BMT Day +3

The daily picture today is brought to you by Ariauna's Grandma and Grandpa Watterson. Hope you are enjoying the daily pictures as much as we are!

WBC- <0.1
Hemoglobin- 9.1
Platelets- 33
ANC- not available right now
Weight this morning- 51.26

We had a bit of a rougher night last night. Ariauna was up once in some pretty bad stomach pain. They gave her nausea medicine at 10:15 last night and she went until 5:15 this morning and then needed some more. The minute she woke up this morning she was in a lot of pain. She was crying and hurting in her stomach. This is all very normal and is the beginning of our long horrible week. This is all side affects from the chemo. It is hard to see my baby girl without a smile on her face, but I wouldn't be smiling either if I was her. She wants her light to be a rainbow no matter what, even if she is throwing up. She was not happy when I took these pictures, but I want people to know this is hard on her and that she tries to be happy, but that the darn chemo is dragging her down.

 

The doctors knocked on the door and invited me out for rounds. They went over all of her labs, which were all okay this morning. Then they discussed the pain that she has been in and have decided it is time to start the morphine drip. I was sad, but also do not want Ariauna to be in pain. The doctor said that most kids are on the morphine drip long before now, so Ariauna has done really well. She can only fight this so long without the help of medicines to see her through the tough times. I just know morphine has its own side affects. They will start her on a very low drip and can increase as needed. The doctor and a few of her PA's came in to the room to see Ariauna and listened to her heart and chest. They gave her a A++++ again and told her how fabulous she is doing. Ariauna's day started out pink again. Today was definitely the worst day yet.We had another horrible experience trying to get her Sirolimus medicine in her. Here she is prior to the argument. The brown is her chocolate syrup to try to wash the nasty taste of the yellow medicine down.

I tried for over an hour to get her to take them and I finally had to leave again and let the nurses try to do it. I could hear her screaming again while I was out in the hall. Even with the chocolate syrup she does not like to take it. We discussed again if putting an NG tube down her nose would be helpful, but of course she freaks out. I told her maybe one day of pain from the tube going down would be better than this fighting to take the medicine twice a day for the next 100 days. Ugh! We tried to get her to take it in a pill form and she just couldn't get it down. They are going to try to have Amy from Child life work with her on Monday to learn to swallow pills to see if that would be better. Finally after a lot of bribery she got it down.  It wasn't long after that physical therapy came in to work with her. Let's just say Ari was not really very thrilled to see them. After throwing up 5 times this morning, getting out of bed and doing exercises is not what she had on the top of her list to do. Poor physical therapists have a hard job, trying to get kids who do not feel good out of bed to exercise to keep themselves strong. I have noticed just in the last 24 hours Ariauna getting weaker and weaker. She now sometimes asks me to come help her get up to go to the bathroom. I am grateful the physical therapists come in. Here is Ariauna trying with all her might to play hyperdash with the lady.

She was much weaker this time and had to continue to stop and sit on her bed in between exercises. She kept complaining her tummy hurt pretty much the whole time. They played hyperdash twice and then they played tic tac toe with excercises in between each throw. Of course Ariauna won that game too.

Ariauna laid down and crashed after the lady left. She slept for a couple of hours. It wasn't long and Amy popped in for a little bit of play time. She came to see what Ariauna wanted to do today. Ari said she wanted to play games. We gave Amy our tally sheet for her beads of courage so when Amy went to find some games she also brought back a cup with all of Ariauna's new beads and some games. They ended up playing Go Fish the whole time Amy was in our room. Ariauna enjoys Amy coming in and it doesn't matter what they are doing she has fun.We traded some of the games we had in our room for some different one's just to change things up a bit.

Today was a day that Ariauna had to get out of bed and shower and have her bedding changed too. That was tougher on her today than other days too. Until today she loved to get in and take a warm shower. Not so much today. We had a volunteer come in today that wanted to play with Ariauna so we got out Ariauna's sock kitty's that she got for her BMT birthday. They worked on that for about a 1/2 an hour, but it is gonna take a bit more time to finish. We got another package from the love chain today and it was from the Burrows. These packages put a smile on Ariauna's face. She gets so excited when they come in and tell her she has mail or a package. Thank you so much to everyone at home who has sent things. Rather it is a letter, an email to the hospital sight, or a package...she loves them. Here is what we got today!

A book of word searches, paints, a paint book, nail polish, cute socks, nail kit, a cute card and our stress guy. It is hilarious! You squeeze him and he says "Relax, Calm down, Don't stress, Take it easy".  It is hilarious and me and Ari were both laughing hysterically. Thanks Burrows! Ariauna and I actually like to have word search races. We started those when we were up at Primary's for 5 weeks in March/April. We love to crawl in the bed, she does one side and I do the other and we see who can finish first. We have actually done it a few times already since we have been here. Our day seemed rather busy, but when there was not someone in our room this is what she was doing.

She is such a sweet girl and I love her so much! She keeps trying so hard not to fall asleep. She has always said naps are for babies. She tells me she is not tired and she wants to play a game with me, but before I can even get it she is asleep again. She has been very tired today. She took another good nap and then was up for just a short time again. She wanted to do something with me so we updated her beads of courage.  necklace. She is actually  getting so many beads now that we actually changed things a little bit. Her main necklace with her name will be all her very special beads and things she can not get very easily. Then we will do a few separate necklaces for things she earns everyday. I have also included a copy of the tally sheet and how she earns them. 

 About 8:00 the nurse brought in her medicines to take again. I went and got some chocolate syrup and she actually took it really well. But about 15 minutes later, it all came back up. Ugh! In order to not have to retake it, it has to stay down for 30 minutes. So she had to retake the nasty one again. I felt so bad for her. I gave it to her and made her lay down and thank goodness the second time around she was able to keep it down. We also spent a little bit of time this evening working in her school work books. She has always enjoyed school and doing school work. 

Late this evening she started running a fever of 100.5. They immediately gave her some Tylenol and immediately drew some blood work to run some cultures to make sure she does not have an infections somewhere. The nurse talked to the doc about all of her throwing up today. It ended up being about 9 times today. They are going to start with zofran being administered scheduled around the clock and see how that goes. Poor girl. Ariauna and I had a really good talk today. It went something like this. Me- Ariauna do you know and understand why me and daddy chose to bring you to Minnesota?  Ariauna- Yes  Me- Why?
Ariauna- So that my blood factory can get fixed and I can feel  better.  Me- That's right Ariauna, do you know how much mommy and daddy love you and that we would never purposely do something to hurt you? Ariauna- Yes mommy.  Me- And Ari, you remember what Dr. McMillan told us back in May when we came to visit, that you would come to the hospital healthy, and that you would have to get really sick before you get better.  Ariauna- Yes mommy I remember that.  Me- I hope you understand Ariauna that it breaks mommy and daddy's heart to see you getting sick and not feeling well, but that mommy and daddy want your blood factory to be working right too.  Ariauna- I know that mommy.

Why is it that kids are always so loving, kind, sweet, innocent and when life gets tough, they always seem to understand. They seem to just go with the flow, they seem like they are fine with everything and that they have no worries. Why is it that kids can trust what the doctors say, and what mommy and daddy say and just move on with it.  Yet, I am a grown adult and I worry, I stress, I cry watching her getting sicker and sicker. But no, she is tough. She keeps going, she keeps fighting, she keeps putting her next foot forward. She very rarely cries, unless she is in a lot of pain. I wish I could be innocent like a child again. I wish just for awhile that I could not worry, stress, cry myself to sleep every night because I don't want to see her hurting and in pain. Today I am grateful for a lot, but I have to say I am extremely grateful for Ariauna. I have learned so much from my sweet girl. She is truly my hero. She is a great example to me, and I am so grateful to have her in my life. She has shown me what it truly means to have Faith, to be Courageous, and to Go Fight Win. I love you sweet Ariauna.