BMT Day +6

Today's daily picture is brought to you by Mia Rose (Ariauna's sweet cousin) and her puppy Cindabella. We love you Mia and miss you so much!

WBC- <0.1
Hemoglobin- 8.9
Platelets- 17
ANC- not available now
Weight- 53.24

Happy Birthday to the best Dad and Grandpa in the whole wide world. We love you Grandpa Watterson!  Last night was again a long, hard night. I ended up crying myself to sleep as I have many other nights. Ariauna was up several times in the night to potty and in stomach pain. She also several times in the middle of the night kept asking for her daddy. She knows he is coming soon and I think she is so anxious for him to come. But every time she would ask, I would cry a little more. I can't imagine what she is going through and not being able to have all of her family by her side, including her daddy. At 11:30 p.m. they took her temperature and it was 102.9 and at midnight they took it and it had jumped up to 104.3. She literally feels like she is burning up. We are doing all sorts of things to try to help cool her. They have ordered a cooling blanket that lays on her bed and has a big machine that runs constantly to help keep her little body cool. We have cool rags on her head, her tummy and ice bags between her legs, on her sides, etc. Pretty much anything we can do to help cool her down.

They gave her some Tylenol and watched it and it slowly brought it down, but then the Tylenol wears off and it spikes right back up. At 8:00 a.m. this morning her fever was back up to 104.1 so they again treated it with Tylenol. During rounds they decided they were going to order a CT scan of her sinus' and her chest again. With this high fever they just want to check everything and make sure they are not missing any infection some where. The fever can definitely just be from her fighting to get these new cells to grow, but they will continue to test and check for any virus' or infections. Otherwise the docs came into the room and visited with me and Ariauna. They told her again how great she is doing. She is so amazing! Even though she doesn't feel great, she tries to keep going strong.  Ariauna started her morning off by trying to eat an ice cream Popsicle to numb her throat a bit before trying to take her medicines.

While we were waiting for the doctors to get the orders written for her scans, a volunteer brought in a fun package. Ariauna loves to get packages. This one was from the King's!

Ari is funny, the last few packages that have came in those bubble wrap envelopes, she has used her scissors and cut them into pieces and then sat and popped the bubbles. Anything to make her happy! The Kings sent her the Planet 51 DVD, Flushed Away DVD, EOS lip balms for both of us and a really cute 1 day old card with a bunch of pink star burst. There was one yellow one. I think Brent did it to be funny and to tease Ariauna. She thinks it was just an accident and wouldn't bug Brent about it. Silly Ari!!  Thanks for the fun package. It was not long and the transportation crew came to pick Ari up for her scans. This is the first time Ariauna has been out of her room at all for 11 days. Here she is in her special mask that will protect her a lot more than the masks people are used to seeing her in. This new greenish mask will become her new best friend, if she wants to go out anywhere. This time she chose her new doll Julie to wear the other mask out in the halls.

The hospital is set up with a bunch of hidden halls that can pretty much get a patient from the BMT unit to the imaging department with as little public access as possible. I asked Ari if it felt good to get out of her room. She said yes!! Here she is down in the CT scan room ready to have her scans done.

 She did great for the scans and then got to pick something out of the treasure box. She picked a slinky. And here she is on the way up the elevator back to our "Home" (room 4142).

When we got back to our room, she really wanted to play some more Go Fish. She has really had fun playing that with me. We played it several times and then she wanted to start my manicure, so we got out the nail supplies and she started with clipping my nails. Then she brushed them with the little brush, and used the cuticle tool and pushed up all my cuticles. She had never used one before, and I thought I was going to die. It felt like she was cutting my skin. I finally, before I went through the roof in pain decided I better teach her how to do cuticles a little better. After I showed her how to do it, she did a much better job.

By the time she got my nails prepared and ready she was getting very tired. I was proud of her for being up for so long this morning. We decided we would have a manicure part 3 after her nap. We'll just about the time she was ready to get in bed to nap, the study volunteer came to play with her. Ariauna ended up climbing back in bed and the volunteer had brought a fun princess activity book to work in. The volunteer stayed for 20 minutes and then left the activity book with Ariauna to do when she wants. Ariauna enjoyed working with her. Again, just when Ariauna thought she was going to get to take a rest, the school teacher popped in. She stayed for about 20 minutes and more or less just talked about school and her program. They set up a time that she will come, it will be everyday M-F from 10-11 while she is inpatient at the hospital and then this same teacher (Mrs. Julie) will follow her in the RMH in the afternoons until her counts are up enough to get to come home. She was just settling in for a long winters nap when Nicki from Physical therapy came in. By now Ariauna was exhausted and was not happy. She fought Nicki and I to get out of bed again. I felt really bad for Ariauna because she had been out of bed all morning. She was so tired and just wanted to take a nap. I just about wanted to kick them all out of the room so Ari could rest too. I know how important Physical Therapy is, but seriously can they plan all these people coming in and out a little better so she can rest too. Nicki and I almost had to carry Ari out of bed. She finally got up to go to the bathroom. On her way back Nicki convinced her to sit at the edge of the bed and do a few leg exercises. Ari told Nicki she didn't want to play hyper dash with her so she went and switched the game for basketball. Ari was not really thrilled about it but Nicki only made her throw five hoops, had her do a few more standing exercises and let her get back in bed. Poor Ari, was beyond exhausted by this point.

Ariauna was finally able to lay down and rest and ended up falling asleep from 3:00 - 6:00 p.m. Before she woke up, I ran down and got me some dinner and came back up. She was still sound asleep.

After she woke up she decided we would finish our nails, so she got up again and sat in the little green chair. Here she is doing my nails a really bright green.

She did a great job on them and was so proud of herself for doing them. By this time, Ariauna was tired again and wanted back in her bed. She had a very long and exhausting day today. She physically is so exhausted but just doesn't want to admit that she needs to slow down. She wants to keep going and doing even though her body is telling her otherwise. The diarrhea was so much worse today. The poor girl, I feel so sorry for her. She would barely get back to her bed, get all settled in and then need to go again. I swear there was one 1/2 hour that she probably went 6 or 7 times. Ariauna was very against having to use the hospital's supplies, but after 3 outfits this morning I helped explain to her, that it was okay. Everyone else on this floor is having the same issues and some of them are 19 years old. Once she realized she was not the only one having trouble, she agreed to using something other than our undies! She still wants to wear her own pajama's and that was fine with me. At least now we wont be going through a zillion pairs of clothes. Poor thing, I felt really bad for her, I know this is not something she wants to do. But the getting up and down makes her sick and so she sits up, then almost every time has to throw up, and then unhook from everything and by the time we get to the bathroom it is almost too late. I am very grateful that Ariauna is still trying to get up to go to the bathroom, because they say on this floor it isn't abnormal for the kids to be so tired and weak that they can not even get out of bed, so they end up just doing it in bed. I am proud of Ariauna for making every effort to keep getting up. The bad news is that because the diarrhea is so bad, now she has horrible sores on her bottom. So now we get to use some heavy duty butt paste too. Seriously if you were to see just a days worth of stuff that goes into her Hickman line, into her mouth, on her rear, on the sores on her tummy that she has scratched raw, you would just die. No wonder her stomach hurts, her butt hurts, her throat hurts. I feel so bad for her.  Ariauna's pain in her mouth, throat, intestinal track and stomach got unbearable today. This is all caused from the radiation and chemotherapy. It causes horrible sores all the way down. The correct name for it is mucusitis and it is very painful. The doctors have actually been very amazed that Ariauna has lasted this long without pain medicine. Everyday since BMT day they look in her mouth with a flashlight to see how bad they are, and they were definitely getting worse and worse each day. Ariauna is a tough cookie, but today they did start her on some morphine, for now they just ordered it as needed. So when she needs it, they will administer it through her Hickman line. Later on today she decided she would eat a goldfish cracker and she about went through the roof in excruciating pain and she cried and cried for 20 minutes. I don't think she will do that again for awhile. She is pretty much down to not eating anything. We are told not to worry and not to force her because she is on IV nutrition but it is still so hard to not see her eating and drinking anything at all. Today she began to have more and more hair loss. Here she is just pulling strands and strands of her hair out. She would literally just run her fingers through her hair and gobs of it would fall out. I don't think it will be long and it will all be gone.

Our evening ended again with high fevers of 104.7 and some Tylenol (which is always fun trying to get her to take it by mouth). Ariauna hit her pillow and was out!

Today I am thankful again for so many things! I am so grateful to my kids at home. I have thought of them often and they are on my mind all day everyday. Today I couldn't help but think of how amazing they are. Not once since we have been gone have they complained at all about anything. I know this is hard on them and I know they would much rather me be at home with them, but the fact that they know I need to be with Ariauna and they understand that this is what we need to do as a family to make sure Ariauna gets the best medical care that she can get, is amazing to me. I want Austin, Sadie and Jaxon to know how much I love them. I hope they realize how brave I think they are too. It is not easy to have a sibling who is very sick. It is not easy to know your sister is going to go across the country for a life saving transplant. Yet they have not complained. Sadie had a really hard time when we were up at Primary's in March and April and I was so worried about leaving her this time for so long and going so far away. But she has done amazing and I am proud of her as well as Austin and Jaxon. I know this is yet another one of God's tender mercies, to help our family and to help me be able to be here and focusing on Ariauna and yet know in my heart and in my mind that my kids at home are healthy, happy and doing well. Thank you dear Lord, thank you family and friends for helping my babies at home.  I am also so grateful today for little Ariauna. She is such a small, beautiful little girl who has so much to endure. I know these next few days and weeks are going to get harder and harder and it scares me to death. I can see her each day, getting weaker and weaker. I can see each day her little body slowing down and just not having the strength to do it all. I hope someday she will look back at this blog and the pictures and realize what an amazing little girl she is. I love her with all my heart and hate to see her getting so sick. I love you sweet Angel.