A Good Start to the Week

August 25, 2012

Today, Julia’s doctor’s visits started out at the King of Prussia clinic for a brain MRI, followed by a drive into the city to visit with her surgeon and an anesthesia consult.

We arrived at clinic for an 11:00 AM appointment. Julia made sure to make the rounds and see all the nurses and Dr. Julie (who got an extra big hug) to tell them about her big surprise yesterday – a trip to the girls’ spa, Sweet & Sassy, and a special spa day party with some of her friends. It was such a treat to see Julia’s face when she realized her friends were showing up for a spa visit with her. The girls got mani-pedis and “Cotton Candy” mini-facials, along with special t-shirts (thanks to Lindsey’s artistic talents) for the first ever “Spa Scouts” meeting. They were also treated to a limo ride home (thank you, Lisa). When they arrived at the house, Julia had the girls all form a circle and each put one hand in the middle – raising it in the air and declaring “Spa Scouts Forever”. It was a great day and Julia needed to show all the pictures on the phone to everyone at clinic.

Once Julia made her rounds and gave plenty of hugs, it was time for the IV to be placed. With a little “freezing spray” and a count of 1-2-3, The IV was placed and off to the MRI room we went. Julia lay down on the table, her head in a “cushion” and ear phones and goggles put in place. She was able to watch a movie during the scan and picked “Enchanted”. I reminded her that she had to lie perfectly still and could not sing to the music. She held Kevin (her trusted stuffed friend) and they placed a cage over her head and slid her on the tube into the center of the machine. The noise started – bangs, clangs and whirling noises – and for more than one hour, Julia lay there, not moving, answering questions when the tech, Alice, spoke with her through the ear phones. Halfway through the procedure, Alice came into the room and placed the contrast in the IV. I watched Julia from the sidelines, amazed at her strength and ability to lie still for so long – only 7 years old and able to focus on the directions, not thinking of the machine pounding around her.

When the test was over, we went back to the nurse’s station. Julia dressed, but the IV was left in her arm for the trip to the big CHOP in case they needed to draw labs at her appointment with surgery. When Julia dressed, we realized that it was best to have her flu shot for the year before surgery and so the biggest trauma of the day happened. After some tears, Julia got her shot. The surprise and rush of it all did not make it easy. Once the shot was over, Julia got hugs from everyone and off to the Big Chop we headed.

We met with Dr. Mattei at 2 PM. Julia’s surgery is scheduled for Friday, but he is going to see if he can get back some of the ER time he gave away on Thursday and move her surgery up a day. The plan is to take the larger tumor out of her left lung first. This is the harder procedure and will require more time. They plan to enter through Julia’s side and move the muscle layers, rather than cut them. This should make healing a bit easier. There is a good chance Julia will need a chest tube with this procedure.

If all goes well with the first surgery, they will then remove the smaller tumor in her right lung. This surgery can be performed less invasively. Dr. Mattei was very cautious and said it will be a difficult surgery for Julia and they want to make sure she comes through each part safely. If there are any concerns, they will only do one part of the surgery and then Julia will need to have the other surgery a week later. The goal is to get both tumors out and have radiation start shortly after, but most importantly we need to make sure Julia is safe. Dr. Mattei said we could expect her to be in the hospital for 3-4 days and it could be possible she will have a night in ICU.

As Dr. Mattei, explained the procedure, Julia had to show him all her “battle scars”. Showing him the first scar from her kidney removal, saying, “You can hardly see it now, you did a good job”. Looking at her port scar Dr. Mattei explained to Julia that this one is a bit harder to make go away as we had to go there twice – “I know, that’s ok”. Once our questions were answered and we signed the consent, the nurse drew Julia’s blood for the labs. She removed the IV and we got ready to meet with anesthesia. Dr. Mattei came back in the exam room and said Dr. Stern had just emailed him, hoping to reach us. His smile said it all – the MRI was clear!!!!

With a bit of a bounce in all our steps, we went off to meet with anesthesia. It was a simple visit as we can easily answer the questions – an all too familiar meeting. Once the instructions were received, we headed for the long ride home. Too late to make it to swimming tonight, but not too late for homework a bedtime story and lots of cuddles.

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