Update on everything

Nurse Brenda, Bennet loves swimming, Shyanne in her oxygen tent, Jovee at the bowling alley, Jovee in a tree, Shyanne's first few minutes...



Good news, bad news, indifferent...

Jovee's scans were on September 1st and 2nd, re-staging updated scans. Everything on the CT and MiBG came back stable. Yippeeee.
We had been concerned, like all neuroblastoma parents are, about this round of testing because Jovee had been complaining a bunch about her legs and stomache hurting. A neuroblastoma parent thinks what if it's the neuroblastoma coming back again? Anyways, everything still stable...

We welcomed Shyanne Grace Lim into our family on 9-9-09 at 5:55 am. The delivery was quiet crazy and intense. Jeannine starting having contractions at 11:16 pm. They were 4 minutes apart. Jeannine called to see if she should go in. Hospital said it's up to her. So Jeannine started walking around the house a bit and the contractions started going away. She opted to wait a little bit longer but then the hospital called again and said we should probably come in to get started on some antibiotics for the baby.

Left the house just before 4 am, Jeannine's water broke at 4:15 am just when we crossed the Wandermere bridge, arrived at Holy Family and after preping her she was checked again at 4:45, dilated to 2 cm. No big deal...nurse Brenda checked her again an hour later and Jeannine had dilated to 7 cm...last week Shyanne was head down but this time she was breech...nurse Brenda also felt the umbilical cord at the bottom of the cervix so it was dangerous for the baby to come out. Jeannine's body pushing Shyanne out and nurse Brenda pushing back to prevent Shyanne from coming out because of the dangerous location of the umbilical cord. Anyways, it all happened so fast...Brenda said to me "push the emergency call buttom"...she said, "I need a doctor in her right now!"...Doctor Brash came in, assesed the situation and said we need to operate, need to do a crash C-Section...they took Jeannine out of the room, down the hall (with nurse Brenda's hand still inside of Jeannine preventing baby from coming out), into the operating room...Doctor Brash said I can't come in...what????...anyways it all happened really fast and I just went back into the room, started to cry a little bit out of fear for Jeannine and the baby...

Anyways, 10 minutes later nurse came back and said everything went fast but fine. Wheeeewww!!

Jeannine is recovering. They had to cut her bigger than with Brooke and Bennet because of the emergency situation but she's recovering.

Shyanne had some breathing issues. Heart rate was going up around 140-160 beats per minute. She had to be in an oxygen tent (oxygen bubble). She had to get transferred to Sacred Heart Hospital via Medstar (ambulance, not helicopter). She's got several anomalies but the main issue is TAPVR, a heart defect.

Surgery is going to be most likely Monday afternoon.

Going through a lot of the things that we've already been through with Jovee's cancer. A little different but still emotionally draining. She's just days old and so fragile.

1 in 15,000 get TAPVR. Cardiologist said to me early, "Neither you or your wife did anything to cause this...". I really wonder about that statement.

Nerds

These are my nerds. The weather has been fantastic the last couple of days, good enough to be in shorts.

More Chess

Bennet took 3rd place out of the 1st graders, Mikal scored the biggest upset, and Tyson was the Kindergarten - 3rd grade Grand Champion. They did good today.

Chess

Tyson and Bennet both took 2nd place in their classes at the last tournament. They like playing chess. It might seem boring but it's actually really competitive and fun to watch. Their trophies were these pretty cool bobbleheads knights because it was at a school where the mascot is a dragonslayer. Cool for them.

Brooke Ice Skating

Brooke's taking ice skating lessons at Eagles with Sarah and Hannah...just loving it. Last month Bennet finally qualified for going to the state Chess championship tournament...yes, I have chess nerds. It's really good for them because it teaches them to think ahead.

I need to post some pictures...haven't lately.

Little more stuff...

Little bit about what's going on in the family. I need to take a picture of Jo with her new glasses that she doesn't wear.

Tyson and Bennet's 1st year of wrestling. They're not doing that bad but still getting whooped on by the more experienced wrestlers. Bennet wants to quit but we won't let him. He's not doing that bad, just when he goes up against more experienced guys he loses. Same with Tyson. Tyson has more fun wrestling but Bennet's getting there.

Brooke is taking ice skating lessons with Sarah and having a great time.

Good results for MIBG Scan

Jovee and Brooke were playing outside and Jovee decided to be brave; stood on top of one of the snow banks in our front yard then went a tumbling down. The result: some good scars to show.


Restaging Study, compared to 11/5/08

A whole body nuclear tumor localzing scan was performed.

FINDINGS: There is mild increased MIBG localization in the left supraclavicular and left mediastinum, stable to diminished compared to the previous MIBG study.

Scan of Abdomen and Pelvis: No abnormal MIBG localization.

IMPRESSION: Stable to mildly improved compared to 11/5/08 study and no new areas of abnormal MIBG localization.

SWEET!!!!

Jovee went to the pediatric optometrist and has to wear glasses. Her left eye is 20/40 and her right eye (where it's related to Hoerner's syndrome) is 20/50.

Good results for CT Scan

The CT Technologist was suprised the we didn't sedate her for the CT Scan. After the scan was done, she asked, "Is she always this perfect for the scans?". Jovee has always been cooperative and submissive when she has to do the CT. Yes, she's always perfect.

Not so fun getting blood draws.

Good results from the CT Scan, now waiting for the MIBG Scan that Jovee took today. Usually, if the CT's are good then the MIBG's are good. We're hoping.

Comparison from 11/4/08, 8/13/08, 4/8/08

CHEST FINDINGS: A 1.4 x 1.0 cm upper left paratracheal nodule previously measures 1.4 x .9 cm. A .0 x .7 upper right paratracheal nodule is also unchanged. The lungs are normal. No osseous (bone) abnormality.

ABDOMEN FINDINGS: A 7mm faint, ill-defined enhancing focus in the liver within segment 5 is unchanged. The liver is otherwise normal. The spleen, pancreas, and adrenals are normal. The kidneys and proximal ureters are normal. The colon and small bowels are normal.

PELVIS FINDINGS: The iliac and femoral vessels are unremarkable and there is no pelvic or inguinal adenopathy. No osseous abnormality. The colon and small bowel are normal.

IMPRESSION: No change in the appearance of the chest, abdomen, or pelvis.

CT Scan of soft tissue neck with contrast:

In the region of the upper mediastinum just to the left of the esophagus there is a enhancing 15 x 10 mm nodule which is unchanged from prior chest CT Scan.

IMPRESSION:

Stable appearance to the enhancing nodule in the upper mediastinum just to the left of the esophagus.

Stable appearance to the left supraclavicular / lymph node Level IV soft tissue fullness.

Thanks for your prayers.

Family Pic