Wednesday, August 26, 2009

Julia Update

Hi Everyone,

Julia was at the hospital yesterday for what was suppose to be only clinic and blood work, but unfortunately it turned into an 11 hour day. Julia's doctor was concerned that Julia had blood in her stomach/bowels. Julia has been having occasional blood in her stool, and complaining of stomach pain. One of her blood tests yesterday were quite elevated which made the doctor suspicious that there was something going on in her gut. Therefore she ordered an ultrasound to be sure. The good news is that overall the ultrasound was better then expected. There was some bowel wall thickening, but this is common with kids on chemo. The bad news is that doctors are still baffled at what's going on. Like I've been told many many times in the past by different doctors, Julia is a mystery. She tends to show signs that something really bad is going on but then passes all the tests. And believe me we have had every test imaginable.

It was very funny yesterday as I brought Anthony with us (since he had been asking me forever to bring him), and he was so curious and scared at the same time about what was going on. When Julia had her ultrasound she climbed up on the bed, lifted her top, and watched a movie like nothing was going on. Anthony on the other hand had a look of complete fear, and was asking all kinds of questions about what was going on. He was even scared about the gel the technician put on Julia's belly. It really showed me how different they really are. Overall, it was good for Anthony to be there and understand what Julia goes through on a weekly basis. They got to play in the playroom, and do crafts with the volunteers. He got to meet all of Julia's friends she has made, and see that it's not all bad when we are at the hospital.

Overall, Julia is doing quite well. So well, that I made the request not to go to clinic next week and have Julia's nurse draw her blood from home. She will return the week later for chemo. The doctor agreed that we could try this out, so I pray that this doesn't bit me in the but. We are all happy to get a week break from the hospital.

Julia will get her last cycle of chemo on September 11th, heart echo's on September 11th and October 22nd, her heart biopsy on October 16th, and heart transplant clinic and kidney testing on October 22nd. Once we have finished all these tests I hope and pray that this will be it, and we can have a quiet winter. If all is well we will try and organize Julia's make a wish trip to Disney for sometime early next year, because God knows she deserves it.

I would like to ask everyone to say a prayer for a very special little girl and her family that we met in the hospital who has Leukemia. She is very sick, and is battling a very serious infection right now. Our thoughts and prayers go out to this incredible little girl and her parents.


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