It has been a long day, but better than yesterday. Ellie did throw up just before her radiation appointment this morning, but that made her feel a little better while she was on the table in the mask. It has been one our worst fears that she would vomit in the mask during radiation. We were able to talk with the radiation oncologist this morning and she was able to answer some questions about Ellie's symptoms. The headache should not be at all connected with the radiation itself - the doctor assured us that at most it was a tension headache from her positioning on the table. Ellie was also experiencing some neck and jaw pain, and the doctor said that it is uncommon, but some people do have their saliva glands swell when receiving radiation to the head. She said that at most, Ellie would feel it today, but for sure by tomorrow it would be fine. (And Ellie hasn't complained of it since this morning.) She said that the nausea is very rare for radiation to the head, but there are a few sensitive individuals who will throw up from radiation to the big toe. And so, not for the first time, I am reminded that Ellie is SENSITIVE... imagine that!
After the radiation and doctor appointment, we went to the Day Hospital for blood work. Ellie was in need of another platelet transfusion. We also saw both a nurse practitioner and a doctor. We have had Ellie on a backpack of fluids over the past 24 hours because I've been worried that she's not getting enough to drink. Today I told them how little she's had to eat and all of the radiation symptoms. I had a really good time talking with the NP about medication. She was very understanding about Ellie's drug sensitivities, and listened to what I had to say about the drugs that Ellie tolerates the best. She came up with a really good plan for keeping the nausea at bay. We will keep anti-nausea meds on board around the clock until radiation is completed on Thursday. We will use three different drugs that Ellie tolerates very well - some will be administered at the Day Hospital, and some will be given at home. I am so pleased. It is the only way we can get more food into Ellie. If we wait until she needs IV nutrition we could have more side effects to deal with. When Ellie recieved platelets, they again allowed her to take them without Benedryl. She will also be able to keep a backpack of fluids around the clock until Thursday (or longer if she needs it).
Tomorrow we go in early for blood work and her first anti-nausea med before radiation. If she doesn't need any transfusions, we can come home until the afternoon radiation. Then we get a break for the weekend!! No traveling back and forth for appointments. Just resting and eating (hopefully). Then Mon-Thurs. radiation twice a day. I just hope that Ellie can remain fever-free so that she can stay out of the hospital! It would be wonderful to keep her home. The next few days are when she is at the most risk for infection because her counts are so low.
Thank you all so much for your concerned comments in response to my middle of the night plea for prayer. Last night was so hard, but I feel much calmer today. We have a plan that I feel comfortable with - it gives me hope for getting Ellie through the next week of radiation, especially getting her to eat. I feel drastically different than I did this morning after such a tough night, as I was sitting on the radiation table holding Ellie's head while she threw up - while the technicians stood their waiting to start the treatment. I felt so helpless watching Ellie in the mask on that table, wondering how on earth she would get through the week. As usual, God provided a way. The hard things don't always magically disappear, but often God's answer is a path that begins to take shape in my mind's eye when all I saw before was a hazy uncertainty. Even as I'm typing, the song that's singing Ellie to sleep on our CD player says: "When the world's gone gray and the rain's here to stay, [God's] still good." I feel sometimes like we've been blindfolded, spun around, and placed in a forest. When the blindfold comes off and we look around disoriented, it sure helps to discover that we have a compass that points to True North!