Fight Like a Family: Sadie Lou and Daddy's Journey

Sadie is a 16 year old young woman who began her battle with Ewing's Sarcoma in February 2018, at the age of 12. Ewing's Sarcoma is a rare bones cancer diagnosed primarily in children, but a small percentage of adults are also diagnosed each year. It is estimated that there are about 200 new cases diagnosed each year in the US. It is a very aggressive solid tumor. It is primarily in bone but can be diagnosed or metasticized to soft tissue. Statistically the chances of survival are higher the younger the person is diagnosed and if the tumor is localized. Sadie fell into both of these categories, 12 and localized to her left femur. Her treatment plan when first diagnosed was 9 cycles of chemo, a femoral resection (replace diseased bone with metal rod) and paritial hip rebuild, followed by another 7 weeks of chemo.

After Sadie received her first cycle of chemo, she was admitted to the hospital for a fever. She was transferred, by the emergency room team, from the clinic's outpatient clinic to the emergency room to get her stabalized for admission. When transferring her from gurney to bed, mistakes were made and Sadie was dropped (in the gurney) about a foot, it was fast and hard and she screamed. This wasn't taken seriously but as day turned to night, her hip pain became increasingly painful. She reached a point where she could not get out of the bed without excrutiating pain. Her pain continued to get worse once admitted and by 2am I demanded something be done for her. They ordered xrays, it was so painful for her to get from the hospital bed to the xray table, that she ended of biting me, while I helped her move. She screamed throughout the entire xray process and transfer back to the bed. The xray revealed that her femur had been fractured at the tumor point when she was dropped the night before. This led to a 32 day hospital stay. Sadie's pain management team couldn't get her pain under control (she became famous in the hospital because of her pain and everyone knew about Sadie) You couldn't even touch the bed without it jostling her just enough for her to scream. They tried putting her in a brace to help it to heal...it only caused more pain and we had it taken off. They finally had to transfer her to the PICU to put her on ketamine to try to get her pain under control. Up the this point, they had already tried multiple pain meds that didn't help and made her so sick she couldn't keep anything down. While she was in the PICU, they finally decided to put her in traction....this pulled the broken bones apart, they were no longer rubbing against each other, her pain decreased dramatically and she began to heal. They didn't do surgery because she hadn't had enough chemo cycles. It was a very tramatic time for her and our whole family. I can say that I have never witnessed someone in that much pain in my entire life!! Once healed and discharged after 32 days, she was wheelchair bound. She had her surgery and then finished her chemo. She was disease free. We celebrated we were sure she was going to be able to put this disease and her experiences behind her!!!

And we did, for a few months. Then she started having hip pain. Doctors attributed this to the surgery. She had a lot of fluid build up around the hip, which is normal, they told us. The pain continued to get worse and I continued to advocate for her. Finally in November of 2019, they reimaged her hip and femur and there was a spot found in the soft tissue. We all decided to put it on a shelf till after the holidays as she was going to New York in a couple of weeks for her Make A Wish. In January of 2020, they reimaged again and now there were too spots. A biopsy was performed a few weeks later and it was confirmed on February 28, 2020 (2 years to the day after initial diagnosis) thay she had a localized relapse of ES in the soft tissue by the orginal tumor point. It was bad news she had a relapse, but the odds were still in her favor for fully recovery because she hadn't metasticized. She recived chemo and then added radiation. The results were great, the disease was gone, again.

We thought we were in the clear, but moved forward cautiously optimistic. At this point, the treatment had taken a huge toll on our Lou emotionally. Now we were no longer battling the cancer demon, but a depression/anxiety demon. It took a long time to get her back to us and in a healthy state of mind, only to find out at her 6 month post treatment scans, she had relapsed for the second time with metastasis to both lungs. She was now having her port placement surgery for the 4th time, and another biopsy. She recieved 7 weeks of a new chemo regimen and total lung radiation. We weren't sure what would happen this time, but somehow, her post treatment scans revealed no evidence of disease. We had 9 blissful months of no treatment. She had her first treatment free summer in 5 years.

None of us were concerned about her scans in August because her 3 mo and 6 mo scans were clear. Our thinking was 3rd time is the charm. However, we received the devastating news that she had, in fact, relapsed again with 2 tumors in her right lung. This is a devastating blow because her options are few at this point. Because the chemo was so hard on her body and came close to losing her life due to complications from chemo on several occasions, she broke down crying and telling me she can't do chemo again. She may be eligible for a trial, but if it involves chemo, I am sure she will decline. She would prefer to take the daily pill that slows the growth of the tumors and prolongs her life. I sit here typing this with tears streaming down my face. I can't even fathom have to say goodbye to this sweet angel surprise! I am angry, so so angry right now, but I have to stay strong for her, for what she will be facing.

Last summer she made a bucket list. We were able to check two items off her list.

1. Go to Universal Studios

2. See a beach prettier than Galveston lol (Destin)

She still has many things on her bucket list. Too many to make happen for her as we now know our time is limited. I asked her to think of a place she has always wanted to visit. Right now Disney is at the top, with a road trip to visit multiple theme parks coming in 2nd. We are hoping to accomplish one trip for her. It will likely be Disney. I know she wants to see Europe, but she won't tell me she does because of the financial burden surrounding a major trip like that.

In addition to all Sadie has gone through, our family also took another huge hit in October of 2021. Steve (Sadie's Daddy) had a rare stroke occurance. He had two different types of strokes in different portions of his brain at the same exact time. He had a right midbrain hemmhoragic stroke and a major ischemic stroke at the back of the brain. We are incredibly lucky his is still with us!!. He is, however, now disabled due to severed left neglect (which basically means he recognizeds nothing in left hemisphere of his world), his short term memory is very much affected as well as having extreme impulsivity. He also is very short tempered now, where he used to be the most chill person I knew! He is not able to work now and we don't know if he will ever be able to again. He is unable to drive, we finally got rid of his truck as I couldn't afford to make two car payments and insurance on just my teacher salary. We are so very blessed he is still with us, but the disablility has put a severe strain on our finances as I am the only one working at this point.

If you read the update I posted this morning, it will further explain the type of blessings we are seeking, but the absolute most important is prayer! Pray that Sadie will be miraculously healed. Pray that Steve will continue to recover and one day gain some of his independence back, pray that I can hold our family together and we can find Joy wherever it may present itself. The emotional toll that our entire family has been burdened with is beyond comprehension. They say you never know how strong you are until you have to be....

If it is on your heart and you are able, we hope you will donate to keep our heads above water and help a young lady add some checks to her bucket list. We are so blessed by our Prayer Warriors and will be forever grateful.