Family pictures

I love Hayley and no I'm not talking about myself. My sister is law Hayley is the bomb. She took our family pictures on my birthday. She us so talented. It takes a lot of work to make people 50 plus Pounds over weight look decent. We had so much fun doing them. Ari and Lilly did great they were both really happy. Ari was in a lot of pain, but she was such a sweet hart. Thanks again Hayley.

We are on our way up to salt lake. Tomorrow should give us a clue to what our future holds. We are fasting and our a little unsure on what to fast for. She says she is done and is in quite a bit of pain. If her hart has been fixed by the medicine then They want to go ahead with bone marrow. The other night I was imagining that she got the bone marrow and it fixed her disease. I have been going through all the pictures of her before the disease and in about 90% of them she is out right laughing. She was such a happy little girl. I took so many pictures of her. Danny said to me one time. You are going to make your other kids feel bad. You are a little crazy about this kid. If it is possible I think I am way more attached to her now. She is my world. I love her so much. Even now with all she is going through she is still pretty Happy.

Tangled

We took the kids to tangled and we all loved it. Arianna loved it she fell asleep half way through. She sleeps more then she's awake lately. but we all really enjoyed it. We also got all 3 girls little Rapunzel dolls.

A lot has happened this last few weeks. Ari was getting ready for bone marrow. Alaina was our match, she didn't care that it would hurt, she just was exited to spend some time with Mom. What a sweetie. Anyway this whole last week was spent doing tests. None of them went well. The LCH is in 50% of her bone marrow. Her ct scans showed that all her lesions were getting rapidly bigger and she had quite a few new ones. She has really big ones on her hips so pretty much now we can only lift her by her bum because she is in pain everywhere. To top it all off The chemotherapy has damaged her hart. With all that going on, they said that they can not do bone marrow with her hart damaged. And they don't do bone marrow with her disease so out of control. And there is nothing we can do to get it under control. So here is a hart med will check on her hart in a week. meanwhile we have been trying to get her make a wish together and say our goodbyes. So I called them today and they decided they are just going to try to fix her hart and do it anyway. So we will find out Monday. Poor thing won't be very happy. She is so fed up with hospitals.

Family fast and prayer

My brother Travis' daughter, Arianna, has been battling LCH for most of her life. She is only 2 years old. My mom sent this out tonight. Please remember their family in your prayers.

___________________

Just an update on Arianna, I just got off the phone with Travis and they are giving Ari another heavy dose of chemo for the next few days. Things are not looking good for her. He says she is in a lot of pain and can't even sit up, it seems you can't touch her anywhere without it being too painful to her. She still has Herpes in her mouth, all through her body and can't eat except through a feeding tube. They cannot do the bone marrow on her because she still has the viruses and the cancer is coming back, which means she is not in remission. It has to be in remission before they can do the bone marrow transplant.

We would like to start a family fast in her behalf tomorrow (Friday) at noon until Sat. at noon if at all possible for those that can. Actually even if some would like to start today or whenever it would work best for you. We are all on different schedules, and I know this is a short notice. We had hoped to do it Sat. for our regularly fast Sunday but feel we need to do it now. We would like the fast to be whatever Heavenly Father's will is and for Ari not to have to suffer anymore; or if she is to be with us to please help her to get better soon. We will faithfully accept His will.

Haley and Travis our prayers are with you and we are so grateful for the great examples you are to all of us. We love you and are with you.

Love,

Mom

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.