Hope Lives Here

March 2, 2013

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 for the foreseeable future. This will allow us to drain any fluid build-up at home and prevent Julia from having to have multiple procedures (which would involve sedation, etc.) each time the fluid returns. Unfortunately, Julia will not be able to take a bath or swim (something she loves) while the drain is in place.

While we waited, Julia and I worked on decorating her room. If you look up from the Emergency Room, you will see Julia’s name with each letter in a different color like a “rainbow” in the window of her room. Julia also painted a sign with her name for the door and another with a large yellow sun in the corner, asking me to write “Welcome Friends! Really Sunny Inside! Sunglasses Optional.” – Julia’s optimism always has a way of appearing even on the stormiest of days.

Julia went to the IR at 3 PM so the team could remove the fluid and place the drain. Julia took Kevin (her trusted companion) for the ride. To our surprise, when we arrived at the IR, one of Julia’s nurses, Laurie, from the King of Prussia clinic was there to meet us. When Julia saw her familiar face, out came her smile and you could see some of the worry leave her face. The IR team came out to introduce themselves to Julia (and us). Julia asked them a few questions about the procedure and showed them Kevin so they knew he would be with her. After a few minutes, they wheeled Julia into the IR room and the doors shut behind them.

The entire procedure took about one hour and Julia came through it very well. They drained about 650 ml of fluid from her right lung and immediately, Julia’s breathing improved. We were able to go in with her during recovery and she was sleeping peacefully, only to wake for a short period when she was being transported back to her room. When we arrived, Dr. Stern, Dr. Mangino and the social worker were there to meet us. They had just come from the Solid Tumor Conference.

We got Julia situated in her room and went to a conference area to discuss next steps. There is no way to sugar coat the discussion. Julia’s cancer is finding a way to live through all the chemo, radiation, and surgery. Somehow it hides and changes itself so it can live through all the toxins that Julia had taken, all the radiation and the surgeries she has had. Dr. Stern and Dr. Mangino presented a few options that can be used to try to control the growth of the tumors and hopefully gain the upper hand.

The doctors are looking to see if Julia will qualify for a Phase 1 clinical trial. This is a combination of two new drugs that Julia has never had before. The other options include drugs that have already been used, so it seems logical that a new agent may bring better results. After all, this cancer has found a way to live through the other treatments so something new may bring us the miracle we need. Dr. Mangino is reaching out to the doctor leading the trial in D.C. to discuss Julia’s case and see if he feels she would be a good candidate. In the meantime, there will be some scans and testing that needs to happen to check if Julia is able to participate in the trial.

Julia had some issues with keeping food down last night (most likely a result of the anesthesia). She had a good night’s sleep and they were able to take her off the oxygen last night.

We know there will be lots more information to come over the next few days and we will keep everyone informed as we understand the next steps.

Hope lives here is the motto of Children’s Hospital of Philadelphia. Now more than ever, we realize that and need to believe.

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