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!

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.