So much has happened in such a short time. I sit here watching Julia sleep and try to find a way to express everything that has taken place in the last few days.
Monday was the first day of school. Julia was so excited and didn’t need any coaxing to get up. She quickly dressed in her perfect “Julia” outfit and came downstairs for breakfast. She was a bit winded but insisted that she was okay and wanted to take the bus. So after the usual first day photos, we walked to the bus stop and she was off for the first day of third grade. I made sure to let her know to ask to come home if she wasn’t feeling up to it. It was a new beginning, but I could not help but feel sad, not excited for the new year ahead. To our surprise, Julia made it through the entire day, although sluggish and taking a nap before lunch.
Julia came off the bus at 4, smiling and excited about seeing all her friends and teachers. She was happy to be upstairs in the “big kids” room and had to tell me all about her new teacher. Julia was especially excited about getting to ride in the elevator. That evening, she was especially tired and we decided it was best to let her sleep in a bit the next morning. Tuesday came and Julia slept in. She woke with her usual smile but again needed something to stop the pain in her shoulder. After eating breakfast and a visit from the nurse, Julia wanted to get to school. We got her book bag together and I drove her over to Brooke Elementary. We walked to the building, hand in hand, and she told me she was glad to be back to school. We entered the office to check her in and Julia was so happy to see everyone. Mrs. Daly, Julia’s 2nd grade teacher was there to get a big hug and Mrs. Pronchik, the counselor, came to escort Julia to class. It is so hard to give her up to other people, but I know she is so loved at her school.
During the afternoon, I spoke with Dr. Jubelirer from clinic. She wanted to see how Julia was feeling and review the visit scheduled for Wednesday afternoon. In addition to the physical exam and lab work, they had scheduled a CT Scan. In this way, we may understand what is causing the shoulder pain and then perhaps discuss a trial, if needed.
Julia got off the bus a little slower that afternoon. We talked on the way home and she asked if she could wait to finish her homework. I agreed, but as Julia went to rest on the sofa, I checked her book bag to see what was assigned for the evening. Only 15 minutes of reading, but inside Julia’s folder was a paper that her class had worked on during the day. “My Hopes and Dreams for 2013-14”. Julia’s teacher had obviously helped her complete the answers, but the words were all Julia.
Last year in school, my favorite thing to do was….reading by myself.
The hardest thing for me about school last year was….math.
If I could change anything about what I did last year, I would……not want to be sick this year.
In this short class assignment, all the pain and anguish of a child fighting cancer, of my child fighting cancer, was there in black and white. My heart broke.
The questions went on –
This year, I am really looking forward to….learning about science. I am a little worried about…getting lonely and missing my parents and Sophie.
And on the back a simple goal ….I would like to be a better singer because I love to sing.
Julia went to bed early that night. She made sure to read her 15 minutes – “I don’t want to fall behind, Mom.”
Wednesday morning, Julia was very anxious when she woke up. She told me she wasn’t feeling well and was scared about having a scan later in the day. I reminded her about what would happen during the scan and that she was always so brave – the bravest of all. During the drive to the clinic, we spoke some more and Julia asked to listen to Wicked, and she sang, but only a bit.
When we arrived at clinic, Julia became more tense. As we walked to the day hospital, she said to her nurse for the day, Moi, that she wasn’t feeling well. They walked to a private room and Moi checked Julia’s pulse/ox level right away. It was low, so she immediately got Julia oxygen. It took some time to place an IV, getting Julia to calm down enough to place the line; waiting for the numbing cream to work. Julia complained about pain so a dose of morphine was ordered. How could things be changing so quickly?
Julia was taken for her CTScan, John and I holding her hands as she went through the big circle, holding her breath when asked. Then we waited and Julia slept. We watched as Dr. Jubelirer and Pattianne came back from meeting with the radiologist. They walked to their office – making calls, typing emails. Janet, one of Julia’s favorite nurses, came to tell us that the doctors wanted to finish up with the other patients before we spoke.
Finally, after what seemed like hours, we walked with Dr. Jubelirer, Pattianne and Eileen, our social worker, to one of the exam rooms to speak in private. Janet sat with Julia to keep her company. Somehow, I knew what was to come.
Julia’s tumor has started to grow again, and quickly. In three weeks, it had grown to her upper lung, almost to where it was back in late May. The Temodar was not working. They had spoken with Dr. Fox, the doctor that handles the clinical trials, and because Julia’s condition is changing so quickly, so drastically, she does not qualify to be part of a trial. We could try to change the chemo to oral Etoposide in hopes that it could stop the growth, or maybe by chance, shrink the tumor even so slightly.
Once again, my heart broke.
We went back to Julia, as they tried to find a pharmacy that had the new chemo. The nurses were checking on Julia and to flush her port before going home. Megan noticed that Julia felt warm. She had a fever – a game changer. Since Julia has a port, the standard of care requires a blood culture and dose of antibiotic. At this point in time, it was late and it looked as if we would need to head to the hospital in order to be treated. The clinic pharmacy had closed and only a few of the nurses and Dr. Tracy (Jubelirer) remained.
Everyone at clinic knows that Julia wants to be home and working together, they put together a plan. Within the hour, Dave, the clinic pharmacist, drove back to work to prepare the antibiotic. Megan had arranged for a courier to bring Julia’s Etoposide from the hospital and then take back the blood culture. Janet made sure Julia was comfortable, ran the meds and then took out Julia’s IV and de-accessed her port. Tracy and Pattianne worked to notify the PACT team of the changes and follow-up that was needed. We are so blessed that Julia is treated at KoP. We are so blessed that they love and truly care about Julia. We got home about 9 PM last night thanks to everyone at KoP. We were home, where Julia wants to be.
Julia slept through the night, waking only once to go to the bathroom and take some pain meds. Today, she slept for most of the day, her breathing more labored, faster. I spoke with the PACT team twice about Julia’s medication and her Hospice nurse, Kristen came to check on Julia. Jen, the art therapist, visited this afternoon, but Julia was too tired to get up. So Jen, sat beside Julia on the bed, talking with her for a bit about camp and holding her hand as she fell back to sleep. Dr. Julie called from vacation to check on Julia, along with calls from Dr. Tracy and Pattianne. As word spread, friends and family began to call.
The PACT team is scheduled to visit tomorrow to revisit Julia’s medication. We are working to find the right balance of meds to keep Julia comfortable and also not have her be so sleepy.
I will be spending all my time with her, so I will not be updating this page as often.
This week has been a nightmare. I keep trying to wake up. My heart is broken…it is too soon.