Current blood levels and a bit about our week last week!!

So I will start off this post with Ariauna's current blood levels. She had her normal blood draw on Thursday June 6th and Primary Children's Hospital called us on Friday to let us know the results. Her Hemoglobin was 7.0 (last week it was 7.1). Yay, it only went down .1. Her platelets are 25,000 and her ANC is 500. The ANC is the fighting cells and they say anything under 1,000 is concerning but anything under 500 can be very scary. Well she is right at 500 so the nurse said that Dr. Eldridge was really debating rather to put her on another medicine that will help her body fight infection. She explained that no matter what she will be put on the medicine once she starts chemotherapy and is imuno suppressed and will be on it during treatment and for 6 months after she is no longer imuno suppressed. They are going to watch her this week, but most likely she will be put on it very soon. Primary's did get the consultation report from Dr. MacMillan in MN and so they will follow her guidelines which are to let her get down to about 6 1/2 on her hemo and 10,000 on her platelets unless she gets symptomatic or starts bleeding.

A lot has been happening so I will start off where we ended last time. Here are the kids spending some time together last Saturday. Daddy and Austin were at an all day Merit badge class and so we just hung out at home all day and the kids got the great idea to get out the easy bake oven.

Sunday the older 3 kids stayed home from church. Austin and Sadie had been sick for a week with colds, sore throats and coughs and even though Austin and Sadie tried to wear masks, they ended up sharing it with Ariauna. So they stayed home and then we spent the afternoon cleaning in the basement. Tuesday Ariauna had her pizza party with Mrs. Weston and her friends in her Special Ed group. We also had appointments today for Austin to have a physical done for scout camp and for Sadie to have a wart removed off her thumb. While we were at the pediatricians office I asked him about Ariauna's lips. Over the weekend last weekend her lips started looking really cracked and dry so we started putting a lot of chap stick on to make sure they were staying moist. By the time we went to the doctors on Tuesday they were starting to get huge blisters on them and they were looking horrible. We have tried to be so careful not to let her be in the sun, so we were not sure how she had gotten these.

Our pediatrician said it looked like a virus to him or fever blisters. He prescribed a medicine to take to help it stop. I was nervous to start her on anything without talking to the MN team, so we had the prescription filled but waited until morning to call and talk to the team in MN. I called them first thing Wed morning to see what they said.  They said it definitely could be a cold sore virus or fever blisters but then she asked me if she has had redness around her eyes and I said yes. I figured it was just from the heat or a little bit of sun from the car to the house, etc. She said most likely she is having an allergic reaction to the Vfend fungal medicine she has been taking. Poor girl. She said they would treat it the same way so it was okay to start the medicine from the pediatrician. But she is also going to stop the Vfend for awhile. She is going to take it off of her while she is taking the new medicine and then they will call me in a week and see how she is doing and if she is doing better than they will most likely start her on a new anti-fungal medicine. The bummer is that all of the other anti-fungal medicines are not as strong as the Vfend so she is probably going to take it until we go in to the hospital and then they will most likely have to give it to her through an IV during treatment and for awhile after to make sure there is no issues with fungal stuff. As if this poor girl has not been through enough. Here is another picture of her later in the week, and how miserable she is. She lived on Tylenol for 3 days around the  clock because she was in so much pain with her lips.

She is not going to be happy I put this picture on the blog. But I told her she needs to be able to see it some day down the road and the yucky stuff she had to go through. Her lips actually look even worse than this right now. Pretty much her whole bottom lip is one dark, bloody scab. We have tried so hard to get rid of it. We have put vaseline on because some say it helps to keep it moist, but then we wonder if it is just making it blister and seap blood. So then we have tried to just let it air dry and hope it will just heal on its own. I will have to try to get another picture. Poor girl. She has now been off the Tylenol for several days so I know she is not in as much pain, but it still doesn't look very good.  Wednesday Ariauna and Sadie had been invited over to Meaghan Mason's house for a play date. It was really nice of them to invite Sadie over too. The girls had a blast. LeeAnn had a fun afternoon/evening planned out for them. She always does so much to make the play date extra fun.  Here they are making icecream cone cupcakes and then LeeAnn asked what Ariauna's favorite food was and that is what they made for dinner. They even got a little bit of time in for playing. Thanks again Mason's for an extra special play date.

              
             
              
                     
Thursday Ariauna's home health care nurse came and drew her labs and it wasn't very long after that, this is what I found. I got really worried, because Ari has not taken a nap for a long time. So I figured that blood draw had probably just sent her over the edge.

I was definitely surprised when they called and said her blood levels had only dropped .1 from last week.  Lately, the thing I hear the most around our house is how bad life sucks. And that life is not fair. It has been really tough on Ariauna not to be able to be out in the sun. The anti-fungal medicine she is on, she can not be in the sun at all. I had promised her I would let her go to field day at school, but that was before she was put on this medicine with these restrictions. So she had to stay home from that. She was also told by the doctor in MN that she could not ride bikes anymore, scooter, jump on the tramp, basically anything that she could get hurt doing, she shouldn't do. And it is because of her blood levels. If she was to fall while riding her bike, it could be very serious and she could end up bleeding to death because her blood and her platelets are so low. So to say the least, she definitely feels like she can not do anything and that everything that is fun has been taken away from her. I feel so bad for her and really worry about what it will be like after transplant, because if she thinks it is bad right now, she will not be able to do anything at all for awhile after transplant. I have been trying extra hard to focus things on her and doing extra fun things that she wants to do. So she had been dying to get wet. She can not swim in a pool because of her PICC line and because of sickness' in a pool. But Thursday afternoon when the sun went down on the one side of our yard and it was shaded thanks to our neighbors house, we put on a sprinkler and they had some fun that way. We just got her rubber cover for her PICC line and she had a blast.

                                      
                                      
                                                
Friday we spent all day cleaning so we could have our special party we had been planning. Austin was at a special scout camp and so we decided to let each of the girls pick two people to invite over for a camp out. So Ariauna chose her friends Maddie and Meaghan that have been having her over to their houses a lot lately and Sadie had Sariah and Camilla over. We started the night off with them giving each other manicures and pedicures.

                                      
Then we had pizza and bread sticks for dinner. It was a good time to come in and cool down. It was so hot outside today, I think it is one of the hottest days we have had so far.

                                      
                                      
Then we had a crazy golf competition. We let all of the girls have a few rounds of practicing throwing the crazy balls. Here we are having the competition, and the winners were Sadie, Sariah and Camilla.

                                                
                                               

Then we got out the game of spoons. The girls absolutely loved it and we played it over and over and over again.

                                      
Then came Ariauna's favorite part of the whole party.....Croissants on a stick. This is definitely her favorite camping treat. I don't think most of the girls had ever done it.

                                     
                                     
                                      
We ended the night in the tent watching movies. Our first sleepy head fell asleep at 10:45 and the last one fell asleep at 12:30 a.m. We did all get some sleep though, and they all had fun and that is what counts!

                                     
                                     
                                     

We were up bright and early the next morning, I think the first one's were up about 7:15, we had everything cleaned up, breakfast done, and the tents down before 9:00 a.m.  Here was Daddy and Jaxon by their little tent and the girls all posing for one last shot.

                                     
I am so grateful for each of these cute girls. We had an absolute blast having a girls night and I am so grateful for these little friends of Ariauna's and for their mom's allowing them to come over. They have had numerous play dates and I can not thank them enough for making this last little bit of time Ariauna has at home before our next journey lots of fun. Thank you, thank you!! We spent the rest of our day Saturday cleaning and celebrating our cousin Mia's 5th birthday and then today we went to a Farewell for our favorite baby sitter we had when we lived in our old house. Crazy she is old enough to go on a mission. She is going to the Netherlands. We spent the rest of our day today cleaning in the basement. It is almost empty, yay!!!  We'll hopefully we will get some news from MN in the next couple of days. I will post as soon as I know something!