I will never forget December 3rd, 2009. Ever.
Lauren had been presenting classic UTI/bladder infection symptoms. I am never one to take my kids to the doctor for reasons I can treat at home so I started giving her loads of cranberry juice and AZO cranberry pills. After a week of no changes, I took her in to see the pediatrician thinking it could be an infection where an antibiotic was necessary. After a urine culture came back negative, he suggested I take her to see a gynecologist.
She examined Lauren and couldn't find anything wrong physically and ordered some blood tests and an ultrasound. I could tell something was wrong just by the look on the ultrasound tech's face. We were immediately called in to the radiologists office and told that Lauren could possibly have an ovarian torsion. Surgery would be necessary and actually emergent.
The next morning Lauren went in for exploratory laparoscopic surgery. After an hour in surgery, I was called down by the surgeon to meet with her. I thought at that time that it was all over, but boy was I wrong. A 21cm tumor was found, located retroperitoneal (wrapped around her sacrum) and she was asking my permission to open her up. The symptoms Lauren was having were actually because the tumor was so large it was pushing her bladder up into her abdomen, making it almost impossible for her to urinate. A gynecological oncologist was called in to complete the surgery.
Because of the tumor location, a resection was done to alleviate the pressure on the bladder and she was closed up. After almost three weeks of recuperation, Lauren was admitted to Children's Hospital in Oakland to have a port put in and start treatment for retroperitoneal undifferentiated soft tissue sarcoma. Additional imaging showed it had also spread to her lungs (too numerous to count) and liver.
She was put on a clinical trial initially, but after 13 weeks, was taken off the protocol because surgery to remove the primary tumor was not an option. She then started a new protocol and stayed on it for four more months. At the end of September, imaging showed she had responded well and her disease was considered stable. The tumors on her liver were gone, a few remained in her lungs and the primary tumor had shrunk considerably. We decided at that point that we would follow her with PET CT scans instead of MRI's, which have the ability to show metabolic activity within the tumors. If we couldn't make them disappear, we could at least kill them and what remained would become scar tissue. Additionally, we took her off conventional therapy and started her on a holistic plan under the care of a Naturopath and made major changes to her diet (our diet). She did Iscador Therapy, in addition to taking upwards of 80+ pills a day including botanicals and plant therapy from actual derivatives of the very chemo drugs she had been taking before.
Much to our delight, the tumors continued to shrink and the metabolic activity dropped consistently with each scan. In May 2011, Lauren went into remission. The primary tumor remained, but was in fact dead and no cancer within it. Unfortunately, six months later, new tumors appeared in her lungs (five to be exact, all measuring 2-3cm). We decided at this point that during the surgery to put her port back in that they would gather tumor tissue from her lungs to send out for target/gene testing. She started chemo the second week of December 2011. After four cycles of two new drugs (new to Lauren) her tumors are now down to 5mm and four remain. In May 2012, her lung disease was stable and she took a break from chemotherapy to enjoy her summer vacation.
In August 2012 a CT scan revealed her disease was once again on the move with a measurable amount of increase in her lung mets. Though there was some speculation as to whether there was new disease, the CT scan was done without contrast and neither the oncology team or the radiologist could offer definitive answers. We decided on the "wait and see" approach. In November 2012 a PET CT was performed and news of progression was the last thing we wanted to hear.
She immediately began a new chemotherapy protocol, her own personal clinical trial, of two drugs that she had tested sensitive to almost a year prior. Unfortunately, after three cycles of the new drugs, the tumors in her lungs continued to grow and in January 2013, she stopped all chemotherapy.
In the months after, our CAM team did a multitude of research into alternative therapies, gene therapies, and many out of the box protocols. We decided to travel to a clinic in Gulf Shores, AL where she would undergo cryoablation to freeze the five remaining tumors in her lungs. She would also have an experimental plant product, used in Europe but not approved here in the US, injected into the tumors.
She had a GREAT initial response to this procedure with a 75% reduction in tumor size but three short weeks later, the CT scan showed the tumors back to their original size. Confused and defeated, we have chosen to return to Alabama for more cryoablation and give it one more shot before moving on to something else.
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Lauren "Lola" Scott Chiodo left this physical world on her next journey on August 8, 2013 at 8am. Do not be sad for her, as she was excited to start this new life. She was excited to see her friends who had gone before her.
Lauren had been presenting classic UTI/bladder infection symptoms. I am never one to take my kids to the doctor for reasons I can treat at home so I started giving her loads of cranberry juice and AZO cranberry pills. After a week of no changes, I took her in to see the pediatrician thinking it could be an infection where an antibiotic was necessary. After a urine culture came back negative, he suggested I take her to see a gynecologist.
She examined Lauren and couldn't find anything wrong physically and ordered some blood tests and an ultrasound. I could tell something was wrong just by the look on the ultrasound tech's face. We were immediately called in to the radiologists office and told that Lauren could possibly have an ovarian torsion. Surgery would be necessary and actually emergent.
The next morning Lauren went in for exploratory laparoscopic surgery. After an hour in surgery, I was called down by the surgeon to meet with her. I thought at that time that it was all over, but boy was I wrong. A 21cm tumor was found, located retroperitoneal (wrapped around her sacrum) and she was asking my permission to open her up. The symptoms Lauren was having were actually because the tumor was so large it was pushing her bladder up into her abdomen, making it almost impossible for her to urinate. A gynecological oncologist was called in to complete the surgery.
Because of the tumor location, a resection was done to alleviate the pressure on the bladder and she was closed up. After almost three weeks of recuperation, Lauren was admitted to Children's Hospital in Oakland to have a port put in and start treatment for retroperitoneal undifferentiated soft tissue sarcoma. Additional imaging showed it had also spread to her lungs (too numerous to count) and liver.
She was put on a clinical trial initially, but after 13 weeks, was taken off the protocol because surgery to remove the primary tumor was not an option. She then started a new protocol and stayed on it for four more months. At the end of September, imaging showed she had responded well and her disease was considered stable. The tumors on her liver were gone, a few remained in her lungs and the primary tumor had shrunk considerably. We decided at that point that we would follow her with PET CT scans instead of MRI's, which have the ability to show metabolic activity within the tumors. If we couldn't make them disappear, we could at least kill them and what remained would become scar tissue. Additionally, we took her off conventional therapy and started her on a holistic plan under the care of a Naturopath and made major changes to her diet (our diet). She did Iscador Therapy, in addition to taking upwards of 80+ pills a day including botanicals and plant therapy from actual derivatives of the very chemo drugs she had been taking before.
Much to our delight, the tumors continued to shrink and the metabolic activity dropped consistently with each scan. In May 2011, Lauren went into remission. The primary tumor remained, but was in fact dead and no cancer within it. Unfortunately, six months later, new tumors appeared in her lungs (five to be exact, all measuring 2-3cm). We decided at this point that during the surgery to put her port back in that they would gather tumor tissue from her lungs to send out for target/gene testing. She started chemo the second week of December 2011. After four cycles of two new drugs (new to Lauren) her tumors are now down to 5mm and four remain. In May 2012, her lung disease was stable and she took a break from chemotherapy to enjoy her summer vacation.
In August 2012 a CT scan revealed her disease was once again on the move with a measurable amount of increase in her lung mets. Though there was some speculation as to whether there was new disease, the CT scan was done without contrast and neither the oncology team or the radiologist could offer definitive answers. We decided on the "wait and see" approach. In November 2012 a PET CT was performed and news of progression was the last thing we wanted to hear.
She immediately began a new chemotherapy protocol, her own personal clinical trial, of two drugs that she had tested sensitive to almost a year prior. Unfortunately, after three cycles of the new drugs, the tumors in her lungs continued to grow and in January 2013, she stopped all chemotherapy.
In the months after, our CAM team did a multitude of research into alternative therapies, gene therapies, and many out of the box protocols. We decided to travel to a clinic in Gulf Shores, AL where she would undergo cryoablation to freeze the five remaining tumors in her lungs. She would also have an experimental plant product, used in Europe but not approved here in the US, injected into the tumors.
She had a GREAT initial response to this procedure with a 75% reduction in tumor size but three short weeks later, the CT scan showed the tumors back to their original size. Confused and defeated, we have chosen to return to Alabama for more cryoablation and give it one more shot before moving on to something else.
----------------------------------------------------------------
Lauren "Lola" Scott Chiodo left this physical world on her next journey on August 8, 2013 at 8am. Do not be sad for her, as she was excited to start this new life. She was excited to see her friends who had gone before her.
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Lauren continued to deal with side effects from both the chemo and radiation. Because of the peripheral neuropathy, she needed a wheelchair to walk long distances. The radiation has not only caused severe vaginal fibrosis but also hip issues which also impair her walking abilities and menopause at 13 years old. Cancer stole her teenage innocence and now she has the soul of someone mature beyond her years. But through this all, she continued to remain upbeat, happy and as positive as one can be going through the fight of her life.
If you are bored and want to read my CaringBridge journal, here is the link:
http://www.caringbridge.org/visit/laurenscottchiodo
Also check out LoveLikeLola.com - a site Lauren started to blog on that turned into #LolasBucketList photo sharing and now will end up being the site we use for our new foundation, The Love Like Lola Foundation.
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