Inpatient Day -5 Chemotherapy starts

WBC- 0.9
Hemoglobin- 8.0
Platelets- 16
ANC- 0.3
Weight this morning- 54.3    Weight this evening- 53.7

Our evening was pretty good last night. With all the extra fluids she is getting she was up twice to go to the bathroom but went right back to sleep. Our morning started bright and early this morning. The nurse came in at 6:00 a.m. and woke me up and told me that her labs were back from early this morning and her hemoglobin is 8.0 which is as low as they want it to get. So they were going to be doing a blood transfusion shortly. Because she is allergic to blood products they brought in her Tylenol and Benadryl to get in her system before they do the transfusion. It wasn't long and they brought in the blood and got her all hooked up. The blood ran for two hours and she slept through the whole thing.

Around 8:00 this morning they woke her up to give her all her medicines by mouth. She took again about 5 syringes of them. Today they started a new one that will help the acid in her stomach and if you ask Ari it was disgusting. She gagged and was not happy at all about that one. Shortly after that one she started feeling sick to her stomach. They also gave her Zofran for nausea and also started the 24 hour drip of Zofran that will stay hooked up to her line for the next four days. They also started her on a steroid today that she will have for 5 days. She was nauseated pretty much the rest of the day. It was kind of a downer day. She just wasn't her happy go lucky self. I know she is going to get worse and a lot sicker. She has these lights in her room that she can change depending on her mood. I need to go outside at night and take a picture of the hospital when you can see all the kids special lights in their room and the different colors. She has decided the rainbow light is when she is at her happiest. Red will be when she is mad, angry and just wants to be left alone. Blue will be days when she is down and sad. Pink will be days when she just doesn't feel 100% but isn't mad and angry or sad, she is just okay. Well today the pink light came on, so she said she is just okay. We tried to get her some breakfast but she wouldn't really eat it. About 8:30 the doctors came to do rounds so I stepped out in the hall. Not a lot new with Ariauna. They went over her labs and what the plan was for today. At 9:30 they came in with her 1st medicine for chemo (Fludarabine) that will run for a 1/2 hour. Right after that one they will run her 2nd chemo which is Cytoxan. Here is the nurse getting her hooked up to her chemotherapy. The nurse (Rachel) has to be in full chemo apparel in case their is a spill.

Ariauna slept an awful lot this morning. I think a big part of that was the Benadryl they had to give her. And when she was awake she had her little puke bucket  near by. Ariauna decided she wanted some mac and cheese for lunch. When it came she only ended up eating about 4 small bites. I am worried about her not eating much. I know that is all part of the process, but I was hoping she would keep her appetite this week. The nutritionist will continue to monitor what she is eating and when they feel like she is only eating about 1/2 of what she normally does then they will start the TPN and lipids (IV food). Later I went to the parent lounge and fixed myself a turkey sandwich. I guess that sounded good because then she wanted turkey and ate about 4 pieces and a bunch of potato chips. Silly girl! While I was out in the hall today, I came upon the cute little Fanconi girl that was here yesterday. I got brave and approached her and her dad. We had a great conversation. She is 5 years post transplant. I am so grateful to my Heavenly Father and for these little tender mercies. I know I needed to be in the hall at that exact moment to once again get reassurance that there are plenty of good outcomes with bone marrow and Fanconi Anemia patients. Thank you Lord, for giving me the opportunity to meet this sweet girl and her father. Later this afternoon Niki from Physical Therapy came by and worked with Ariauna for about an hour. She taught us some exercises that we need to do at least once a day and then she played a game called Hyperdash that makes her get up out of bed and move around the room to find different colored discs that she has to touch with the controller. She played the game about 6 times. She may not be the happiest girl today but she is still getting up and out of bed. She enjoyed playing with Niki and doing her exercises.

Because of the extra fluids she is getting she was going to the bathroom about every hour. So during the day today, they never did have to come in and ask her to go, because she had already gone. I am so glad she is using the bathroom a lot. I worry about it all hurting her bladder so I am grateful her little body is releasing all the fluid they are giving her and pushing that chemo through her bladder so it is not sitting in it. This afternoon we also had a volunteer come in that was inviting Ariauna to participate in a study. The study is to see if knitting can be a therapeutic activity while in the hospital. They will have 30 children do the study. 15 of them will learn to knit and will knit a dish towel and the other 15 will just do other activities with a volunteer. Ariauna wanted to participate so we both filled out the papers. They will either start tomorrow or Monday and we will not know for sure which group Ariauna will be in until the 1st day. She seemed excited to participate in it. After she left we got Ariauna up and in the shower and changed her bedding. While she is doing chemotherapy, she has to shower and change clothing and bedding everyday. Late this afternoon, Amy stopped by to check on Ari and she helped Ariauna make a confetti wand. Ari always enjoys when Amy stops in to see her. I always have to remind Ari that Amy has to visit lots of patients, not just her.

 After Amy left, Ariauna and I laid down in her bed and snuggled and watched "I kissed a vampire". It was a cute movie and had lots of music. Here we are all snuggled up watching the big screen t.v.

We both ended up falling asleep and taking a late afternoon nap. We woke up just in time to order dinner before room service quits for the night (6:30). Ariauna really did not want anything to eat. I finally bribed her to get a chocolate pudding. It took them an hour to bring it up and then it took her almost 2 hours to eat it, but she did finish it. She also had several saltine crackers through the evening. Ariauna spent some time making American Girl doll cards (from Mrs. Bressler) while I tried to blog :-)

Before we got all settled in we visited with Jerry and the kids. Jerry told me that the door bell rang earlier this evening and when he opened it there stood two little girls we have never met and their mom. It is relatives of the Harmon family in our ward. These two little girls had done a bake sale to help raise money for Ariauna and was dropping it off to Jerry. I just started to cry,  I am so amazed at the love of people who are so willing to help us during this difficult time. Jerry said there was well over $150.00 from two little girls that have never even met us. I also got a message today from a family that I used to babysit for (the Wrigley's) letting me know that their daughter and a friend were also trying to collect money for Ariauna. One of my dear friends Lisa set up and with the help of her family and friends held a fundraiser yard sale and they made over $750.00. Our sweet and dear friends in our ward who have already held a carnival and earned a lot of money for our family is again going above and beyond and doing a yard sale this next weekend. I continue to be touched by so many angels and I can not thank you all enough. You can not even imagine the burden we are going through, physically, emotionally, and financially. Things are tough, I am not working at all because I am putting my time and effort into Ariauna. So things are tighter anyways, let alone the medical bills we have coming in. Because of our late afternoon nap, Ariauna did not go to bed until 11:00 and I was up until about 1:00 a.m. trying to blog. I am now caught up so hopefully I can get on a better schedule and go to bed at a decent time. Hopefully our night tonight will go well, as the nurses will wake her up every 2 hours to go to the bathroom. 

Today I am grateful for:  A loving husband at home who is trying to do everything himself. I know his nights after work are exhausting. This week especially with all the back to school things going on. Angelic parents who are raising my kiddos at home and keeping them healthy and happy. Angels who are making my kids at home happy, helping them focus on other things. Angels that send me texts, emails, packages, notes to let me know they love us and are thinking and praying for us. The hospital staff here who are so sweet to my little girl and who go out of their way to make her happy. Angels who are continuing to try to earn and raise money for our family. God's tender mercies that help me to make it through each day. I have a lot to be thankful for and I am choosing to focus on my blessings not my trials. I can only hope and pray that those of you who are doing so much to help us are feeling blessings in your life as well. I am forever grateful  to each of you, May God bless each of you for all you are doing on behalf of me and my family. Sending much love from Minnesota.