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. somethings would help it for a little while but overall did little good. Some of her scabs were the size of penny's. They completely covered her head. they were much worse behind the ears and quite often they would bleed. But overall they surprisingly bothered her very little.
The next sign came about after i got this great deal on powerade. The kids found it and pretty much lived on it for 2 or 3 days. from what 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 feel 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 to much of a good thing. she slowly started drinking more and more water, we then started are extensive search for the most absorbent diapers we could find. We ended up trying about 6 different brands. Kirkland and pampers ultra dry were pretty compatible but pampers gave her rash, so the winner is. 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. 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 she got to were she was drinking about 1 1/2 gallons a day.
My first thought was that she had diabetes. She had some signs witch were, not liking sweets and being very thirsty at night and a couple others. So we went to wal-mart and got her a keytone test to test her urine, it came back negative.
I took her in to Dixie pediatrics on august 4th. The first thing they asked me 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 scabs on her head were cradle cap or cradle crap is what we call it, 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.
So this will have been her first time getting labs. They had to stick both arms because her vein would move.Her face went from shock, to pain, and then came the screaming. I thought it was awfull and 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 witch is the top doctor there. the next test they wanted us to do was a urine test for witch 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 bumbed her self up to 2 gallons of water and stopped eating and 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 witch she would also have to fast for. So i just 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 test done. Well in about 2-3 days she had gotten so sick and was in so much pain i called and got her another appointment.
When we got to the appointment they realized she had had a fever for about 3 days and still had one and 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
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 and this is kinda embarrassing but there front door sounds like a baby screaming and i was out there just bawling remembering how awful it was the first time. When my Mom came out she said that she did great. Ok yes i felt silly. When we got to the appointment they realized she had had a fever for about 3 days and still had one and 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. after all the test. Our doctor had been talking to some specialist up at Primary's and There idea was that it was her kidneys. They thought her kidneys had been flushed and we needed to take her of water completely and put her on a formula. We tried this one night and it was awful. so the next day we headed up to Primary hospital to see if they could do a little more for her. When we got there they were kind of like why are you here, and looking at all the other kids there i could totally understand why they felt that way. So 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 there for she is malnourished and needs to cut out water completely and instead of just formula she can 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. So this is what it looked like i actually wish we would have got a better picture. Travis said she looked like a concentration camp baby. I thought she looked like something out of a horror movie.
The first night off water was pretty bad. She liked doing walks so luckily in Mt Pleasant the weather was beautiful. Her poor little body shook all night long. she would get mean, she would manipulate anything she could think of to get water. She actually is pretty smart. She reminded us of a drug addict. She finally drank some milk one time after spraying this super salty stuff in her mouth. Then of course there was the vomiting. One time she talked Alaina into getting her a drink, she was so happy for that brief moment. She was so miserable and desperate. Later one of our doctors said take your self feeling more thirsty then you ever have then times it 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, had her fever witch got to 104 and she also was not backing down on the water. 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 just telling our doctor how there was no change still lots of pain fever won't eat and only wants to drink. Then as we were getting ready to leave, I said oh and she has this rash on her pody that i think is from her medicine because it was a rectal one. So she looked at it and as soon as she saw it her face 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 only on the upper body. So of course we had to get labs drawn, I text Travis and said man you owe me big, it was his turn and he got out of it again. so as i left we set a appointment for Friday witch was in about 4 days.
On Thursday on my way to scouts the receptionist calls me and says (very upbeat by the way) Well we have an appointment for Arianna on Friday but we were wondering if we could see her today, So i told her i was doing something but i would have my husband bring her down actually we would like to talk both of you, gulp that is never something you want to hear.
When we sat down with Dr. Smith she told us that they thought she had leukemia and they had an appointment up at Primary in the morning at 9am to see Ari and that she would have a bone marrow graft taken. So on the way home i was bawling. We called Zed and him, my Dad and Travis gave her a blessing, we packed 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 got a miracle on our hands. And 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. so this is when they told us about it maybe being LCH.
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, vertebra 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 (witch is her so called 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 witch was so odd because she is such a happy baby. You know the saying the squeaky wheel gets the grease well 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 whit ch 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 depend on you survival rate. witch her odds were not in her favor.
here is a letter a From Travis that i copied from Liz's blog.
Aunt Liz made a blog for Ari called prayforari.blogspot.com it has been wonderful even now it makes me tear up thinking how much time and love she has put into it and all those that pray for Ari and follow the blog. I am so grateful for you all and want you to know i love you. here is the letter
I sincerely want to thank everyone for all of the prayers and fasting that you have done for Arianna. I do believe that is what has helped her make it this far and that is what will continue to help her.
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.
Ari 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.
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,
Travis Lane
I have to say the first night in the hospital was hard but the second night was the worst. She was in so much the pain all she wanted to do was walk, anything to get her away from the rooms were all the not fun stuff happens we all did about a good 5 miles.
I still was confused ever since she was a baby i cept thinking she is way to pure for this world so sweet so beautiful. It always scared me a little that i thought that,but then i would tell myself oh that is just a paranoid mother thinking. but it was still there and i took a million pictures of her, My sister one day said alright Haley we Know she is cute but your going to make your other kids think she's your favorite. 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. So about three days before we got to the hospital I felt like I started saying my goodbyes. So by the second night in the hospital I felt very lucky that I got to hold her just me and her for this whole time. She uses my arm as pillow and very rarly will she let me move and i love it.
I was pretty sure that she was not going to make it through that night, at one point watching her go through so much pain i found myself saying "Its OK you can go." Then I thought what the heck why is she fighting so hard? I know that if it was me and I was in that kind of pain and drifting off so quickly I would have given up! Thank goodness she has Travis in her. So when she didn't go that night it made me think maybe she knows something that I don't and actually everything I think is usually the opposite. Thank goodness Travis is who he is. She also received a blessing later that made me think she is actually going to make it. The next day her platelets were at 8 even thou they had not received the the results back from the MRI Cat scan and biopsy they decided to go ahead with Chemo even tho she was not diagnosed yet because her little body was fading to fast. That was last Sunday. Since then we have had our good days and bad days but 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 on what dosage to give her and when so one of things that must be determined is that. Her Kidneys are making to much protein and she has a fatal illnes 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 a FYI Alaina our second youngest had chicken pox all over her body the day we came into the hospital so that has only allowed us to see our children twice since Ariann 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 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 deathly fatal to her as if she was not already in a deathly 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 Donna 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 at the time we had 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 Aris day she laughed and smiled it brought tears to my eyes to see my children so happy to see oneanother. It was literally a moment that you could not put a price on.
Vicki and Jayden are here from Alaska it has made it more fun for us. Another bitter sweet.
Jayden is having cesars 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 Micheal and Angie losing their baby without being able to say goodbye. Their are a couple of other kids that I have met here one of wich has been here since may and he is pretty much her to die. Well he is here to die they are giving treatment to allow his death to be as little pain 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 surgerys in the first twelve days of his life. The hospital is not to bad now the worse was when they were having her fast so that they could sudate her. Food and water were her only joys. She is so funny she also ate meat balls only for 3 days in a row. And 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 saddes things that I have ever seen," Jake was about ready to physical take out a nurse. Our family has been so supported Jake, Amber both Moms Jaymi and Donna 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. When all is said and done I am so greatful for to my Heavenly Father for the many blessings that we have for this opportunity and for the daily miracle that I witness each day to see her live another day. It has made me so much more greatful for my other children and to cherish their lives I am so greatful for this experience it has taught me so much about life and faith. I have learned so much from Travis I have always known that he was a positive person but I had no idea that, that man could carry such a large burden with a smile on his face, I do not believe that I could make it each day without him. No matter what happens and no matter what the circumstances or outcome happen he is always smiling with a good attitude with an excitment and privelage to be able to have another challenge in front of him. He absolutley amazes me. Not to mention all of the other challenges with business that he is dealing with that should be causing any normal man an ulcer he has not even allowed that to bring him down or effect his sense of humor. I can see why the doctors wonder if he does understand the severity of the illness with Arianna because he is so uplifting to everyone that he speaks with. I love him so much. I am so greatful for him as hard as this trial is, i would rather have this then not have the relatshionship that i have with him, he truly is my best friend.
