Family Pic

Excellent Results

Jovee had scans last Tuesday and Wednesday, November


MIBG Whole Body Scan:


Persistent increased MIBG localization is seen in the medial left upper mediastinum and at the left supraclavicular region. Tracer distribution is otherwise stable and unchanged. No new focal areas of abnormal MIBG localization is seen in the visualized portions of the chest, abdomen, or pelvis.


Little change since 8/12/08. No new areas of abnormality identified.

CT Scan Neck / Chest / Abdomen / Pelvis:

CHEST Findings: There is an enhancing, high left paratracheal nodule measuring 1.4 x 0.9 cm, previously 1.5 x 0.9 cm, and subjectively unchanged. This lies lateral to the esophagus. The mediastinum and hila are otherwise normal and there is no other adenopathy. The thoracic spine, ribs, clavicles, sternum, scapulae, and visualized portions of the proximal humeri are unremarkable. The lungs are normal. The trachea and central airways are normal.

ABDOMEN Findings: The liver and gallbladder, spleen, pancreas, and adrenal glands are normal. The kidneys and proximal ureters are normal. The colon and small bowel are normal.

PELVIS Findings: The colon and small bowel are normal. The bladder is unremarkable. The muscles of the pelvis are unremarkable.

Stable, 1.4 x 0.9 cm enhancing high left paratracheal nodule lateral to the upper esophagus. Otherwise negative contrast enhanced chest, abdomen, and pelvis CT. Gastronomy tube remains in good position.

Surgery on Monday

On Monday, October 27th, reporting to Surgery Center at 8:30 am. Going to have her tonsils and adnoids removed and then a sinus surgery. The hope is to have Jovee stop gagging and throwing up, which she has been experiencing since the beginning of the year. She has a hard time breathing through her nose, has a lot of soft tissue surrounding her sinuses. The tonsils and adnoid removal will be quick and easy (hopefully) and the sinus surgery will be more intensive. The entire procedure will last 1.5 hours.

Today was trick or treating in Deer Park. Tyson was a Pizza delivery boy, Brooke a witch, Bennet didn't dress up because he had a soccer game, and Jovee was dressed as a cow girl.

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.