Friday night Julia had an MRI of her brain. This was scheduled as part of the scans to clear her for the new Phase 1 trial. Since this was not planned in advance, they had to work to fit her into the daily schedule. We found out late in the afternoon, that Julia would not have her MRI until 9 PM. She was doing well during the day (taken off of the oxygen) and we had the option of her being discharged after the scan or waiting until the morning. With the test taking 2 hours and the prospect of having to head home in the early morning hours, we decided to wait until the morning to head for home.
At 8:30, the nurse came in to let us know that Julia’s scan was going to be delayed until 10 PM. With that being said, I convinced John to go home so that he would not be too tired for the drive. Julia’s scan did not start until almost 10:30, so it was a good choice. Not only was John home at a reasonable time, but since Julia and I did not get back to her room until 12:15 AM, we were not moving her after she fell asleep for the night.
As Julia and I sat waiting for the MRI, she was especially talkative, making sure the technicians knew where she was from, that she was eight years old and that she had been through this before and was able to complete it without sedation – “I watched a movie last time”.
We had to wait some time while the technicians looked into the new drain to see if there needed to be any precautions taken during the test. As Julia and I waited, we exchanged our usual “I love yous” and some big hugs. Julia then told me that she is going to college (“not sure where yet Mom”) and then will get a job and get married. She then told me that she wanted two children – “twins, a girl and a boy, and they would look alike”. Julia then started to tell me that no matter where she lived in the future, we would be together. “Like John and James, even though they moved away for work and school, we are always together – we’re a family”.
“You know what Mom? I have to tell you something I heard on a TV show.” Okay Julia, what is it?
“Can you write this down Mom? I think it’s important”. Not sure where this was going, I got out my I-phone and started to type down what Julia was saying. She dictated and asked to see everything I wrote down.
“The present is a gift. If you keep worrying about the future, you’ll miss everything in the present. Live your life in the present and then you’ll be ready for the future.”
“That’s really what it’s about Mom, right? I get it now.” Right Julia, holding back my tears, you do get it.
“Can you send it to everyone Mom? To John and James, to Laura, to everyone?” Yes, Julia, I will.
Just then, the technician came to take Julia to the MRI. I pushed Julia’s wheelchair into the room and helped her get onto the MRI table. I watched as they placed the earphones on her head, listening to Adele singing since the machine did not have a DVD player. Humming to the music, I watched as they placed the cage over Julia’s head – so brave, so strong.
The attending Oncologist came to see Julia early the next morning. Great news -the scan was clear! Unfortunately, during the night, Julia’s oxygen level dropped and she had to go back on support. The doctor’s decided that they wanted to see how Julia was during the day before letting us go home. Julia was able to come off of the oxygen while she was awake, so it was decided that we would be sent home with oxygen support to be used while she was sleeping.
Finally, after waiting all day, we were on our way home at 6 PM. Julia was quite tired when we got home and complained about feeling cold. But, she was so happy to see Pop Pop and her dog, Sophie. Julia bundled up under a blanket on the sofa and rested while we got unpacked and settled in.
102.4 F – a fever! Right away, we called the oncologist on call, preparing to head back to the hospital. After checking her chart and reviewing a few things, the oncologist said we should start a regime of Tylenol and watch Julia through the night. Since the drain in Julia’s lung is not in a central line, she felt it wasn’t an infection. The tumor and the fluid buildup in Julia’s lung could cause a fever to develop. We were to call back if the fever persisted with Tylenol, Julia remained listless or her breathing was labored. Julia rested comfortably during the night and at the 4:30 AM check, she no longer had a fever. One night home in her bed – it’s a good thing.
Monday we will head to the hospital and get Julia’s lung drained. This needs to happen until a Home Health aide can be arranged to come to the house to support us during the first few times that we do this on our own. Also, we hope the week will bring about a decision on next steps for treatment and the beginning of a renewed fight. Until then, like Julia told us, today’s a gift.