night to urinate) or enuresis (involuntary urination during sleep or "bedwetting"). Urine output is increased because it is not concentrated normally. Consequently, instead of being a yellow color, the urine is pale, colorless or watery in appearance and the measured concentration (osmolality or specific gravity) is low.
Wednesday, September 16, 2009
Vicki and Jayden are here from Alaska it has made it more fun for us. Another bitter sweet.
Jayden is having seizures again every five to ten minutes I feel so bad for her and Vicki. If ever I start feeling sorry for our situation I think of Vicki and Jayden having to deal with what they. They are amazing. I think of Michael and Angie losing their baby without being able to say goodbye.
There are a couple of other kids that I have met here. One of which has been here since May and he is pretty much her to die. They are giving treatment to allow his death to be as painless as possible.
One baby who is twelve days old, was born with all of his organs outside of his body as well as his stomach and with no anus. He has recieved four surgeries in the first twelve days of his life. The hospital is not too bad now. The worst was when they were having her fast so that they could sedate her. Also we got her pick line in having to have eight different Iv's.
It was so cute when Jake came in and announced to the room, "Hey guys. You have to wake her up before you poke her." That is one of the saddest things that I have ever seen. Jake was about ready to physically take out a nurse. Travis' family has been so supportive. Jake, Amber, both of our Moms, Jaymi, and Dona for taking care of the kids, and Liz with helping communicate to everyone of what is happening with Arianna. I feel so sorry for Ari because her vains are so small and they cant find them. Even the IV team did not want to poke her.
Since last Sunday, we have had our good days and bad days. Yesterday, she had her second treatment of chemo and she seems to be doing pretty good. This is a good day. She has several illnesses that will effect her for the rest of her life. One of which is the DI and it is a roller coaster. We are still not sure what dosage to give her and when. That is yet to be determined. Her Kidneys are making too much protein and she has a fatal illness in the metabolic system that needs to be figured out. She is contuining to require blood transfusions for how much longer we do not know.
Also, just an FYI Alaina our second youngest had chicken pox all over her body the day we came into the hospital. That has only allowed us to see our children twice since Arianna has been here in the hospital. The first time was outside of the hospital in the garden section. Travis had surprised me so it was very emotional for me, on top of it I was not allowed to touch or hug Alaina because she had chicken pox and we could not risk getting them to Arianna.
At this point in time, if she were to get chicken pox it would be fatal to her as if she was not already in a deadly fatal position. The second time was also bitter sweet, because Arianna had been having a bad day. But we got to celebrate Taylors birthday and I was able to hold Laney. An extra bonus was that Laney was able to play with my hair wich I love and miss. Taylor had a good birthday thanks to Aunt Dona and Uncle Corey.
Thank goodness for both of them. They have made it so much easier on us and on our kids. We also have put Taylor and Kaley in school in Mt Pleasant and they love it! Since we have no clue of how long we would be here. I am so grateful for Skype. It was the first time that Ari smiled in a long time. We were able to talk to the kids and see them. It made Ari's day. She laughed and smiled. It brought tears to my eyes to see my children so happy to see one another. It was literally a moment that you could not put a price on.
But I wanted a lot of pictures for what ever the future might hold. When Titan passed away we all wished we had more pictures of him and I didn't want to be wishing the same thing. Then, when all of this started happening I thought maybe I was not paranoid. Maybe I don't get to keep her that long.
"Aunt Dona, I know Ari is getting better because her face is getting better."
Dona said that Alaina saw her when she looked really sick and like she was dying. Now that she is being treated, her face looks better than it did. It made Alaina happy to know she is getting better.
This was shared with me from Dona Shock.
What is Langerhans cell histiocytosis (LCH)?
Langerhans cell histiocytosis is a rare disorder that occurs when there are too many of a type of white blood cell called a Langerhans cell (named for a German scientist). These cells normally reside in the skin and help fight infections and destroy certain foreign substances in the body. In LCH, these cells accumulate on bones and other parts of the body, particularly the head and neck, causing a wide range of problems. LCH can also be found in the ribs, sternum, long bones of the arms and legs, vertebrae of the spine, and the pelvis. Although LCH can occur in people of all ages, a majority of cases occur in children under 10 years old.
What causes Langerhans cell histiocytosis?
The cause of Langerhans cell histocytosis is not entirely understood. Researchers are studying viral infections or environmental factors that could lead to this disorder. What are the symptoms of Langerhans cell histocytosis? LCH can result in symptoms in one or several parts of the body. Common symptoms include:
● Skin rash (Often diagnosed as cradle cap)
● Tenderness or pain originating from a bone (this explains all the pain she was in. We would always be asked were she was hurting and I would say, all over. She won't let me touch her any where. She also hasn't smiled in weeks. That was so odd because she is such a happy baby. You know the saying, “The squeaky wheel gets the grease. It is so true in this case. She handles her pain so well that every doctor was surprised when we would tell them she was in pain.
● Multiple ear infections(both her ears bursting)
● Excessive thirst and urination(her 2 gallons a day)
● Fever and night sweats(her 104 fever for 2 weeks)
● Weakness and failure to gain weight(her pictures above)
● She also has it in her organs, which is why her stomach is so huge. You can have LCH in one place or multiple places. Depending on where you have it and how severe will determine your survival rate. The odds are not in her favor.
When we sat down with Dr. Smith she told us that they thought she had Leukemia. They had an appointment up at Primary Children’s at 9 am to see Ari. She would have a bone marrow graft taken. On the way home, I was bawling. My Dad, my brother Zed, and Travis gave her a blessing. We packed our things immediately and then headed up to Mt. Pleasant.
We all started fasting and praying. We had about 500 people praying and fasting for us. I believe we had a miracle on our hands. I am so great full to all our friends and Family.The test came back negative. She had 2 blood transfusions that day. Her platelets were at 22, they are supposed to be at 156. This is when they told us about it maybe being LCH.
The next day we headed up to Primary Children’s Hospital to see if they could do a little more for her. When we arrived, we got the impression that they were wondering why were there. Looking at all the other kids there, I could totally understand why they felt that way. Ari is a beautiful baby and from the outside looked so healthy.
We talked to the kidney specialist and they helped us understand their idea better. They told us she is drinking so much water that there is no room for food. Therefore she is malnourished and needs to cut out water completely. Instead of just formula she can also have Pediasure or milk. I told him that when we take her off water she looks like she is going to die. He reassured me that it was normal for her to look like that and that she wouldn't die. This is what she looked like.
Later, one of our doctors said, “Imagine feeling more thirsty then you ever have then multiply that by ten and that was what she was feeling.” How sad. We were in Mt pleasant for a few days. Then we headed back to St George. She was still in lots of pain and had a fever which rose to 104. She also was not backing down on the water intake. And, of course, we were not sleeping. She would take about 15 to 20 min naps and wake up wanting water so bad.
She had another check up. I was jut telling our doctor how there was no change. She still has lots of pain, a fever, won't eat and only wants to drink. Then, as we were getting ready to leave, I said, “Oh, and she has a rash on her private area. I think is from her medicine because it’s a rectal rash.”
She looked at the area. As soon as she saw it her face, it didn't look so good. She was trying to not scare me, but she told me that it could be caused by a fever or a virus but usually it only occurs on the upper body. Of course, we had to get labs drawn. I texted Travis and said man you owe me big. It was his turn and he got out of it again. As I left, we set a appointment for Friday, which was in about 4 days.
On Thursday, on my way to Scouts the doctor’s receptionist called me. She was very upbeat and said, “We have an appointment for Arianna on Friday but we were wondering if we could see her today.” I told her I was doing something, but I would have my husband bring her down. She replied, “Actually we would like to talk both of you. I gulped. That is never something you want to hear.
This was her first time getting lab tests. They had to stick both arms, because her vein would move. Her face went from shock, to pain, and then to screaming. I thought it was awful. I remember saying, “Man, your job isn't very fun.”All her tests came back negative so they turned us over to Dr. Kerri Smith which is the top doctor in St. George.
The next test they wanted us to do was a urine test. She had to fast for 6 to 8 hours, then bring her pee down to the hospital. She cried all night taking only three 15 min naps. She also tried to drink her pee. It was an awful night. The test for that horrible night of course came back negative.
The next day she bumped herself up to 2 gallons of water and stopped eating. Then, she started not feeling so good. The doctors office called the next day to tell me all the test were negative and that they wanted her to have more test done. That, unfortunately, also required her to fast. I told them I would get back to them because she was so exhausted and not doing very great from the last one they did. My plan was to give her a few days to recover, then get more tests done. However, in about 2-3 days she had gotten so sick and was in so much pain I called and made another appointment for her.
When I spoke to the Doctor’s office I told them she had been running a fever for about 3 days and still had one. This time we brought Travis so he could do the honors of holding her down while they stabbed her and took blood. Lucky for him, my Mom showed up and took a turn. When they took her blood, we waited out in the hall. This is kind of embarrassing, but their front door sounds like a baby screaming. When I heard it I was started bawling remembering how awful it was the first time. When my Mom came out she said that she did great. Okay, yes, I felt silly.
At the office, they told me that both her ear drums had burst. I knew she was in pain, but she didn't even scream or anything so the ear drum thing surprised me Our doctor had been talking to a specialist up at Primary's and their idea was that it was her kidneys. They thought her kidneys had been flushed and we needed to take her off water completely and put her on a formula. We tried this one night and it was awful.
SCABS ON HER HEAD
Ari's first sign of LCH was her scabs on her head. I tried about 8 different things to try to get it to go away. Some things would help it for a little while but overall my efforts did little good. Some of her scabs were the size of pennies. They completely covered her head. They were much worse behind the ears and quite often they would bleed. But overall, I was surprised by how little they bothered her.
EXCESSIVE THIRST FOR WATER
The next sign was her excessive need for water. I noticed this I purchasing a large amount of Powerade that was on sale. The kids found it and pretty much lived on it for 2 or 3 days. We have learned the Powerade didn't start anything, but it could have filled her need for sodium and when she didn't have it she tried to feed her craving with water.
The first night she woke me up for a drink was July 3rd. I didn't think much of it. By the end of the week, she was drinking a quart jar of water at night. I still was of the mind set the more water the better. At least for myself, I feel better when I get more water in a day. I now know, you definitely can have too much of a good thing. She slowly started drinking more and more water.
Then, we started our extensive search for the most absorbent diapers we could find. We ended up trying about 6 different brands. Kirkland and Pampers Ultra Dry were comparable, but the Pampers gave her rash. So the winner was Kirkland. We still spent about $120 in diapers a month, and we were playing a little game I like to call Ring Around The Pee. This is how you play. We were going through about 6-8 diapers a night. Once we would get peed on we would change the diaper and move to another part of the bed. We did this about 4 times a night. Believe me, there is no better feeling then waking up all nice and wet and knowing it is pee. We were a little bit sleep deprived when she got to were she was drinking about 1 1/2 gallons a day.
SYMPTOMS OF DIABETES
My first thought was that she had Diabetes. She had some signs which included: not liking sweets, being very thirsty at night, and a couple others. So we went to Wal-mart and purchased a Ketones test to test her urine. It came back negative. I took her into Dixie Pediatrics on August 4th. The first thing they asked me was, “Is she sick?” I said, “Actually, she is a happy, healthy baby that just drinks a ton and has scabs on her head.”
They looked at her and told me her the scabs on her head were cradle cap. Or cradle crap is what we call it. They told me to just use olive oil at night and comb it out in the morning. Then use head and shoulders and comb it out again. This helped it for a few days. Then it quit working and it actually got worse. Then they told me some times kids will drink a ton of water but we will test her blood to see if it is Diabetes.
Tuesday, September 15, 2009
The visitors are related to both families. Vicki and Travis, of course, are brother and sister. Their spouses Ron and Haley are 1st cousins. Their moms are sisters.
Amber Lane, (Ari's Aunt married to Travis' brother Jake) with Jaden.
Travis, his Mom, and his brother Jake.
Jaymi, Travis' sister, with her son Krew visiting Jaden. Sam Taylor (Vicki's son) is at the bottom.
(l to r) Mina Lane, (Travis' Mom)Danne Morris, (Haley and Ron's Aunt), Jaden, Penny Taylor (Ron's Mom), Lori Bradshaw (Haley's Mom), Becky Taylor (Haley's cousin), and Amber (Haley's cousin).
Monday, September 14, 2009
This was posted as a comment, but it was so good I wanted to put in the main blog.
In her blog, Kayla said, "I don't know where in the family line the gene originates (perhaps my Aunt Janyce could help us with that), but there is something about being a Lane that means being optimistic when the chips are down, keeping it together and pulling through."
Kayla, you are so right so I thought I would comment on where we get our strength. Of course, ultimately it is because of our faith and knowledge that the Savior lives and that he did indeed die for us and because of his strength we can be strong. I believe our strength came from both the Lanes and the Tenneys.
When I used to go to the Tenney Reunions (most of you kids reading this are too young to have been to many Tenney reunions), I would sometimes get frustrated during the testimony meeting because everybody would bear their testimony about the great heritage we had from our Tenney ancestors. Our Wear heritage from Grandma (Wear) Tenney was rarely mentioned even though she was there. I sometimes wondered how that made her feel.
I do not diminish the heritage we received from our Lane ancestors. We all know the strength Grandpa Lane always exhibited when anyone needed comfort or assistance. He was the first to respond. His example of service to anyone in need regardless of their social status has been a model in my life and I love and appreciate him for it. Grandma (Tenney) Lane was also a tower of strength when we needed her.
Again most of you are too young to remember when Uncle Jake was killed. My mother (Grandma Lane) was such an example of faith in action to all of us. She knew where he was and perhaps she even knew why he had to go at that time (almost 24 years old leaving Justin 18 mos and Rachel 6 mos). During the weeks (I think it was three but someone else will have to confirm that) between when he was electrocuted and when he died she never wavered in her example of caring about the needs of her family at that time to give them strength. She never wavered in her example of faith and knowledge that the Gospel was true and this was all for a purpose and we would all be together again.
At the time, I was uplifted by my Mother and I knew it was alright because she knew it was alright. I don't mean to imply that I didn't have a testimony of my own but Mother's attitude and example sure helped.
Travis and Haley, I know that your strength and attitudes in this crisis will be remembered by your children long into the future. I know that because Mother's example was with me every single day after Jimmy was diagnosed with cancer. Her example helped me step up to the plate and be strong for my children and grand children.
So where do we Lanes get our strength? I think it comes from all our ancestors. I think strong people married strong people and each time created a bigger strand of strength. Certainly for me I can find examples in my Lane & Crawford ancestors and I can find examples in my Tenney and Wear lines. You younger generations who have added ancestral lines from your mom or dad who married into the Lane family can no doubt find it in your mother's or your father's family lines. The gospel is true. We do have a Father in Heaven. Jesus Christ is our Savior. The Holy Ghost can bring peace and solace to our souls.
With my love,
Sunday, September 13, 2009
Travis' first cousin
I came home from church and looked up my google reader - first read Vicki's post about the family reunion at PCH, then your post on Arianna's blog and I was crying... So sad for Haley and Travis, yet happy (that sounds horrible - hope you understand) that the timing of Jaden's difficulty lines up so they can all be there together to support each other...
Then thinking about Travis' positive attitude - which in some ways reminds me of my dad who never lets anything stop him for long... I thought about your dad and all he has accomplished and realized he has this same trait of smiling in adversity and moving forward... and then I couldn't help myself, I wrote something about it. If anyone in your family would understand the compulsion to write - it would be you - you can pass it on to Travis if you feel it would be helpful .
Please know we are praying for all of you - if anyone can make it through this - it would be your Lane family. Hang in there and know you all are loved.
Words and Music by: Janice Kapp Perry b.1938 (c) 1984
A Child's Prayer
And do you hear and answer every child's prayer?
Some say that Heaven is far away,
But I feel it close around me as I pray.
Heavenly Father, I remember now
Something that Jesus told disciples long ago:
"Suffer the children to come to me."
Father in prayer I'm coming now to thee.
Pray, he is there; Speak he is listening.
You are his child; His love now surrounds you.
He hears your prayer; He loves the children.
Of such is the kingdom the kingdom of heaven
Update on Jaden:
We are headed to SLC to Primary. The Neurologists tried treating her with 2 different prescriptions that they called in for her yesterday. They gave her 2 drugs that they would usually give to her first thing when she gets to the hospital. They were hopeful that it would be enough to stop her seizures.
Unfortunately, it didn't work and in order to give her more she has to have blood levels drawn. It did slow her seizures down to 5 sec. seizures. She is having them every 5-15 min. Yesterday they were 1 1/2 min. long and still every 5-15 min. So at least they are very short seizures now. She has to be hospitalized to be given stronger meds to stop her seizures.
They wanted me to take her to the Ketchikan Hospital. I told them I didn't want to because she would be transported to Seattle. Ketchikan doesn't have an inhouse lab so they can't treat her with seizure meds. They don't have the ability to test her blood levels quick enough which is why they transported her last time to Seattle. That was such a nightmare last time. I don't want to go through that again, so we are leaving for Salt Lake in the morning.
Update on Arianna:
Her kidney's, pituitary gland, and heart are improving. Unfortunately, the liver and spleen are getting worse. They are very enlarged and still struggling. She's back to getting blood and platelet transfusions everyday for the last two days. Her sodium level keeps spiking up and down too. The metabolic problem is still unsolved. They haven't figured that out.
I just got off the phone with Travis. He is so positive despite the situation. He said the Dr's. wanted him and Haley to get counseling. Travis asked why. They said because parents need to be prepared in situations like this. We don't want them to blame themselves or the Dr's if things get worse. Travis said, oh well in that case we are fine. We don't need counseling. The Dr. said, well that's what were concerned about. We don't think you guys realize the severity of Arianna's situation. You are both always so happy and Travis you are always cracking jokes and making all the nurses and Dr's. laugh.
Travis said, If you are asking me if I understand that my daughter is fighting all odds of living, yes we understand that, but do you understand that we have two choices. 1) be pessimistic and sad or 2) be optimistic and happy. Which one do think is going to be the best for Arianna.....to see us crying and upset or to see us happy. The Dr. said well that makes me feel better. We were just afraid that you were too positive because you didn't understand how bad off she is. We've just never met anyone this upbeat in a situation like this. Travis said, well you've just met Travis and Haley Lane.
That's what I love about Travis. He is always positive. He lights the room up when he walks in. Everyone always wants to be in his presence. One of the nurses told him after the Dr. left that the nurses all "fight" over who gets Arianna's room.
Saturday, September 12, 2009
"How has Ari been doing?" I called Travis directly tonight. I hadn't heard any news by 6:30 this evening. Usually the email or texts are buzzing with updates. I had an especially busy day, so I didn't do my follow up as early as I would have liked. However, I crossed my fingers and hoped that no news was good news. Travis who is famously optimistic replied to me, "Well, she's in critical condition. Her spleen and liver have taken about as much damage as they can handle. Her platelets are low. Her stomach is swollen and we can see the outline of her liver. She's going to get another blood transfusion tonight. But, she's looking good." He had his usual happy, unwavering spirit that is familiar to anyone who knows Travis.
He further explained that they have not been able to make a diagnosis regarding her “other” medical condition that appears to be completely separate from LCH. As you may recall, she is also suffering from a metabolic condition which does not allow her to metabolize proteins. In an effort to discover a possible diagnosis, her doctors discussed her case in an international medical forum. The doctors were not able to come up with an answer as her tests don’t indicate anything that they have seen. They told Travis that they do believe it is fatal. Meaning, if they can’t find a way to treat it, it will cause her death.
I had a good talk with Travis. He’s as happy as I’ve ever heard him. I know that may seem strange for someone in his situation, but if you know Travis at all, you know he has an unusual optimism unseen in very, very few people. I believe if he would have lived during the Holocaust and been put in a Concentration camp he would have organized a self-improvement sector. He would have made friends with the guards and invited them to his motivational seminars. If they asked him to dig a ditch, he would have made an irrigation canal. He has no prejudice or malice towards any man. And, his faith and belief in his Heavenly Father’s plan is unshakeable. I could say the same for Haley.
I think my point is even more illustrated in a story Travis told me tonight. He said that the doctors came in to talk to him and Haley. They suggested that they get counseling for their situation. Travis and Haley looked and each other and said, “Oh, we’re fine. We don’t need counseling. It would just be a waste of time.”
After continued prodding from the doctors for them to get counseling, they finally said, “Hey, most couples in this situation are blaming each other; blaming the doctors; angry, confused, and it tears them apart. We don’t believe you understand the gravity of your situation.”
Travis said, “We understand. We know her situation is serious. We know full well it is a miracle she is still here. We know she may not make it.”
The doctor said, “It’s just that we have seen you around the hospital. You seem to have an extra stride in your step. You seem happy. You and Haley are visiting with the nurses, smiling, and happy. We just don’t want you to have too much false hope.”
“Well, you’ve just met Travis and Haley Lane. That’s how we are,” Travis responded.
I know that they may seem like they are in denial, but truly Travis and Haley are two of the most happy-go-lucky people you may ever meet. Furthermore, I know that Haley’s faith is so strong and she has such a faith in her Father-in-Heaven that she puts complete trust in the hand of the Lord. I want you to think about someone, anyone you know that never says anything bad about anybody. I only know one person—and that’s Haley. She is pure in heart, guileless, and full of faith. Where ever this trial is taking Travis and Haley, they are the kind of people that will end up on higher ground when it is over.
I asked Travis, “Do you have anything specific that you want people to pray for?” He answered, “I don’t know what to tell people to pray for. I hope for peace. I know there is purpose in all of this. I can feel the love, support, and prayers from everyone.”
I told him I wanted to update the blog as so many people are concerned about how she is doing. I said, “Is there anything you want anyone to know?” He said, “Let everyone know that if they come and visit us they can kill two birds with one stone.”
“What do you mean?” I said.
“Vicki and Jaden will be checking in to Primary Children’s tomorrow afternoon. Her seizures have gotten worse and they want her to get here as soon as possible. So the good news is, we’ll all get to be together.” I knew Jaden’s seizures were acting up again, but I didn’t know it had come to this. I know it may sound un-orthodox, but we actually laughed. I know Vicki would be laughing with us. The irony that two of my siblings would be in Salt Lake City Primary Children’s Hospital with two of my nieces facing serious medical conditions makes for a bad soap opera story line. So, we just laughed.
Over twenty years ago, most of the older siblings in my family were working in the pizza parlor in Page. We complained about how much we had to work. My Dad always said, “Hey, you kids should be glad you get to spend so much time together. A lot of families don’t get to see each other this much.” As kids, it didn’t make much sense. But as an adult, you can appreciate time spent together whether it’s work or play. It’s what you make out of it.
I guess if the Jay and Mina Lane family has some good family values they passed on they would be: Learning to be happy no matter how bad the situation. In fact, sometimes the worse the situation is, the happier we can be. They would also include being happy because we’re together. And they would include having faith in the Lord and putting your trust in him.
Travis and Haley are good people. It’s obvious by how many people we see visit this blog each day. It’s obvious in all of the emails, phone calls, letters, texts, that have been full of love and support.
I know Travis didn’t ask for anything specific to be prayed about, but I would ask that everyone pray for them to feel the Lord’s hand in their trial; to bless Ari to make it through this trial feeling love, support, and as little pain as possible. Pray for Travis and Haley to remain strong, happy, and peaceful. To make their marriage stronger as they lean on each other and know that their companionship is one of eternity which with outlast the adversity of mortality. May they always feel the light of Ari’s strong spirit in their family. Pray for them always as our prayers may be the best we can do to offer support in their time of trial.
Vicki has a blog for Jaden. It is: http://www.jadensdailyjourney.blogspot.com/ or you can visit her family blog at: http://alaskantaylors.blogspot.com/
Friday, September 11, 2009
The condition that she has is obviously a chronic Illness. LCH is not a cancer but it is treated as a cancer and it acts like a cancer. In some cases it is in our favor and in most cases it is not in our favor. There are single symptoms of LCH and there are multi symptoms. Arianna has the multiple symptom's. The disease is in her brain, liver, spleen, kidneys, tissues and bones. The pain can be and is very severe at times, it was explained to me that the pain in her bones are similar to having a cavity drilled out without any Novocaine. The pain in her tissues are such as a bee sting very irritable and itchy. The pain in her organs are similar to a cut that has been infected with the swelling sensation.
She has completely damaged her pituitary gland, what has happened there is that her brain is telling her body that she is thirsty (and she is) however her brain is also telling her kidneys that she does not need the water to not absorb it or concentrate the fluid and just pass it through the bladder. That is sad to know because at times before we were not allowing her to drink for 8 hours. (under St. George Doctors instructions) The Doctor here told me that her thirst is that of being out in a hot dessert for hours without water and not being able to have it. So when she would drink it, it would only soothe it temporarily thus explaining 2 to 3 gallons a day. We do believe we have that under control now. She is taking a medication called D.D.A.V.P. That's the acronym I do not know what it stands for.
It appears that this will be a life time of medication. Apparently the damage to her pituitary gland is permanent. Her immune system is shot right now. She is susceptible to anything and everything. They have us in a room with double doors requiring washing and sanitizing twice to be able to get to her.
I think the best way to know about LCH is to go to this website http://www.cancerbackup.org.uk/Cancertype/Childrenscancers/Typesofchildrenscancers/Langerhanscellhistiocytosis
The question I have and many have is: Will she make it? According to science and medicine the odds are definitely against her. Primary Children has treated for LCH and this is one of the worse cases that they have had if not the worse. The fact is that PCH has loss patients to LCH. Due to the aggressive spreading of the disease its not helping at all. Also the stage at which she is at is very late in the game.
However, I do believe she is going to make it and this is why. She has fought so hard to remain alive. She should have passed this last week but she hasn't. I also know that the many prayers and fasting for her has helped with her pain and has helped her continue to make it this far. It has been a while since I have seen the power of prayer to this level to where it is an obvious intervention from God.
I want to thank everyone that has taken part in this. It is always a great experience to be a part of a miracle from God. I am not one to get spiritual or profess a divine intervention simply because I hold those experiences dear and sacred. However, I want to let everyone know that there is no question in my mind or soul that the reason she has had success to this point is because of all of the fasting and prayers for her. It has been nothing short of a miracle.
She is not out of the woods yet. Just like last night, she took a terrible turn for the worse. We went a day without a blood transfusion and thought, "This is great she is getting better." But she got a terrible fever, her heart rate became very high and the pain increased to a rate that would not allow her to sleep. This was all after she had received her pain medication. After we had done another blood test we saw that her Red blood, white bloods cells and her platelets had dropped to a life threatening level requiring an immediate blood transfusion.
Not to mention we are dealing with a ROID RAGE baby. They have her on steroids and it shows in her temper and in her appetite. She will hit Haley square in the face just for looking at her wrong. (It's actually kind of cute.) When her food arrives those are the happiest moments of the day for her.
Needless to say, we are fighting a war here and some days we win the battle and some days we don't. But over all we are winning the war at this point. It is obvious that according to medicine and science the odds are against her. But I do know that the power of prayer has been the factor of success.
I have just given you the very, very watered-down Readers Digest version of the circumstances. Again, thank you to everyone, and please keep praying.
With much love,
Thursday, September 10, 2009
Tomorrow they are expecting to get the results back on her metabolic condition. So far she is responding well to low-dose chemo. Pray for a lifetime of laughter and giggles for Ari. Keep praying! The fight is not over yet.
I have received so much positive feedback and feelings of support to forward to Travis and Haley. Please feel free to comment. They check in on the blog and I am sure they would love to hear from you. Anyone who has been in a health crisis of any kind knows how important the support can be.
Thank you to those who have already commented on the blog. And as always, please remember to pray for Ari. Her survival so far truly is a miracle. I believe that the prayers of the masses are helping.
Elizabeth (Lane) Hibbard
Wednesday, September 9th.
I took pictures of Ari today as the nurse was working on her. She looks so much better. She's more alert and can even gave a little smile. Today she had enough energy and alertness to kiss her daddy.
We are so happy with her progress. It's the first day she hasn't had to have a transfusion. They did find another problem today, but we will
not know the results for a few days. You can't believe how good she has been with all the Drs. and nurses. She does hate to see them come in and lets them know that. The other day she was so cute, the nurse came in to take blood and with her big blue eyes she just turned and looked at her and just closed her eyes as if to say, "Here's my arm, just take it." She is so cute. I can't tell you how good she has been through out all of this. She has been poked, stabbed so many times and still maintains her cheerful personality.
Wednesday, September 9, 2009
Pictured from (l to r): Kaley (Travis/Haley's daughter); Ashley Shock (Dona's daughter); Alaina Lane (Travis/Haley's daughter); and Corey Shock (Dona's husband).
Travis and Haley's kids have been at Dona's (Travis' sister) house in Mt. Pleasant while Ari is in Salt Lake City. It is about an hour and 45 minutes away from the hospital. Travis' daughter, Alaina, contracted chickenpox this last week.
Dona and her husband, Corey, took the kids up to visit. Obviously, as a precaution, they were not able to hold, hug, or touch Alaina. It was very sad, as she is only 4 years old and is having a hard time understanding why she can't hug Mom and Dad. Heartbroken, Alaina, sat on her Uncle Corey's lap for consolation. Ashley, (Dona's daughter, age 14) tried to explain to her why Ari is so sick and why Alaina could make her even sicker. She said, "Ari is sick. It's like her body is playing football. Ari's football players are trying to win, but the other team is winning right now. But, the game isn't over."
The next morning after returning to Mt. Pleasant, Alaina's "pox-spots" were starting to clear up. She said to her Aunt Dona, "Look! My spots are gone! My football players are tougher than Ari's."
Tuesday, September 8, 2009