I can’t believe it’s been six days since I last updated the blog. I’m sad it’s been so long and I apologize. I feel like my team has been left in the dark and I need to catch you up so we can continue down this journey together. First off, thank you for reading the blog. Thank you for caring and supporting Ashtyn. I am more grateful than ever that you are standing beside us. I know this cancer course would be completely different without you. We would be lonely and lost. Have you ever ran a race? Running a race is much different than running on a treadmill or outside on your own. During a race you have people on the sidelines cheering. There are other runners that inspire and motivate. The vibe of the crowd is uplifting and makes the experience enjoyable and fun. There are even pit stops to refuel. And there is a finish line where tons of people are cheering for the runners. It’s an awesome feeling. That’s how we feel with Ashtyn’s cancer. We aren’t alone. We have a crowd around us and it feels so good. Thank you. I plan to never go this long without an update again. Ashtyn has been home for 5 1/2 days, and it has been wonderful!

The day Ashtyn left the hospital I was uneasy about her going home. She was still being treated for C-diff and colitis. She had barely started eating after going without food for four days. It had only been five days since being in the ICU. What if her colitis wasn’t healed well enough? What if she wasn’t stable enough to go home? Her morning labs showed the biggest recovery of white blood cells yet. Her ANC went from 100 to 400. There were increases in other white blood cells, as well as her red blood cells and platelets. It was decided that, yes she was ready to go home. I had mixed emotions. Of course I wanted her to go home for obvious reasons. However I was also nervous. For the first three days of being home I took her blood pressure, temperature, and heart rate a few times a day just so I would have peace of mind that everything was ok.

Because she had only been eating solid food for a day, I asked if she could continue receiving TPN at home for two nights. I didn’t want to have to push her to eat 1500 calories a day if her stomach wasn’t ready for it. I knew the TPN would make up for the nutrients that she couldn’t quite eat yet. Along with TPN, she was sent home with an IV antibiotic and an oral antiviral medication. She was also given pain medications for her legs.

We got home at 3:30 p.m. Wednesday afternoon. She got out of the car and headed inside through the garage. Without much thought she stepped up the stairs that lead inside. Her legs could not lift her body up the stairs and she almost fell. Ashtyn was surprised that it was no longer easy to step up a stair. She has also had a lot of leg pain. She describes her legs as being achy, painful, restless, and unbearable if touched. I wonder if it feels like growing pains. Her bone marrow has had no white blood cells in it for 3 1/2 months. I wonder if her bones ache because of the new white blood cell production that is being added to her bone marrow. I am not sure the cause of the pain. For four days she took a pain medication every four hours. For the last two days her legs have had significantly less pain and she isn’t taking pain medication very often anymore.

We are both surprised at what little endurance and energy she has. For the first two days, she stayed in my bed all day. Friday I had her walk to the mailbox and back. Afterwards she was exhausted and took a two hour nap. By day three and four we made a bed on the floor in the living room so she could watch TV and be more part of the family. Today she was able to sit in her comfortable blue chair in the family room for a couple of hours. Before leaving the hospital Ashtyn was looking forward to making dinner every night and passing off one of her Personal Progress goals. The first meal she had planned to make was Hawaiian Haystacks. She couldn’t even get off the couch, “Mom, I don’t think I am up to it.” The second night she wanted to make homemade burritos. After cutting up a few black olives and a tomato she realized, “I can’t make meals this week.” She laid back down on the couch.

Whether from her chemotherapy or leg pain, Ashtyn legs have been very weak. The first couple of days she was not capable of walking around alone safely. Her legs felt as if they would just collapse from right under her. With each day her legs have less pain and more strength. She no longer has the rule that she has to have someone right beside her when walking. She is free to roam as she wants. However she does have a rule about running. No running! Yesterday she “ran” to the restroom and fell. It wasn’t a bad fall. She fell on my carpet and we had to laugh. Her brain forgets that her body can’t perform how it used to.

Medical management is going well. The first two days I attached a bag of TPN to infuse into her central line for 12 hours. She is now able to eat all necessary calories without having to use TPN. She continues to get an IV antibiotic every eight hours and an oral antiviral twice a day. A home healthcare nurse comes for labs and vital signs every Monday and Thursday.

We are so happy to be home.

From Ashtyn:

“The past few months have been the hardest I have ever had. Being in the hospital with very little break has been extremely hard and painful. As I prepare to go back to the hospital in about a week, I have been constantly thinking about how many blessings I still have and am gaining. I think about my family and how supportive they are. My mom has been my companion and best friend through this. My dad also helps me in any way he can. I’m so grateful for the timing this is happening. It is so much better to be in the hospital at this time of year, rather than the holidays and my birthday. I have so much to be grateful for. My friends, the awesome hospital staff, a great children’s hospital nearby, a living prophet, but one of the things I am most grateful for, believe it or not, is this trial. No way would I give this up for any other trial. I am determined to beat this cancer, hard. I will fight with all I’ve got. Am I scared for the bone marrow transplant or to go back to the hospital?? Of course I am! Absolutely! But God will help me and I am strong enough to handle it! I am so grateful God trusted me enough to give me this trial and I will be such a better person when I’m done with it! I will be able to help kids with hard times like this. I will be able to be grateful for every day and not worry about things that don’t matter. I can do this! With the help of my amazing family and army, I can accomplish anything and do hard things! Thank you for all your support. I give my love to all!”