Team Abby

September is Desmoid Tumor Awareness Month. Everyday I’m reminded of how awful & aggressive these tumors are. Abigail’s oncologist has referred to her tumor many times as “a beast”, and I couldn’t agree more. Being that it’s “Awareness” month, I’ll take this opportunity to update everyone on Abby and the last 6 months. Abigail began Nexavar (an oral chemotherapy pill) in March and we were very hopeful that her tumor would respond. We believed it would quit growing and were hoping it would shrink as well. She experienced side effects such as: nausea, vomiting, joint pain, fatigue and most devastating to her, significant hair thinning and loss. She remained on Nexavar from March until August. Only taking a break in July due to her liver enzymes being dangerously high. Other than that short break, she took her chemo daily, managed her side effects and always, with a smile on her face, told everyone she was doing, “FINE!” She began to have breathing/swallowing issues in July and we headed back to Iowa City. Catscans, x-rays and consultations left us with just as many questions as we had before we came. The tumor did not respond to the chemotherapy. In fact, it continued to grow. Dr. Mo was uncertain how to proceed next and took her case to the Tumor Board-a group of medical professionals all specializing in soft tissue tumors in one way or another. We received responses from two different specialists and what they thought they could provide as options for Abby. OPTION 1: We met with a thoracic surgeon who felt he, along with a team of ENT & plastic surgeons, could remove Abigail’s tumor. The surgery would be very invasive. They would open her chest cavity, remove however many ribs they deemed necessary, remove a portion of her clavicle, her chest wall and pectoral muscle and anything else that the tumor had wrapped around. The potential side effects we were given were blood loss, nerve damage, possible vocal cord damage, a significant chest deformity, and possible paralysis. She would undergo complete reconstructive surgery, most of her chest cavity would be removed and replaced with “mesh”. He said he felt it was “impossible” to eradicate the entire tumor, leaving a very high percentage of it returning and returning aggressively. However, as hopeless as all that sounded, he felt surgery was really her only option at this point and that she only has a small window of opportunity before her tumor becomes too large and surgery is no longer an option. OPTION 2: We met with an interventional radiologist who had a couple of possible scenarios but because of the size and location of Abigail’s tumor, he indicated there would be multiple surgeries involved as well. OPTION 3: They are beginning a Phase 3 clinical trial for a medication that has shown some encouraging results. It is being offered at the Medical College of Wisconsin and Dr. Mo said it was somewhat of our “last hope” at shrinking the tumor. Abigail and I went to Wisconsin last week and met with the Dr conducting the trial and the research team in Wisconsin. There will be 96 patients worldwide, 8 of those being monitored under Wisconsin and Abby will be the first. We started her 21 day screening process last week. If she is accepted into the clinical trial, she will begin around September 25 and we will make weekly trips to Wisconsin. There is a lot more information regarding the clinical trial, which I’m happy to share, just message me. It’s just to much to explain here. It’s a double blind placebo study and Abby getting the treatment drug is a 50/50 chance. If this doesn’t work, the other treatments available are not something she wishes to consider at this point. 

This go fund me is made to help cover the expenses of going to Wisconsin weekly. We will keep everyone informed as we know .