Phoebe got to come home last night. Her sodium levels finally came down to a normal number and she is feeling better. Unfortunately, her body is still having a difficult time absorbing enough potassium. Her kidneys are dumping rather than absorbing the potassium and yesterday her Magnesium was low as well. She received IV Magnesium and we were sent home with more potassium supplement.
It is possible that the heavy duty antibiotics Phoebe received for her UTI could have caused this kidney damage. If that is the case, then it is expected that this malabsorption issue will eventually correct itself. If this is from the chemotherapy, then it could be permanent. Please pray for the former.
Phoebe goes in Tuesday for her next round of chemo.
From time to time people implore us to stop chemotherapy. Know that is a thought that crosses our minds quite often because the side effects are so nasty and often permanent. But, lots of people live with ADD and kidney issues and even endocrine issues; zero people live with untreated AT/RT tumor cancer in their brains and bodies. Unfortunately we have the task of chosing between some horrible options. These are decisions no one ever expects to have to make.
On the other hand, Phoebe is not elegible for radiation (a standard part of her chemo protocol) because of the location of her tumor site. Her tumor was seated in the part of the brain that controls your emotions, personality, hunger and thirst and pituitary function. If we were to treat with radiation, we would no longer have “Phoebe”.
We are thankful that radiation is not an option because then we don’t have to live with the possibility that we damaged our daughter in a way that changed who she was fundamentally. The choices that parents of brain tumor patients/cancer patients are forced to make are heart wrenching. Nothing can prepare you for these types of ethical decisions, especially with your own child.
When Phoebe’s chemotherapy treatment is completed in February or March, many of these horrible side effects will abate and her body will have time to heal. Barring a miracle, we will have to deal with her endocrine issues for the rest of her life, but we’ll take it.
Thank you all for praying for our girl and for expressing your concerns. Please know we have wrestled this through and continue to wrestle with these decisions on a daily basis.
Looking towards the finish line,