A blessed Christmas from our family to yours!
I’m sure you have noticed the long time between postings. It has been a difficult month, often with things changing on a daily, if not hourly basis. Hannah went for her first set on scans on December 6. She was sent back the next day for a different type of scan (a PET scan) to help her team analyze what they were seeing on the cat scan. The consenses was that her tumor had grown around 50%, however there was nacrosis (die out) in the middle of the tumor. The tumor also seemed to be fluid in the middle. Unfortunately, the tumor appeared to be wrapped around her aeorta, so surgery is not an option.
The doctor sent us back for an MRI of her heart to see the exact placement of the tumor. Preliminary results confirmed the nacrosis and placement of the tumor, with additional lymph nodes on her right side affected, but also showing nacrosis. On December 14th, we got a call with the official results that was a good news, bad news situation. The good news was that there was more nacrosis of the tumor than growth, and that Hannah would benefit by continuing to receive the antibody treatment. The thought was that the tumor would implode on itself. The bad news was that she had a severe blood clot in her right atrium, and we had to come down immediately to be admitted to the hospital. While we were on the way down to the city, a decision would be made about how to treat the clot - surgery or blood thinners.
The decision was made to use blood thinners to work on dissolving the clot, and Hannah and I spent the next week lounging in the hospital, watching movies, getting her blood drawn every 6 hours and adjusting medication. The highlights of our stay were visits from Java Chamberlain of the New York Yankees and Santa Claus. Just as we were beginning to worry that we might be spending Christmas at the hospital, she was released late last Thursday night. Did you know that the hospital will send you home at 10:00 p.m.? Treatment will continue at home with twice daily injections of a blood thinner by Doctors Mom and Dad. How lucky can one girl get to have her own medical staff at home
The difficult part of this hospital stay was that in a manner of speaking, we admitted a healthy child and brought home a very sick child a week later. Coincidentally, the day after she was admitted, Hannah began to show signs that between the clot and the tumor, blood flow to her heart was being compromised. Medically, the decision had to be made to start radiation to try to kill off the tumor to ease the strain on her heart. Osteosarcoma is very resistant to radiation, so very high doses have to be used. Hannah started her treatment last Tuesday, and will continue through January 2. It will take about 6 weeks for the radiation to have an affect. After that, decisions will be made as to how to treat Hannah since radiation takes her out of the clinical study. In the meantime, Hannah is not feeling well, not eating well, and taking medication for every known ailment. Santa did bring her a cell phone which got us a smile on her face.
The emotional strain on the family has been enormous. Once again the boys chipped right in to help any way they can. When Bill had to go on an unavoidable business trip, Nathan came and spent one night with Hannah so I could sneak home for a night to see Colin and Austin and to get some rest. Colin, or Mr. Mom as he now calls himself held down the fort at home, even taking Copper, our beagle to the vet for an emergency visit. Austin cheerfully went to many different houses without complaint and happily ate Burger King many nights (his favorite resturant). It is always apparent by both their words and actions how much Hannah’s brothers love and care for her.
Bill and I got our holiday wish that we would all be together for Christmas. The presents are unwrapped, the turkey is in the oven, we’ve all had our mid-afternoon naps. We hope that everyone has as wonderful a Christmas as we are having and thank you again for always being there for us.