Sep 25, 2014 Latest post:
Apr 18, 2019
Welcome to "Little Miss T's" CaringBridge site.
We've created it to keep friends and family updated.
'Little Miss T' is the nick name that her Aunt Theresa, my sweet sister Theresa Mains, always calls her, so we named it that.
Little Miss T is *our* Theresa.
She is *Our* beautiful brave daughter, sister,cousin, niece, hero and all around rock star.
Theresa was diagnosed with an aggressive form of osteoblastic osteosarcoma at Hershey children's Hospital in September, 2014 when she was 9 in her right femur with mets in both lungs, was biopsied, ported and put on chemo all *within 24 hours* of diagnosis. She was put on the standard protocal MAP (methotraxate, doxirubison, and cisplatine ), but became resistant on that, then put on Etopiside with Ifosfomide, but the mets in her lungs still grew on that so then they put her on Doxitaxal with gemicitobene till they could get her on a genetic targeting trial. Theresa has never been declared NED, and I think that's why she is still alive today in 2018. I think the first mistake so many oncologist teams make is underestimating the deadly sneakiness of this disease that hides in the bones and the blood, and declare someone NED just because they *see* no cancer. Between the Etop/ifo and dox/gem she had a Vanness rotationplasty: a 13 hour surgery where they removed the tumor in the femur, plus her knee, brought the tibia and foot up and rotated 180 degrees and reattached it so her foot is now a functional knee with the proper prosthetic. Then she had thoracoscopic surgery in April of 2015 to remove 3 of the largest tumors which were analyzed and match for agents that would be most likely to kill or stop the cancer in her. She was put on the NCT01802567 molecular guided therapy trial in June 2015 and chemotherapy agents were matched to her tumors. On May 17, 2016 days before her older sister's high school graduation she was removed from the trial due to tumor growth in her lungs. But, and this was the genius of the trial: because the trial marked out up to *200 possible chemo agents* that her cancer is sensitive to, no one panicked (well, I did a little). Her chemo's were tweaked a little and so we moved on. Theresa received 34 cycles of gemcitobene infusion therapy until May 2017, and then stopped as her oncologists and we, her parents felt it was time. Her bone marrow was taking a beating, her body showing some signs it had had enough. The two nodules that bumped her off the trial had calcified, and one in her left lung was stable. So her port was removed, and her oral chemo tweaked a little more, and we moved on. Theresa has also, on her own direction because she is a precocious and willed child, has been following a strict vegan diet based on studies that cancer reacts to enzymes found in only animal based foods. I DO believe this has contributed to her over all health thus far and she has taught me so much about healthy living, she really is my rock star..
As of February 2018, the stable nodule has suddenly woken up, though it is still quite tiny (5.2mm) her doctors are keeping an eye on it and there will be discussions on when it will be removed. Our entire family has been thru hell and back but Theresa has led us all into battle with the battle cry: *I WILL LIVE!* And she will. She still wants to play and dance and dreams of the future. She leads our dreams as well. She is our rockstar. We will never ever give up. -Mary Illicete February 2018
Update March, 2019:
Since Theresa had no further new nodules or worsening of existing lesions after several months of this continued therapy, we elected to modify her therapy to omit IV myleosupressive agents and improve her quality of life. Her day 8 Gemcitabine was stopped at cycle 28 and Gemcitabine was completely stopped after cycle 34 (June 2017). We discontinued Gemcitabine instead of other agents due to its properties of myelosuppression, likelihood to cause MDS and complicated quality of life. We elected to continue the targeted therapy with Everolimus, Doxycyline, Pravastatin and Dasatinib. She did very well for ~ 1 year and then in July 2018 a new RML nodule was noticed which continued to grow. On the chest CT from 10/2/18, the RML nodule was measured as 0.8 x 0.6 cm and was very peripheral. The LLL nodule remains stable. With the continued growth, Dr. Dandikar approached surgery for excision of the nodule and she had a Right lobe thoracotomy with RML wedge resection on 11/2. Gemcitabne was added back to her regimen at cycle 59 She often has diffuse centrilobular nodularity bilaterally on her scans which is secondray to one of her study drugs- everolimus On March 18, 2019, on Cycle 64, Theresa had a routine surveillance MRI of her RLE. The MRI showed 3 marrow lesions within the right lower extremity; 2 within the proximal femur and 1 within the distal tibia, which are concerning for metastatic disease. With the concern for metastatic disease, a biopsy of one of the lesions is necessary and has been arranged for a biopsy of the greater trochanteric lesion - ********************************************************************* Original introduction:
September 2014 intro:
Theresa is 9 years old. She is the youngest of a family of 11 children. She's loves all of her family. and her family loves her. We are committed to do everything we can to get her through this. Theresa is just a nine year old girl like any other. Peridot green is her favorite color. She is funny and smart, and creative She sings. She loves to swim. She Loves to run and play. She loves her friends, and Barbies, my little pony, and American girl dolls. She loves to dance and do gymnastics. She was always dancing. Last week she dreamed she was running and dancing. But then she woke up. We all woke up.
We thought she just injured her growth plate.
Back in May she hit her leg. And then she started to limp. And then limp some more. We took her to a doctor who said she simply had a growth plate injury, and she should just stay off her leg for a while. So Theresa wore a brace and limited her walking. I looked up growth plate injury and saw that it would indeed take a while to heal and for a long time it stayed the same, till suddenly her leg began to hurt at night. and by August Theresa was crying every day. So I took her to another doctor who eventually sent her to Milton-Hershey Medical Center where they took more xrays and what they saw alarmed them. I knew something was wrong when they got very quiet, and began to look at me, then away, then at Theresa.
And suddenly it was like a huge tidal wave came and swept us up and we were caught by a current that we could not swim against...and in less then 24 -30 hours Theresa had a mediport placed, and was getting her first round of chemotherapy: Doxorubicin and cisplatin.
To say that this all was like a bus hit me broad side is an understatement. At one point I was just watching myself talk to the doctors...and calling her dad to tell him the worst news any parent could ever get: Our baby has high grade Metastatic Osteogenic sarcoma that has spread from the tumor in her right femur to her lungs.
Everything is changed. Theresa and her family will be in for the fight of her life but we believe in the golden power of prayer.
For Theresa, prayers are gold. And this page is where we are asking for that gold. For you to pray and pray and pray some more.
Because one day soon, Theresa WILL dance again....even if its with just half a leg. Because Theresa can do anything. Shes that kind of kid. Jesus, I trust in you Mary