Wednesday, October 20, 2010

DARN HERPES






When I was in Elementary School sometimes the kids would say "Don't touch her or him they have Herpes" I never really gave it much thought back then of what herpes was, all I know is that it would make the kids cry the ones that were getting the finger pointed at them being accused of having herpes. Everyone would say oooohhh, yucky and grouse!!! I always thought it was mean when kids would say that about the other kids and most of the time it got me into a fight with the mean kids. For those of you that know me that was a common event for me. Little did I know just how brutal herpes could be. Obviously with her lack of Immune system she has had a great challenge combating this virus it has continued to spread and become more violent. The herpes as you can see are very prominent on her lips but, that is just what the eye can see. Her entire mouth was covered with one big herpes cold sore. The herpes had become so infectious that it was covering her teeth, the gums of her mouth had swollen over her teeth and her teeth could not be seen. But, that was not it the herpes continued down her throat through her digestive tract all the way to her rectum and vaginal area. Obviously the pain was very high she stopped eating and even drinking. For a DI patient not to drink causes problems so the constant IV's and feeding tube was a must. When she would go to the bathroom #1 or #2 her body would shake because of the pain. In the beginning she would scream and cry. She would try to hide it from us that she had gone to the bathroom in her diaper because she did not want to have her diaper changed, having her diaper changed was another painful task because of the wiping. So we started spraying her off with the shower hose then allowed her to soak in her bath tub. She would sit in the bath tub for hours and hours. We would have to change the water multiple times to keep it warm for her. We ended up having to put socks on her hands because she would not stop picking at them. The pictures of her on the left in the bath tub was not when she had the herpes. I did not take any pictures of her when she was in the bathtub with herpes. So I put these up instead to show how cute she is in her tub playing with her (buddies) that is what she calls those little toys, they would come with some of her meals. She would sit in that tub for hours. We think because the warm water felt good on her bum and vaginal area. When I would hold her while she was asleep I would put my arm under her head and she would snuggle into my chest. She accustomed her body to not swallow her saliva because of the pain of the contraction in her throat. Well one morning when she woke up I was covered in blood because of the sores on her lips and she was constantly bleeding from the sores in her mouth. It had looked like I was shot by a gun in my chest. When she saw all of the blood on my chest she became very concerned for me and started hugging me trying to console me through my pain well the pain she thought I was experiencing. That is very common of Ari to be so empathetic to others and their comfort or discomfort. When our other kids Kaley, Taylor and Laney went into have their blood drawn to see who would match for the bone marrow transplant, Ari did not want to watch and she was upset that they had to be poked, after-wards all the kids had bandages on them to stop the bleeding. Ari was so upset and she was consoling each one of them giving them hugs and patting their backs. The expressions on her face portrayed pure love and empathy.

PICU



This picture was taken shortly after Ari was taken to the Pediatric Intensive Care Unit. Ari and I (Travis) had been alone for several days. Haley was back home in St. George because she was due any day to have our new baby. After the third day my mother came up to be with me. It really takes two people to care of Ari. Ari loves to be held by her mom so much and if Haley is not available then I will have to do. So one job is for one to hold her 24 hours a day and the other is what I call the Gofor.... Go for this and Go for that. They are both challenging roles I have played both roles many times. When you are the Gofor you not only have to take care of all of Ari's demands but you have to take care of Haley's as well because, Ari will not let Haley or me leave her. I have to agree with Haley, when you are laying there holding Ari her strong loving spirit feels mine it is a divine experience to be able to hold such a precious being. Here is the story behind this picture, Ari's condition is very volatile especially at this time it was not unusual for her to taste death 1 to 3 times a day. Let me explain, Ari's heart rate had rose to 228 beats per minute (very very high for a two year old) her fever was remaining between 101 and 104 constantly and she was requiring blood transfusions every 12 to 36 hours. Her poor body was plagued with not only the LCH Disease and Diabetes Insidious (DI) but she was also fighting EBV Virus, Strep, Herpes and Staff infection. With no Immune system those infections and viruses will kill her and killing her they were. The EBV Virus and the LCH was eating up all of her blood. Those viruses and and infections alone are painful. But also the LCH and DI can be an excruciating pain. My cousin died of Colon Cancer at the age of 52 almost two years ago, he explained the pain was like no other pain he had experienced he said it went all the way through the bones. Ari's blood pressure had been dropping rapidly so she was transferred to PICU. On the way to PICU she was saying something I could not understand her. We had to go from the 4th floor to the 2nd floor. She continued to be saying something and I kept asking her what she wanted. I said " I am so sorry honey I don't understand you!" Keep in mind right before we left the 4th floor to PICU her blood pressure was 46/14 yes that is correct. They had to put four additional IV's in her besides the port access she already had which at the time was receiving blood and trying to find her veins is a nightmare. Seriously, to me it feels like I am witnessing some sort of evil torturing while probing and stabbing. She was going in and out consciously and unconscious. However she continued to be mumbling words and I felt so bad that I could not understand her. Finally I heard her say in her cute little 2 yr old weak voice with the little baby two year old accent say "Name Jesus Christ Amen." She wasn't asking for anything from me or even trying to tell me anything she was praying. I wish I knew what she was saying, my heart wonders what a little girl in that condition and situation will ask God for? I was sure that she was not going to survive and my heart was fearing making that phone call to Haley but, she made it again. This picture was taken two to three days after, my mother and I stood there watching her sleep. The feelings of watching your 2 yr old daughter come so close to death in such a painful manner and then be able to witness her sleeping so peaceful is a joyous occasion.

Update With Arianna

Hello Everyone,

We have been receiving multiple emails, texts and phone calls asking us for an update with Arianna. Many have said that they check the blog frequently but nothing new has been added for a while. We do apologize unfortunately, the last 3 months have been very intense with Arianna and we have also had a new baby arrive. So I am going to do my best to update my information. I usually like to go through my sister Liz because I am not the best when it comes to spelling and punctuation. For example I have been writing lip nodes not lymph nodes so Liz will usual correct my mistakes before she publishes what I wrote. (where were you on lip nodes Liz)

I am mainly going to post pictures and explain, Haley is going to write the details of the latest events.

Arianna has touched my life in so many ways I really do not have words to explain, I guess that is why these pictures may explain better. It has been a very bitter and a very sweet journey these last 18 months and I am sure the bitter sweet will continue. I have to gratefully admit that I have not complained in word or actions these last 18 months I have continued to hold my spirits high however, just the other day I was with my sisters, Liz and Vicki and my mother. I unloaded for about 30 minutes and they empathetically listened with all of the love in the world. Haley and I really hope that all of you feel the love and appreciation for your prayers, love and support. There is no question that we are blessed from you and your prayers and fastings. Thank you very much!

Saturday, October 9, 2010

Bone marrow time

We are getting ready for her transplant. Alaina is a complete match. She is exited to take a brake from school and come up with Mom. She doesn't quite know that it will hurt.

Sunday, September 5, 2010

Email from Travis

Date: Mon, 30 Aug 2010 17:31:13 -0700
From: jtlane1976@yahoo.com
Subject: Ari update

Hello Everyone,

Just a quick update about Ari. Some of you may know that we have been in and out of the hospital for the last 7 weeks, mainly in St. George. But we have been at Primary Childrens since Thursday (August 26, 2010). Mom was up here with me while we spent over a day in ICU. Haley couldn't take it anymore remaining in St. George so she came up yesterday evening. She was staying in St. George because she is due any day to have the baby. Actually her due date is on the 4th of September. But she has always been 10 days late with all of the other kids. Anyways we have decided to have both of us up here at PCH and have made arrangements that if she does go into labor we literally just have to walk over to the University Hospital. We won't even have to go outside and get into a car. The kids are with Grandma Bradshaw. They are on their second week of school and they really like it. Taylor is playing contact football and Haley recorded his games last Saturday and without being an unbiased father, he is unbelievable!

Ari is definitely struggling. The list of her infirmities is very long and the discomfort and pain that it is causing to her body is very sad. It is not just one single symptom that is killing her it is a multitude of diseases, viral's, bacterias and infections. Just one of those symptoms would bring me to my knees begging God to take my spirit to allow my physical body to be alleviated from the pain.

She has herpes that has infected her mouth down her throat through her digestive tract all the way to her rectum. She also has a viral called EBV. I forget what it stands for, but it is causing her body to not be able to heal and reproduce white and red blood cells. She also has staph and strep--not the normal strep that most people get but the kind that eats through your skin and organs. Obviously the pain of all of these is extremely painful. I am seriously blown away of how she continues to bare it.

The cancer has moved into her jaw on both sides and into the base of her skull as well as into her lip nodes. So now the LCH is in her liver, lungs, kidneys, spleen top of her skull, the base of her skull her jaw and her lip nodes. The doctors were joking today saying that this is a new disease and it should be named after Ari. But they were serious when they said that they had never seen anything like this and they are amazed as to how she continues to fight this disease.

The plan now is to get her healed of the Herpes, staph, strep, and EBV. Once she is healed of those bacterias, virals, and infections then they are going to work on the Cancer. They are very concerned about the cancer in the lip nodes especially because that will aggressively spread and it is a large chance that it is in her bone marrow. So we are closer to the bone marrow transplant and hopefully the new baby's placenta will match. If not we will start with Taylor then Kaley then Laney. Then, if they don't match we will move on to Ron and Vicki's kids (LOL).

I did not know that bone marrow transplant was so risky. The doctor explained the risks of the transplant and now I understand why it is the very last resort.

Thanks for all of your help and love.

Love
Travis

Tuesday, August 31, 2010

August 31, 2010 Facebook Feeds

Haley Lane said: Ari hasn't had a fever in a while. so that is really exciting. thanks for all the prayers.

August 31 at 6:30pm via Facebook for BlackBerry · Comment ·LikeUnlike · View Feedback (25)Hide Feedback (25)


12 people like this..

Kristi Lane Niu Just want you to know we love you guys and think and pray for you often. Give Ari a hug from her cousins in AZ
August 31 at 6:32pm · LikeUnlike.

Tammy Swayngim Zimmermann Thank God awesome news
August 31 at 6:33pm · LikeUnlike.

Sharon Danners That's fantastic Haley!!! Bless her heart!!! ;)
August 31 at 6:37pm · LikeUnlike.

Jacki Barbe That is wonderful.. GOD IS THE ALMIGHTY HEALER..PRAYERS WORK...TY LORD... Still praying..
August 31 at 6:44pm · LikeUnlike.

Jackie Hodge Great news Haley!!! Praying every day!!
August 31 at 6:46pm · LikeUnlike.

Tina Riehle Yay! That's awesome!
August 31 at 7:23pm · LikeUnlike.

Christina Taylor That's so awesome! Prayers work! Still praying for her....love you all!
August 31 at 7:40pm · LikeUnlike.

Keena Argo Ortiz Great news! Praying much more is to follow.
August 31 at 8:42pm · LikeUnlike.

Lelynn Parys wonderful!
August 31 at 8:50pm · LikeUnlike.

Bobbi Matty Kaufman Good news! We all will continue praying.
August 31 at 9:51pm · LikeUnlike.

Amber Parten Continue praying..
September 1 at 7:28am · LikeUnlike.

Nicole Maslonka Henderson Still praying for little Ari..
September 1 at 7:48am · LikeUnlike.

Jacki Barbe TY U LORD!!! TY U LORD!!!! GOD IS GREAT!!!!!