Inpatient Day -6 Radiation Day

WBC (White blood cells)- 2.1
Hemoglobin- 8.7
Platelets- 18
ANC- 0.3

I am going to start off each blog post now with Ariauna's current blood counts for those who are following what her labs are doing, which after transplant will be a HUGE deal.I will do a quick explanation again of the blood counts, what they are and what normal rates are for those who are wondering. White Blood cells are what help your body fight infection. A normal range for a healthy person is 5.0- 14.5. The Hemoglobin is the red blood cells, this is the number that is followed to know if and when she needs a blood transfusion. A normal range for a healthy person is 10.5-14.0. Just as an FYI, at home they were currently letting her Hemoglobin get to 6.5 before doing a transfusion. This hospital stay and during transplant they will only let her get down to 8.0 because she will be so sick they will not want to stress out her heart. So they will want to make sure there is enough blood to give her heart the oxygen it needs to not get stressed out. Platelets are what helps your body clot blood, not bruise, and not bleed easily. A normal range for a healthy person is 150-450. During transplant they will only let this get down to 10.0 before doing a platelet replacement. And last but not least is the ANC which is part of the immune system that also helps to fight infection. The range for a healthy person is 1.3- 8.1. This is the number that at home they liked to see it at 0.5 (500), she was getting down to the 300 when we first got here so they had put her on a antibiotic to help her body fight infection. She will continue to be on that during transplant. This is the # that they will be killing off to 0.0 during transplant. And then will wait days and days for it to start going up. She will be on medicine to help that, but it can still take awhile. This is the number that determines when she will be allowed to go out of her room. That number has to be 0.5 for 3 days straight in order to just go for a small walk in the unit with a Hepa filtered mask and will need to be much higher than that to get out of the hospital.

So today we woke up about 7:30 to nurses and staff bringing in about 5 syringes full of medicine to take by mouth. They also gave her some zofran (nausea med) through her line to help so she does not get sick during radiation. We ordered her breakfast so she could eat before going down, she wanted froot loops and a chocolate milk to drink. Crazy girl. It was about 8:30 when there was a knock on the door, it was one of the doctors inviting me out to join them in rounds. Wow, let me tell you how scary that was. If I could get brave I would take a picture one of these mornings so you could all see. It was right outside Ariauna's door in the hall and there stood about 10 people in a 1/2 circle all with their rolling computers. It was enough to scare the crap out of you. There was several different doctors, nurses, nutritionist, and pharmacist. They quickly go over Ariauna, why she is here, what her labs all show, what the plan is for the day and then they ask me if I have any questions. I address those and then they move on to the next room. Then a bit later they have in patient room rounds where about 4 doctors/nurses come in to the room, exam Ariauna, ask if we have questions and visit one on one with us. This week Dr. W. Miller is the doctor inpatient and I am very impressed so far. The only thing I brought up this morning was just how nervous I am about going forward after visiting with the other mom last night. I told the crew that I just needed more reassurance that I am doing the right thing for Ariauna at this point in her life. Dr. Miller was awesome at addressing my concerns and issues. See previous post.  Here is Ariauna having her morning vitals done with her nurse Jenny. Jenny is training with the nurse Rachel.

Ariauna was scheduled for radiation at 9:45. Amy- the awesome Child Life Specialist on Unit 4 BMT came in to see Ariauna. She talked to Ariauna about the Hepa filtered masks and explained why Ariauna will need to wear this special mask from now on anytime she leaves her room. She explained how her immune system will be down to 0.0 and that this mask will help protect her from any germs that may be in the air. Here is Ariauna and Amy posing with their masks on. 

Amy had also already asked Ariauna if she could take some pictures of Ariauna to use to show other patients in the future how you do radiation standing up. Child Life has a binder of pictures for every test, scan and procedure you can imagine. Well I guess they do not very often have children who stand to have the procedure done. So we signed a consent form to take pictures to put in the binder for children who will need to stand for radiation in the future to see what happens during the radiation time. Ariauna already loves Amy and gets so excited every time she gets to see her. Amy stepped out and made a perfect fitting mask for Ariauna's doll "Kit". Amy said if Kit was leaving the room she needed a mask too. Ariauna was scheduled for radiation at 9:45, so the transportation crew came and picked her up about 9:15 to take her down.

 Amy went down to radiation with us and stayed for the first half. It was so sweet of her, and made Ariauna feel even less worried. When we got down to radiation we found the nurse named Joy, we had met her previously in our work up week a few weeks ago. Well she remembered Ariauna and Kit and so as soon as we got down there, she asked Ariauna if Kit was going in with her for Radiation and Ariauna said yes. So, Joy had already made a perfect fitting radiation vest for Kit. (she said she made it last night at home and used her daughters American girl doll to get the fitting just right). This staff is unbelievable at making things so much easier on Ariauna.

 So with Kit all ready, we headed into the radiation room. We met the radiation team and they started getting Ari all set up to have the x-ray done on her back. They do an x-ray to make sure they have things placed just right. Ariauna seemed at bit nervous at first but quickly was smiling and laughing with the team down there.

 Here is Ariauna and Amy all ready to have the back x-ray done to make sure things are lined up just perfect. Then they slide the shield wall in front of Ariauna and we all stepped out.

 The x-ray takes just a few minutes to snap and then we were allowed back in the room to be with Ariauna. They have a room just outside the radiation room that we can stand in and actually see Ariauna on a camera and we can talk to her the whole time she is in there.

 Here is Ariauna and I just waiting for the x-ray to make sure it is perfect. I was a bit teary and on the verge of tears during the whole procedure. It broke my heart to be there watching my poor little girl go through something like this, knowing it is going to make her very sick. It was overwhelming to me to be in there, see the group of doctors, nurses, staff and to see all the big scary equipment. I can not imagine what Ariauna must be feeling and yet, she puts a smile on her face and does it. Why? Because she wants to get better, she wants to run and play, she wants to ride her bike, she wants to do all the fun things that kids get to do. I am so grateful for her courage and example to me. She helps me to be strong and brave too.

 Here they are getting her all set back up to do the actual radiation on her back side. Once they kicked us out the radiation was only 6 minutes on each side. It took a lot longer to get everything set up and perfect for where it needed to be.

After the back then they went through the whole procedure again. Got her all set up to do the front, took an x-ray, waited to make sure it was perfect and then did the radiation for 6 minutes on the front. We had taken the movie Princess Bride for her to watch during the procedure. She had never seen that movie before. Here she is ready to have it done on the front.

 Ariauna did amazing. She was so strong and brave. I am so proud of her. She looked a little worn down right after. It took about 1 1/2 hours for the whole procedure to be done. Before we left they gave her this certificate signed by the staff with well wishes and it is proudly hanging on the door inside her room so she can see it.

We went back up to her room and got her back in bed. She took it easy for awhile and then she ordered lunch. She wanted a cheese pizza with fish crackers and a cookie. She actually ate all put one piece of the pizza, I was surprised she ate that much. That afternoon one of the volunteers from Care Partners (an organization that has volunteers on the floor that can help if I need to leave the room or go anywhere. They also have an outside family volunteer that they can assign to our family that can help us get people from the airport, take me to a store, help with Ari or other siblings.) came by with a welcome bag from the organization. It was huge and was full of so many fun things. It had information about the organization and a cute butterfly pin with a note about how just when the caterpillar thought the world was coming to an end, it became a butterfly. And if you notice the new fleece blanket is butterflies.

About 3:00 Amy from Child Life popped back in, she had promised Ariauna she would come around some time today to help her dye her hair. About the time Amy showed up, Ariauna started feeling really sick to her stomach. She was in tears and was crying because she didn't feel good. I almost thought we would have to cancel with Amy doing hair, but then the nurse came in and said she could actually have more nausea medicine. So they gave her some more of that in her line and it wasn't long and she was back to her happy self.  Here is Ariauna and Amy doing the hair dye. Amy was smart and got her and Ariauna all dressed up in the chemotherapy attire so they didn't get any hair dye on their clothing.

She ended up doing pink on one side, blue on the other and purple in the back. She just did streaks though because Ariauna wanted some of her hair left blond. And then the best part was at the very end, Amy told Ariauna she would let her do a small strip of her hair purple. Ariauna thought that was so cool that Amy let her do some of her hair. Amy did wimp out and only let hers stay in for a minute or two, we left Ariauna's in for the full 20 minutes and then we rinsed it out and gave her a shower. Here is the end results.

I think it turned out really cute and  she absolutely loves it. Later this afternoon evening the book cart came around and the lady said she heard Ariauna liked the Twilight series and she had the Eclipse book, so Ariauna chose it. That is going to take us awhile to read, but we started it right then. I ended up signing up to have one of the Care Partner volunteers come in to sit with Ari tonight while I ran back to the Ronald McDonald house. I decided I should go back and get her Bone Marrow Birthday present we bought her, in case she is not feeling very good later in the week. While I was at the RMH I got dinner and also took a container of leftovers for lunch or dinner tomorrow night. That is what our social worker told me I should do, just to try to save some money on food. I also got all the food in our fridge at the RMH that will go bad and packed it back to the hospital and put my name on it so I can have it for breakfast, lunches and dinners. Buying food at the hospital is so expensive and adds up very fast. The RMH was having a big State Fair party tonight so I got a couple of the fun party boxes they were giving out and took them back to Ari. When I got back the Care Partner was still there. Ariauna had fun and said she wanted "Beth" to come again sometime. She had brought one of the Little House on the Prairie books with her and they talked about how a lot of those stories happened right here in Minnesota. They played the game garbage and Beth won Ari. They had a great time and I was very appreciative of her help. Ariauna did a few more crafts this evening and then our cousin Camilla skyped her so they skyped for awhile, then she skyped Ashlyn W. at home and Maeghan at home. It was so good to listen to Ari visiting with her cousins and friends, she was so happy and enjoyed skyping with each of them.

Tonight will start the beginning of our week of really long nights. Starting tonight they will be putting Ariauna on a ton of IV fluids. The chemotherapy that she is going to start tomorrow is very hard on the bladder. So they do not want it to sit in the bladder at all. They will be giving her a medicine that will coat the bladder and then all of these IV fluids that will make her go to the bathroom. Hoping the fluids will help push stuff through the bladder and not sit in the bladder. Tonight she can just get up as she needs to go, but tomorrow once the chemotherapy starts, she has to go to the bathroom every 2 hours no matter what, even during the night. So if she does not get up to go on her own then the nurses will be in to wake her to make her go, and if she doesn't go willingly, then there is a medicine they can give her that will make her go. So this could be a long night. Wish us luck! Thank you for the continual prayers, we are definitely going to need them this week.