BMT Day +9

Today's photo is brought to you by The Whiting family (some dear friends of ours). We absolutely loved the picture. Thank you so much!

WBC's- 0.3 (yay, they went up... this means cells are growing)
Hemoglobin- 12.3
Platelets- 12
ANC- not available right now
Weight- ??

Happy Birthday to me, Happy Birthday to me, Happy Birthday dear.........This is definitely not the way I would choose to celebrate my birthday, but then again our family has not had a normal birthday yet this year. My birthday was okay, the one thing that could have made it better was being with my other kids and my family and close friends. I am very grateful Jerry was able to be here with me and Ariauna, but wish I could have had the rest of my family too! We got up first thing this morning to our lab report sitting on the table with a big note from the nurse next to the WBC's that said......"Yeah!!! WBC's!!!   I think the nurses were just as excited as us. So yes, this means the little cells inside Ariauna are starting to grow. Yay! Ariauna is still coughing and spitting a lot because of the mucusitis, there ends up being some blood in it because of the all the sores. So today during rounds Dr. McMillan changed the protocol for Ariauna's platelets. Normally they do not transfuse platelets during transplant time unless the platelets are under 10,000. Dr. McMillan is concerned with the blood in her spit and so she is going to have them transfuse Ariauna's platelets anything under 30,000. So for the next few days she will be getting a lot of platelets to build her system back up to the 30,000. Hopefully this will help her sores clot and heal easier. Other than that change, rounds went pretty well today. The doctors came in and checked Ariauna, looked in her mouth and evaluated her high fever and her head to toe rash. After rounds, Jerry and I went down stairs to the security office to get Jerry a family security badge so he can come and go from the hospital without being stopped by the security every time. While we were down getting Jerry's security badge, someone snuck in our room and left this for my birthday!

Not everyday you get a "Potty Cake" (yes they used a potty hat for the cake) for your birthday! It was pretty clever and got a smile and a laugh out of Ariauna. Thank you staff for remembering my birthday! We did get a lot of packages delivered to our room today. Thank you everyone for the texts, emails, posts, cards and gifts. It definitely made my not so great birthday, a little bit better knowing I am loved by so many people at home. Here are the fun packages we got.

 

 

Grandma and Grandpa sent me for my birthday my favorite candy in the world- scotch kisses from See's, the books "Trusting Jesus" and "Love Life and See Good Days" with a sweet card and some money for new clothes. They also sent Ariauna the book and mini doll of Saige (the American Girl Doll of the year), a really cute I am a Child of God rubber necklace and rubber ring and a pkg of twix.

We got a "Rainbow" package from the Petersen's. Inside was something to make me nice and comfy cozy (new slippers and a nice fuzzy warm blanket) with a brownie and candle for my birthday cake. And Ariauna got the new game Pass the Pigs Pig Party, Laffy Taffy (to read a joke when she is feeling down and sad), a fun bingo game to make for her activity day babysitting kit, and some fun glow in the dark flying disks and wands. We can't wait to do that one night in the dark, right when the nurse walks in...

 The Kirby family sent me my very own BIG bag of chocolate! Yummy!

The Whitings sent me some yummy chocolates... Great minds think alike and chocolate makes everything better right?

 The Leishman's sent us these cute bags made out of bandanna's.

 The Mason's sent me this yummy trail mix, it has been the perfect snack!

And Mason's sent this fun activity pack to Ariauna with coloring books, markers, and gum (per Ari's request).

 My brother Josh, Sabrina and Mia sent us this package with some money for my birthday and Twinkies with a candle for my birthday cake and this very special book. They had given the book to Jerry and the kids at home quite awhile ago and the book has a recorder in it, so our family at home has been working on recording it for us. They each took turns reading a page. Even Jaxon in his little voice reads part of the book. (Jerry said it took a week to get the whole book recorded because Jaxon needed to spread it out a bit). It is a special gift and we listen to the story all of the time and love to hear our families voices.

Brent and Karen sent us this package with cake balls, a gift card to Target for my birthday, a beautiful picture that says "Believe" some Nerd popcorn (I think Karen was trying to tell me something, lol) and an adorable hat for Ariauna. Oh and for those who are wondering what this funny card says inside, it says "Sending you lots of positive energy" and every nurse that walks in our room laughs about it....

Pearl and LaReese sent me this beautiful necklace. It reminds me of my favorite quote lately "Just when the caterpillar thought the world was coming to an end, it turned into a butterfly". Love it!

Amy from Child Life stopped in for a quick visit and Ariauna told her she was ready to shave her head. We told her we were hoping to shave her head before her shower, that way she could get nice and clean and get new bedding and hopefully all the hair everywhere would be gone. Amy started the search for the clippers on the unit, but was not having much success. Jerry and I had signed up this morning for a volunteer to come in and sit with Ariauna while I took Jerry over to the Ronald McDonald House to show him our other home away from home. He has never done the shuttle service around the hospitals and does not know where our room or anything is at the RMH. We took some of his luggage with us and unloaded some of it. He had brought our winter coats and some warm weather clothing for us. We took this next picture so we could show it to Ariauna and send it home to the kids!

I had not been back to the Ronald McDonald house for about a week because of the transplant and Ariauna  has not been doing so well so I didn't dare leave her. When we walked in the door we found these.

One was a stack of gifts for Sadie for her birthday and one was a stack of gifts for Ariauna. These were all from the Ronald McDonald House. They have a birthday party at the end of the month and celebrate all of the birthdays that month. The party for August birthdays was on Aug 23 and we were admitted on Aug 20, so Ariauna missed it.  They were very nice to put them up in our room for us, and very nice that they even remembered Sadie. She is looking forward to coming here to get her presents! While we were out Jerry took me to lunch at Chipotle (reminds me a lot of Cafe Rio at home). It was excellent!! Here we are at lunch!

I don't think I have ever hurried so fast in my life to run an errand and shoveled my lunch in as fast as I did today. I know it is my birthday and I that we need a break away from the hospital, but with Ariauna not feeling well at all,  I can not stand to be away from her. I worried the whole time we were gone if she was okay. So we ate quickly and headed back to the hospital. Ariauna was fine while we were gone and pretty much slept the whole time. However, while we were gone Dr. McMillan called and said she would call us back. It was shortly after we got back that she called us. They have decided as a team that Ariauna has "Engraftment Syndrome", and so they need to treat her with another 5 days of steroids. They basically explain this as her body is trying to engraft very quickly, which causes cellular and cytokine interaction which causes the fever to spike and the rash and itching. They normally would worry that these are the first signs of GVHD (graft versus host disease) because they have similar symptoms, but it is very unheard of to have GVHD before you see WBC's at all. Ariauna started her fever and her rash long before their was any detection of WBC's in her system. So today they will start her on a 5 day treatment of steroids again twice a day. If it is indeed Engraftment Syndrome we will see a huge difference within a day or two of steroids.  After we got done talking to Dr. McMillan we tried to find Amy and she had left for the day and never had any luck finding the hair clippers. Today is shower day for Ariauna and she is ready to shave the little bit of hair she still has left off. She is tired of her whole bed, pillow, blankets, piggy and pretty much her whole room being covered in hair all of the time. She can still pull it out in clumps. Jerry, got the idea to use the tiny shaver on the back of his razor to do it. I am surprised it didn't get all clogged up with the long pieces of hair, but it worked rather well. I think Ariauna just wanted it done so she was fine not waiting for Amy and just letting daddy shave it off.

I can not even explain how heart breaking it was to watch. I know this is the one part of this whole ordeal that Ariauna did not want to happen. She was so worried about losing her hair and having everyone tease her. Watching Jerry shave it off, just broke my heart and I could feel tears streaming down my face, as I worried about Ariauna and how she would take it. How she would feel about it being gone, and how everyone will be with her. I think it is so scary for kids, scary for her, scary for her brothers and sisters to see, scary for her friends to see and I just pray that everyone will love her just the same. That her same sweet friends who have been so good to her before we came, will continue to be just as sweet to her. To me she is beautiful with or without hair. She is still the same beautiful sweet Ariauna, and that is all that matters to me. I hope she will remember that when she see's herself, that she will still see a beautiful girl and that she will remember she is a Child of God and that she is loved so much by all of those around her. Besides that, hair grows back right? And before we know it, she will have hair coming back in. In the meantime, we have lots of beautiful hats and bows! While Ariauna was in the shower, the nurses got her a nice clean bed and we got her all changed into some clean pajama's. Later on today Ariauna did get another transfusion of platelets to help her numbers get up to where the doctor wants them to be. I am sure that is going to take a few days.
It was a long and busy day for Ariauna. Showers take a lot out of her right now. Just little things make her exhausted. Here she is all snuggled in her bed, ready to just take it easy for the evening.

 I asked Ariauna who she wanted to stay with her at the hospital tonight and of course she picked daddy. So I headed back to the RMH about 7:00 so I could do a load of laundry or two and then go to bed.

Today I am grateful for my sweet Ariauna... She has been through so much already in her little life and yet has so much more to endure. I am grateful for her sweet spirit, she has the best attitude and does her best at everything she is asked to do. I know she does not feel good right now, yet she still smiles and still tries her best to be happy. I am grateful to Jerry and that he can be here with Ariauna and I right now during these long, dark days. I am so very grateful to our kids at home. Not only am I gone and have been for over a month now, but now daddy is gone too. I appreciate them, trying their best to understand and putting a smile on their face and being bounced around from place to place all so that Jerry and I could be here with Ariauna. I know and I fight the tears each and every day that I am not there with them, and feel even worse that now daddy is not there with them either. I have been so amazed with all three of the kids and how willing they are to just do what needs to be done. They have accepted what our family is going through and are trying to move on and do what they need to do. I look forward to the day that we can all be back home, in Utah, in our home as a family again. Something, I think we all take for granted.  I am thankful to my Lord and Savior each and everyday for helping me through this. I can not imagine going through this without knowing they are right here on my side, helping me each and every step. And I am grateful to each of you who are praying for us! We truly can feel the prayers being said in our behalf and that is what helps us make it through each and every day. I am also truly grateful for all the birthday wishes today. Thank you for trying to make my not so fun birthday, the best that it could be under the circumstances we are in. Sending our love!