Posted: September 20, 2016
13 Years Old at Diagnosis.
Written by Tabitha Freeman.
Our (mine, her stepfather Joe, father Greg & brother Owen, among other family and friends) precious girl was diagnosed with metastasized Ewing sarcoma on July 19, 2016. This day will forever be burned into our minds as the day our lives took a sudden change of course.
Let’s go back to a hectic start to her 8th grade year. Talia was always athletic and loved to run. She ran and placed in her first 5K at the young age of 9 and nothing has stopped her since. She was looking forward to a memorable year and track season, but complained about a fall she took over the summer at a water park – this would be the first I had heard of any back pain.
We found that ibuprofen and ice seemed to help the discomfort as it would come and go. Nothing unusual if you consider she must have bruised her tailbone. We carried on with occasional bouts of more discomfort that would dissipate, only to return again.
Talia entered her track season and the end of her 8th grade year around the same time. This would be when I first noticed something odd. She was not performing as she normally would, she seemed tired and she was running with an odd sort of stride. I questioned her, and she complained that she just felt tired and it hurt to run.
She had also started pole vaulting, and I found myself wondering if this was putting too much stress on her body. The last race prior to her sectionals she ran hard and came off the track crying. When I rushed to her to see and asked what was wrong, she told me she had pain from her hip running down her right leg.
I later took her to the nearest ER in our small country community. They took X-rays and did a basic check of her health, and told me it was sciatic nerve-related. They then prescribed steroids and recommended she discontinue running for the remainder of the season.
I felt giving her steroids should not be a first option, and decided to just use ice and heat with anti-inflammatory meds instead, as I did not want to mask a more significant issue, should there be one. This regimen seemed to improve her overall well-being, and she even attended her 8th grade Great America (theme park) trip! She graduated without much incident and we entered her summer as usual.
Talia usually goes to spend the first half of summer with her father about two hours from home, and this year was no different. A couple of weeks into her stay with him, her father called and notified me that he was taking Talia back to the ER because she was in terrible pain in her lower back. I was at work and rushed to meet them at the hospital. She was transferred from Immediate Care to the main hospital due to blood in her urine and a fever. There they performed a CT scan, urinalysis, x-rays and blood work. We were told her kidneys were free of stones and they felt she had a serious kidney infection and began an antibiotic to treat a bacterial infection.
Talia seemed to improve. She still complained of discomfort, but not to the same degree. The following week I received a call from her primary care doctor stating all testing came back normal, including the urinalysis, and explaining we should discontinue the antibiotic and bring her in should she have any further issues. Talia seemed to have a couple of days during this week when she seemed fine and even went to Great America again with her father and brother.
The following day her father had her back in the ER again – this time they fell back on the original diagnosis of sciatic nerve pain and once again prescribed steroids. This time we went ahead with the meds and followed up with the pediatrician who agreed with the ER diagnosis and recommended physical therapy.
I honestly could not shake the feeling that this was just not right, but I did not want to interrupt her visitation with her father and was holding out hope that if she rested enough, it would get better. I spoke to her frequently over the next week while we waited for the physical therapy appointment. She claimed it was bearable as long as she did not move too much. At this point, it seemed that some of what she was explaining did not seem consistent with sciatic nerve pain, especially in a 13-year-old.
My husband, Joe, and I were gearing up for the kids’ return home and our annual family vacation up North, but feeling unsure on whether we should go since Talia seemed concerned about being able to bear her pain during the vacation. I would honestly say this was the first RED flag that was thrown because my girl would not want to miss this for anything. She went to her appointment, and the physical therapist confirmed the diagnosis and stated that her hip was misaligned, causing pressure on her sciatic nerve. She gave her a belt to wear and exercises to do while we waited for the approval from the insurance company for future appointments.
Talia decided that she wanted to come home and try to go on vacation. Once home, I noted immediately the increased pain in my daughter – it also seemed that her hip was swollen. I attempted to massage her hip and lower back and immediately noticed a sort of bump at the base of her spine and extending toward her right hip. I asked her about this and was told the physical therapist said this is normal and that her hip is just not aligned. Again, I was dumbfounded. This did NOT seem right, and my worry grew. We had a rough next few days.
After traveling a few hours north, Talia was in severe pain – crying and waking in the middle of the night practically screaming out. I took her to an ER up where we vacation at and once again a panel of X-rays were performed, as well as a consult with an orthopedic doctor. The doctor felt strongly that she had a soft tissue injury and we should get an MRI as soon as we return home. They gave her shots of Toradol and more steroids and sent us on our way. I was upset. I would not have taken her to the ER if her pain was managed so to send me away knowing her pain would return was heartbreaking.
Talia did have some improvement for a couple of days, but started to have trouble again, so we cut our vacation a day short and returned home in the middle of the night to ease travel discomfort. I work a demanding job and had a big first day back. I checked on Talia before leaving and she said she was hurting but doing ok. I immediately began reaching out to ortho docs at the nearest preferred pediatric hospital to our home (nearly 70 miles away) in order to get an MRI as soon as possible. Needless to say, I was told they had no appointments until August 1 and this was July 11. I explained I could not wait that long and was told they would call back after speaking with the clinic.
I nursed Talia through the next 24 hours between work and home. When I arrived home from work on Tuesday, July 12, I found my daughter incredibly ill. You could see her suffering, and I just knew I had to do something. I tried to get her to eat a little something, as she had not been eating, but I did not want to give her anything for pain and to upset her tummy. She slowly hobbled over to the table and attempted to take a bite and that is when the vomiting started.
My husband, Joe, and I decided this was it and we loaded her up and rushed the 70 miles to Lutheran General Hospital in Park Ridge, IL. By the time we arrived, Talia literally could not walk on her own and I could tell she was running a fever again. We encountered a much different response from this set of doctors and they acted quick and intelligently. Within the hour she had an MRI, completed bloodwork and pain meds on board. We were told she would not be discharged until they had an answer.
Talia’s MRI came back abnormal, and we were told there was a mass in her pelvis that they believed to be a tumor, and we would be admitted to determine what it was and how to help her. The next few days were a blur – I can vividly remember seeing the ortho doc (the same one I had called just a day before) and him telling us that he felt strongly that we needed an oncology team. That was the first time it hit me that we were dealing with cancer. There was a procedure to place her central port and do a biopsy of the soft tissue tumor and also a bone aspiration – all this while our beautiful girl suffered. She was still in tremendous pain even though the medications were doing a good job of managing it.
Prior to this procedure, I finally asked one of the oncology doctors what exactly they thought this was, which was the first time we heard about Ewing’s. Our worst fears were confirmed on July 19, 2016 when the final pathology report and PET scan reports confirmed our baby had metastasized Ewing sarcoma. They believed it began in her hip and that is all they can say for sure (also, lesions were found in both femurs, rib, hip, shoulders and arms).
Talia’s first round of intensive chemo began that same day, just three days prior to her 14th birthday. She did decide to participate in a clinical trial and was randomly selected to receive an additional medication that they are hoping will improve her chances at a full recovery. At this time her tumor and lesions are not operable, and we were told just today that they will most likely never be.
We were in the hospital for almost a month and faced many trials during that time, but finally are on a home/hospital schedule that allows us to find some sort of a new normal. I am no longer working, as we were told she needs a 24-hour caretaker, and I would not have anyone else take my place. She has a round of chemo every other week at this time. One week is two days (currently inpatient, but hopefully will be moved to outpatient in the near future) with a week off and the next week is five days inpatient. So far she has needed two blood transfusions and one platelet transfusion.
Regardless of what happens, I am right beside her, hoping and praying for her endurance. Talia has gained back eight of the 16 pounds she lost in those first couple of weeks and is digging deep for the strength to fight this battle. We are all her holding her high and have hope that this amazingly generous and loving girl wins this battle.
I want our story to reach people and raise awareness, especially for Ewing sarcoma kids, that so often go without diagnosis and suffer needlessly. I am happy to report that the wonderful doctors here have given Talia a mostly pain-free body at the moment, with no narcotic pain meds needed at this time. All this helps her to endure the discomfort and difficulties that the chemo regularly presents to her life.
Our family can only hope that science will continue to progress. We know now that even if Talia is able to achieve remission, she will face a lifelong battle of “what if this comes back?” We know now more than ever how important research and advancements are in regards to childhood cancer. Our hope through telling her story is that the world will continue to fund the search for a cure to end this disease.
I pray for my child and her healing, and for other children and families affected by the many faces of this terrible disease. No one ever thinks this will touch their life…and then it does.
Learn about a CureSearch research project focused on new targeted treatments for Ewing sarcoma here.
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