Jovee and Tyson

Tyson said to Jeannine out of the blue while they were talking in our kitchen, "Mom, if I could, I would take a knife, cut out Jovee's tumor, and then put it inside of me so that I could go through it all for her." It was a proud moment for me when Jeannine told me what he said. All three of them have taken really good care of Jovee and they love her a ton.

Official wording from report

CT Scan of soft tissue neck:
Compared to 9/5/07
Soft tissue density in the left superior mediastinum. Currently measures 14x9 mm. Stable appearance.

CT Scan chest/abdomen/pelvis
Compared to9/5/07
Chest:No new soft tissue abnormalities are identified.
Abdomen/pelvis: Stable. No evidence for metastatic disease. Stable examination of the chest, abdomen, and pelvis. There are no new abnormalities identified.

Bone marrow aspiration: No atypical cells to indicate metastatic disease are identified. Blasts are not increased.

MIBG Study:
The previously noted region of increased MIBG metabolism in the left paratracheal region is again identified, although decreased in intensity. THERE ARE TWO NEW REGIONS OF INCREASED MIBG METABOLISM IN THE PARA-AORTIC REGION, at approximately the T10 level. Uptake elsewhere is satisfactory. These likely represent para-aortic nodes; location within the adrenal glands is considered less likely.

Didn't really tell us much as far as the 2 new regions. Hopefully they are para-aortic nodes or guts or bowels.

Lots of Hair

Yes, she does have more hair then me. It's growing a lot. This is a picture of one of her favorite friends, Nolan. They like each other.

I requested copies of the report today, since I didn't get them on Friday. It still just puzzles me that the 2 bright spots could be guts or bowels. I doubtful because the doctors have never told us that bowel could light up in the scans so why would it show up now. The stomache area is where most of the kids with neuroblastoma start to appear; stomache, adrenal areas. I hope that my suspicions are dead wrong and that it's just nothing or just bowel. So anxious since it could be cancer and spreading or it's just bowel and nothing.

We partied and danced a lot last night. Jovee and the kids love to jam to music. Take a video camcorder and record your kids and record a lot of them. That was the advice of one of the mothers that lost her child because of cancer.

Latest Results from Tests

Tests all done Tuesday and Wednesday. Tuesday was CT scan of the chest, Wednesday was full body CT Scan, bone marrow aspiration (biopsy), MIBG Scan...

Dr. told us to give her a call Friday (today) morning and so I called at 9:30 am. She was real busy and I couldn't take it anymore so I went to the hospital at 3:00 pm. Her assistant said she was busy, to come back later. I asked if I could just get a print out of the findings because I have a little idea of what the findings say. She went back to talk to Dr. Judy, came back out and said "Dr. Judy has a small concern and doesn't want to give me any print outs until she acutally goes over the findings in full. Come back a little later and she'll talk to me."

"Small concern" didn't sound good. Any "concerns" isn't good when you're dealing with cancer. So I just cried and cried and cired after leaving the hospital, thinking the worst. Jeannine and I try to think positive but it's hard when you're dealing with cancer. Anyways, I went back to the hospital at 4:45 and this is what was discussed:

Positives: the nueroblastoma that measures 2 centimeters that is at the left side below her collar bone was less intense, less bright compared to September 5th on the scan. If it isn't bright on the scan that means that the neuroblastoma cells are not as active. That's our understanding. The bone and bone marrow biopsy showed negative neuroblastoma. We like that.

Negatives: 2 bright spots on the MIBG scan showed up. It is in the middle of her, at the top of her belly. Dr. said she's not quite sure it's neuroblastoma and said it's a "very, very good chance that it's just bowel". Bowel and guts can soak up the tracer. Dr. also said it could just be the adrenal glands. Really frustrating. There really is no clear test that shows neuroblastoma.

Scan again first week of December, the 4th and 5th or 5th and 6th.

Very frustrating and have to play the patience game. Dr. Judy is the medical director of Sacred Heart. She's top dog. But there was no definite clear answer that she could give us with what the 2 bright spots were other than could be guts and bowels...Aaaarggghhhh!!!!

Jovee is talking so much more and is so active and girly...she loves to wear dresses, hasn't put on pants for a long time. Her hair is growing lots. I'll have to take some pictures and post some tomorrow. Anyways, it's a solemn night at the Lim home, just don't know what to think because we really don't have any clarity on the 2 new bright spots.

Done with Tests Today

Yesterday, Tuesday the 6th Jovee had a CT Scan of the neck and today had the full body CT Scan with the MIBG Scan and bone marrow aspiration. She did amazingly well (AGAIN). The nurses were again very amazed that she did not need sedation to get through the tests. Most young kids will not lay still to get the scans done but my little Jovee is just so cooperative and submissive. It's like her saying "whatever mom, whatever dad, I'll do whatever it takes to make it easier on you and me."

Dr. Judy said to call Friday morning to get all the official test results. So we just wait and see...Thanks for everybody's thoughts and prayers. I'll return and report Friday.

New Teeth

Before and After pictures from this morning. The dental surgeon had to crown ALL of her baby teeth, EVERY single one of them. I hate that the chemotherapy did this to her teeth. I hate the cancer that made her get chemo that battered her teeth. Was a reality check again today when we saw her after the surgery all swollen up and hooked up to all the wires again. She hasn't spoken a word since we brought her home today, it's pretty painful for her. Just moaning, groaning, and lots of whimpering. The dental surgeon said she'll be in pain for the next couple of days, particularly her gums. Every single baby tooth!! She has white crowns on the front and bottom four and the rest are silver. Bennet had one crown yesterday and he threw the biggest pain fit that he's ever had. Imagine Bennet getting all of them done like Jovee did today. She's so tough. I guess she doesn't have a choice. We just choose to put her through pain in hopes that it will pay off in the end. I don't like it but what do you do, you just have to press forward and deal with it and hope for the best. I'm not bitter, I might sound like it but it was just a reality check again today that this cancer is real. We just try to think positive and press forward through the trials that lay in front of us.

Got hair

Hair is growing. Soon we'll be able to braid it. Nothing too much that's new. Next month, early November, is the next scan to see if the left tumor is gone. We'll hope that it is. It's still small, hasn't grown but hasn't shrunk either.

Jovee has to go get prett major reconstructive dental work on the 17th. She has to have the front 4 teeth crowned. The combination of chemotherapy and not being able to have a regular appetite has done damage to her teeth.

Have to really believe in miracles

MIBG Scan findings, verbatim from the report:
The previously noted right-sided apical mass no longer demonstrates increased MIBG uptake. Instead, there is no a new paratracheal area of increased MIBG metabolism in the left paratracheal apical region. Comparison from 1/5/07 and 9/5/07.

I don't understand how after 8 rounds of chemotherapy and 20 rounds of radiation specifically targeting that left region how the neuroblastoma is still active. Just really bummed. The good news for the day was that her bone and bone marrow that was extracted on Friday came back today and there were no cancer cells in them. I'm tired.

I'm Happy

Jeannine and I were in Vegas this last weekend. Took off Thursday night and got back Sunday evening. Was kind of our 9 year wedding anniversary / break from the past 10 months getaway. The main reason we chose Vegas was because Phantom of the Opera. Oh man!!! If you ever get a chance to go down there, catch Phantom. It was absolutely incredible. The music, costumes, emotions...it was awesome!!! That's my sales pitch for Phantom.

Very frustrated with the hospitals. We got done with our last appointment last Monday and the oncologist was supposed to call and coordinate with Sacred Heart what next for Jovee. None of that was done until today because we were wondering what next???? Oh we're sorry, our scheduler has been very busy...blah, blah, blah...so we're supposed to call them back tomorrow to figure out what the next steps are. Sacred Heart wants to do all the tests over because since they're taking over Jovee's treatments they want to know where she's at. So MIBG scans, CT Scans, MRI's...regular physicals.

Although it's been nice to not have to take her to the hospitals we understand that she's still a cancer patient still receiving treatments. She's still has 6 months left of oral medication plus they definitely have to check up on the small tumor that they radiated on, to see that the radiation shrunk it.

I think I posted it already but after the 6 months of oral meds is over then she'll be considered in remission. If the cancer does not relapse after 5 years then she'll be considered cured and cancer free. We're going to have a BIG, HUGE, AWESOME celebration fiesta when the day comes, around February of the year 2013. Mark your calendars to come to the Lim home for a cancer free celebration!!!

Jovee said to her aunt Sue while we were gone this weekend, "I'm happy". She's been talking so much and has been very, very happy. Finally! I think it's because all the chemo has flushed out of her system and her body is feeling, for the first time in almost a full year, normal, without any yuck stuff in her. She is doing so very, very well. She's just so happy and loves life. She loves to put on Brooke's shoes (wearing big shoes is a thing she has going) and go outside to play. The kids start school tomorrow, or rather this morning. What's Jeannine and Jovee going to do all day without them. They all catch the bus at 8 and won't be home until 3:30. Bennet and Brooke are so excited about starting kindergarten that they couldn't sleep until 11 pm. They're really excited. Their teacher is going to party all year long, he said, because it's his last year of teaching and he can do whatever he wants and play as much as he wants. That'll be fun. Tyson had him for a kindergarten teacher and liked him a lot. Good night. I'm tired. Be happy and love life.

Link to KHQ news interview

The story can be found on www.khq.com . Go to middle of the page, VIDEO Now, "Jovee Lim Comes Home" headline. If that doesn't work, just go to KHQ Local News at 5 on August 21st, 2007.