Defying Gravity

March 31, 2013

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 good news – it appears that the Topotecan is making the tumor shrink!

Friday afternoon, Julia headed to the “big CHOP” to have a chemo port placed for the third time and to evaluate the need for the drain in her lung. Since the catheter in her lung does not extend to where the fluid and tumor are in Julia’s lung, the IR doctor will need to evaluate the need for the drain to remain. Since there is an open wound when the drain goes into her chest, there is a chance of infection, and so having the drain removed would be preferable. However, if the lung still has more fluid in it and needs to continue to be drained, there is a chance the drain will remain.

We arrived at CHOP at 12:45 PM and Julia was scheduled for her procedure at 2. It was a long morning since Julia was not able to eat anything past 5 Am or drink any clear fluids after 9 AM. We were taken back to sedation on time, but soon found out that there had been an emergency and Julia’s surgery would be later than expected. ChildLife made sure that Julia had plenty to do while she waited, bringing arts & craft and games to play.

Unfortunately, as time passed they got worried that Julia’s sugar would dip and she would get dehydrated, so they decided to put in an IV. Usually, they wait until she goes into the procedure room, has some gas and goes to sleep before placing the IV. Julia’s veins have been so bruised recently that the only place they could find a good vein was in her hand. She bravely sat as they slowly placed the IV – “that wasn’t too bad.”

At almost 5 PM, the anesthesiologist came in to go over Julia’s medications with us and soon after, “Dr. Mac”; the Interventional Radiologist came in to discuss the procedure. He was the same doctor that placed the drain in Julia’s lung, so we were glad to know that Julia would be in his hands again. When it came time to go to the procedure room, the anesthesiologist gave Julia a little “giggle” medicine through her IV. Julia said it stung when it first started to go in and asked him to take it slow. The medicine quickly took affect and Julia said she was sleepy. As the doctor started to remove the syringe, Julia looked down at the medicine left in the needle and smiled – “You aren’t going to waste that, are you?” The doctor said no and proceeded to give her the rest of the dose. Julia was almost asleep as they pushed her stretcher into the procedure room. It was 5:15.

Two hours passed as we anxiously waited to see our girl. Dr. Mac came into the waiting area and told us everything went fine. They placed Julia’s new chemo port above where her previous ports were placed. He said that they x-rayed her lung and also did an ultrasound. There was minimal fluid in the lung and since Julia was not symptomatic, the decision was to remove the drain. Julia was resting and all of her vital signs were stable.
Julia slept off the effects of the anesthesia for the next two hours and woke up asking for ice chips. Slowly she dressed and we headed home. It was a long day, getting back to “home, sweet home” a little after 10 PM. She was so happy to be home, but went straight to bed and slept peacefully until this morning.

Julia is a bit sore, but taking Tylenol as needed. Her port was left accessed in preparation for chemo starting again on Monday. She is eating well, making up for a day without anything to eat or for that matter, really drink. Time to gain her strength and get ready for the next two difficult weeks of chemo – Keep doing your stuff Topotecan! Keep Defying Gravity Julia!

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