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.