We traveled to CHOP in Vorhees early this morning to hopefully start Mia's last cycle before maintenance. Unfortunately, her counts were not high enough to begin. Her body is still recovering being the last round was so rough on her system and the bacteria infection was so serious. The doctor also thinks that she has mucositis because she's been so irritable, still eating very little, and has been vomiting when she's not on anti-nausea meds. Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. She is scheduled to begin this cycle next Tuesday and Wednesday for a spinal tap and different chemos on both days.
Many people have been asking what maintenance looks like. While it won't be as intense, it will still be a long road. She will receive a spinal tap the first 2 months then the 3rd month off, then the pattern will repeat. She will also be getting chemotherapy once a month at the clinic. At home, she will get an oral chemo everyday, another oral chemo once a week and steroids the first 5 days of every month until March 2017. After that, she will just be checked regularly to make sure she stays in remission. She also won't be able to get any vaccinations until 9 months after March 2017. This is especially concerning to us because she doesn't have any complete vaccinations to begin with because she has been so sick since she's been born which they have no idea if that was a precursor for the cancer or not.
As of now, we are trying to relax and enjoy the last few weeks of summer before school starts. I will be returning to work and Mile and I will be sharing the responsibility of taking her to treatments. We are praying that she remains healthy and avoids any long hospitalization stays and that the boys can begin this year with a fresh and stress free start! Thank you for keeping us in your prayers!
