More information on the donor, blood transfusion and update on our week.....

This last week we did receive more information on the donor. The Minnesota hospital sent the letter on Monday with dates they would like to have the physical on the donor completed by and if they get clearance on the physical they listed the date they would like to have the harvest done by. (I actually have not been given the dates as they are waiting to hear back from the donor if those dates will work or not). We also got all the information that we are allowed to know about the donor. We have found out that this kind and generous donor is a 38 year old male from the United States. We are so excited and happy!! We are so happy that he is in the United States (more likely we will be able to afford to travel and meet him some day). I have thought a lot about this donor. He is the same age that I am currently. I wonder if he has a family of his own, I wonder what ever made him decide to be a donor. I look forward to the day I can sit down and write him a letter thanking him for being willing to help my little angel. My heart is full tonight and every day when I think about this donor and the whole Be the Match donor registry and how lucky we are to live in a world where there are still so many people willing to help each other. I thank my Heavenly Father everyday for the angels in my life. And I would have to say this wonderful donor is high up on my list of angels. While I was talking to the Minnesota hospital, I questioned them if the donor will actually donate at the same hospital Ariauna will receive the transplant at and they explained that they can not be at the same hospital. So I asked her if the bone marrow will be frozen then and she said no, they like to use it as fresh as possible. So the donor will actually donate on the harvest date at the local hospital nearest to him and then they will transport it that day to Minnesota and then they will do the transplant on Ariauna the next morning. So it is all done within a 24 hour period. So right now we are just waiting to hear back from the donor if the dates work for him we should be getting an answer if the dates work for him any day now. If the dates work, then he will go ahead and work on getting the physical done and if he gets clearance on the physical, then Ariauna and I will have about 5 days to get there. They are thinking it will be somewhere between the 15-22 of July. So it is coming very quickly. We are getting very, very nervous but at the same time are praying the physical goes well and we can start the next part of Ariauna's journey.

Our week this week was a little more mild, as Ariauna needed another blood transfusion. Monday we were having a lazy morning when I got a text from our dear neighbors- the Kings asking if they could kidnap the kids. Austin was at an Order of the Arrow Scout camp so it was just the younger three. They wanted to take them all. So they came and picked them up about 10:45 and took them to see the new movie "Monsters University" and then they took them to lunch. It was kind of sad to watch them drive off with all of my little ones. I ended up running some errands while they were gone (I should have taken a nap), Oh well.  Monday afternoon, Ariauna's school tutor came by to check in on her and to see how we were coming along on her homework.  

Tuesday was the big day. We headed out for her 4th blood transfusion. Another dear friend of ours Sheri Whiting took the younger two for a play date while we spent the day up at Primary Children's hospital. I am very grateful to her for helping me out. No one except the patient is allowed in the Bone Marrow and Blood Unit so it was just Ariauna and I hanging out all day. This is the first time we have actually been to the clinic at PCMC as her other transfusions were while she was inpatient. The first thing she did was pick a hat off the hat tree.  They have a tree full of hats and the children can pick one every time they come to clinic. As you can see there are a variety of hats, anything from baseball caps, to sun hats to crocheted hats. Ariauna chose a really cute blue crocheted hat with a red flower on the side. It was very cute.

Next we were taken to a room where they had the Doctor and the Nurse Practitioner come in and check on her. They did a check up on her and drew her blood so they could do a blood typing, blood cross and match. Then we had several people coming in and out of the room for about an hour. We got to meet the clinic child life specialist who helps the kids not feel anxious and nervous during their stay in clinic. 

While we were in this room the child life specialist actually brought in a duffel bag that said "Monkey in my chair" on the side of it. She opened it up and showed us everything inside. The Monkey in my Chair program was set up and started by a family who's child had cancer and was going to miss school for quite some time. In the duffel bag is a BIG Monkey with long arms and legs and the monkey is meant to go to school in place of the child and sit in the child's chair while the child can not be at school. There is a book that the teacher reads to the class that explains the monkey and why it will be joining their class. There is a book just for the teacher too that explains the program and its purpose. There is a disposable camera that goes to school with the monkey so the teacher can take pictures of the monkey and what it is doing at school and hopefully get some pictures with the monkey and some of the class mates. Then there is a small monkey that comes in the duffel bag too, that Ariauna can take with her to Minnesota. It is a very cute program and brought tears to my eyes when the child life specialist was telling us about it. So we got on the Internet right then and applied for Ariauna to get a monkey in my chair. We are just waiting to hear if Ariauna will get the offer for free in the mail or not. You have to send in your information with the hospitals information and the doctors information and what the diagnosis is of the disease the child has. Hopefully, one of these days we will get a duffel bag in the mail. Ariauna would be so surprised. We were then off for a lunch break. It takes awhile to get the blood typing/matching done and for the blood bank to get the blood to the hospital. So they told us we could go get some lunch if we wanted to. So we headed off to the cafeteria, got our food and then headed back up to the clinic. They got us all settled in the transfusion area. This is where they do transfusions and chemotherapy on the kids. 

It wasn't long after we got our lunch that the blood came for Ariauna and they got it started. Here she is just after they started the transfusion.

While the blood was running we were lucky enough to get the child life specialist to ourselves for awhile. So she actually started Ariauna on her "Colors of Courage" necklace. It is a necklace that tells Ariauna's story. There are specific beads for all of the things Ariauna has endured (biopsy's, surgeries, PICC lines, blood transfusions, feeding tubes, life flight, long distance travels, diagnosis, holidays in the hospital, etc.) It is a very cool program too. Ariauna's necklace is already huge and she has quite a ways to go on her journey still. I will try to get a picture of her with the necklace for my next weeks post. It is really neat and tells a good story. After working on her necklace the Child Life Specialist got out one of Ariauna's favorite things to do..... Shaving Cream.....

No this is not something she learned at home. This is something they let her do at the hospital and she loves it. She did that for awhile and then, well..... the Tylenol and Benadryl they have to give her because she is allergic to blood transfusions started to kick in on her and she became sleepy. So then she took a rest and we turned on a movie and she had a short cat nap. They had actually just finished the blood transfusion and was just watching her for a 1/2 an hour after to make sure she continued to do well when she decided she needed to use the restroom. She got up and went and when she came back, she was trying to climb back up in the recliner and climbed on the foot part and it went down and she fell. She fell between the reclining chair and the metal movie stand that was holding the TV/DVD player. She immediately began to cry and she immediately started to bruise. Oh no, not what we needed. They immediately got nurses over and got her bags of ice to put on her. Her side by her ribs got the brunt of it but she hit her knee and her back too. The bruising was immediate. The staff told us we were not going anywhere right now. We got Ariauna all tucked in the recliner with ice and then they started researching her blood counts from earlier this morning. They said they could not let us go home until they ran another platelet count. They needed to make sure that her platelets were above 20,000 so that she did not end up getting a hematomin under her skin. It was scary. Here is evidence as to why the doctors do not want her riding her bike, scooter, jumping on a tramp, etc. These pictures were actually taken a couple of days after the fall. 

Poor girl. Her side was the worst and it was very sore all week. I am glad it happened at the hospital and not at home. They actually ended up having to fill out an accident report and everything.  Luckily her platelets came back at 27,000 and we were able to come home. Our appointment this morning was at 11:00 and we did not leave the hospital until 6:00 p.m. Boy were we glad to get home.  We then went and dropped off a birthday gift to our dear neighbor who turned 40, we won't mention any names...LOL....

Wednesday Ariauna was feeling super good. In fact I forgot to mention how 15 minutes into the transfusion and her face was already much more pink and she looked so much better and not so ghostly. And have I mentioned lately that she is always smiling too?  She is the happiest girl I know and I am so grateful for her and her beautiful smile. So we decided to meet up with our friends from Levan. They met us at Hollywood Connections to use our pass of all passes again. I didn't think we would get to use our passes much this year because of Ariauna's situation and the fact she can not swim right now. But it has been fun to be able to use them at Hollywood connections a little bit. Here Ariauna is enjoying some fun with some more of our family friends- The Jeppson's.

I don't usually like posting pictures of me on the blog, but I know someday Ariauna will want to see me in the pictures too. So here is one of me and my dear friend Lisa. I want to put this picture in with a note that she brought me another $660.00 cash today which is a continuation of the fire cracker wood crafts she was selling at the carnival. She posted it on Face Book  and got over 50 orders from people who wanted a set. She has been crazy busy painting her heart out to help us and Ariauna to "Go, Fight, Win".  I can not thank her enough for all she has done to help our family. I still continue to be amazed at the donations we still continue to receive from people all over the world who want to help us and our little girl. Thank you, Thank you to everyone! (The picture of the firecrackers is not exact, but an idea of the one's she has been making, 50 plus sets, that is an awful lot of red, white and blue).

Thursday we had another play date with the Brinkerhoffs in the morning and then the girls were just dying to go spend their allowance on this really cute new born baby doll. Here they are with their twin girls. 

It has been miserably hot here this last week. We have had days it has gotten up to 105-106. So the best time to go outside, especially for Ariauna is about 9:00 at night, and it isn't long after that it is dark. The kids have had fun this last week playing in the sand box, taking late night walks and helping daddy in the basement.

 Friday we just hung out at home during the day, Ariauna went to a birthday party for her friend Maddie and then we went to the movie at the park and watched Hotel Transylvania. It was a lot of fun. Here is Ariauna and her friend Maddie.

Saturday we were just busy in the basement, cleaning house, and doing laundry. Our Austin finally came home from Scout camp we have missed him tons as he has been gone almost 2 weeks straight and then Saturday night we had a family party. This will probably be the last big family party with my family before we head out. It was a lot of fun and Ariauna had a blast. We had a BBQ and played water games.

I know it is hard for most people to look at all these pictures I am posting and understand that there is really something wrong with our daughter. She looks so healthy and happy in these pictures. Unfortunately, (well maybe it is not unfortunate) you can not see what is wrong on the inside of her and that her body is not producing the bone marrow she needs to stay alive and to keep her from getting all sorts of other cancers and sickness'. I know these happy, fun, playful pictures are soon going to be Ariauna laying in a hospital bed, struggling, and sick. I hope each of you are enjoying the fun pictures, seeing her enjoy life to its fullest while she can. Once her journey begins it will be a long time before she gets to see our family, friends, loved one's. It is going to be a long time before she gets to play in the sand, jump on a tramp, go to a birthday party or a BBQ. Even though I would love to get on with our journey, I too can not help but be grateful for the little bit of extra time she has gotten to have at home with her best of friends, with her family, her cousins, and that she has been able to enjoy a little bit of good weather and summer vacation. Today I am grateful for so many things. I am so grateful for Ariauna. She is a brave and courageous little girl who always has a smile on her face. She teaches me so much and I am honored and blessed to be her mom. I heard some other really bad news this week from a dear friend about her mother in law and about a tragedy of a cousin of mine. I have had a lot of time to think about both of these situations and the situation I am facing myself and wonder sometimes if the world could be getting closer and closer to the end. The scriptures tell us that there will be more turmoil, more sickness, and more disease. Now I am not going crazy and saying that the world is going to end tomorrow. But it sure seems like there are a lot of things going wrong lately, It seems like since we lost Jerry's mom in December to liver cancer that we just continue to hear about more and more sickness and disease. Maybe it is just because there are so many things happening to people I know, or family and friends that I know, but it seems pretty scary at times.  I am grateful for the knowledge of the gospel and for my Savior Jesus Christ, I am grateful to know he is there for me and that he loves me. I can feel him each and everyday carrying me along. My heart, love and prayers go out to others who may be suffering right now too. May the Lord bless each of you in your time of trial and sorrow. Please continue to pray for Ariauna and the donor that is trying to help save her life. We still need prayers that everything will go okay with the donors physical and that we can get Ariauna on her way to transplant.  I will post as soon as I get more information. Lots of love to you all!