So we have our first night of hospital life where we try and sleep and the nurses come into check on Audrey every 2 hours. The first day out of surgery is just about resting and healing. The next day we get the results back from the biopsy. We are hit with another bomb shell. We find out Audrey has Rhabdomyosarcoma. We also find out this is a very unusual place for it to show up which means we need more testing and an MRI to find out if it has spread. The doctors order a MRI full brain and spine with contrast to see if the tumor on the spine is the origin tumor and if it has spread. They also order a full upper body CT scan, a bone scan and a bone marrow test.
The MRI result come back and we are hit with the third bomb shell. The tumor is not only in an unusual location for its type but it turns out when it forced its way into the nervous system it metastasized into the spine and brain. We also find out that there is still a pea sized part of the tumor left inside of the base of her spinal cord. We meet our Oncologist for the first time and he informs us there have been only 4 other recorded cases in the world of Rhabdomyosarcomathat has started in the back and spread into the spine and brain. With basically no prior cases to go off it’s time for the doctors to come up with a plan. Our new doctor contacts MD Anderson and sends an email out to 1500 other Oncologist to help get some ideas on where to start. After 5 days of scanning, poking and testing the CT, bone scan and bone marrow all come back clean and we can finally take Audrey off the ventilator.
After seeing the pea sized tumor still in the spinal cord the initial plan was to go back in and remove what was left but it turned out the recommendations from MD Anderson that Banner is affiliated with came back to immediately start a very aggressive 54 week chemotherapy and radiation treatment plan that will put Audrey’s body and will to the test. We were also explained there are only two ways to have a complete cure to this cancer. That is chemotherapy to shrink the tumors then either surgery or radiation to eradicate the cells. The cancer in the upper back and brain are inoperable so radiation is the only way to kill it. With cancer nothing comes without very large side effects. 2 major problems with where her cancer is. The problem with irradiating a child’s spine is it will stunt the growth of the spinal area. We are not fully sure what this means visibly long term. The second side effect is when irradiating a young child’s brain it will leave damage. In the case of a child Audrey’s age it will mean 10 to 20 points of IQ loss. We have dealt with our daughter has a tumor on her spine. We have dealt with our daughter has cancer and now we have to deal with what the long term effects look like if she lives. Both of us talk later and find out we both decided we didn’t want to do this anymore and we were done. But it’s not that easy when you are a parent. You don’t have the option to be done.
Monday June 22nd we got moved upstairs to Oncology. We had a meeting with our doctor where we learned about all the different types of chemotherapy that Audrey would receive and again with the side effects. 4 of the 8 chemo treatments could give her cancer. We also learned that MD Anderson in Houston has a different way of administering radiation. They have a Proton Beam Therapy device that has a more precise delivery of radiation that and has shown in many cases to have a much less brain damage when used. Which means less IQ points lost. Unfortunately it doesn’t change the spinal growth issues but does mean less radiation going to vital organs during the treatment. This also means however that at some point in the treatment we will be spending 6 weeks in Houston. We will cross that bridge when we get to it.