RockingJuJu

UPDATE:

I completely forgot to mention earlier that Justin is going to be on television tonight. Yesterday he interviewed the candidates for the 52nd district state house seat. It will be only air locally on channel 11. I believe that it will be on at 7pm tonight.

Little Miss Jacey had her appointment with the ear specialist yesterday. There were no big surprises. The doctor was shocked that a child of Jacey's age would be having the problems she is and then was amazed that she has not suffered any hearing loss at this point. He wants to place tubes in her ears which was not a shock at all. Jacey is not happy with the thought of having surgery again and I can't blame her. It should be a quick and easy surgery. We still need to wait to get the okay from the cardiologist but the ear doctor said if she has the PFO it is not a big deal.

The weather is YUCKY here today. The kids had a snow day. I guess we are supposed to get a few inches more tonight. We are supposed to be going out of town tomorrow. I am hoping the roads are not to bad. I am really looking forward to getting away for a few days.

Jacey has been spending a lot of time on the internet following Jesse McCartney's radio promotional tour. His new cd is coming out in May and Jacey can hardly wait. Jesse has also began posting videos of his travels on youtube and Jacey is loving that. Be sure to stop by and check out Jesse's new video!

Not much going on until next month. Justin is still scheduled to get surgery March 19th and Jacey has appointments with the Eye & Heart Specialist.

Jacey got sick again this past week. This time she thought she would mix it up a little and got Strep Throat instead of an ear infection...then she so kindly shared it with me. We are both feeling much better. Monday we are headed to the ear specialist. Jacey has been running around having a fit about her ears. Apparently her ears are making popping, cracking and other annoying sounds. She gets very upset about these noises especially when she is laying down to go to sleep. I hear her up in her room yelling at her ears. I am anxious to see what the doctor will have to say about the endless fluid she seems to be carrying around. It is hard to believe but she has had a constant problem with her ears since the beginning of December.

I sat down to fill out the paper work for the doctor and shook my head at each question. You know every time you mark yes to a question they want you to explain. Page 1 I had to mark 16 out of 22 questions with yes. Since this doctor is located at the hospital I have decided to just write "see medical records". The last time I actually took the time to fill out those kinds of question for a new doctor it took me a good hour. The doctor didn't even look at the thing and then I had to spend 15 minutes telling him her history. I have said many times that I was just going to type it all out. I also keeping thinking that we are running out of new doctors that we can visit but Jacey's body keeps seeming to find us a new one.

When we were at the clinic last they gave us a folder from The National Children's Cancer Society. The folder has a picture of a beautiful mountain and lake on the front and it says The Mountain You Have Climbed. My first thought was are we really done climbing it? I guess coming back down the mountain can be just as challenging as going up it. I just feel so overwhelmed lately.

We are going to the doctor a lot these days. She has an appointment with the eye specialist coming up in about a month. We will also be seeing the cardiologist next month. Justin is also still scheduled for surgery next month, cross your fingers that it doesn't get cancelled. The good thing about next month is it will be Jacey's 2 year remission month!

In preparation for the crazy month that is ahead we are taking a short trip next week. I wonder where we are going...well can you believe that it has something to do with Jesse McCartney? He is going to be in Washington DC doing a radio promotional tour for his new CD that is set to release May 20th and Jacey couldn't be more excited. Jesse and his management have went above and beyond for Jacey. They have delivered so many wonderful memories and smiles that there is no way I could ever thank them enough. The kids are going to miss a few days of school but we are going to hang around DC long enough to visit all the educational places they have there.

Jacey went back to school today. I am still unsure what is going on with her ears but they are not hurting so that is a sign that her eardrums may have ruptured. I should call the doctor and get her back in because her will need some meds to help them heal again.

I have finally gotten around to uploading the pictures of Jacey's new scar. She had been wanting me to do that for sometime. She is quite proud of this scar for some reason. I think she just likes is so much more than "The Spot". I really think she is getting another spot right below where they removed the other one though. I just don't know but it certainly looks just like the other one did when it first appeared. You can look at the pictures in the galleries.

Jacey got a really nice valentine gift from the LLS Team in Training that she is an honored hero for. It really brightened her day. She took the time to open and read every card they sent. There was also a box of chocolates and a cute bear that she loved. Thank you all so very much for doing that for her.

I took Jacey to the doctor yesterday. The doctor was very concerned that Jacey still had fluid behind her eardrums. She said her eardrums had finally healed but she needed to get the fluid to drain. She gave her some meds to do just that. In the middle of the night Jacey came in crying that her ears hurt. I am just at my wits ends with her ears as I am sure she is as well. I am not sure if her eardrums ruptured this time but they are draining. The doctor had told us that it is very important to get the fluids out because after it sits there for so long it turns into something like glue and she will lose her hearing. That was just what I wanted to hear. At any rate she schedule to see the specialist on the 25th and it can't get here fast enough. I am not sure if they will be able to place tubes until we figure out what is going on with her heart. Anyway we are just waiting for a break from all of it.

', 'I took Jacey to the doctor yesterday. The doctor was very concerned that Jacey still had fluid behind her eardrums. She said her eardrums had finally healed but she needed to get the fluid to drain. She gave her some meds to do just that. In the middle of the night Jacey came in crying that her ears hurt. I am just at my wits ends with her ears as I am sure she is as well. I am not sure if her eardrums ruptured  this time but they are draining. The doctor had told us that it is very important to get the fluids out because after it sits there for so long it turns into something like glue and she will lose her hearing. That was just what I wanted to hear. At any rate she schedule to see the specialist on the 25th and it can't get here fast enough. I am not sure if they will be able to place tubes until we figure out what is going on with her heart. Anyway we are just waiting for a break from all of it.

I think I have finally convinced Jacey that she is fine. She is not going back to the doctor until the end of March. They said to expect to be there for atleast 2 hours. Long appointments are always tons of fun. They are going to run an EKG & do the ECHO again. The doctor will then explain everything to us. I still find it odd this has been missed in the past. I looked back and Jacey has had 6 previous ECHO's done. I had not realized it had been that many.

Jacey has an appointment tomorrow with the family doctor to see how her ears are doing. Then we are off to the ENT on the 25th. Then we get almost a whole month off before we see any more doctors. It is time to go back to the Eye specialist already. That always makes me nervous but I am sure all is fine because Jacey has not mentioned any change in her vision.

A few weeks ago I took on a whole new attitude about Jacey's health. I was going to stop worrying and just look into the future. Jacey and I have been spending a lot of time talking about the HUGE party we are going to throw in 2011. Cancer can bite me because we are done and over that!

This new found attitude has done wonders for my mental health. Even going to the doctor yesterday was no sweat. Nothing could be wrong with Jacey she had already dealt with everything possible and even made up a few of new things. I mean seriously her lungs and kidney's had already taken the biggest hit possible. What could top them not functioning? We have beaten high blood pressure & seizures. She has a blind spot in her eye & her ears have clearly been effected. No big deal we can handle those. Her brain has had a slight set back, but again nothing we can't handle. We dealt with several other problems along the way but they were very small compared to everything else. Of course there were still things that could happen be really what are the odds?

Well I was sitting at school with Jacey tonight and the phone rang. I had just said I was only answering it if was someone really important. Imagine my surprise to see that it was the hospital. Okay no big deal they are just calling to tell me all Jacey test results are good...The voice on the other end had a great amount of hesitation in it. She asked if this was a bad time and seemed to want to make sure I was ready to receive the news she was about to deliver. This gave me an instant sick to my stomach feeling. I just knew what she was going to say but I was wrong. She said all of Jacey's labs & test came back good, I was just about to do the happy dance and then came this awful word...except. What do you mean except! She began to explain to me that Jacey had a small hole between the left & right side of her heart. This is a hole that most newborns have. It is called Patent Foreman Ovale. I am very confused by how this hole could have been missed since she has had so many ECHO's done before.  I have to call the cardiologist in the morning to get her in for further testing.

So much for my I am not going to worry theory. I am going to try to put it out of my mind though that is easier said than done. I do wish I would have been at home when I got the call. I wish I wouldn't have been in a place where I couldn't hide the fear that was taking over me. I had no choice but to try to explain to Jacey what was going on since she pretty much could see there was something wrong. I do wish I could have not told her until I knew more about it and had come up with a better way to explain it to her because now no matter how much I tell her she is fine she is scared.

We arrived at the hospital around 8 AM. They had the list of the 11 doctors we would be seeing hanging on the door. (Normally this would be overwhelming for me but I have grown accustom to such things after 16 years of taking Justin to the facial clinic.) I must say they have a very well oiled machine and we moved through the doctors rather quickly.

Jacey was not thrilled to find out that she was actually going to have blood drawn because they needed so much. Her veins were clearly not happy about  it either because it took them several pokes before they could find one that was willing to give them blood. She was then swept away to have her hearing tested and they returned to let us know that her right ear is full of fluid and may rupture AGAIN!  It was actually a good thing I guess though I hope we get the skip the rupture. They were quick to get her an appointment with an ENT. We spent a lot of time talking with them about school issues and getting her back in counseling. Jacey got an ECHO done and thought it was neat to see her heart. I was shocked that she didn't remember having that done before. They printed out pictures of her heart for her. We got to make a trip over to the other side of the hospital to have her lung function tested and that is just a fun test. They showed us how much her lungs had improved since they last time they had tested her. Then it was off to get an x-ray and bone scan done. Jacey thought the bone scan was very neat and now has a copy of her skeleton.

The big part of the day was just talking with the doctor about things chemo can effect and how they will continue to test for those problems. Jacey is still gaining weight but is now over 5 foot tall. They don't seem as concerned about her rapid weight gain as I am but I am dealing with one issue at a time right now. They are going to call with all the offical results in the next few days. Everyone agreed that Jacey had dealt with her share of problems.

Jacey has been so excited for Jesse McCartney's new CD DEPARTURE. She has been listening to the new single LEAVIN non-stop. She loves it! It is a whole new sound for Jesse. Jacey is asking that everyone listen to Jesse's new sound.This will be the 1st single released on his new album DEPATURE.

You can download the song by following this link.

A special thanks to Jesse McCartney's Promotional Team for giving us this sneak peak at the new sound.

You can visit them on myspace.

I will be leaving this as the main post for a while so be sure to sign in for other updates. Jacey does have a big appointment coming up this week. We are only expecting GOOD news though.