Inpatient Day 0... HAPPY BONE MARROW BIRTHDAY ARI

WBC- 0.1
Hemoglobin- 9.3
Platelets- 18
ANC- not available now
Weight in the morning- 52.7   Weight in the evening- 54.9  (I think something was a bit off on that one)

We had an amazing day today!  Ariauna woke up in a great mood today and was a happy go lucky girl full of spunk and energy all day. She had a rainbow day from the start until the finish. She got up and got dressed first thing in her Ariauna shirt and some denim jean shorts. (In fact when the docs came in they said they are not sure if they have ever had a patient up and dressed with denim jeans on. She continues to amaze the doctors everyday. (Let's hope it stays that way). This next picture is what I walk out to every morning. About 8:30 a.m. I get a little knock on my door and they let me know they are out in the hall doing rounds if I would like to join them. I took a picture just to show you how scary and terrifying it can be.

This day there happened to be 10 with their rolling computers. Some days there are more, some days less. The first time I walked out to that, I about started to cry. It is pretty scary looking. There are BMT doctors, fellows, P.A.'s, Nurses, Dieticians, Pharmacists, and sometimes two of each of those categories. It reminded me of the day Ariauna was born and they wheeled me down to the nursery to say my goodbyes to her as they were transporting her to another hospital. I remember walking in and seeing a room full of people like this, but it was all a life flight crew. It was pretty scary. I was nervous and scared for what they were going to say to me. I have gotten more and more used to it now, but we will see what Jerry's 1st impression is when he gets over here and walks out for rounds the first time. I don't know if they realize how nerve wracking it is for the parent. I had to walk down the hall to take the picture because they wouldn't all fit in. (I did ask them if I was the only crazy lady that took pictures of them during rounds, Nope not the first and not the last). Our big BMT birthday started off with a bit of work. Elisabeth came by from Physical Therapy to work with Ariauna. They want to make sure she keeps moving during transplant. Too many kids stay in bed and then get weaker and weaker. Today Elisabeth brought her Stomp Rockets. Here they are doing some exercises and then playing with the stomp rocket. Ariauna set up the cups, of course by squatting and then they would do an exercise and then stomp. Ari was the stomper and Elisabeth was the aimer. They did pretty good as a team.

 

So far Ariauna loves physical therapy, because it involves playing. We will see how much she loves it when she doesn't feel good and they make her get out of bed. Shortly after Elisabeth left, Amy from child life came in to play with Ariauna. That is part of her job, to take the child's mind off of what is going to be happening and focusing on something fun. Ari and Amy decided to play shaving cream. Ariauna had a blast as you can see by the pictures.

Then to be funny they got all ready and pushed the nurse button and Ariauna told the nurse she needed help. He came running in and she made the puking sound like she had thrown up and like Amy had gotten it all over herself. It was pretty funny and we were all laughing. Then she gave her nurse a mustache. They are all such great sports around here.

Today we asked those who had Ariauna shirts to please wear them and asked that if anyone wanted to help us celebrate this special day to send us pictures of what they were doing to help us celebrate. We are so grateful to see that Ariauna was spotted all over today in Utah and even out of state. We are grateful to those who sent us pictures of doing fun things to celebrate. Here are the pictures we got today!

Wyatt and Oakley  enjoying cupcakes for Ariauna


Morgan  and Sofia  enjoying cupcakes for Ariauna

 Wyatt, Morgan, Oakley and Sofia partying for us!!  Uncle Josh taking Ariauna with him through New Mexico, Arizona and Utah.

Grandma and Grandpa taking a two second break from tending our brothers and sister.  Ariauna happy and waiting for the big transplant moment!

 

Ashlee taking Ariauna with her to her first day of college. Molly taking Ariauna to work with her and every time she cleans someone's house she see's Ariauna in the mirror smiling at her. 

Uncle Jeramie driving truck with Ariauna beside him today. Coming through Beaver, Utah.  The Whickers, the Whitings, and the Johnson girls took Ariauna with them to Tracy Aviary today.

 Jaxon playing at Grandma and Grandpa's. Some of the amazing staff we have at Gearld Wright Elementary School. It brought tears to my eyes that they would do this for Ariauna. What amazing people they are!

Mekenzie, Jaxon, Austin ready to take Ariauna with them to Grandma's for the day. Sadie happy to be playing at Grandma's with her sister right along with her today.

The same neighbor kids at Tracy Aviary now showing Ariauna the flamingo's.  Uncle Guy getting some fresh air outside with Ariauna.

Daddy at work (had to wear his uniform so he wore his Ari pin until he got home from work and then put on his shirt). Uncle Guy and Ariauna having pizza for lunch!

Uncle Guy teaching Ari how to do the Rubix cube and Erin and Jack Leslie hanging out with friends and Ari close to their heart!

Brent and Karen took Ariauna out hiking with them today! (Ari would have loved it, she loves to be in the mountains). Sadie, Monkey Ariauna and Jaxon were hanging out at Water polo wtih Ariauna very close to them.

Brent, Karen and their family Tyler, Sydnie, Lisa, and Matthew in the mountains hiking. Dan and Lisa hanging out with Ariauna close by too!

Uncle Jeff with Lambo in their Ariauna shirts and Aunt Jeni and Oscar in their Ariauna shirts. Love it!!

      The Leishman kids hanging out in their Ariauna shirts!

     Oscar keeping Ariauna close to his heart too!  Love your smile there Oscar!

      Daddy, Brothers, Sister and Monkey Ariauna celebrating Ariauna's BMT at Coldstone Creamery (thanks to the Harmon family).

You can't forget the teenage mutant ninja turtles supporting Ariauna. They are telling you to Go Fight Win Ariauna!!

      Aunt Angela and Ariauna picking out cupcakes to celebrate the special day!

     Haleigh celebrating with a popcicle!!

Now that is a lot of Ariauna's in one place. The Leishman's showing their support to Ariauna!

As you can see there was a lot of Ariauna's all over Utah and other states today. Thank you to those who sent us pictures of you celebrating this special day with us. Every picture put a smile on Ariauna's face.

Today we had a knock on our door and no one came in, so I went to the door and it was another Fanconi Anemia family. We met Penni and Dawson our 1st night at the Ronald McDonald House and are so grateful to them for making us feel welcome there. Here on the Bone Marrow Unit you are not allowed to go in to anyone else's room on the floor (due to chances of spreading infections). They dropped off this adorable sock monkey and a card wishing her a Happy BMT day!! Funny thing is the Sock Monkey's name is actually "Birthday".

 Shortly after that visit, our nurse came and got me and said there was someone at the front desk with a delivery for me from Utah. I went to the front desk and it was Ronai who lives here in Minnesota. She is friends with our friends the Mason's back in Utah. The Mason's had asked her to please deliver me some Ben and Jerry's ice cream today!  So Ben and Jerry's does deliver, if you know the right people. I had been introduced to Ronai by the Mason's back before we came to MN and was given contact information for her in case I needed another person to lean on while we are here. I am grateful to the Mason's and grateful to Ronai for being there for us. Ronai and her son Joey came to our room and visited for awhile. We had a great visit and Joey drew Ariauna a very cute picture. He is quite the artist.

Amy from Child Life came in at one point while we were waiting for the cells to be ready and did an interview with Ariauna and I. She is doing a little video about her special day. Finally at about 3:00 p.m.Minnesota time the moment we have been waiting for came. They came in and said the cord blood cells were ready. Finally our sweet Angel Ariauna was going to be given her Bone Marrow Transplant. For those of you who do not know, this is not a surgical procedure. A Bone Marrow Transplant is done pretty much like a blood transfusion but it is given very, very quickly. And is only given once your immune system is compressed and you have had chemo therapy. We quickly got our family at home on face time. We got the kids and Grandma and Grandpa on Ariauna's ipad and we got daddy on mommy's phone. Here is the family on Ari's ipad, ready to watch!

 We wanted to be able to be together as a family as much as possible. The cells finally came into the room.And they got the IV all hooked up to Ariauna and ready.

 Ariauna had been pre-medicated with Tylenol and Benadryl because she is allergic to blood products. They had warned us ahead of time that the infusion has to be done quickly to get all of the cells in their quickly and that most likely she will get sick to her stomach. They also warned us that there is a very strong smell because of the preservative that the cells are in. They warned us that it smells like creamed corn. And sure enough that is exactly what it smelled like and continues to smell like in our room. Doesn't smell real great. Here are pictures of the gifts that have been waiting all day for this moment!

The big balloon sings Happy Birthday if you tap it. She loved it! Well the moment we have been waiting for happened. We have had several people praying for our family for months and months. There are numerous people fasting and praying for us today. We are grateful to this umbilical cord donor and the sweet, innocent, angelic, perfect cells. And as we gathered together as a family today we hope and pray that these cells will be exactly what Ariauna's little body needs and we hope and pray and will continue to pray each day that these cells will grow, grow, grow. It was shortly after 3:10 that they started the drip and she was receiving her transplant. Here we are in the process of it going in.

It wasn't but a few minutes into it that Ariauna started feeling sick to her stomach so they got her some zofran. The transplant ran over 10 minutes which is very fast. Most blood transfusions run over a 2 hour time frame. They also warned us that her blood pressure could go sky rocketing from having such a rush of blood being injected into her. If that happened they would start her on medicine for high blood pressure and she would have to stay on it for a few days. About 8 minutes into it, Ariauna started to get sleepy and was dosing off. (good ole Benadryl does that too her). She did really well and was a champ. She never did throw up and her blood pressure stayed normal. They watch her vitals very closely before, during and after the transplant. I am so grateful that her blood pressure stayed good. One less medicine we will have to deal with. We couldn't have asked for the transplant process to go any better than it did. We had a room full of people, doctors, nurses, Child Life, etc to be there to celebrate. We sang Happy Birthday to her and then we woke her up enough to let her open her presents.

Here are the presents she received today. Back when we first got here, we went to the American Girl Doll store and let her pick out a new doll. She picked Julie because she had long hair and Ariauna knowing she is going to lose her hair wanted a doll with long hair she could play with. So she picked out Julie, but Julie had to stay in the closet until BMT day. That was suppose to be on August 8th. Unfortunately due to circumstances with the donor change, poor Julie had to stay in her box in the closet a little longer. But here she is, isn't she beautiful?

This next gift I think was part of the love chain from home and it came yesterday, but because it was so close, I just held on to it today to give her one more present to open on her BMT day. This gift was from Josh, Sabrina and Mia. It was smartfood, a movie, a life book and a sleeping mask. She loved it and the next few weeks will definitely be movie days.

This next gift is a special gift from the Doctors, nurses and staff at the University of Minnesota Amplatz Hospital. They gave her a really cute balloon, a Sweet Shoppe Play doh set, a Crayola color wheel activity set and a Barbie. It also came with her very special BMT sign that you put on your door so everyone knows you have had your BMT. It is signed by all the nurses and staff.

Jerry and the kids sent her the other bouquet of balloons with the large balloon that sings. They also gave her a sock kitty craft, a puzzle, 2 new card games and a milky way.

And the last special gift was from the Baum's, It was a really cute bee gift box set with lots of yummy treats inside.

After we got off the computer, all of the company in the room left, Ariauna crashed. I just layed next to her and held her and weeped. My beautiful little girl will now be completely different on the inside. She is now 0 days old and her little body will fight, fight, fight to get those little cells to do what they need to do. The nurses explained to me that for the next few weeks and months it will be as if Ariauna's body on the inside has just ran a marathon. It is working as hard as it can on the inside to do what it needs to do to get those cells to do what they are meant to do. It breaks my heart to think of what these next few weeks are going to be like for her. She is going to sleep a lot!  My little girl is now just like a new child all over again. She will have to go through all of her immunizations again as if she was just born. Her blood type should now change to what the donors type is. So many things on my mind, but the main thing today is that I pray for this sweet girl to be able to FIGHT, FIGHT, FIGHT and win this journey she is having. Here she is all tucked in for the night. She even thought she would try out the eye mask. What a cute girl.

Today I am thankful for so many things. My heart is so full and I could go on all night about everything I am thankful for. But I am truly grateful to the donor who donated these cells. I am thankful for those of you who have been with us in prayer and fasting for Ariauna and for those of you who helped celebrate today even though there are miles and miles between us, we could feel everyone at home pulling for us and celebrating with us in your own little ways.  Please continue to pray! Even though the transplant is over, the hardest part is yet to come. Please pray specifically for Ariauna and that her little body can accept these new cells and that the cells will grow, grow, grow. Thank you from the bottom of our hearts for everything. (I apologize for such a long post, but I really want this day to be noted and journaled as it is a very important and special day for Ariauna and our family).