BMT Day +7

Today's daily photo is brought to you by the Mason family. (One of Ariauna's best friends and her family). Thank you Mason's for the fun photo!

WBC- 0.1 (1st day of a positive WBC) Yay!
Hemoglobin- 6.3
Platelets- 8
ANC- not available right now
Weight- I didn't get it written down

I have to start off this post about my crazy dream last night. I woke up in a huge panic. I was dreaming that we had been here in Minnesota for awhile living at the Ronald McDonald house. We had been having a great time at the house with all the fun activities they have. I had invited my whole family (extended) to come and visit us and to stay at the RMH. (first off that was weird because my own little family will barely fit in our room, but whatever). Anyway, on the day my family was to arrive people were coming at all different times. But not only did my own extended family come, but our whole ward family (for those of you who are not from Utah and don't know what a "Ward" is, it is the group of members of our church that meet together each Sunday that live in specific boundaries) started showing up. Suddenly we had hundreds and hundreds of people coming here to stay with us and I didn't know where to put you all. People were getting offended, and feelings were getting hurt when I tried to explain that my family had been invited to stay at the RMH and the rest were going to have to get a hotel room..... I woke up in a huge panic as our room at the RMH only sleeps 6 and we could maybe put 10 on the floor in the bedroom and maybe 10 on the floor in the living area. Anyway, I thought you would all like to hear the bazaar dreams I am having. I appreciate you all coming to visit me in my dreams, but please don't plan on all coming to Minnesota at the same time and expect to stay in our little tiny apartment room. Sheesh!!!!

Last night despite my crazy dream, a lot happened and it was very eventful. It made for a very long night again on me. at 1:00 a.m. Ariauna was again spiking a fever of 104.3 (Have I explained to you that none of my kids have never had a fever this high, ever in their lives so this is really freaking me out). They drew her labs at 2:00 a.m. which is the counts I listed above. At 3:00 a.m. they were in pre-medicating her with benadryl and tylenol. Shortly after, they gave her a red blood cell transfusion, it ran for 2 hours and shortly after that they did a platelet transfusion. ( I know this sounds so scary to all of you and it is scary to me too, however, please know that it is very normal for all kids to get a lot of red blood cell transfusion and platelet transfusions during the transplant process).

 In case none of you noticed her counts listed above, her WBC is no longer <0.1.....Meaning we have a WBC count.... Yay!!!  This is only the beginning of a long road, but it is a HUGE step in the right direction. The doctors were amazed, as this is very early to see an umbilical cord start to graft. They also wanted to make sure we know that her WBC can go up and down for some time now so not to get to discouraged if it does that. I was so happy, I know 0.1 is not much, but it is so much better than being zero!!!  At 9:30 a.m. her fever was still 103.1 so they gave more tylenol. When the doctors came around to do rounds we discussed her pain level, I told them she seemed to be in quite a bit of pain. They decided to put her morphine on a drip with a set amount being administered all the time as a base line of pain management but then to give her a button she can push when her pain gets worse. The morphine shots they had been giving her were a 0.9 amount and they are going to start the drip on a 1.2 so it will be a little bit more of a base. They also adjusted how much she will get when she pushes the button for a bump. Ariauna's hair is falling out more and more. It is all over her pillow, her clothes, her bed, her blankets and pretty much the entire room. Here is a short video of Ariauna pulling her hair out in clumps. It looks like she is pulling hard, but she really isn't. It is just coming out in clumps.

These next few pictures just show how thin it is getting and how much has fallen out in just a day, because yesterday was the first signs of hair thinning.

This bag is just the big clumps she has gotten out, this doesn't include all the hair we find everywhere else. It is starting to break my heart. I know we were warned this would happen and I have tried to prepare myself, but this is the part Ariauna has been the most worried about and it breaks my heart because I know she is going to be sad. She really wants to save the hair that falls out so we are trying to keep as much of it as we can. (I think it would be another great hair rat for Carrie, in case you don't know Carrie she is a great prankster that Ariauna and our neighbor Brent like to pull pranks on) but Ariauna said no, she wants to keep this hair. It is pretty special to her and even has some blue, purple and pink streaks in it. This morning Ariauna's new school teacher Ms. Julie came in to work with her. Ariauna was able to sit up in bed and work with her for awhile. They did a little bit of math and a little bit of reading. School is suppose to be an hour, but after 30 minutes, Ariauna was exhausted. Just doing small things, takes so much energy out of her. She rested for a few minutes and it wasn't long that Nicki from physical therapy came in. This is the one day that Ariauna put up a good fight not to do it. I can't say that I blame her. She is still running a high fever, itching like crazy from this stupid rash she is covered in from head to toe and sleeping the majority of the day. She is exhausted and the last thing she wants is a million different people waking her up. Ari actually kicked us a few times and got really mad. She eventually got up to go to the bathroom and said to Nicki, I don't want to play Hyper dash I want to play basketball. So Nicki was right on it and went and switched games. Here she is playing her few hoops of basketball, just enough so she could get back in bed, poor girl.

Once Nicki left, Ariauna did get down for her afternoon nap and slept from 12-3, I actually got a shower during that time. Some days I am lucky to get a shower before bedtime. It was not long after Ariauna woke up from her nap that Amy from Child Life stopped in. She is the only one Ariauna wants me to wake her up to see. She loves Amy and would be so mad if Amy came in and I did not wake her up. Luckily, Ariauna had just woke up when Amy stopped by. Amy said she had heard through the grapevine that Ari was getting quite a collection of hair and thought she might need a cute box to decorate to keep her hair in. So she came in and they started working on this special box.

Ariauna only lasted maybe 15 minutes with Amy and then she was too tired to keep doing the box. Ari said goodbye to Amy and then I got her all settled back in her bed. I put away all the supplies and we will try to finish it another day when she is feeling better. Ari immediately fell asleep again, she just can not keep her eyes open. She wants to do things, but her poor eyes just can not stay open. Early this evening they drew her labs again and she was very low on red blood cells and platelets again so they ordered both of them and started her pre-medication so they can get those transfusions going. The next time Ariauna was awake, I sat and read her Pippy Long Stockings book to her. Who knows if she will ever remember any of it, but it was fun anyway. She was in pain most of the day and she kept throwing up hunks of tissue which is part of the mucusitis. Late tonight they drew labs again and her hemoglobin was back up to 10.6 and her platelets were at 22. Yay!  It has been several days since Ariauna has even cared to turn her special "mood" light on in our room. She has not asked and has slept so much she has not even mentioned it. Today we got a couple of special text messages with some beautiful pictures. This one our friend Brent sent us, it was taken right above some houses in our neighborhood, just peaking through the clouds. He was wishing Ariauna a rainbow kind of a day!

It was not too long after we got the one from Brent that we got another one from our friend Lisa down South, again wishing Ariauna a rainbow kind of a day. Great minds think alike uh Brent and Lisa :-)

Beautiful pictures and I appreciate them thinking of Ariauna when they saw these. Even though Ariauna may have a few days that she is not feeling 100% and not caring too much about her stupid light in her room. There are plenty of other beautiful rainbows to remind us of a beautiful girl, fighting a tough battle!

(Thank you LeeAnn for putting this beautiful picture together for us!)


Today I am so grateful for all the prayers that are being said on our behalf. The doctors are still very amazed to see any kind of a white blood count right now with her transplant being an umbilical cord. They do not usually start seeing any kind of WBC until at least 2 weeks on cord blood. I know that the prayers of so many people praying for Ariauna and praying for those little cells to grow, grow, grow are being answered. I have no doubt that my Heavenly Father is walking beside us each and every step of each and every day. I know he is answering my prayers along with all the others that are being said in our behalf. Keep praying for those white blood cells to continue to climb, as this is what will help Ariauna to start to feel any improvement. Lots of love to everyone!