Thursday, December 6, 2007


Here I sit in the resource room at the hospital, just got word from todays' test. We were supposed to call back tomorrow, Friday, but I couldn't wait. Another lesson learned about it's not what you know, it's who you know (and how nice you are, too).

Official wording from the MIBG Scan today that was done at 10:00 am, dictated and reported by the best doctor:

The previously seen activity in the epigastric region in the abdomen as to the areas of abnormal paraaortic at the T1 level ARE NO LONGER PRESENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The left paratracheal left subclavicular activity again seen no change compared to 11/06/07 study.

The left small tumor hasn't decreased but we'll take that over it growing any day.

Thank you, thank you, thank you, thank you, thank you for your thoughts, prayers, and support.

Hug someone you love today. And give them a big squeeze bear hug, not a weak, wimpy hug!

Big Day

Someone donated a bunch of home made caps for the kids at the hospital some time ago and when Jovee visited the hospital today for preparations for tomorrow's scan, they had saved one specifically for her. Jovee and another girl are known at the hospital as the princesses because they both always come dressed all dolled up. Jovee's pretty well known and I must say a favorite patient of the nurses. A little bit of favoritism but that's all right...

So today is the big scan. It's this morning at 10 am. I'm going to bring the video camera to record the scan. They're pretty relaxed so recording the MiBG is OK. Hoping for the best, hoping for just bowel or just lymph nodes...please, please, please be just that.

Monday, December 3, 2007

Old age body

So it only took 2 hours to find out that I strained and most likely tore some of my intercostal muscles, the muscles that are found in between my ribs. Man, they hurt! Just some pain medicine and time to make the pain eventually go away. Our hot water heater is going out, has been working on and off so got to get that repaired. Had to put new tires on the Jeannine's van because they weren't working very well in the snow. There's always stuff going on, no rest for the wicked. Just a part of life. Man, how boring life would be if we didn't have opposition. I mean, how boring if I just got everything I wanted.

Bennet asked Brooke, "Brooke, am I your friend?" With all innocence and seriousness Brooke replied, "Who's I?".

Jovee hasn't been eating very much at all the past week, particularly the past couple of days. Good thing we got the G-Tube. I wish she would eat though. She's still maintaining her weight so that's good. If, when, it goes well with her scan we're going to ask to have the Hickman line be removed. That would be a big step towards the hope of recovery, not having the tubes hang out of her chest. She's so used to it. The Hickman line has just been a part of her. Whenever we flush her line, daily, she's learned to push the syringe and flush each line out. She likes doing that.

To Good Health

Man, I need to take care of my body a lot better. I have to get my chest checked out because last Wednesday night I started getting really sharp pains, seemed like somebody kicked me in the ribs and no body kicked me or even touched me. It's been hurting bad since last Wednesday night. Man, I'm going to be 33 in a week and feel like my body is falling apart. Good health should motivate me just to be in good health but taking care of my family and being around to take care of them should be a huge motivating factor.

Saturday, December 1, 2007

Happy December

Wow, it's December 1st. How time just goes by...It's 18 degrees this morning right now in Deer Park. Tyson and Bennet have their last basketball game this morning. They should be going to the exhibition game at the high school because their team, the Bears, are undefeated. They choose the 2 best teams to play at halftime at the high school boys varsity basketball game. They've had lots of fun. Tyson, Bennet, Mikal, Tyrel, and Samuel Palmer are all on the same team...quite the rowdy crowd. Hope they all grow up together and help each other out in life.

Jeannine, Brooke, and Jovee are going to the Disney on Ice Princess Wishes today. Girls afternoon out on the town. Should be fun for them.

Yesterday morning I decided to go in work a little bit later than usual. I've been working a lot this week, coming home late. We try to eat dinner together because it's good family time but work's been busy. So I took Tyson, Brooke, and Bennet to Rosauers before I dropped them off at school. We all got donuts, sausage links, and bacon and sat at the cafe inside of Rosauer's (a grocery store) and had a good little bonding moment. They all enjoyed it and so did I. If I'm not too packed for work I'd like to make it a "donuts with Dad" Friday. They all smiled big when I asked if they'd like to make that a tradition.

Wednesday evening I saw an old man on a bicycle get hit by a car. He was not hurt but his bicycle was thrashed and all of his belongings were all on top of him in the middle of the lane where he got hit. Four other people, including the man that hit him, and I got out to help him up. He was a transient, didn't have a particular place to go. We all asked if he needed to call anyone or if we could get him to where he was going but he had no where to go. It was a sad moment because he didn't have anywhere he could go to or anyone that he knew of that could come get him...he just mentioned since his bike is thrashed that he'd have to stay at a hotel. After the firefighters came and checked him out and all was well with him physically, I got in my van and drove away. I started immediately to cry...I don't know why...but I cried a lot. I think it was just thankful for having very good friends and family and having people that I could go to at any time to help me. I was thankful to be alive. When you get into a potential life ending situation or see a potential life ending situation it definitely makes you stop and count your many blessings.

Now that it is closer I'm starting to get nervous and anxious again for the results of Jovee's MIBG scan. The actual scan is on the 6th, with preparations on the 5th. So we'll hopefully have results on Friday the 7th. The waiting period....There is really no cure for neuroblastoma. If there was, she'd be cured after a year now. I have absolutely no control of the cancer, no control to spread it, no control to make it disappear. The doctors, medicine, and science have no control. So who's in control? I'm again begging, petitioning with fervent prayer that God, who is in control, grants the desires of my heart to make the cancer go away RIGHT NOW, to make the 2 bright spots that showed up last time be nothing and that the other little tumor continues to shrink. That's what I want and the only thing I want as an early Christmas present. Speaking of is a gift, that's why it is called the present. I liked that quote.

Happy December 1st!

Sunday, November 25, 2007

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.

Monday, November 12, 2007

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.

Friday, November 9, 2007

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.

Wednesday, November 7, 2007

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.

Wednesday, October 24, 2007

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.

Sunday, October 7, 2007

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.

Tuesday, September 11, 2007

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.

Wednesday, August 29, 2007

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, 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, 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.

Tuesday, August 21, 2007

Link to KHQ news interview

The story can be found on . 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.

On KHQ 6 News at 5:00 pm

Got interviewed today, will be on KHQ, Channel 6. I'll provide a link after the actual airing. We're back home!!!! Just need to spend several days unpacking because of the reunion and moving our stuff back from Seattle. It was nice driving back last night knowing that it's not just a short few day trip and then having to go back again. We got home around midnight so today was a pretty relaxed day, other than getting all dolled up for the news. It took a while to look good because my hair wasn't cooperating.

Monday, August 20, 2007

All done with radiation!!!!

We had a fun, long weekend at the family reunion in Republic. Jovee did real well flying back to Spokane on Friday. The turbulence didn't help me much though. I was sick with motion sickness for about 6 hours after the place landed. Rough flying. It was real nice to hang out with family. The fishing was very, very good. The boating and jet skiing was fine, although it was windy on Curlew Lake. All in all, was a good, fun family reunion. On the flight back here to Seattle last night was real bumpy the last 10 minutes and Jovee just stayed in my arms. She said, "Bumpy."

Well, she got her celebration balloons and graduate certificate this morning from the radiation team at UWMC. Everyone there was really friendly. Jovee really liked her nurse. It was nice because her nurse worked in the recovery room all the time. It wasn't a rotating nurse. Consistency is always good for young ones. Just another big weight off the shoulders with radiation being done. What is the best news of all this is being able to go back home to Deer Park. Even though we've been home on several occassions it seems like we've been here for a very long, tiring time. The kids are happy to be back in Deer Park also. They're all excited to go back to school. Brooke is so ready to learn to start reading. She asks us all the time about different words and letters.

We got back home from the family reunion to find a nice big banner from the kids at church, which read, "Welcome Home Lim Family". All rainbow colors and signed by the kids at church. So nice to feel like we're loved. We've never felt like we we never not loved. The church families here in the Seattle area have been awesome. The nurses and staff at the hospitals had always been mindful and caring to Jovee and our family. The Ronald McDonald House workers have always been so welcoming. It definitely has been easier because of the friendships and support that we've received through all this.

We're tired from the family reunion so we're just resting right now. We have to clean the apartment and then go to the last appointment at 2:00 pm. After meeting with Dr. Park, we'll head on back, driving, to Spokane. We probably won't be home until late this evening. I'll post what's next on the treatment plan.

The radiation doctors went over with us the possible long term side effects because of radiation. Most likely about an inch of growth stunted. Very unlikely but possible second cancer in the radiated area years later. Don't really want to think about it now so that's all I'm a gonna say.

Tuesday, August 14, 2007

Almost Home!!!!!!

To Josh Sundberg: Hey, just because I didn't cliff dive didn't mean I was a chicken. We just needed a designated driver in case everybody got hurt! Bennet is quite the fish so I know he'll go cliff diving with you.

Only Wednesday, Thursday, Friday, and Monday left! We have an appointment with Dr. Park just to go over the next 6 months and the next phase and then we'll be on our way home. This weekend is the Welchly family reunion so Jeannine and the kids drove back home today and Jovee and I will fly back to Spokane on Friday, go to the reunion, and then fly back Sunday night. They couldn't accommodate us by doing the Monday radiation earlier so we just had rearrange things and go with their schedule. Whatever.

So we went to the San Juan Islands yesterday, specifically Orcas Island. It was beautiful scenery and the thought of being at the tip of the US and almost out of the country was neat. It was kind of a quick trip, didn't get to see much. Just at at a pizza joint called Portofino's (don't ever waste your money there, it tied for the worst pizza that we've ever eaten) and drove back to catch the ferry. It was good family time though. The kids had fun on the ferry and thought it was cool.

Other than the one day where she threw up, Jovee really hasn't had too much complications with the radiation. Every now and then she gets tired and just lays quiet and her voice gets a little raspy but other than that she's responded really, really well. Again.
We met a family this last Sunday that came to feed everyone at the Ronald McDonald House. They were here for about a year. They're from Yakima. Their son was diagnosed with neuroblastoma stage IV at the age of 3, went through all the treatments, went into remission for a year, relapsed, and then passed away at age 6. They came to feed everyone because they knew what it was like to live here and go through the cancer battle. It was really good to talk to them but man, I had a break down full to tears moment when I learned that he relapsed and then passed away.
At times we think that Jovee is going to be around for a long time. Then there's other times when she doesn't feel good and gets lethargic and tired and Jeannine and I wonder if the hidden microscopic cancer is taking a toll on her and we just don't even know it and she just toughs it out. It's those moments that are tough for us. Nobody ever wants to think that their loved ones, especially if they're really young, is hurting from pain. Austin's mom and dad understood that when he was about to pass away that it was just a tad bit easier to let him pass away because he was in so much pain from the leukemia. When I think that she is slightly hurting, she gets a lot more loving. And tighter hugs and longer kisses.
Tonight, since it was just Jovee and I, I took her shopping for a new outfit and then we went to read books at Barnes and Noble. It was just nice to be with just her. The one on one moments are pretty precious.

Friday, August 10, 2007

6 more

Only 6 more radiation treatments to go! She's starting to get good stubbies on her head. It's exciting to see hair come in.

Wednesday, August 8, 2007

Possibly more treatments

So Jovee still doing well with radiation. Yesterday was the first time that she might have had any side effects because she threw up around lunch time. It's been 11 treatments and yesterday was the only thing that has happened to her as far as complication. She hasn't had any redness in the radiated area like they say she's supposed to get. At least not now. Her itchy, scratchy throat has only happened a couple of times so really hasn't been that much of a concern.

Not much new news. Just itching to get out of here and be done with this phase. Monday the 21st is the last radiaiton treatment then we can go back home to Deer Park.

Depending on what we want to do, she could get her Hickman line out soon. It depends on if we want Jovee to be part of a new treatment in fighting neuroblastoma. Doctors don't know if using the combination treatment will reduce the risk of the cancer coming back that that is their hope. The antibody ch14.18 is an experimental drug. About 423 children will take part of this study in hospitals all over the country. It's all experimental. There's 4 drugs that are used in the study; one by mouth, one will be given bya shot, and the other 2 will be given through Jovee's central line. Jovee would be in treatment for about six months and follow-up will last for Jovee's entire lifetime.

We're tired. That's about all we think. But we want to give Jovee the best chances. Since it's experimental, we'll see.

Thursday, August 2, 2007


Nothing much new, just same ol same ol here in crowded and populated Seattle. One more radiation treatment tomorrow and she'll have 9 treatments down and 11 to go. The nurses and anesthesiologists all just adore Jovee...mostly because she's so cooperative for a 2 year old. They say that there are some kids older than Jovee that just pout and drop on the floor and just throw the biggest fit when they have to get ready for radiation. Jovee is so submissive and cooperative. All 8 times, every time, she has been so good...especially when she has to lay on the radiation table. She just walks right in the room, puts her hands up for me to pick her up and lays there for them to do their thing. Very proud of her.

Today is a beautiful, clear day. Seattle has a big Air and Boat show this weekend and the Blue Angels have been practicing overhead. Very load and awesome when they roar by.

Business has been slow. Spending more on expenses than what's being brought in. We got good cars for good prices but just has been slow. And it doesn't help that I'm here also. Nothing like being there to manage your own business. The idea of a Chinese restaurant in Deer Park would be fantastic but not for us right now. We'll see how it goes when I get back.

July 31st was our 9 year wedding anniversary. I think I'll keep her around just a little bit longer. Just kidding. She's been great. Got a great wife, obedient and good kids, very good family and friends. Makes going through tough times a little bit easier. Who could ask for anything more? A Kawasaki Ultra 250X, with 1500cc's, and 250 horsepower (with a helmet, of course)...oh yeah!!!

Monday, July 30, 2007

Radiation and Camp

Amazing friend we met at camp from Montana that has a beautiful son named Hudson who has cancerous brain tumor.
Loved the balloons.

Loved the stars.
Awesome young lady that was Bennet's counselor, Sophia.
Aquaboy, loves the water.
Brooke and Desi, her newest girlfriend.

The kids and Jeannine all last week were in Gig Harbor, Washington, about 60 miles away at a camp called Camp Agape (, a week long camp for kids and families with cancer. We all had a great time, met wonderful people, and had a good relaxing week. Well, Jeannine and the kids mostly did. I enjoyed it but had to do a lot of driving. Jovee and I would leave in the evening, go to her radiation appointment the next morning, and then drive back to camp. It was a lot of driving and traffic at times was horrendous but all in all it was a good time at camp.

Jovee's radiation appointments have been quite easy. We wake up, drive to the medical center, they take her almost right away at 8:00 am, we go to the radiation room together, she lays down on the radiation table, gets a shot of anesthesia, I give her a kiss just about a second before her eyes close, go for a little 20 minute walk, and come back to see her in the recovery room. It takes her about until 9:00 am to 9:15 am to wake up from the anesthesia and as soon as her eyes open and everything is fine, we're able to go home. The actual radiation lasts maybe 15 minutes long. The waking up from the anesthesia is the longest part of all this. So far, 4 radiation treatments, it has been a breeze; far less stress on her and us then any of the chemotherapy.

She hasn't had any side effects from the radiation at all, even though she's only had 4 treatments. We're supposed to expect redness in the radiated areas in a couple of weeks but maybe, maybe not. So far, so good.

At Camp Agape there were counselors assigned to each of the kids there so the parents didn't have to do too much watching, more relaxing than watching. It was really nice. Tyson had Wes, Brooke had Dezi, Bennet had Sophia, and Jovee had Kroger. All outstanding, top notch, wonderful superstars. We call them superstars because they were all super. It was like a big brother, big sister kind of a thing. Brooke bonded and loved Dezi (short for Desiree), Tyson and Wes became real good friends, Sophia was perfect for Bennet's hyper personality, and Jovee just adored Kroger. It was a very, very neat thing to be a part of at this camp. We met another family that had a child have neuroblastoma, who is now in remission and doing very well. It was nice to share our story of Jovee and hear their story of Sam and see that it is possible to be in remission from all this. There is light at the end of the tunnel. Jovee's last radiation treatment will be on August 20th, total of 20 radiation treatments.

Monday, July 23, 2007

Radiation Plan

1st radiation treatment will start tomorrow morning at the University of Washington Medical Center @ 8:00. The plan is for 3 weeks of radiation...each treatment from start to finish should be about an hour long. No food or drink after 2:00 am.

Thursday, July 19, 2007

Next steps...

So we show up at the University of Washington Medical Center, that’s where all of Jovee’s radiation treatments will be at, at 8:30 am, they take about 20 minutes to get her in the CT Scan room, put her to sleep with anesthesia (knocks her right out – still amazed), I go for a walk around the campus in the refreshing rain, come back at 10:00 am, she becomes conscious around 10:55 am, we leave right away, and that was that. Easy appointment today. The simulation, as they called today’s appointment, was to mold a cast of her body so that every time she gets radiation she would lay at the very exact same position inside the mold, with anesthesia every single time.

So what we do know for sure now is that they want to start radiation treatments sometime next week, don’t have an exact date they said but sometime next week. They’re going to target both areas – # 1 area: the area where the main mass was (reason being is to make sure that the microscopic, non-visible neuroblastoma cells would be targeted – there is scar tissue left from the big surgery and even though they are sure all of it is gone, they want to make sure 101% that the microscopic cancer cells are gone), #2 area – where the centimeter diameter mass is on the left middle side where they believe is another neuroblastoma spot / mass is.

Each radiation appointment, with anesthesia, should take about an hour from start to finish everyday, Monday thru Friday, for approximately 3 weeks.

Side effects are a sore throat, redness around the radiated areas, small chance that it could cause cancer long term, and possible fatigue. They say that generally kids aren’t fatigued but everyone reacts differently.

So, that’s what we know as to the next mountain that Jovee must climb. After radiation, that should be it. Let’s think very positive and say, after radiation, that will be it, done…forever…except for monthly checkups for the next 5 years with preventative oral medicine only.

Monday, July 16, 2007

Have to believe in another miracle

"We're treating the soft tissue mass as if it is another neuroblastoma tumor...". That was from today's appointment with Dr. Park. The only reason why she can't say it is 100% is because they haven't done an actual biopsy of the tumor. It is an inch in diameter. Because it did show up positive last week on the MIBG Scan as a hot spot, doctors believe it is neuroblastoma.

Yes, disappointed and let down but Jeannine and I suspected that it was all along. We just hoped that it was just left over scar tissue from the big surgery. Have to look at it with a cup half full has not grown since May 10th. Need another miracle to have the radiation in the coming weeks wipe out that neuroblastoma tumor.

Jovee's friend Austin died yesterday afternoon around 4:00 pm. He passed away in his mother's arms. We had prayed for mom to be able to hold and comfort him and that his cancer would not be very painful, at least not so painful where his mother could not hold him. One of our kids told her that Austin died and then Jeannine went to talk to her about it. Jovee said to Jeannine, "Austin walk" and Jovee did the sign language for walk. Jovee then said, "Austin splash", implying that he's playing in his bathtub. "Austin happy", and did the sign language for happy. They had a good relationship while at the hospital and here at the house.

Saturday, July 14, 2007

Friday, July 13, 2007

No new abnormality!!!

Results from yesterday:

MIBG Total Scan:

Mild to moderately intense focal abnormal radiotracer uptake is present in the medial aspect of the apical left hemithorax. Amount of radiotracer uptake in this region is less extensive than that seen previously. THERE IS NO ABNORMAL FOCUS OF RADIOTRACER UPTAKE. THERE IS NO SKELETAL UPTAKE IDENTIFIED. NO NEW ABNORMALITY.

CT Scan of thorax, abdomen, pelvis:

Chest: Previously described soft tissue density in the left paraspinal area appears essentially unchanged when compared to prior exam. Stranding of fat planes of the left should and axilla appear slight decreased.

Heart, contrast-enhanced great vessels of the neck do not demonstrate an obvious abnormality. There has been significant interval improvement in airspace disease in both lungs.

Abdomen/pelvis: Visualized liver, gallbladder, pancreas, spleen, kidneys, and adrenal glands, aorta, and IVC and opacified large and small bowels do not demonstrate any obvious abnormality.

So, not having met with any doctors or oncologists yet, this all appears to be excellent news. I had to go to the file room to get these reports, couldn't wait any longer until Monday, when we're supposed to go over these reports with Jovee's main oncologist. The main concern of the soft tissue mass is still in question but it has not changed in size so we'll see on that.

I was at the playground with Jovee when I called to see if I could get these reports. File room said yes and it took me about 10 minutes to walk over to the hospital with Jovee in her stroller. Nervous, anxious, scared, thankful, all at the same time walking over to pick up the reports. I knew it was going to be sealed in an envelope for privacy reasons so it was like, for those of the LDS faith, opening up a mission call, not knowing what lay ahead. Signed some papers to get the reports, sat down, said a little prayer with Jovee, opened it up, and scanned the reports for any words like "negative", "looks good", "positive results", etc....saw "no new abormality....was so humbled and thankful....had a happy, shed a few tears moment.

Thank you all for your thoughts and prayers. Next step is to meet with oncologist on Monday, go over this with her, meet with the radiologist on Wednesday to go over the radiation procedures and schedule.

Thursday, July 12, 2007

Test day

A little rough this morning not being able to eat or drink...she was irritable and wanted corn dog and cereal and chocolate milk but had to say no. Luckily she took a nap and when she woke up it was time for them to do all the scans at 1:45 pm. They just sedated her with Propophol (?) and it just knocks her right out. Pretty scary that you can just knock someone out in a matter of seconds. I thought, man, I need some for Bennet.

We're waiting for results...patience, patience, patience. She really is doing really good and full of energy. Her eyeashes and eyebrows have remained a lighter brown and I see some blond stubbies on her head...a blond half Asian...that would be pretty cool.

Kids went ice skating today at camp and they loved it. Bennet wanted to go again tonight but we just chilled at the apartment. Aunt Tiffany and future brother in law Micah are over right now trying to figure out wedding annoucements. That's all for now.

Wednesday, July 11, 2007

Good Test Results

So yesterday we packed up again and made the 5 hour trip back to our 2nd home, the Seattle Ronald McDonald House. Jovee was quite restless half of the trip, I don't think she likes the long drive. The weather yesterday and today was quite hot, in the upper 90's. It was very hot all day today. I went out jogging at 9 pm and it still felt like high noon except without the bright sun.

Jovee's routine checkup today was all good. She was at 23.5 pounds and 2'6...her ANC was at a normal 1462. Nurse practioner was happy with all the numbers.

Jovee has to fast again tomorrow, no food or drink pretty much all day. She has CT Scans of the chest, abdomen, pelvis, and thorax.

Results will let us know about the soft tissue mass on her middle left chest area, if it is a another tumor or just left over scar tissue or whatever. Very nervous and anxious. I don't like tests days because I don't want negative results. She has scans at 10:45 am, 1:00 pm, 1:45 pm, and the MIBG at 2:15. MIBG is a nervous test also but please, please, please let the results come back as all negative, no more tumors or cancer cells or anything cancer related.

Have to wait until Friday to actually get all the results back.

Brooke, Bennet, and Tyson start summer camp at the Hutch school tomorrow. They're pretty excited. They go to camp every day from 10 am to 2 pm. Good to have them be kept busy.

Thanks for keeping Jovee in your thoughts. Thank you, thank you.

Monday, July 9, 2007


We've had quite a nice break from the hospital, able to be back home in Deer Park for almost 2 weeks. Jeannine, Tyson, and Jovee flew into Seattle last week Monday and received a message on our phone that everything was rescheduled for this week; all the tests to find out how everything is going with her. So they just did a check up appointment on Tuesday morning and Jeannine drove back that same day. We informed the scheduler to always call our cell phone but she did not. The check up appointment could have been done here at Sacred Heart and the results could have been sent to Seattle Children's. Basically it was kind of a waste of 3 plane tickets because of a lack of communication directly to us.

Well, the lab check ups for last Tuesday were really positive. Jovee's counts, without any boosts, were in the 4,000 ANC range. I absolutely believe in home therapy (my own terms for Jovee being home with familar family and friends). She's done really well and just is as energetic and fun as can be. Yes, we have been spoiled with breaks the last 2 weeks and her feeling really good. Hard to think again and being reminded that she is still a cancer patient with radiation treatments left.

Since we've been home, Tyson's birthday and baptism took place on the same day. He's a big boy now. We had a really good neighborhood BBQ yesterday evening. Our neighbors have talked about it for a while now and we finally all got together in front of Bruce and Beth's front lawn. It was a good bonding moment. We have really good neighbors. When we got back from Seattle our front lawn was very green, mowed, trimmed, and well taken care of with new bark in various places, small picket fences in front of the house. Beth and my sister in law Renee and her kids were taking good care of our house since we've been in Seattle. How very awesome it was to come back to such a nice sight!

We head back to Seattle tomorrow sometime and have tests and scans the rest of the week, Thursday being a big test day where Jovee has to fast again.

Tuesday, June 26, 2007


Got here in Deer Park at around 11 pm last night. I love it here!!!! Seattle is so busy. So nice to be back in our own home. We'll be here until next Monday night. Seen a few friends from here and it's like we've been gone forever. The car lot looks really organized, got lots of things to do to organize it a little better. The kids are very happy to be back at home and Jovee woke up real happy. I completely believe in the "home therapy" - healing by being surrounded by the home environment. It's a beautiful sunny day here in Deer Park. I lost track that it was summer already.

Sunday, June 24, 2007


Our little friend Austin went home to Montana today; will miss his bright, happy personality. When not feeling sick he was just a ball of fire, a bundle of joy. Just a very, very happy boy. Thanks for keeping him in your prayers.

One thing we've learned is to just do something. The acronymns LDS should be "Let's Do Something", being a "doer of the word, not just hearers only". We appreciated so much when our home teacher, Bro. Hegwer, organized a cleaning yard night with the young mens. He'd always ask us, "Is there anything I can do for you" and we'd always reply no but he saw that our front and backyard needing a lot of help and just organized the work to be done. With Austin's family, because of being in a similar situation as them, we just gave them some help without asking them "what can we do for you?". Just look at what you think that person needs and just do something about it instead of just thinking about it. We've been the receipients of so many thoughtful people that "just do it" and always it's been a great help to us. So we're learning to just do it and not just ask if there's anything I can do, let me know.

My cousins arrived today from Denver and we've been hanging out with them all day today. They went to the hospital with us today. We had to go back for lab draws because Jovee's ANC was low on Thursday. Got the results back and they tripled by itself, up to 2,052, from 562, without any G-CSF. That was a nice surprise. We all went to the Seattle Space Needle. Man, looking out on the deck into the city of Seattle just made me miss Deer Park. It's so busy here, housing so close and so expensive; the traffic here helps me learn patience. I miss the two 4 way stop signs in Deer Park. Overall, Jovee gets better by the day. She's eating more and more on her own, even though it's not much most of the time. We continually have her hooked up to the pump and she gets almost 2 cans of Petamen Junior the last few nights. She had a great big smile on her face when she and Tyson rode the flying elephant ride on the grounds near the Space Needle. It's so nice to see her getting better and better everyday. I hope and pray that she continues to recover very well.

Saturday, June 23, 2007

Recovering and Austin

Fun at another beach.
Jovee's hot mama, my hot wife.
Jovee is recovering well. She is still not at 100%, the firecracker Jovee we know but she is getting there. We have CT Scans and more tests the first week of July. That will determine what happens next with radiation. We do know for sure that the radiation will be at least 3 weeks, Monday thru Friday. Depending upon what the tests show on the small tissue mass, radiation could be up to 4 weeks. We are leaning towards staying here at Seattle Children’s for the radiation, even though we might have the option of doing radiation at Sacred Heart.

We have yet to learn all the procedures and side effects that will take place with radiation. We’ll cross that bridge when we get there, taking it all one day at a time.
Right know our minds are focused on a full recovery as soon possible from the high dose chemo and the stem cell transplant. We are reminded again and again of the brutal effects of the high dose chemotherapy.

Another concern on our minds is our little friend Austin. He’s just over a year old and has a very aggressive form of leukemia. We’ve become good friends with his family. Our children play well together (Brooke and Megan – Austin’s 4 year old sister – have become good girlfriends, practically inseparable). We have gone through transplants together, were next door neighbors at the hospital, and have gone to church together. It’s easy to fall in love with each others children. In fact we had a pre-arranged marriage set up for Austin and Jovee. What has weighed heavy on our minds is that Austin will return to our loving Heavenly Father much sooner than we had all planned. As of today, Saturday, June 23, 2007, they have given him only a week, most likely less than two to live. Just in the last two days we’ve seen him start to fade. His mother said, “I can see the light in his eyes getting dimmer”. He has been in a lot of pain. In Austin’s bone marrow, there is a rapid growth of cancerous cells. These cancerous leukemia cells overcrowds and basically suffocates the healthy blood cells and then spills out of the bone marrow, into the bone, and then over into the bloodstream. In 1st grade terms, Austin’s mother explained, he’s exploding from inside the bone marrow outwards.
The only way to alleviate the pain, to ease his suffering is to give him high doses of morphine. They are leaving today, Saturday, to go back home because, as mentioned before, the doctors can’t do anything else for Austin.

What to think of all this, I ask myself…what if this was Jovee? Is this preparing us for what could happen to Jovee? I don’t have any spiritual insights or fatherly intuitions about whether Jovee will be taken home or not…the only thoughts that I’ve had through all of this for the past several months is to just appreciate, love, and enjoy every hour with her, with Tyson, Brooke, Bennet, and Jeannine. Who knows…anyone can be called home at any time. A couple of days ago Austin had a big party at the hospital. His parents wanted to celebrate life. Celebrate life…celebrate the moments that you and I have with each other. “Why should we mourn or think our lot is hard, Tis not so, all is right…And should we die before our journey’s through, Happy day, all is well, we then are freed from toil and sorrow too…” I know this is repetitive.

It’s these times, experiences, and moments that brings out the eternal perspectives and what is needed for our eternal welfare. Learning how to accept what is given to us even though we may not fully understand it. Finding a way to believe when your heart is truly broken. That search for peace that will soon mend a shattered heart.

Tuesday, June 19, 2007

Somber Day

We've become good friends with another couple with a son that is just a little over a year old. He and Jovee were next door neighbors at the hospital and they really enjoyed seeing each other. At one time, Jovee had her purple sunglasses on, saw Austin, lifted one side of the sunglasses up, gave him the "I'm checking you out" was a Kodak moment, very cute. His parents just found out today that his acute lymphoblastic leukemia (ALL) is very aggressive and the doctors here told them he has just a week to live. With permission from his mom, this is a picture of Austin. He's an awesome baby. They're going to take him home either tomorrow or Thursday. Would you please keep Austin and his family, especially his dad, in your prayers. Thanks.

Next steps...

Dr. Park, the top oncologist here at Children's, in yesterday's appointment, said that the infections that Jovee had while neutropenic were very, very dangerous infections and she was very pleased with how Jovee's body healed and recovered and fought those infections. We were very greatful to know, again, that her body was blessed with fast healing.

We have to stay here since she just got out of the hospital for maintenance. Even though she's been discharged, she's still not the firecracker Jovee that we know, still not at 100%. We have follow-up checkups on Thursday and next Monday again. We have to keep her well hydrated because Dr. Park said that the chemo is still in her body and still needs to be flushed out. After next Monday's appointment, we could go back home to Deer Park if all looks well. Everything should be fine so we'll be able to be home for the weekend for our niece's wedding. Then the follow up CT Scans and MIBG will probably be after the 4th of July. Then we'll know about that soft tissue mass...if it's another nueroblastoma tumor or just lymph nodes or whatever...anxious to know. Then radiation begins. Dr. Park said at least 3 weeks of radiation, possible 4 weeks if it is neuroblastoma. Radidation definitely has side effects but we'll cross that bridge when we get there. The good thing I guess is that that mass is only 1 inch in diameter. The main tumor that was removed by surgery was 4 inches in diameter so comparatively this should be killed by radiation, if it is neuroblastoma.