Monday, December 21, 2009
I spend about 80% of my life in bed these days. Yes it has been great for my figure--if you like that soft round look. The word you hear out of Ari's mouth the most is, "Bed." Most the time she is yelling it at me. Her facial expressions get pretty funny. I feel like I'm the kid and she is the parent yelling at me to, "Get back in bed young lady!) My arm is her pillow and she can almost not sleep without it. She has been sick, so the other day I let her sleep as long as she needed. She slept for 15 hours straight.
I used to be frustrated at not being able to get anything done. Not anymore. I feel that I treasure every moment holding her and loving on her. My perspective changed one day after complaining to Travis. I told him, "I have 15 seconds of time what should I do with it?"
He replied,"Hold me." He told me,"Just think if she only lives a month or so you will be so glad for the time together."
Leave it to him to change my life. He teaches me every day. The biggest thought I walked away with after our conversation was, "I don't want to have any regrets!" Not just with Ari but with all my kids and Travis. You never know when your time is up--or theirs.
So I now have to priorities a lot. Laying in bed with Ari is at the top of my list.
Tuesday, November 17, 2009
Ari's Primary Children's appointment always takes about 8 hours. Amber had the day off so she came to visit with us. It was so fun to see her. It was actually a fun appointment. I was so hopeful that we would not need blood this time. She gets quite a bit of energy for a few days after getting blood.
The clinic gave her this hat. She looks so cute.
As soon as she got in the car she was out. It had been quite a long day.
Sunday, November 15, 2009
Thursday, October 22, 2009
I am truly amazed at how considerate, thoughtful, and serving they are to others even when they are going through so much. Shortly after the party, they had to take Ari to the hospital in St. George to have her pick line flushed. It wasn't an emergency or anything, but it had to be done. A few hours later they returned with food for their kids. They are taking Ari to Primary Children's for a chemo treatment on Friday.
Monday, October 19, 2009
I spoke with Travis this evening. He said that everything is still the same: still in the hospital, still running tests, and still having little ups and downs. She does have a lesion on her brain. They are trying to figure out if any of the treatment has stopped the growth. It's a "wait and see" game.
Sunday, October 18, 2009
Saturday, October 17, 2009
We all know Ari’s sickness has been a roller coaster of ups and downs; good and bad. Good health for a couple of days and then unexpected and devastating. Even to the point of near-death as her body has collapsed from the disease. Most of it has had to do with her condition of Diabetes Insipidus, which has caused her sodium levels to rise and fall. She has become extremely dehydrated and in a matter of minutes she can collapse, have convulsions, and minor comas completely take over her physical body.
She has also experienced a large amount of pain over this last week. Pain, that oxycodine and morphine could not alleviate. The doctors don’t know exactly where the pain came from or if it will return. Her blood levels have also been very weak, requiring blood transfusions. The most consistent symptom has been a fever on a daily basis. Sometimes she has two or three fevers a day, but without fail, at least one a day. The hope is that she has some kind of viral infection that is causing these symptoms.
However, they have run test after test this week, and are not finding any type of virus or infection. As a result, the doctors believe it is the LCH that is causing her symptoms. It is very important we find out. According to the Oncology doctor, if it is the LCH we must aggressively change what we are doing because it isn’t enough. If we don’t, she may rapidly decline. Similar case studies in the past have not been favorable. (You can translate that for yourself.)
Unfortunately, if it is the LCH that is causing all of these symptoms including: fever and pain. Then, the road ahead will be very, very challenging. They are going to start all of the tests, surgeries, biopsies, cat scans, and x-rays, etc. There are many and they are painful and discomforting. Mom, Jaymi, Lori, Jake, and Amber have witnessed and helped with the tests firsthand.
If it is LCH, that is causing it, the therapy will be much more aggressive. The chemo will be more potent, causing riskier and more painful side effects. She is already a radiation bomb ready to go off! According to the doctor, because she is in her sixth week of chemo treatment, she should not be experiencing these symptoms if she is in remission. Unfortunately, with LCH, if a patient doesn’t enter soon, the chances of survival are less likely.
On the hand, we are hoping that is a virus or an infection. If it is, we get to continue with antibiotics and intensive care and she will be fine—figuratively speaking. According to science and medicine, in my opinion, the diagnosis is pointing to LCH. But that is not what we want. Haley and I are going to start a fast. We are not sure what to fast for. My first thought was to fast that she has an infection or a virus. (I never thought I would fast for that reason.)
If anyone has any inspiration intuition, please share. I also think it would be great to fast for Amber and her situation. No, not her marriage to Jake . She has been afflicted with passing kidney stones and it is extremely painful.
This situation reminds me of tough man tournaments. You know you have to step into the ring and fight, but you don’t know who you are going to fight. It could be the 6’ 6” 250 pounder with years of fighting, or it could be the 150 pounder who’s friends talked him into entering the competition. So yes, I am fearful of who our opponent is. I feel like I am sitting in the locker room waiting for my opponents name to be drawn. I guess this is a moment in life you hope you have trained well for. As I’m sitting here typing this into my phone, I am wondering if I am prepared to fight the 6’ 6” opponent. Is my faith, patience, charity, belief, and hope sufficient? Have I honored my Priesthood and am I worthy to commune on a Divine level? What do I know about the Atonement? Can I access it on a level sufficient to help Arianna bear what may be ahead of her? Is my relationship with God and Christ enough to call upon the powers of Heaven for comfort and support for Arianna to endure what challenge may come.
However, my mind cannot rest from the thought of what if Arianna does not make it? Was I as her father prepared spiritually, physically, emotionally, and intellectually enough to do all I could to help her? And, did I give her the love and care that she needed while she lived her short two years on this earth? I guess those are good questions regardless Arianna’s situation. Questions I should ask myself about Haley, Kaley, Taylor, and Laney. And, all of the people I love.
I want to back up a little and explain to those, who perhaps don’t know how we ended up back in the hospital with Ari. After Kaley's birthday, we stayed in Mt. Pleasant until her Monday appointment. We got to her appointment at 11 and everything went pretty smooth. She received her chemo and a transfusion.
We left at about 5:40. At about 6:00, she had a hard time breathing. Her breathing was like someone getting ready to have a baby. She also got a fever. She would grab a hold of me with her little fist and scream out in pain. If you know her, you know that she never cries or screams even when she is a ton of pain. We gave her some oxycodine and it didn't ease the pain at all.
We called Primary Children’s and they told us that even though we were only 30 miles away to just go to the nearest emergency room. We ended up at Alta Hospital. They checked her vitals, which weren't good. But, they were pretty much at a loss on what to do about this “black hole” of a baby. They suggested we put her in an ambulance and send her up to Primary Children’s. They said that it would take about 15 minutes to get their ambulance ready. This seemed crazy to me. Or, they said we could try taking her ourselves. That is what we did.
Thankfully, Jeremy came and got our other kids. We went about 90 miles an hour and made it in about 15 minutes. When we got there, they did about 20 different tests and x-rays. Of course, everything came back negative. They gave her morphine for her pain. It helped a little. At one point her heart rate was 204. Now we are back to living at the hospital. Her condition is such a mystery.
I think Travis is amazing. He is definitely a super hero to me. We really do have so much support. Today Ammon and Hayley drove all the way up to see us. They brought me some much needed stuff and saved me a trip. They also brought Ari some really cute Dora stuff. On the movie they bought her, the princess’ name is Arianna. I don't even think they knew that when they got it. They also brought some stuff for her to color. She has been into crafts lately. She loves painting. Another thing she loves is a song called “10 Snowmen Learn to Read.” It is on a web site called Starfall. I love this website. We finally taught her how to push the button to play the song so we don’t have to do it every 10 seconds, hours on end. She holds her fingers up and waves them back and forth and laughs, it is so cute.
Josh and Joni Jones have also brought in delicious meals to us. We enjoy seeing and visiting them. They are great friends. The Kids are enjoying being at Aunt Bobbi's. She has made it quite fun for them. I seriously don't know what we would do without all their aunts and uncles. Thanks so much to everyone.
Friday, October 16, 2009
Knowing how weak and fragile little Arianna is, we miss the obvious that her life has been one of great significance. In the past few months, her story has touched hundreds if not thousands of people. Her purpose has brought about change in the lives of so many. Like the ripple in a pond, she gentle touches the shoulder of everyone who visits her blog and reads her story. Even now, as you read these words, there is a sweet spirit that surrounds you, softens your heart, and inspires you to be a better person. It's a miracle. This little girl, who has no idea that so many people are following her story. Is changing the world, one heart at a time. Hasn't she already changed your heart?
It is evident that her immediate family has been blessed by her spirit, her strength, and her power. You can read the words of her parents and their inspiring stories on this blog. I want to share some links to others who have been inspired by Ari's story and that in turn, have inspired me. How much joy my heart feels knowing she is, in a sense, serving a mission for the Lord by changing people's lives. I hope these inspire you too:
Kayla Lamoreaux (Travis' cousin) Wondering
Vicki Lane Taylor (Travis' sister) Do You Ever Wonder?
Amber Coates Lane (Travis' sister-in-law) Travis and Haley's Inspiration
This is not specifically about Ari, but it certainly is worth reading and well spoken:
Press On Here's a preview of that article:
There is one thing the Lord expects of us no matter our difficulties and sorrows: He expects us to press on.
I have lived long enough to experience firsthand many of the challenges of life. I have known exceptional people who have endured severe trials while others, at least on the surface, seem to have lived charmed lives.
Often those who struggle with adversity ask the question “Why did this happen to me?” They spend sleepless nights wondering why they feel so lonely, sick, discouraged, oppressed, or brokenhearted.
The question “Why me?” can be a difficult one to answer and often leads to frustration and despair. There is a better question to ask ourselves. That question is “What could I learn from this experience?”
The way we answer that question may determine the quality of our lives not only on this earth but also in the eternities to come. Though our trials are diverse, there is one thing the Lord expects of us no matter our difficulties and sorrows: He expects us to press on.
Continued at: Press On
Thursday, October 15, 2009
I wonder what this financial challenge and Ari’s challenge is for what purpose? I often ponder searching for an answer but find myself confused and question the power of God. But then I step back and realize that these experiences are for my own good and I realize that I have learned so much from them, my relationship with my wife and kids have grown, my gratitude for life and health have increased, my love for family and appreciation for those relationships have deeply awaken a better understanding of God’s plan. I then realize that these experiences are a great blessing from God and I feel privileged for the opportunity that he has allowed me to take part of them. I anxiously gather everything I feel like I have learned and with a joyful and grateful attitude I try to go back out there and make the best of the situation. Knowing, with no doubt that God knows and understands and I find comfort that God is in charge orchestrating such a divine occasion. I then feel embarrassed for doubting the power of God and the atonement. I then realize my role is simple. It’s the basics, have charity, have faith, have a good attitude, continue to learn, continue to be grateful, and most important endure the trial and never give up hope.
Dad I really want to thank you for all you’re doing to help with such a business disaster right now. Your handling matters that make me cringe, I am so grateful for you and you may not know how much you’re helping me right now thank you.
(Mom) thank you for the many endless nights of support and the miles that we physically put in together in the beginning of Ari’s journey and thank you for supporting Dad with the business challenges we have right now.
(Dona) thank you so much for taking care of our kids and getting them in school. I wish we would have left them in, but I guess…..What do they say about hindsight?
(Liz) thank you for the blog it has allowed a lot of people to remain updated. You not only have kept them updated but with your gift of writing you’ve allowed it to be inspirational and entertaining.
(Vicki) thank you for your example of positivity and endurance. You’ve always demonstrated those two attributes our whole lives. You’ve always been an example to me of being positive and never giving up.
(Bobbi) thank you for your support even showing up at the hospital and no one was there. LOL. Thank you for taking the kids, coming and getting them from Alta emergency room and for caring for them like their own mother.
(Jaymi) thank you for the many endless nights at the hospital. For all the many trips you have made to haul kids.
(Taylor) thank you for being you. I don’t know if you know but Ari’s in the hospital. LOL (“when the freak did we get ice-cream?”) thank you Taylor for letting me tease and make fun of you!
(Brian) thank you for your silent support when I speak with you I feel such a love and concern not only for Ari but for me and Haley as well.
(Jake) thank you for many endless nights at the hospital of so much support and sleeping on couches and always physically being here for support.
(Amber) thank you for so many dinners you have brought. Your food is so good. Your support to Haley has been very helpful. You’ve always just shown up out of the blue just waiting to see if there is anything you can help with.
(Kim) thank you for dressing up Kaylor and sending us pictures of her. She is beautiful.
(Lorri) thank you so much for all you have done there is no doubt that if there is anyone that Haley and I can rely on to receive any kind of help from it is you. You are so non judgemental and your endlessly supportive of anything we do, willing to endure with a humble and grateful attitude. I am also grateful for the strength that Haley gets from you.
(Haley) I don’t have words to express my gratitude for you. Your example of faith and humility are not human. You never give up, you’re always grateful. I am so impressed by the way you’re in tuned to what Arianna needs medically and emotionally. The way you took charge the other day when Arianna was vomiting and having convulsions. You gave orders to the doctors and it was your mother’s intuition that saved Arianna. I find it very important to give gratitude to people and God. I feel like when I recognize my blessings and give thanks for them for some reason burdens are alleviated.
Tuesday, October 13, 2009
She has thrown up went into a small convulsion and she is now passed out. Her sodium is so high its life threatening. If its like past times she will pull out.
Tuesday, October 13, 9:20 am
If not, she won't make it. The good thing is she is out and incoherent (finally resting).
Tuesday, October 13, 9:27 am
Its so sad but also relieving. Because she appears to finally be out of pain. She looks dead but the monitors indicate otherwise.
Tuesday, October 13, 10:20 am
She is awake. She came out of it with a very large hunger. I am so impressed with Haley, she was telling the doctors what we need to do and they followed orders.
From Travis at 10:58 pm on Monday, October 12
They just gave her morphine for the pain. The pain is at least 5x more than I've seen her go through.
From Vicki at 11:16 pm on Monday, October 12
They had to transport Ari to Primary Children's. Alto said it was too complicated for them to handle. Travis said she is in so much pain that they finally gave her morphine. And they are x-raying her stomach because that's where they think the pain is coming from.
From Travis at 11:27 pm on Monday, October 12
The morphine doesn't seem to help much.
Monday, October 12, 2009
By Haley Lane
I should have known my first testimony meeting after coming home from the hospital would be emotional. The Bradshaw side of me just bawls like a baby. No matter what, when we are all together, if my Dad starts crying we all go down. It is pretty bad. I can never say all I want to, when I start out crying.
Today I felt that I had to get up and publicly thank my Father in Heaven for his love and letting us keep our little girl. I truly know I am loved. I am so grateful for the Savior and The Atonement. I am grateful for the knowledge that He suffered all my pains, not just the pains of sin and repentance but also pains of sorrow and trials. He truly does make our burdens lighter. He will never leave us. I am grateful for my trials because I know they make my marriage stronger, my family stronger, and my relationship with my Heavenly Father and Savior stronger.
I think there are two types of trials: one that bring you closer to Christ; and ones that you let take you away. Hopefully, we can take every trial we have as an opportunity to bring us closer to Christ.
Jay also got up and bore his testimony. Like my Dad, he has a really strong testimony. One thing he said that I completely agree with, is knowing how bad you can miss Sacrament meeting when you don't have the opportunity to go. Jay said that in Africa they called for permission to administer their own sacrament because there was no organized branch or ward in their area. I feel the same way. I love gong to church. I always have. I feel that it renews me and helps me get through life. I am so grateful for the gospel and being able to take the Sacrament. After not being able to go to church, for whatever reason I start to crave it so bad. It is like a big part of me is missing.
Corey also got up and bore his testimony. He got my tears falling all over again. He is an amazing person. I am so grateful for all my family and blessings. I am so grateful for each of my beautiful kids. The scripture about having joy in your posterity is so true. My kids really do fill my life with joy. I am so grateful for Travis. I try to Thank Heavenly Father for him every day. My hope is that if I am grateful for the most amazing husband, Father, and best friend anyone could ever have, I will deserve to keep him forever. My goal in being a good wife is to treat him half as good as he treats me. I love him so much. Like I always say, "I really am spoiled."
Thursday, October 8, 2009
Written by Haley Lane
Monday was our appointment at Primary's hospital. Ari usually gets her chemo and maybe a blood transfusion. About 45 min from the hospital Ari vomited this dark brown stuff. later we found out it was dry blood. By the time we got to hospital her fever was 104, so they admitted her. That day her DDAVP didn't work and when that happens she gets dehydrated and drinks and pees like crazy. Within 2 hours she was completely dehydrated and vomiting every few minutes.
She started getting really lethargic. I help her up to through up and she just flopped, her head going straight in her lap. So we got the doctor there and they were tapping her chest saying her name trying to get her to come out of it. It scared me half t death. She had never acted like this before. If ever we have something new come along.
They checked her sodium and it was 172 so they checked it 4 more times. Both the doctors there had not seen any ones that high. they were actually really surprised how well she was doing. I can't imagine what would be worse. They rushed her down to intensive care and started pumping her with all kinds of stuff. She pulled out of it and I was thinking how terrified I would have been if I had been at home. So I am grateful it all happened while we were up here. Heavenly Father was watching out for us again. We were very lucky.
Monday, October 5, 2009
I can't believe how much endurance Haley seems to have. She seems so sweet, guileless, and innocent. In first appearances, she doesn't give any hint as to how much strength she possesses. On Saturday, I was telling my husband, Brant, that Haley ran the St. George Marathon today. I said she hadn't even been training and just ran it. He said, "It's not that hard. You just have to put your mind to it."
Yeah, right, I thought. I could not just "put my mind to it." Then, I thought about it more and more. I've thought about it the last couple of days and I realized he was right. She did just "put her mind to it." She has either learned this or comes by it naturally, but she knows how to do that. I think that with Haley, she "puts her spirit to it," then her mind follows, and then her body follows. Now, of course, she has run marathons before and she knows what it takes. But I think she has been able to accomplish any goal she sets because she becomes so determined.
I've realized how many challenges in my life have become obstacles, not because I really can't do them, but because I haven't put my mind to it. I think Haley is such a great example. She said on her blog that as she was running, she kept thinking about what Ari had gone through and how strong she had been. She knew Ari didn't give up and kept fighting. It was from Ari that she drew her strength.
The last mile, Kaley and Taylor ran with her. I think, like in life, when our family runs alongside us, it can give us that extra boost and help us find our way to the finish line. I guess, in life, there are starters, quitters, and finishers. I hope that when it's all said and done I can stand under a banner that reads "Finisher."
To read more about Haley's marathon visit her blog: http://haleylane23.blogspot.com
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).