Good news from tests

- Mild increase in amount of ethmoid and maxillary sinus disease.
- There is thickening identified in the middle ears surrounding the ossicles consistent with history of otitis.
- Relatively unchanged appearance of the increased MIBG in the left supraclavicular region and upper mediastinum
- No new foci of increased activity identified
- Interval decreased size and enhancement of the liver lesions.
- A small left para esophageal lymph node which has slightly decreased in size since prior study.
- No other significant findings.

Scans and tests

Was a long day today...

Had to stay still for the MIBG scan; she did fantastic. Didn't need sedation.

CT Scan. Also did real well stay very, very still.

Labs were good. 3 Foot 1 inch tall, 31 pounds. Gaining steady weight.

On the scanner.

Even though they strapped her in, she really didn't need it because she stayed really still for the cameras to get good images.

Yesterday's first day of tests was kind of hard. They couldn't draw blood from her until the 6th poke. She had to get poked 3 times on her left hand, once on her righ elbow, and twice on her right hand.

Been a long time...

Yes, it's been quite a long while since I updated this. Same ol boring stuff that I've been writing about. Work is very, very busy...kids growing and enjoying summer...Jeannine and I celebrated 10 years together...went to Disneyworld (very good time)...Jovee's got updated scans next Tuesday and Wednesday which means results by Thursday. She's been sick with this bad cough lately, says her leg hurts behind her knees. This chest congestion might be the culprit of the little issues she's been having lately so hopefully that's all that it is.

Yes, I will do a better, consistent job starting tonight. Thanks for still thinking of Jovee and our family.

Getting ready for Orlando

The kids have no clue that they're going to Disneyworld. We've thrown little hints but nothing that says they're going. All they know is that dad is going to take 5 days off for a vacation with them and they get to miss school the whole week. We're just going to hop on the airplane and take off, won't say anything until we get there. We have to be at the airport at 5:00 am Sunday. That's pretty darn early. That means leaving the house at about 4:15. I've been getting up around that time lately because we've been so busy at work but everyone else is going to be asleep. Jeannine's been packing and I've been trying to prepare for being gone for a week at work. That's going to be hard but I think this will be the only true vacation that I'll get for a long time.

Nothing new with Jovee. Some kids from church have contracted chicken pox so I hope Jovee doesn't get it while we're down there in Florida. That would royally stink!

Nothing new yet

The doctor that we're thinking of seeing is the doctor in Vermont. Here's a really good article and her and what she is doing...

http://www.burlingtonfreepress.com/apps/pbcs.dll/article?AID=/20080427/NEWS01/804270316/1009

So far no news on anything. We definitely are trying to get a second opinion from either Seattle Children's or Burlington, Vermont.

Been really busy other than that. I'm going to update a little bit more, with pics, tonight or tomorrow.

MRI today

Jovee's getting an MRI of the liver and primary tumor right now. We're just killing time, waiting for her to get out. She had to be sedated because it's an hour and a half long procedure. She's done fairly well today even though she had to fast. No solid's after 4:00 am, no liquids after 10:30 am. When she got her IV Needle in today, she screamed louder than any other time. On the way to the hospital, in the van, she said, "Mom, I don't want to get poked, I don't want to get poked". Hard time but what do you do? She's a trooper. We're going to go find out if she's out yet...seems a little long.

More positive news

Results from the bone and bone marrow aspiration came back negative - no evidence of disease there. Hip hip hooray.

Get to go home!

Everything looks good for now, just have to monitor her, make sure she's good. At home now. At work now so will write more later. Thanks so much for everybody's thoughts and prayers.

Isaiah 49:13-16 "For the Lord hath comforted HIS people, and will have mercy upon his afflicted. But Zion said, The LORD hath forsaken me, and my Lord hath forgotten me. Can a woman forget her sucking child, that she should not have compassion on the son of her womb? yea, they may forget, yet will I not forget thee. Behold, I have graven thee upon the palms of my hands"

Oncologist just gave us the news: nothing to worry about right now on the liver. Did not show any evidence of disease. She just got the report so wants to go over it again but overall it looks good; good meaning no neuroblastoma on the liver. From what she said about the liver is it could have bleed because the surgeon took more than one sample. So more than one sample was examined and again, no disease but she's going to look at it again since she just got the report.

Jovee hasn't moved too much, just sleeping and laying on the bed watching TV. We're not supposed to move her much right now, have to be gentle on the area around her stomache. However long it takes for her to recover and be comfortable is fine with us. We just hope that she recovers well and that the bleeding will completely stop. Can't be too careful since it was internal bleeding.

Very thankful for the good news. She is considered in remission. For those who don't know, relapsed neuroblastoma is considered fatal. Not many, if any, relapsed neuroblastoma patients are cured, just prolonging of life.

As far as the primary tumor, it's still there. Could be ganglioneuroma. Dr. F thought we could explore the possibility of going to Seattle to have it looked at, second opinion, and ressected. Problem is that the tumor/ganglioneuroma is completely surrounded by blood vessels and arteries.

We'll stop thinking about tomorrow and just cherish the good day today of the great news.

Stable

After they gave her a blood transfusion they measured her hemoglobin again and it shot up to 11.7. Good numbers but that was right after the transfusion so the numbers were a bit skewed. They're going to monitor her closely and take labs again at midnight and 6 am. I called Jeannine at 10:30 pm and she said Jovee was stable and doing good; she even got up and peed in the toilet. I left at 9 pm and she was still sleeping. Dr. Thorne said that her blood pressure was looking good. They considered operating on her, patching up the bleeding in the liver if things didn't become stable. There would have been another scar about 3 inches long if they would have operated. What's another battle scar when you have a billion? Well, not a billion but you know...
I forgot the digital camera and camcorder. I usually bring it. Today would have been a good day to have it, for memories sake. Man, I can't believe how white she looked. Almost a full blooded caucasian instead of a half Asian girl. My prayers tonight is that she's comfortable and will sleep peacefully. I was thankful that all the doctors and nurses worked so expediently and cohesively today. To think that it was just supposed to be an outpatient procedure today. This afternoon's experience definitely ranked as the scariest moment with Jovee.