Turning 13

 Finding it hard to believe that tomorrow Julia will be 13! Her birthday is technically Feb 29th, but with no leap year this year we call it her non-birthday :) We are going to make a trip to the Smithsonian Zoo in DC tomorrow to celebrate. I was reading her bday list & it broke my heart to see on there, "To get this disease away". Wouldn't it be awesome if that was something we could truly give her. That's why despite the obstacles placed in our path, we still feel like we are doing the right thing by continuing on with this trial. 
    We got the chance today to meet the next patient in the trial & his family. If we keep up this pattern they are going to just have to make Julia the ambassador of the trial. She was patient # 1 & now she has met & talked to patient #s 2 & 3 & answered any questions they had & showed them her battle scars so they know what they can expect. It's very cool for her to be able to do that. It's also wonderful for me to have other parents to connect with who are going through the exact same thing as we are.
    Julia continues to feel good & finally I can say that I think we are seeing her lab results tip in our favor. It's still too soon to do a victory dance, but it feels good to see things going in a positive direction. Still alot of things in the air as far as decisions go, but by monday we should have a much clearer idea of what's next. Really hoping to get an all clear & be able to get her next dose of the study medicine as it was originally scheduled for mar 5th anyway.If that happens then we can expect to come home mar 9th. Feels like such a long way away. We miss home & everyone there, but we are well taken care of here. :)

Trying to Hang in Here =]

This sucks :( We are trying to hang on & be upbeat but the truth of the matter is that over the last 2 months we've been here in Md more than home with family & Julia & I are both over it. Having said that Julia is still feeling great, no headaches, no fevers, nothing. She handles everything so well though, I don't think I would be as good a patient as she is :) The doctors have her on 2 different antibiotics, one she gets by iv every 12 hours, the other they inject right into her ommaya reservoir in her brain every 24 hours. As of this morning they are discussing adding a 3rd antibiotic she will be taking by mouth every 24 hours. They are not getting results as quickly as they would like out of the other two. They have been monitoring her white blood count & they expected to see it stay stable or go down, instead it keeps creeping up although very slowly. As of right now she will remain on the antibiotics until @ least Mar 5th with monitoring going on daily & possibly plans changing as well. If the antibiotics don't clear the bacteria to the doctors liking then they will consider removing her ommaya, which means another surgery :( Obviously this is not top choice as she needs the ommaya to continue in the clinical trial so if they remove it we would have to look @ placing another one @ some point in the future for her to continue in this trial, but every step between here & there just delays her getting her next dose of the trial medicine :( We need prayers that the antibiotics completely get rid of this bacteria so we can continue on in the trial without delays.
Mean while we have a lot of free time on our hands here. Today we are filling that time watching the Daytona 500 :)

A Rough Week & Now Back in MD :(

So a lot has gone on this past week, Julia & I got back to work & school & tried to find our rhythm. Unfortunately her doctors called me from MD as they were concerned with some of her csf samples. It seems when they studied them in the lab they where growing some bacteria in them. It was a slow growing bacteria that is normally found on the skin. They asked me to take her to Shands for a csf draw there so they could see what was going on. I took her on Tuesday & they did the draw. Our Md doctors communicated with the lab @ Shands all week & by Sat we all breathed a sigh of relief when no bacteria grew in her sample. They looked @ it again Sunday & still nothing. However on Monday morning they called @ said it had started to grow :( I was shocked, as were the doctors. I think I'm still in shock honestly. So what does this mean? Well we went to our local hospital mrmc yesterday, Monday & they gave her some antibiotics through iv & then we were on a plane last night headed to Md. They gave her more iv antibiotics last night shortly after we arrived & now she will be getting them every 12 hours for the next 7-10 days. The goal is to knock this bacteria out before it turns into an actual infection. That is the silver lining right now, this thing has the potential to cause meningitis, but as of right now she is not having any symptoms of an infection.  So for now we sit & wait & keep up the antibiotic schedule until the doctors decide the rest of the plan :)

Home Safe and Sound!

Julia & I arrived home around 3pm Friday afternoon. Let me just say, it is sooo good to be home! Sat evening we had an awesome sweet 16 party for Rebecka. We even surprised Rebecka with live entertainment courtesy of our wonderful friends Clifton & Theresa who drove all the way from Louisiana to be here! We owe them a HUGE Thank You! We hosted around 66 people & I think everyone had an awesome time.  I know Rebecka, Julia, Jason & I did :)
Now tomorrow we all get to try to get back into a normal routine.

The Big Day!

Julia finally received the  medicine yesterday morning!!! Once it happened I got just a slight bit emotional realizing how long we have waited & prayed for this day. To think of all the people who have been working to make this trial a reality & all the time & money to get to this day. I know that gods fingerprints are all over this. Dr. Porter & his teams of people have been working on this for years, long before Julia was even diagnosed. For her to be the first patient in this trial has been an amazing experience. I want to say a huge thank you to everyone @ NIH & The Children's Inn. They have taken such good care of Julia & me. We are  now more than 24 hours out from when she 1st received the medicine & there have been no reactions or side affects to report, thank goodness. Just a few more days & we will be on our way back home :) Till next month.

Update

Sorry to anyone who has been looking for updates. I've been neglectful in that area. It doesn't mean anything bad though. Just the opposite, everything has been going absolutely perfect! Julia is incredible! She came through surgery beautifully, on Wednesday morning they began accessing her ommaya to draw cerebral spinal fluid or CSF for preliminary testing. This involves sticking a needle through her skin into the ommaya & using a syringe to draw the fluid. I'm not sure I could sit still for them to do it on me but Julia sits as still as can be & takes it like it's nothing. I admire her strength.
 This weekend we were able to come down to the Children's Inn. We sat this morning & watched the snowfall & the deer outside our patio again :) Tonight we will head back up to the hospital again to Skype with Jason & Rebecka while we watch the Super Bowl. We have a friendly rivalry going on, we are rooting on the local team "Go Ravens!" while they have claimed the 49ers. Whoever's team loses has to cook a full course meal for the others :)
Tomorrow morning Julia is set to receive the cyclodextrin for the first time. We are extremely excited about this, but also a teeny bit apprehensive. I know that God has her wrapped firmly in his arms though. Still it is the 1st time in the US that a child will receive this medicine directly to the brain.
I will be adding some recent picture later today so go check those out if you want on the family photos page. While it hasn't been all fun & games, we have managed to really make the most of our free time while here :)