It’s been a whirlwind of a year and at the same time it’s seemed like an eternity and almost impossible at times. Spring has been a much better time for us as a family. Since the last post in April we have had no inpatient stays. Audrey has fought hard ending up in the ER a few times but the doctors felt it would be better to be at home than inpatient given her counts at the time. Since we haven’t been spending as much time in the hospital and Audrey has been feeling better this has given us time to play, live and enjoy. We still have our hard moments but they are fewer and farther between.
In April Audrey had been asking to go to the park to play for months. She so badly just wants to be a normal kid. But her counts being low and the germs at the playground weren’t worth risking it. Well now that she has been doing better we have been venturing out a bit more. She got a nice hour of play in before she got tired and was ready to go. It was the most we had seen her active in a long time. After the park she decided she wanted watermelon ice cream. After scratching our heads for a few minutes and Melissa searching the internet we found a place that makes ice cream with liquid nitrogen called Sub Zero and watermelon was one of the flavors. The really nice staff made our ice cream then showed us a trick they can do with a water picture and some cool liquid nitrogen. Cole and Audrey had fun playing in the mist and Audrey said it felt funny on her head.
When we aren’t out and about we have just been enjoying watching Audrey’s personality come back a bit more every day. She still has her hard days when getting treatment or having to be at the hospital for one test or another but her fire inside continues to burn brighter. We even made it out for a little mini-golf and she hung in pretty well. She was wiped when we got done but it looked like she had fun.
It was then time for our trip back to Houston for a checkup with the radiation oncologist. Because we continue to be a team of 4 fighting the battle we knew we had to take Cole even though he would miss a few days of school. The flight down went well and the flight staff was very good to us and loved on the kids. Audrey of course ate them up sporting her Princess Sofia crowned head phones. While we waited for our appointment the kids got to play in the playroom waiting area where we spent every week day for 2 months during our daily radiation. They really enjoyed being back and visiting with all of our new Houston friends. The checkup went well and the doctor helped point out things we will need to watch for going forward such as growth and IQ issues due to the amount of cranial and spinal radiation she received. Something she pointed out that was in our favor is the tumor started in the lower back not the brain so the extra powerful burst that were done the last week were not to the brain. Since we were staying in a hotel and had the afternoon free I took the kids over to the Houston Science Museum. Somewhere I wanted to go while we were there but it just never happened. It you ever have the chance to go stop in it’s an amazing place. That evening we got a chance to see one of the families that we had met while in the Ronald McDonald house and have dinner with them. It was great to visit with them as well.
The next day it was time to fly out but not before stopping and having lunch at our favorite spot in Houston called Little Matt’s. Jim Reid is the owner and his son has fought cancer a number of times. They truly understand the toll it can take on the family. When we walked in the door Jim happened to be there to meet us. He introduced himself as the last time we were there we had met his manager not Jim. After introducing himself he told us that he was excited for us to come in and he was taking care of anything we wanted today. He gave us drink cups and even went to the register and got quarters for the kids to play games. We were meeting some close friends we had met that were still staying at the Ronald McDonald house for lunch. While we were eating Jim came out and talked with us a bit and just listened and encouraged. As we have learned this journey really distills our character and in Jim it shines through. The trip home was uneventful minus the wonderful flight staff that again loved on the kids bring back first class snacks and cookies for them.
The rest of May went really well. Still getting chemo treatments but still finding more time to play. Audrey had been begging to go swimming and it was finally getting warm enough and our nice neighbors as always are happy to accommodate her anytime. We also started planning our first camping trip of the season and our first chance to get away that wasn’t medical related since late last summer. My friend and I took our kids with us on the scouting trip to find the perfect place. While we were up there we went on a short hike to show him Potato Lake a place we had found on our last trip. Being a dad I didn’t think to bring everything that was need such as a hat. Put what I lack in planning I generally make up for in resourcefulness. It was the spare pants to the rescue. She said she liked it because it was like she had hair.
The last week of May we finally received our last round of one of the more intense chemo combinations. We are finally in the home stretch! That was good because we had a lot planned for the memorial weekend and the week following. We started the weekend off with a few friends over for dinner on Friday, then we went over to some friends to swim on Saturday. Sunday we had Gramps over for lunch and I got to go watch some drone racing. On Memorial Day Javier from the Houston Astro’s set us up with Tickets to the Diamondbacks Astro’s game and even got us on the field for batting practice. We also hunted down Baxter the Diamondbacks mascot to get a picture so we could send it to Audrey’s buddy Clark the cub. They still continue to send emails and videos back and forth. We had such a great time at the game.
After the game we came home and loaded up the trailer as much as we could and got set to go camping. The next morning we got up really early and finished our preparations. There was only one unusual hurdle we had to get over before heading out of town. We had an 8 AM doctors visit at the hospital to make sure the chemo from the week before hadn’t dropped her counts to much. So we loaded up with the camper in tow and stopped by the hospital. We got the green light from our doctors and we headed straight from the hospital up to the rim. We weren’t sure exactly where we were going to camp but we knew it had to be high in elevation as the weekend weather was calling for 118 in the valley. We found a nice little spot near the rim and settled in for 5 days. On Saturday we packed up and started heading home. The camper worked perfect and we really enjoyed our time up north but were very much ready to be home.
We had to head down on Saturday because Sunday was cancer survivor day and Cardon Childern’s had rented out Amazing Jake’s and had a bunch of special guest attending. We got there right at 8 when they opened and they had all the video games on free play and all the rides running for the kids. We played games, drove go-karts and bumper cars and rode a few rides. Audrey was all over the place getting loved on from her Cardon family. They enjoyed having their families get a chance to meet her. And of course there were the mascots. Audrey got to meet Sparky from ASU, Big Red from the Cardinals and Howler from the Coyotes. After meeting all of them she danced the rest of time until she looked up and told Melissa she was too tired to dance anymore. Melissa picked her up and she just cuddled in for a nap. It was such a great event and truly awesome to see all the families that are fighting harder than anything they have ever done get to just smile and enjoy the morning.
This week Audrey started her first of 2 more week long chemo’s. It was a long week for her and Melissa as they spent a lot of time at the hospital. But since her spirits and energy is up they had a lot of fun as well. She also started attending preschool at the hospital 2 times a week one on one with a teacher for the summer. She is super excited to get to go to school and I think it’s because it makes her feel more like the other kids. The picture in the pink cape is while we were waiting for her teacher on the first day. I think she was excited.
Tomorrow will mark the one year mark since Audrey was diagnosed with stage 4 rhabdomyosarcoma in her nervous system. It’s hard to believe she has been fighting this hard this long as she is still as sweet and tenacious as ever. While we were at the survivor party I took this picture. It might be my favorite so far. It really sums up her character. When I looked up the word survivor one of the definitions is “a person who continues to function or prosper in spite of opposition, hardship, or setbacks.” No matter what the outcome is in the long run this girl has and will impact, inspire and touch people in ways no one can yet understand. As we start to see the cancer fight slowing at least for now we look forward to many more amazing memories every day.
One thought on “A year in treatment”
Always in our thoughts and Prayers. I recall the first morning we met while in the kitchen of the RMH. I was baking the muffins. I quickly fell in love with you all and our friendship story began. Audrey of course cracked me up. And Cole….all I could think of was how I couldn’t wait for my husband to meet this awesome boy.(quad copter talk) I enjoyed our conversations with both you and Melissa. The most precious words of Audrey’s will stick with me always. I didn’t even get to hear the words. But it was when she was hungry before treatment one morning but couldn’t eat. Melissa had blueberry muffins to go so she could have some when she finished. Audrey had said to y’all, “can I just lick it?” From that point of me knowing what a warm muffin did, I promised myself that when I was at the RMH I would make sure warm muffins were made daily. It also began my own therapy and healing for our own family battle.
We have our separate battles but share the same battle ground. Through the outsourcing of love and Prayer pouring in, the bond of friendships made, we will all conquer together. No matter our outcomes, we have battled with faith and “survivor skills”.
Kat (The Muffin Lady) and Bryant Simon-Ronald McDonald family