Originally written on Thursday, 29 June 2017
Julie has been experiencing more pain, fatigue, nausea and neuropathy as the cancer and the chemotherapy continue. Towards the end of May she took a break from chemo until we got back from a family trip to California where the whole family would be together. Upon our return, she had another CT scan that showed stability of the cancer. With her pain increasing, it was recommended that she should have a pain pump placed into her spine, which would mean, less overall medication, with better pain control and fewer side effects.
On Wednesday, 21 June, she had the pump placed. She felt good afterward and the following day. We did notice a little difficulty with speech and eating before the procedure, and it was a little worse afterward. The next two days we struggled with finding the right balance of pain medication through the pump vs oral vs skin patches as she made the transition to the pump. She started feeling more ill through the weekend. She had lost all her appetite, felt nauseous and had no interest in food. By Sunday, I thought she looked a little grey or blue, so I measured her oxygen levels which were low. We then went to the hospital and we found that she had a large pneumonia on the right, and that tumors in her chest obstructing bronchi were likely the cause. Her speech had also become more difficult to understand and eating more difficult. She was admitted to the hospital for treatment of pneumonia and lack of ability to eat.
Monday she felt a little better, ate a little more, but as the day wore on, she had a greater problem with eating and speaking. By the end of the day Tuesday, we could not understand her speech and she could no longer swallow any pills. Wednesday, yesterday morning, an MRI showed many bone tumors of her skull (some we already knew about) that were large and growing, and starting to press on the brain a little, but not likely yet causing much problem. But also, there was a tumor in the base of her skull, by the right jugular foramen, likely pressing on the right glossopharyngeal nerve, thus causing the paralysis and numbness of her tongue and pharynx, and thus severely impairing her speech and eating.
Today Julie underwent radiation treatments of the tumor at the base of the skull, and the right lung tumor. She will have 9 more treatments over the next two weeks. The hope is that when the tumors shrink that she will recover function of her speech and eating ability, and less bronchial obstruction of the right lung. In the meantime, she is getting total parenteral nutrition, TPN. She may need to have a g-tube placed into her stomach for feedings if she does not recover function of that nerve soon.
I feel very anxious about her right now. This triple whammy of the new pain pump challenges, the obstructive pneumonia, and loosing her ability to speech and eat, has really put her down. The hospital personal, nurses, physicians, and radiation oncology staff have done their best and taken outstanding care of Julie. Thanks to them, we have hope. Thanks to family and friends for the visits, prayers and love, we are hanging on. Thanks to my friends at the pediatric center, I am able to be here with Julie.