Defying Gravity

Thursday, Julia had a clinic visit to check her counts. The good news is that her counts are on the rise. While at clinic she entertained the nurses with songs from “Wicked”. (You can see a short take of Julia singing at http://youtu.be/_pezHYIgdxY). Once again, Julia is “defying gravity”. They took an x-ray of Julia’s lungs to see if the fluid is going away and try to decide if the drain in her lung could be removed. It is clear from the x-ray that there is only a small amount of fluid in the bottom of the lung and the tumor is definitely smaller. In the x-ray prior to treatment, her entire right lung was tumor and fluid. Now, there is only tumor and fluid at the bottom of the lung. Some go

Super Kid

Julia and I went to clinic Thursday morning to check her counts. The hope was she would be able to have a port placed on Friday, if her counts allowed, but Julia’s ANC was only 10. This is the lowest it has ever been and an indicator that she would not be able to fight off infection, so port placement would have to wait. With Julia’s counts being so low, she would most likely not begin her next round of chemo on Monday. We would come back to clinic Monday, check counts and if they were still too low for chemo, plan to have Julia’s port placed Friday. Until then, we needed to keep Julia away from anyone who was sick and have a quiet weekend close to home. “I don’t want to lose my hair again –

One Day at a Time

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,

Chemo Begins – One Week and Counting

Last Tuesday, March 5, Julia began her new chemo regimen. She will receive 2 weeks of daily infusions of Topotecan (with the weekend off). The third week will be a week off so that she can have her counts rebound. Julia will have two cycles of this treatment and then scans to see if the chemo is having any effect on the tumor. It will be six long weeks to wait, but six weeks to also let this drug do its job. Julia will be going through the first cycle with IVs placed to deliver the drug. This is difficult on her because the IV will only last a few days and will need to be replaced several times during the week. Last week, Julia’s veins did not cooperate and she had to be stuck several times

Update and a Direction

There is so much to update since the weekend. Julia began chemotherapy yesterday. As we posted, last Thursday we were looking at her being part of a Phase 1 clinical trial. This was one of the options that the Solid Tumor Board at CHOP had discussed with us. The reason that this option seems like a logical choice is because it included new chemo agents that Julia had not yet been given. The scary part is that this is a Phase 1 trial – Phase 1 trials primarily see if the body can handle the toxicity levels of the drugs. The doctors were looking to see if Julia would qualify for the trial by reaching out to the hospital where it was coming from – during the meeting they mentioned Children’s Na

The Gift

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. Wi

Hope Lives Here

Today was a long day of waiting and worrying. Julia wasn’t able to have anything to eat or drink after midnight since they were trying to add her into the schedule for the day’s interventional radiation procedures. Not knowing when this would take place, we had to be prepared. Julia stayed busy during the day (thanks to Sarah with Childlife) and had labs and an echocardiogram as we waited. Early in the day, John and I spoke with the oncologist on duty, Dr. Jenn Mangino (who we knew from some time she spent at King of Prussia) about the options with the draining of Julia’s lung. After some discussion, we decided that Julia was going to have a drain placed in her lung that will remain there fo

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Julia's Grace Foundation  |  PO Box 1081, Royersford, Pennsylvania 19468