Monday, November 10, 2008

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.

Saturday, October 25, 2008

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.

Friday, August 15, 2008

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.

Wednesday, August 13, 2008

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.

Thursday, August 7, 2008

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 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.

Friday, May 9, 2008

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!

Monday, May 5, 2008

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...

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.

Monday, April 28, 2008

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.

Friday, April 18, 2008

More positive news

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

Wednesday, April 16, 2008

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"

Tuesday, April 15, 2008

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.


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.

Monday, April 14, 2008

Scary Incident

They didn't give her that much anesthesia, she had a hard time waking up from the biopsy...she became really pale so they wanted to monitor her more...come to find out that her liver bleed more than the doctors wanted to see...the blood flowed around her belly, not in her stomache...analogy is normal child has a full tank of blood at 14, she bleed a lot because of the liver biopsy, bleed down to half a tank of blood to a 6...they called us and asked us to come to Pediatric ICU...we got there before they transported her into room 308...all of a sudden all these surgeons and doctors came rushing in the room with all these medical terminology and "she's bleeding at the liver"...they hook her up to all these cables, Jeannine and I are just standing there, didn't know what they were doing...all we saw was she was white like the hospital blanket, her blood pressure is down to 64/34 on the monitor, the ultrasound doctor says she's got blood in the belly...

oh my!!! that was really scary. that was around 5:00 pm. now they're giving her blood and her heart rate and blood pressure and skin color is looking better. she's sleeping right now. they want to watch her over night so we're admitted for a day or two.

wow, what an eventful hour and a half!!!!! I was scared but have calmed down now.

Biopsies underway

Jeannine and I prayed really, really hard when Toby, the nurse, poked her right hand. No problem, she got to the vein the first time. That was nice. Jovee still cried. I don't think the numbing cream really works. At the point of contact she squints and you can tell that she feels the penetration of the needle. She's been pretty quiet today. I think yesterday, playing with the cousins, really wore her out. She didn't have a nap and was up until 11:00 pm, still lively. Jeannine, Jovee, and I stayed up for about half an hour watching funny YouTube videos. Jovee likes watching the animal bloopers.

Anyways, we might get results back tomorrow but probably Wednesday. The doctor that is doing the biopsy of the liver said probably 48 hours but could be sooner. We are just hoping that whatever the results are that they will be 100% accurate. If it is spreading then we'll plan out the best plan of attack, which could be New York's Memorial Sloan Kettering. If it isn't spreading into the liver we still have to do something to attack the primary tumor because it shows growth. Go, fight, win!

One of the ladies here that is head of an organization called Candlelighters lost her husband at age 36 of cancer (April - didn't ask her how long ago), 12 year old daughter of cancer (August - same year), and her 10 year old son of cancer - all different types of cancer. We're amazed at her brightness of hope and positive attitude. She's a good person to talk to when we feel bummed out.

Anyways, Jovee should be just about done right now so we got to go. Thanks.
I’m going to miss our backyard view because lots of houses are supposed to be built in the field behind us. Time to start looking more in the country with less houses around us.

Jovee was sick Saturday morning and afternoon. She was just really lethargic, didn’t want to do anything, wasn’t the spicy Jovee that we know. She perked up in the evening though. We thought that if she was going to continue to be sick that the biopsy would have had to be postponed. She felt normal and well yesterday and this morning, although a little hard from having to fast, but overall she’s healthy. On Saturday night when she felt better, we went out to eat with the kids. Was a good dine out; we went over proper dinner table etiquette; no elbows on the table, asking please pass the whatever, excused from the table, napkin in laps. Who came up with all these rules anyways? We’ve never really taught them the etiquette thing but it seem to stick because this morning Tyson, Brooke, and Bennet all remembered them while eating breakfast.

Yesterday was a good family bonding Sunday. Just had the family over and had a nice pot luck and sat around and chit chatted and all the cousins played together. It’s always nice to hang out with family. It’s good that we all get along. Jovee definitely loves to be around family, I know that it brightens her spirit when she’s around her grandma and grandpa, uncles, aunts, and cousins.

I know that as parents we’re not supposed to compare our children but…Tyson had a small sliver on his toe, like really super small, that we had to try to squeeze and get out. He whined over this small sliver. Man, my boys are wimps compared to by girls. Brooke has a pretty high pain tolerance and Jovee is a tank. Said to Tyson, “Jovee’s going to get three long needles for biopsies and one (hopefully just one) for IV today. Just quit complaining.”

So far this rainy morning we’re trying to distract Jovee from thinking about her chocolate Pediasure. She has to fast 8 hours before the biopsy and nothing 2 hours before. She’s asked for her Pediasure many times this morning. That’s her only staple that she consistently takes so it is hard for her. She doesn’t eat or drink too much of anything else.

The plan today is check in at 11:30 am. They’re going to give her anesthesia to put her out, then poke her to get the IV started. Hopefully again they’ll find a good cooperating vein on the first try. At 1:00 pm, the bone and bone marrow biopsy followed by the liver biopsy. Most likely have to wait til tomorrow to get the results.

Jeannine and I are preparing for the spot on the liver to be neuroblastoma because of the wording on the finding of the CT Scan, “suspicious of metastasis”. But again, the little bit of hope that we have hangs on the fact that the spot did not show up / lighted up / enhanced on the MiBg. Our prayer is that it isn't neuroblastoma on the liver and also that if it is that we'll be at peace with it. We'll be anxiously waiting for the results.

Friday, April 11, 2008

OK, decent but still questionable

Finally able to talk to Dr. F. Her assistant says she sees about 35 patients a day. Given 30 minutes, that's 17.5 hours of work a day. Not possible. She's completely swamped. When we have time to spend with her and it's not zoo crazy, it's nice.

So she says that the only way to get 100% clarity is after the biopsy on Monday. It's going to be a biopsy of the liver, bone and bone marrow. She just said that the MiBg says there is lesion in the liver showing up on the CT scan but NOT lighting up on the MiBg other words, we don't know 100%. Even though it's suspicious of metastasis, we can hope for a miracle and have it be nothing. Please, please, please, please (if it's God's will) let it be nothing and just a fluke. I would be pleasantly surprised.

Nothing yet

10:30 am, April 8th, 32 pounds and 36 inches with lots of hair.

Still haven't heard anything as far as the interpretation of the MiBg scan. My interpretation is there is activity on the liver, there's an enhanced nodule 1.5 cm x 1.5 cm that showed up on the CT but not clarified on the MiBg, the primary tumor below left collar bone has minimally grown.

Thursday, April 10, 2008

Still have to wait til Friday

So the impression from the MiBg scan has some confusing words:

1. The new focus of abnormal enhancement in the liver is not metabolically active greater than background liver. It is therefore not perceived on today's study.
2. Persistent increased MIBG metabolism at the upper mediastinum.
3. The focus of MIBG metabolism in the left supraclavicular region which was seen on previous MIBG studies (but not to the most recent study 02/07/2008) is now once again evident.

The wording for #1 is confusing. The doctor was supposed to call me back to clarify but didn't. Contacted them at 9:00 am, heard nothing, so called them at 4:00 pm to find out doctor was supposed to call me but didn't and went home. So flipp'in frustrated with just being left to wait.

I tried calling the doctor that transcribed the findings and he wouldn't talk to me, said I had to talk to the doctor.

CT scans read stable for the most part. Also included "moderate to severe ethmoid and severe maxillary sinus opacifications.". Jeannine knew she had some kind of sinus infection.

Chest findings: A 1.4 x 0.9 cm ill-defined enhancing mass to the left of the esophagus near the thoracic inlet is probably minimally increased since the recent comparison where it measures 1.1 x 0.8 cm. No other mediastinal abnormality.

Abodomen findings:

1. There is a new, 1.5 x 1.5 cm, enhancing nodule in segment five of the right lobe of the liver. The liver parenchyma is otherwise normal. Impression: New 1.5 cm round enhancing nodule in the right lobe of teh liver suspicious for metastasis.

2. Persistent small enhancing nodule to the left of the upper thoracic esophagus at the thoracic inlet which was questionably minimally increased in size and currently measures 1.4 x 0.9 cm.

Her urine VMA came back and it did increase to 32. Was 29.4, before that 27.6. Again, higher the number usually means more neuroblastoma.

Yes, I'm pretty frustrated. Mostly frustrated because the doctors assistant didn't know how to put it in easy terms for me, the doctor was supposed to call me back but went home, the doctor that looked at the scans and interpreted it wouldn't talk to me, the more than likely metastasis in the liver, the primary tumor getting a little bit bigger than it was before, VMA level going up.


A New Day

Well, at least an hour and 15 minutes ago was a new day. I always try to think that what a blessing it is to wake up and start a fresh new day. Every day is a great blessing when I'm able to wake up again and learn from the previous day and have a better, improved day than the latter. Although yesterday was gloomy because of the new spot on her liver, today will be a good day because Dr. F will call first thing in the morning, at 8:01 am sharp, and the MiBg results will have been dictated and Dr. F will rethink what she saw on the CT scan and tell us "oh, I didn't mean to scare you, it was really nothing because the MiBg didn't pick up anything at all, no new uptake on the liver"...that's a new day, positive thinking, start your day with great news kind of day.

You know, Jovee's spirits have been very uppity. Yes, she's got the lingering sinus but she's definitely been very energetic lately. Yes, Tuesday's 7 poke day was tough but she's still very happy. Any time I want her to dance, I just bust out the tunes and she'll usually say, "Dancing with the stars" and do her groove thing. Yesterday, Wednesday, we were walking through WalMart and she was just chatting away and just happy has can be playing hide and seek. We were walking down the aisles looking for Jeannine and she was just yakety yaking...And tonight we had fun taking some movie star pictures. Brooke was sick when she got home today so she didn't join in. Usually Brooke and Jovee like doing the picture thing together.
We had her MiBg scan at 10 am today. We usually schedule it after lunch time because we try to plan it around her nap time. Even though we gave her Benadryl to try to get her to relax, she was wide awake during the whole scan, which takes about an hour. Like usual, she received no sedation. She put on her game face and laid there for the entire hour. She did get squirmy and cried several times but over all, for the little 3 year old champion that she is, she did great. The nurses are always surprised at how well she does. That's our little champion!
Thanks again to all that keep her in your thoughts and prayers. As the main theme of her blog states, "Believe In Miracles". If it's to be that a miracle takes place and all of her cancer goes away, than what a miracle! I oft times think that it's a miracle already, a daily miracle that we've had her for this long. Some parents of kids with neuroblastoma are currently experiencing much harder care than we are right now. I know every kid is different and at different stages of this fight. We're just glad to have her healthy right now and have her been pretty healthy overall. Be thankful for good health, for your good health, for your child's good health. Good health is...good.

Wednesday, April 9, 2008

Sombering day

Well, all in all, so far, it was somber news...the CT Scan from yesterday, April 8th, showed no change in the primary tumor on the left side....I say so far because we're waiting to hear about her VMA level (that's the urine sample that indicates neuroblastoma - high number, no good; lower, normal number should be around 8-10 on normal kids.) Jovee's # is still moderately high at around 27 and 29. What we are waiting on is the VMA, hopefully later today or sometime tomorrow.

The concern and disappointment is that there was an abnormal spot that showed on her liver (an area where neuroblastoma is known to show up at - well, neuroblastoma can show up wherever it wants to, really). So, one of 3 things:

1. She's had a bad sinus infection for the last 2 months and just the bugs/bacteria that's been going around could be what that spot on the liver is.

2. It's disease/neuroblastoma and is spreading.

3. It could just be some weird thing that showed up and wont' be there again when scanned again.

The MiBg done today will give us a better idea. Just waiting for results. Love the waiting part. Hopefully MiBg will show nothing (but sometimes the CT Scan can pick up things that the MiBg cannot and vice versa) and the VMA level will be steady.

But if the VMA level is higher than her steady upper 20's than the new spot on the kidneys will be a concern.

So the plan today is to wait for the results of the MiBg, wait for the VMA levels...we're planning to do a biopsy of the liver, bone / bone marrow sample, and possibly the primary tumor - all next week.

Another roller coaster of emotions today: waiting, anticipating, hoping for the best / planning for bad news, ...

Out of our hands, as it always has been. The natural man/woman in us needs to think unnaturally and always think big, think the big picture. Hard to sometimes, like right now.

Tuesday, April 8, 2008

Today was a rough day for Jovee. Toughs days make people tough. She’s tough. What a blessing it was to have the central line. It took almost 2 hours to get to the vein that could be accessed. The nurses started on her left hand, then left arm, right hand, right arm, left foot, right foot, then finally back to the right hand and they got a good vein. Oh it was painful to watch her get poked 7 times.

Tomorrow is the MiBg at 10:00 am. After the scan we meet with Dr. F and hopefully go over the results of today’s CT scan and see what the plan is for the next couple months or the near future. Much uncertainty. The only certainty is that Jovee is tough.

Wednesday, April 2, 2008

Just waiting

Still waiting to hear back from Sacred Heart oncologist. She was supposed to bring Jovee's case up with the Child Oncology Group yesterday. I think we'll know more of a decision and direction after her scans next Tuesday and Wednesday. Well, the tests are those two days which means results will be Thursday or Friday. Jeannine took Jovee to the doctors yesterday because she hasn't fully recovered from her sickness (pneumonia or whatever it is)...well, Jovee's got really bad ear infection in both ears. So another antibiotic to battle that. She's got lots of mucus and coughs a lot so her appetite has been anything but an appetite. Just mostly drinks her chocolate Pediasure.

Saturday, March 29, 2008

Uncertainty Ahead

Well, Dr. Sholler in Burlington, Vermont said that Jovee would qualify for her clinical trial. Insurance company said they'd pay if Dr. F here at Sacred Heart deems it necessary and justifiable to go over there for treatment. Dr. F said she'd call and talk to Dr. Sholler and also bring Jovee's case up to the COG (Child Oncology Group) on Tuesday, April 1st. Dr. F also said there's another route that we could take instead of going to Vermont. What Jeannine and I don't understand is why wasn't this supposed route not mentioned to us when we inquired about if there was anything that we could do after the Accutane, which we were told there was nothing. So with Vermont, if this is the course that we decide for Jovee, we'd go there early April, start on her med and go there about once a month for check up. Yes, the cost, if Jeannine, Jovee, and I went would be quite spendy. Whatever. It's just money. Or credit. We could wait 3 months and do her treatments in San Diego (that's when this med is going to be accepted in San Diego). I really don't think, well, I'm convinced that we don't do nothing to try to kill the remaining cancer.
Just the thought of her losing her hair and having her go through chemotherapy again just bums us both out. A lot. She'll receive cyclophosamide (which she already had) and topotecan (new chemo for her - which could be good because it might kill the NB). Anyways, just a lot of wind taken out of us to think that we basically start all over again. The clinical trial with nifurtimox, cyclophosamide, and topotecan will last approximately 6 months. Hospital stays, high fevers, lots of money, possibly long flights in the air to Vermont, zero ANC levels, away from Tyson, Brooke, and Bennet, etc, etc, etc, etc....been there, dont' want to do all that again but if (which there is no guarantee) just if it kills the NB, we will gird up our loins, fresh courage take, and do what we will have to do for Jovee.

Monday, March 24, 2008

Easter and Updates

Happy belated Easter. We just did the normal Sunday thing, church, dinner with family, and hung out. The kids have half days all this week. Tyson and I have to finish building his Pinewood Derby car. That's this Wednesday evening.

Browsed through the internet looking for cures for NB and came across some other blogs of parents with kids with NB. Reality check! Was sad to read about the kids that have passed away because of NB. A lot of the sites say these kids that have passed away have received their wings. Jovee is good at saying to me, "You come back, OK" when I leave for work. Sometimes when she leaves with Jeannine or I, she says, "OK, I come back". It's just a cute saying coming from her. I hope she always comes back and never has to leave us anytime soon. The reality of neuroblastoma is that she might not come back. They haven't determined her as cancer free yet because it is still active. She she's not considered in remission or if she's not in remission than she can't relapse. With relapse of NB, there is NO cure. Reality check again.

Today, I contacted a doctor in Vermont that's doing research on a drug called nifurtimox. This drug has shown to be toxic to NB cells. Awww, a little bit of hope. This doctor is pursing studies to develop nifurtimox as a treatment for neuroblastoma.

I got a lot of things to do here at work but everything gets put on hold when you get that reality check that NB can take Jovee away.

Wednesday, March 12, 2008

Nothing 2 New

Other than pneumonia, same old same old. When Jovee was diagnosed, she was put on some antibiotics. A week later, she still hasn't gotten better so Jeannine took her in again and now she's on different antibiotics. She still has a yucky cough, yucky runny nose. Doctors say she's not contagious but she still isn't at 100%, probably about 70% Jovee. We just keep her busy by reading tons of books and watching Animal Planet. She really loves animals. I might just break down and bring one home sometime. It has to be a small dog with no shedding, no hair.
Brooke got her cast off last week and finally exposing her arm. She's a funny girl. Some people were surprised when we told them she had a cast on. She's happy now with it off.
That's about it, nothing too new.
Jovee has scans again next month, April 8th and 9th.

Sunday, March 2, 2008


Jovee's been feeling really yucky the last few nights, especially early in the morning. Coughs a bunch, wakes up, and then vomits. Has occurred the last several nights. So I took her in to the urgent care and she was diagnosed with pnuemonia. Got to take some antibiotics and breathing machine to help her get better.

Tuesday, February 26, 2008

Line Out, Graduated

Jovee graduated from her central line last Thursday, February 21st. I really hope that she never has to have another one put in. She's done with her Accutane. So now, the only thing she has is another scan in March. She's getting big, smart, chatty Kathy, and honory.

Monday, February 11, 2008


From 2/8/08
MIBG Findings: There is persistent focal MIBG accumulation in the upper mediastinum, however the intensity is decreased compared to the most recent MIBG Study. The left supraclavicular focus has resolved. No other abnormal MIBG localization is seen.

Impression: 1. Overall improved MIBG Study 2. Persisistent foca upper mediastinal focus of MIBG accumulation which appears somewhat decreased in intensity.

From 2/7/08
CT of the neck: Stable appearance compared to 11/6/07
CT of Chest/Abdomen/Pelvis: A mildly enlarged left paratracheal lymph node is grossly stable since the comparison of 11/6/07. Otherwise negative contrast enhancd chest, abdomen, and pelvis CT Scan. There has been no change snce the comparison.

Saturday, February 9, 2008


Saturday morning cartoons.

Getting her CT Scans. She's got her "A" game game-face on. Always gets the "best patient of the day" award because she's so cooperative.

Getting ready to get blood draws. It's easy process because of her Hickman line, no poking needed.
No questions about it, you know where she gets her good looks.

Happy little Jovee. Majority of the time she has sunshine in her soul.

Got a little treat from the hospital while waiting to get in to the CT Scans.

CT Scans showed no change in left tumor, still 11 mm x 8 mm. MIBG Scans looks fine. No signs of metastisis. That was verbal over the phone with Dr. F. I won't be completely satisfied until I actually read for myself the dictated results of the actual report, Monday.
She has a little sinus infection so is on Augmentin. Started her last course of Accutane today, 14 days of it and then Jovee actually "graduates" from treatment. We ask so what now, that she still has the neuroblastoma cancer? We're supposed to just wait is what the oncologist says. I'm not really pleased with that answer because she still has cancer.

Wednesday, February 6, 2008


It's that time again, to try not to worry but to worry because of the scans. It's been 2 months since the last scans, which were thankfully the good results that we wanted to see. 2 months is a long time. What Jeannine and I are worried most about is that Jovee has been letting us know that her left leg, around the knee area, is "owie". She rarely, rarely complains. Plus this morning, at 3:30 am, she whimpered a lot in her sleep. First time that she's ever done that. She's pretty smart...we take her seriously but sometimes I think she's playing us with the "owie" on her leg but there's no way that she's playing us when she whimpers in her sleep at 3:30 am. I don't like it at all and it does concern me a lot. We have to make sure that at the scans and visits that the doctors exam it, have the scans focus on it. I hope it's nothing with the spread of the cancer in that area and that it's hurting her. I remember in Seattle when Austin was being managed by the pain meds to try to control his leukemia...his mom said that he whimpered a lot because of the pain. Just breaks my heart to think of the possibility that the cancer is hurting her. "It's just growing pains, it's just growing pains, it's just growing pains" is what I think to band-aid the cancer thoughts.

My diabetes numbers are way out of whack. Yeah, partly because of what I eat but stress definitely has something to do with it. I mean, how much stress could I really have? My A1C is at 14. Very, very bad number. That was from the labs last Thursday, January 31st. So I walked 3 miles yesterday. I have to watch my carb and sugar intake and exercise a lot.

Was listening to a really good song by Sara Evans, Never Alone:

May the angels protect you
Trouble neglect you
And heaven accept you
When it's time to go home

May you always have plenty
Your glass never empty
And know in your belly
You're never alone

May your tears come from laughing
You find friends worth having
As every year passes
They mean more than gold

May you win but stay humble
Smile more than grumble
And know when you stumble
You're never alone

Chorus:Never alone
Never alone
I'll be in every beat of your heart
When you face the unknown
Wherever you fly
This isn't goodbye
My love will follow you stay with you
Baby you're never alone

Well I have to be honest
As much as I wanted
I'm not gonna promise that cold winds won't blow
So when hard times have found you
And your fears surround you
Wrap my love around you
You're never alone

Just a really sweet, makes you feel good song. We've used a lot of music for "therapy".

Sunday, February 3, 2008


Yes, it's been a while. Besides the kajillion feet of snow, which will probably take until the summer,to melt away, these are some of the happenings in the Lim home:

Our neighbor had their son in law come over to shovel our roof. Two grown hardworking men spent 4 and ahalf hours on the roof and said, "Don't tell anyone we did it for $100.00". It was a lot harder than theythought. It was worth every penny of that because there's so much snow on our roof. I was so afraid of itcollapsing and crushing the kids in the middle of the night. I'm a worry wart when it comes to that so, because I didn't have the time, it was worth every penny.

Brooke slipped on the kitchen floor, broke her left elbow. Jeannine had mopped the floor and somehow Brookeslipped and broke it. First person in the Lim family to break a limb.

Jeannine and I will be married for 10 years this July. Man, how could she have put up and tolerated me forthis long. Ten years!!!

I was a Cub Master for the 8-10 year olds at the church for less than a month, did my one pack meeting andnow am the ward mission leader. We have 2 really good Elders so I look forward to working with them.

Jeannine and I started guitar lessons. In hopes of jamm'in around the camp fires and bringing more musicinto our home, this is a little adventure that we're taking on together. Plus, it's a great opportunity tospend time together. Husbands and wives need that alone time, ya know.

October will be 2 years for my braces. Dr. Smith said 24-28 months. Hopefully I'll have a movie star smilewhen all this is done.

Jovee has her CT Scan this Thursday and MIBG Scan on Friday. She's been complaining more that her leg hurts. I hope it's just growing pains. She did have the nueroblastoma all over her body, including the lower half.So I hope that the cancer hasn't spread. The last tests were the beginning of December. It's been 2 months.We've been praying that the last remaining tumor on the left side will have shrunk or disappeared. Please, please shrink or be gone. She deserves to have it gone. She's so good. Does anyone deserve to have a lifethreatening illness? Of course not. I'll post pictures tomorrow. She's got a lot more hair, growing like crazy.

I haven't prayed on my knees for a while until yesterday. Usually I pray on my drive into Spokane. I have atleast 45 minutes of good pray/talk time. But I really needed some help so I dropped on my knees and pleaded forsome divine intervention. I received the answers to 2 of the things that I prayed for that same afternoon. Thank you.

Yesterday was the one year anniversary of the benefit fundraiser for Jovee and our family. If anyone doubts that there is a God and that miracles have ceased, come talk to me and I'll tell you all about that miraculous night.

Wednesday, January 9, 2008

Snowy Days

Jovee had a hearing test yesterday, OAE (otoacousic emissions test). This test can tell us how her ears are functioning in response to certain types of sounds. Most cancer patients suffer some loss of hearing. She's all good and at the normal range. For having gone through what she's gone through and having her hearing be where it is at, she's actually doing really well.

It's snowed here just a ton. Tyson, Brooke, and Bennet did not have school today so they enjoyed the day off. As soon as they heard there was no school they were out playing in the snow first thing in the morning. Jovee woke up and was out there playing right along with them. The snow's pretty deep in our front yard so I wonder in her eyes how she views all this snow. I remember the blizzard of 1982 in Denver, being buried in all that white. This hasn't been a blizzard but there's a lot of shoveling I've been doing. Supposed to be more snow tomorrow again, another 2 to 3 inches.

I was feeling tired and yucky today on my way in to work. Got a burst of positive energy when I pulled over to help push a lady in a Toyota Prius that was stuck in the snow, going nowhere. I guy was trying to push her out by himself but was getting nowhere. I saw him while driving by, turned around, hopped out, tried pushing with him but to no avail. Another young man ran over and the 3 of us pushed her out of her rut. We all went our separate ways. The first guy didn't know the lady, just doing the good Samaritan thing; same with the 3rd guy. It was just nice to know of good people helping others, neighbors helping neighbors.

I got delayed 3 hours because I got a nasty flat in a snowy field in the boonies in Post Falls, Idaho. Was trying to install some signs with Andrew Mecham but spent a lot of time getting the tire fixed.

Sunday, January 6, 2008


Jovee hasn't eaten anything all day. She usually doesn't eat anything at all. Good thing for her G-Tube and Pediasure. She goes through at least (2) 8 oz cans of Pediasure a night and about 3 or 4 cans throughout the day. Good thing her Pediasure can be used as a sole source of nutrition. The only foods that she'll consistently eat are popcorn, tortilla ships, nacho cheese, and beef. At least lately. It's really frustrating when we try to get her to try to eat just anything but she just doesn't.

Wednesday, January 2, 2008

Happy New Year!

Last Christmas Jovee had just got out of the hospital after her 3rd round of chemotherapy. She did not feel very good at all. We remember her sitting on the couch at Grandma’s house with all the family members around her. Even though thoughts of Christmas and presents were in the air, the sickly look on Jovee’s face and posture gave Jeannine and I and other family members a dim feeling, not knowing what lay ahead.

Christmas Eve was much more joyous because, compared to 2006, Jovee was doing and feeling much more lively. Plus she has lots of hair and wasn’t bald. Cancer bald. I watched her play with the kids and was overwhelmingly thankful for her. I just sat, watched her, and thought about some of the lessons that she’d taught me this past year of 2007:

Don't complain, be strong and courageous, believe in miracles, it's definitely OK to cry, work together to accomplish difficult tasks, be around family, friends, and people that are positive, be around people that really love you, love other people, have fun, music is powerful, smile and play lots...

The list goes on and on...

I went to bed about 9:30 pm on New Years Eve and didn't wake up until I heard Jeannine and the kids countdown to midnight. I got up just right then and they were at 5,4,3,2,1,0...I rushed over to the breaker box and the power to the entire house off right when they got to zero and it was dead silence for a couple of seconds. Then I yelled "HAPPY NEW YEAR" and then they all yelled. They didn't know what happened until my yell. It was funny (for me).

Jovee is still on Accutane, has another 3 months left. After the Accutane is done they're going to do another scan to see where she's at, where the cancer is at. If there is any remaining on the left side then I don't know what next. We've thought about doing a radiation therapy called proton therapy in Loma Linda, California, going to New York to Memorial Sloan Kettering to see what they have to offer since they are #1 in treating kids with neuroblastoma and seem to be more advanced than any other hospital, and last, very, very, very, very, very last option is to to surgery again to remove that last bit. The surgery would be equivalent in procedure, healing, pain, recovery as the big surgery on April 16th. Jeannine and I don't have the strength right now to go through something like that again. We could muster up the strength to do it if it's in the best interest of Jovee but it would take a lot of whatever to see her go through that again. She was so strong and awesome but I don't know.

Since we've been back from Seattle in mid August I don't think Sacred Heart has done a very good job in follow up on Jovee. We've had to initiate everything. There's been very, very poor communication from them. She's just another number. We've initiated her scans, labs, Accutane regiment, follow-up visits, everything. There hasn't been one, not one, single "Hey, how's Jovee doing?" or "Anything you guys need?" phone call. Really, not one. She's just another number to them.

I hope that the Accutane works and eliminates the remaining cancer. In the meantime, while she has the 14 day break, we're trying with what we know best, giving her a product that, upon hours and hours of research, we hope will fight the neuroblastoma cells. We have to be proactive and not just sit and wait to do what the doctors conventionally do. I believe that just isn't good enough. Knowing what I know and what I've learned, you have to "take matters into your own hands".

Happy New Year to everyone.