Rhabdomyosarcoma like all cancers is tough but it is proving to be tougher that we thought. As said in many of the other post we have had clean MRI scans since April. All of us including the doctors were pretty optimistic that we had it beat. One November 1st Audrey went in for her 3 month after treatment follow up MRI. We were shocked 2 weeks ago when the oncologist called to tell us it was back. The cancer had returned in one of the sites that it had originally spread to in the upper spinal cord. T3, T4 and T5 area. This area had shown to be more persistent than any of the other areas during the first treatment as well. It was the last to go away in the scans but had shown it was gone in 2 scans. Of course we felt like we had been hit by a truck again. A sucker punch in the gut from good old cancer! For 3 or 4 days we couldn’t eat or sleep just trying to understand it all and figure out what we were going to do. We already had a routine follow up with our doctors in Houston so we reached out to them for additional help with the cooperation of our local oncologist. We left Saturday for Houston as we already had our flights booked not expecting to be coming out for this. We were all setup to meet with our radiation oncologist, a neurosurgeon and our Houston oncologist Dr. Harrison.
We had reached out to a few friends before heading to Houston to try and connect while there. One of our friends invited us to an event she was volunteering at. The event was to celebrate the birthday of a child lost to fighting cancer and raise awareness. We got to hang out and play a bit and meet some new friends. Then we stopped at a restaurant we saw while heading to the event that looked about our speed. It was called Skips farm in Cypress TX. It had a fun playground in the back and food from a food truck. It was a happy place for me hanging out and watching the kids play. I struggled a lot looking over at her and watching her enjoy life as I was still expecting the worst when we had our appointment on Monday.
Since we came in on Saturday we had Sunday as a free day to go explore. In the 2 months that we had been in Houston last year we never made it done to Galveston and we had heard good things about it so we headed down there to take our minds off of the upcoming days. We found a nice restaurant to have lunch in right on the water. Then we decided to go for a dolphin ride. Again a brief distraction for the mind and a fun ride where we found smiles and laughs. After the dolphin ride we asked some locals where to find the beach. The pointed us to Stuart Beach. The weather was cool and so was the water but the kids just need sand to play in. Audrey found a fork and a spoon that instantly became their beach toys and they began to dig and have fun. They made sand angels and even pretended to dig in the sand. After dusting off we made our way to the playground on the beach and the swang until dark.
That night I didn’t sleep much again anticipating what the next day might bring. First we met with the radiation oncologist and she said that is looks suspicious and that since Audrey just finished her radiation right at a year ago there isn’t much option to safely give radiation at this point and she hoped the neurosurgeon could offer some options. Next we met with our neurosurgeon that had been recommended to use here in Houston. He looked at the images and felt very strongly this is a tumor as we suspected. He said on the good side it looks like a very wimpy tumor and he could biopsy it and try to remove as much as possible expecting good results. We asked what that meant for the cancer treatment going forward and so he called our oncologist to come in so we could all meet and decide if we wanted to do surgery. We all agreed it was the best option so we could verify the cancer type and remove as much as possible. Our oncologist said there have been a few effective chemo treatments for a recurrence of Rhabdomyosarcoma and he is most likely going to recommend a 10 cycle treatment which is 3 weeks per cycle. The first week is 3 chemos, then 2 the following and 1 the last week. Then it starts back the following week with all 3. As we see it now the 5 year survival odds are pretty low for Rhabdomyosarcoma that has come back after receiving the 54 week 6 chemo treatment and radiation. He also wanted a PET scan to make sure the cancer hadn’t spread anywhere else in the body.
We had Tuesday and Wednesday off from medical stuff as the PET scan was scheduled for Thursday and if it went well the surgery would be on Friday. As soon as we found out we were staying for longer that expected Melissa had a great idea to look on AirBnB for a place to stay. She found us a nice little duplex not that far from the medical center that was almost half of what we had been paying for the hotel and gave us a more home like feel. So that meant Tuesday was moving day. We got up slowly at the hotel and got packed up and headed over to the new place. The rest of the day and the next we just hung out and enjoyed the down time and time together before the scan.
If you have read this blog you have figured out I am a worrier and the upcoming PET scan had me on edge. I was very hopeful the cancer had not spread and that the surgeon could remove most of the tumor and give us an advantage. The day of the scan finally came and it all went well then we just had to wait for the results. Cole and Audrey had been asking to go to the Space center so we decided to do that as a distraction while we waited for the news. Cole, Audrey and I had gone last year while in Houston but when we went there was the left overs of a hurricane passing over and it was causing very heavy rain so we weren’t able to enjoy it as much and they had added the space shuttle independence exhibit since we were there last. We only had 3 hours so we stopped at the shuttle first. As we got to the top I got the call from Melissa that the PET scan came back clean except for the area in the spinal cord and it was only lit up dimmly. This was great news and the first of any good news we had had in a week and some. That meant the surgery was on. After seeing the shuttle we went on the tram tour and saw mission control, the space equipment testing facility and the last Apollo rocket before heading back to the house.
Friday came and it was time for surgery. We had a scheduled 1:30PM surgery so we got everyone up early and made breakfast since she wouldn’t be able to eat all day. We were glad we did as the surgery got bumped because of an emergency that had come in and needed the OR that we had been scheduled for. Finally about 5:30PM they took her back. She hadn’t ate or drank anything for 12 hours and didn’t complain once. The surgery lasted about 3 hours and the surgeon came out to talk to us. He said unfortunately the tumor was really sticky to the spinal cord and he was only able to get about 50 to 60 percent of it. He said he took the big parts he could then just spent the rest of the time scrapping and picking at it where he could to remove as much tissue as possible before closing her back up. The good news is she was stable and waking up and the getting in and out went perfect. I spent the night that night. She was in a good deal of pain and slowly weaning off the surgical pain medicine but doing well.
The next morning we took it pretty easy and she just watched shows on her tablet most of the day and got checked out by doctors. They all said she looked great. About noon she decided she wanted to check out the playroom so she got up and we walked to it. She was showing signs of pain in her back but wasn’t complaining. We didn’t play for long as she got tired quickly but it was good to see her up and walking. That afternoon Melissa and her took a good nap and it was a good thing they did as Audrey had a special visitor. Her friend Clark had reached out to one of his buddies and ask him to make a stop by the hospital for him. So that afternoon Orbit from the Houston Astro’s stopped by to give her a surprise visit and a welcome distraction to the day. They hung out in the room for a while joking and having fun. Then when it was time to go Audrey decided she wanted to walk him out. At MD Anderson it’s a long way from the pediatrics floor to the front door at main but we figured lets see what she can do. She walked hand in hand with Orbit all the way there. We said our goodbyes and watched him leave them she walked all the way back. Not bad for a girl who had an operation less than 24 hours before.
Sunday was spent hanging around the hospital and just enjoying another day together hanging at the hospital and healing. Of course Audrey found her way into many more peoples hearts today. From the nice lady running the shuttle on the sky bridge to hanging out with her nurses and painting their finger nails. There have been many tears and there are certainly many more to come but we choose to smile more and make happy memories no matter what the future might bring and the scary predictions we are given. The only thing in control is God and I have to give my struggles to him every second of every minute as fear and doubt try to sneak in. She is strong and determined and so must we be. We will fight until we win or run out of options but along the way we will live.
Today is Audrey’s birthday. This is a hard fought 5th birthday. We sit at the early stages of the second round hoping for 6th and beyond. Happy Birthday to the strongest human I know! I love this little girl and she has made me better and stronger than I ever thought I could be.