Last week, Julia had a full week of chemo. On Monday, Julia had an IV placed and each day she received her chemotherapy – Zofran for nausea first and then Topotecan. Julia went home with the IV and we would flush the line later in the evening and early the next morning. Each day, we would hope that the IV would last and Julia would not need to be stuck again. Julia’s veins have not been cooperating – years of blood tests and IV, have left them scarred and it has been difficult to get blood and IVs, each time taking several tries to find a vein to work. Luckily, Julia’s IV from Monday lasted all week!!! This never happens – usually the IV will last three days if you are lucky. On Wednesday, the nurses we not able to use the IV for blood work, so it took several tries to get a vein to give enough blood for testing. By Friday, we thought the IV vein was never going to cooperate, but MJ, her nurse that day, was able to pull the IV ever so slightly to get blood return so Julia didn’t need another stick!
Throughout the week, Julia’s doctors monitored her counts and we watched her levels fall as a result of the chemo. By Friday, Julia’s WBC was .9 and her ANC was 72 (an indicator of the body’s ability to stop infection). We knew, talking to Julia’s doctor that she would need to stay away from anyone that wasn’t feeling well or had been with anyone that was sick.
Julia was wiped out each day from chemo and would come home and sleep until dinner. She would wake up and eat a bit and then back to sleep until morning. With all the toxins in her body, no wonder she was tired, but we were seeing her wake in the morning feeling better than before – smiling and ready for the new day.
On Friday, Julia was especially happy arriving at clinic. She couldn’t wait to tell all the nurses and doctors that she brought coffee and cake in celebration of the end of chemo week. Julia seemed more like herself this morning, spending time chatting with everyone as we walked into clinic.
Friday night around 9 PM, Julia began to run a low fever. We started to monitor it and by 10:00 PM, it was 102.5 F – time to head to the hospital. Julia slept the entire ride and by the time she was triaged at the “BIG CHOP”, her fever was gone. Even though Julia didn’t have a fever when we arrived, she was admitted for IV antibiotics. We sat in the ER all night, waiting for Julia to get a room on the oncology floor, finally being transferred at 6 AM.
Unfortunately, Julia was not able to attend Amanda’s (Julia’s future sister-in-law’s) wedding shower Saturday afternoon. “I’ll be ok Mom. It’s more important that I make it to the wedding. ”. We decided to put technology to work and arranged for Julia to “SKYPE” into the shower. She joined for about an hour and was able to see everyone and say hello. Julia fell asleep just as Amanda started to open her gifts, but we caught everything on video tape so she could watch at a later time.
Julia was discharged Saturday night at 7 PM after two rounds of antibiotics. Back at home safe and sound, we settled in for a quiet night. Sunday was spent resting and for the first time in some time, playing Disney Dance Party on the X-box. It was so good to see Julia dancing, laughing and just being a kid. She even planned a “family dance hour” with snacks and Julia dancing with everyone – she even got Pop Pop in the act.
This morning, we woke up at 5 AM to drive to Washington, DC for a consultation with Dr. Jeffrey Dome at Children’s National Hospital. Dr. Dome was very thorough and spoke with us about the Topotecan study. Since Julia has not had chemo for a year, she was a good candidate for trying Topotecan with hopes that it will be effective on her tumor. He had reviewed Julia’s charts and went through her past treatments with us. He was waiting to see her last scans as they had not yet arrived from CHOP. Dr. Dome examined Julia and was very happy that he was able to hear some breath sounds, although very diminished, in her lower lung.
Dr. Dome laid out next steps, but first things first we need the Topotecan to work. Dr. Dome stated that he would like to see a 30% reduction in diameter (or 50% reduction in volume) at the end of 2 cycles of chemo. We will hold our breath until – we need to just take one day at a time. Dr. Dome will continue to consult with Julia’s doctors on her treatment.
Julia started to have nosebleeds through the morning and when her lab work came in it confirmed what we already knew – Julia needed a transfusion of platelets. So here we sit in another oncology clinic, Julia talking to all the nurses and doctors, introducing them to Kevin, and charming them with stories of home with Sophie, her favorite shows Wicked and Annie, and the upcoming wedding and her most important duties as the flower girl.
This week will bring several visits to see Dr. Julie and if Julia’s counts are good enough at the end of the week, she will have a port placed with IR. Also, Dr. Julie said that they would look to drain her lung again. If there is minimal fluid removed, she may have Julia’s lung drain removed at the same time.
One step at a time, one day at a time.