Thursday, May 31, 2007

At Matthews Beach

Neutrophils and ANC

Jovee's ANC dropped from 2475 to 372 over the last 24 hours. Just to explain it to myself better and in easy 1st grader terms, ANC stands for absolute neutrophil count.

Neutrophils are a type of white blood cell. Neutrophils serve as the primary defense against infections by destroying bacteria in the blood. Hence, Jovee is now more susceptible to bacterial infections. When your counts drop below 500, you're considered neutropenic and considered to be at risk for severe infection.

So the chemotherapy is designed to white out the white blood cells and when the counts are low we know that the chemotherapy is working. In theory, since it's wiping out the white blood cells, it's supposed to wipe out Jovee's neuroblastoma cancer cells.

Doctor today said that with this combination of chemo, universally all kids have been shown to be neutropenic for 10 to 14 days. So for almost 2 weeks, starting today, she won't have an immune system. Scary.

We moved to a different room, room 3297. This section of the floor is for transplant patients only. There's 2 other kids here that are getting either a stem cell or bone marrow transplant. They keep this area super duper clean. I'm glad.

Yesterday, on my way to the Seattle Auto Auction, I was listening to a Christian talk show. Here's a good summary of what I learned. He said if you want to get on my good side, be good to my kids. If you want to get on your father in laws good side, take care of his daughter, your wife. So If you want to get on Heavenly Father's good side, be good to his sons and daughters. If I want to get on my Heavenly Father in laws good side, do a great job taking care of Jeannine. Just a different way of looking at things. Made me want to strive a little harder to be good to everyone, Heavenly Father's kids.

Wednesday, May 30, 2007


Snuck out of the 3rd floor unit and went to explore around the hospital.
Hmmmmm, I wonder how my dad got so good looking. That's probably why I'm soooo cute.
Jovee's ANC counts are down again to 2475 but her hematocrits rose up to 30.5, most likely because of the blood transfusion.
The nurses here just love her to death, just like at Sacred Heart. They mostly love working with her because she's so cooperative. When they need to get a blood pressure, the hug around the leg, she just puts her leg out there for them. When they need to draw blood out of her central line, she lays real still for them. Since all this began in October, I can only remember one instance where she was not as cooperative. Every other single instance she's just been so good. Especially when we have to change the dressing on her central line. You have to take the old tape off carefully, clean the area with special solution, clean around the central line, clean both ports, tape it down again as neatly as possible, make sure the tapes all down so there's no openings, etc...we've gotten good at changing the dressing but it still takes a good 10 minutes to do it and Jovee just lays there so still for us to do it. She just knows that she has to get it done.
I think it's the way with the chemotherapy, surgery, radiation in the future, and everything else. A lady came to visit us from the 3rd ward Monday and she, like so many others, have mentioned that Jovee has a mature spirit. She's taught us a lot lessons because of her mature spirit.
Today while walking around the outside grounds of the hospital there was a curb that we had to walk up. When she approached the curb, she stopped and put her hand up to me to reach for her to give her a little boost up. It was nothing big but it helped Jovee get up the curb. I just thought about all the people that have extended helping hands to us, thought about Heavenly Father reaching out with His hands to give us a boost. It made me feel real good to pull her up. I hope that it makes you feel good to know that you've lifted us up many times by your helping hands. Thank you so much for comforting us with your gentle hands when we've needed comfort. I hope to make my hands like those hands of Galilee, to be able to always lift others up.

Tuesday, May 29, 2007

10.4 kilos

10.4 kilos and her ANC went down again to 3492. Her hematocrit was down to 24.1% from yesterdays 26.3. Hematocrit measures the percentage of red blood cells that is flowing through your body. A normal child Jovee's age has around 35% and anytime that level goes below 25% they give her a blood transfusion. So since it was barely below 25% Jovee got a blood transfusion today. She was tired most of the day because of the lower hematocrits. When you don't have that much red blood cells, which carries oxygen, flowing through your bloodstream you're a lot more tired. All she's had for nutrition is Compleat.

Monday, May 28, 2007


10.7 kilograms again this morning so she's maintaing her weight, even though she's throwing up a lot. We keep feeding her through the G-Tube.
Etoposide is probably most toxic out of all through drugs. Hair loss usually starts 3–4 weeks after the first dose of etoposide, although it may happen earlier. Hair may be lost completely. Jovee may also have thinning and/or loss of eyelashes, eyebrows and other body hair.
That's why I have to take the close up pictures bevcause we're so grateful for what she has now. The hair will eventually grow back.


Just watching Cinderella with Jovee...Fairy Godmother says to Cinderella "even miracles take a little time"...sometimes miracles happen when we want them to and sometimes they take a little time.

The latest miracle was finding out that Jovee should have lost some hearing but the audiologist says her hearing is perfect right now.

Jovee only has 24 more hours of chemo left. So far, as far as we know, the only side effects since Friday is that she's thrown up and lost her appetite.

Carboplatin, Melphalan, and Etoposide are supposed to give her a temperature above 100.5...All 3 drugs can reduce the production of white blood cells by the bone marrow, making her more prone to infection. This effect can begin seven days after treatment has been given, and her resistance to infection usually reaches its lowest point 10–14 days after the first day of chemotherapy.

Her ANC level today dropped a lot from yesterday; it's now at 3528 from 6208 yesterday.

We'll see.....hopefully all the healing and miracles will take place over time, the next 10 to 14 days. That's what we're praying for.

It's a beautiful day today, Memorial Day, here in Seattle. The sun is out and the temp is going to be around 67 degrees. Hope everybody has a wonderful day.

Sunday, May 27, 2007

Did well again

Nurse Lim changing Jovee's dressing and central line. Jeannine's gotten very good at taking care of her and doing what the nurses do.
Jovee loves taking a bath. Since she can't get in the hot tub at home, we call the bath tub or anything that she takes a bath in her very own hot tub. This is her hot tub at hospital. She spent about 30 minutes in it today and it definitely boosted her spirits.

Jovee's counts are at 6208 and she actually gained a little bit of weight, 3 ounces to be exact. Tonight she was able to walk around by herself around the floor and was in good spirits. She doesn't eat anything at all (hasn't eaten since Friday night at 9:00 pm - popcorn) so just the feeding tube, giving her 2 ounces of Compleat every 2 hours. She even turned down chocolate! She never turns down chocolate!

2 full days

2 full days of chemo so far...she doesn't really want to go anywhere, just sluggish but no fever.

Saturday, May 26, 2007

The battle begins...

Jovee didn't eat very much today, only a few ounces of Compleat by the feeding tube. She just threw up again at 10:30 pm so her body isn't holding anything in anyways. Her body is reacting to the chemo and she's lost her appetite. She's just lethargic, been like this all day today. We hope for the best for her.

My mom called today. They're all getting ready for my brother's wedding tomorrow. I wish to be there for his wedding but he understood. Talked to my grandmother also and she only found out recently about Jovee when she asked why I was coming down for the wedding. Everyone just told her that Jovee was sick, didn't go into details. I didn't know how to explain to her in Chinese.

Played tennis with the Seattle Tennis group. A bunch of really nice people. Good to have the comraderie. I hope to play a lot so I can take care of myself physically. It definitely makes a difference in attitude.

Did well

It's been almost 24 hours since she started the chemo and so far she's doing really well. She went to bed about 9:15 pm and pretty much slept through the night. She's sleeping still right this second. They say she's supposed to start getting nausea and maybe vomiting...we'll see. In Spokane, she didn't through up that much during the 7 rounds of chemo. But with the different chemo, we'll just see how it goes. The room is much smaller than at Sacred Heart so we try not to have too much stuff in here.

I found a tennis group online that plays every other Saturday here by the hospital so I'm going to go play this morning with them. Should be fun. I demonstrated a tennis ball machine yesterday and put it almost up to maximum speed and feeding the plays every 3 seconds with a total of 45 balls. The machine oscillated so kept me moving and shaking. I was so tired after just one round. Luckily the machine wasn't fully charged and so it ran out of juice. Really, I ran out of juice before it did. Just trying to keep in good shape physically and mentally. We find that as we exercise, it keeps us in better, positive moods. Always trying to think and keep as positive as possible.

Jeannine and I talked about the hymn, How Firm a Foundation:

When through the deep waters I call thee to go, The rivers of sorrow shall not thee overflow; For I will be with thee, thy troubles to bless, And sanctify to thee thy deepest distress.

When through fiery trials thy pathway shall lie, my grace all sufficient, shall be thy supply; the flame shall not hurt thee; I only design thy dross to consume, and thy gold to refine.

There are a lot of families that have children that are in much worse conditions than Jovee is here at the hospital. As for the deep waters that we are swimming in, barely keeping our heads above the water, we visualize those parents barely keeping anything above the deep waters of the trial, maybe just bobbing up and down. So we have to keep our heads up to give hope to those that are in deeper waters than us.

There's a really nice family from Whitefish, Montana. Brenda, the mother, was diagnosed with breast cancer last year and was at the tail end of chemotherapy treatments when they found out their 3 year old daughter had cancer. I didn't ask which one but imagine that double edge sword. Her husband can't be here with them because he has to keep working to keep insurance so she's got the 3 year old and a 2 year old and the husband has the 7 year old. She's a very, very good person; you can tell because of the good spirit that she has but she''s lost faith in God; I can tell because of the small conversations that we've had. So Jeannine and I try to keep positive when talking with her, keeping her positive about what she's going through and what we're going through. Just keep positive by trying to keep an eternal perspective.

Friday, May 25, 2007

1st day of high dose chemo

10.3 kilograms or 22.7 pounds, 79.8 centimeters (she shouldn't get shorter because of the chemo, just kidding).

She's getting hydrated right now for 2 hours and the actual chemo will start about 11:00 am. They'll start with melphalan for 15 minutes and then the etoposide and carboplatin will be continuous. Our nurse is Melissa, we're in Train 3, Room 3282 at Seattle Children's Hospital. Beautiful sunny day so far and I guess we're ready to do this. Jovee's just eating Sun Chips this morning, a few bites of scrambled eggs and 2 pieces of mandarin oranges.

Wednesday, May 23, 2007

Love her hair

At the Pacific Science Center.
The hair on her head, the little eyelashes, and the eyebrows are just great. Just gives us hope. Her last dose of chemo that was given into her body was on March 12th, 2007. So her hair will grow back. I'll maybe miss the bald head.
Love that little head of hers.

Notes from the oncologist

Notes from our 5/18/2007 appointment, at 12:30 pm

Dr. Delaney, one of the main oncologists here that will be watching Jovee closing during the high dose chemo and stem cell transplant, said that most kids that have reached this far suffer a loss of hearing, at least in some form. She was surprised that Jovee had not lost any, as results from the audiologist came in. Here are some further notes from Dr. Delaney:

Jovee has had a very good partial response (VGPR) to chemotherapy. There is one area that is questionable on her CT scan, but is inconclusive by MIBG. This is a good response. "She is where we'd like her to be for transplant."

The benefit of an autologous transplant is that the transplant has the best track record for cure. About 50% of patients achieve long term success. The risk is that about 5% of patients do not surve the toxicity of the transplant itself. About 50% do not achieve long term survival.

Jovee will get high dose chemotherapy in hopes that it will wipe away every vestige of the disease. She will then need her own stem cells to be infused so that she can make bone marrow.

She will get carboplatin, etoposide, and melphalan.

Possible side effects of chemotherapy include:

Low blood counts

Need for transfusions - (red cells and platelets)

Mucositis - (bad mouth sores. Jovee will receive pain medication as needed. Dr. Delaney suggests that Jovee gets used to the suction machine by plaing with it before she needs it.

Loss of Appetite - (Jovee will receive nutrition by TPN)

High risk of infection - (Jovee will receive prophylactic antibiotics, anti-viral, and anti-fungal medication

High fevers - (possibly reaching 104 degrees)

Electrolyte disturbance

Veno-occlusive disease (VOD) - sometimes the liver reacts to the toxicity of the chemotherapy. Symptoms include janudice, weight gain from fluid retention and tenderness of the liver. We can't predict who will get VOD. Usually VOD is self-limiting and the body heals itself. Very rarely, VOD is sever and life threatening.

Lung problems, rarely

Blood pressure instability - (with the administration of etoposide)

Possible long term affects of chemotherapy:


Secondary malignancy - (etoposide carries a 1% risk of developing leukemia)

Infusion of stem cells - Jovee's cells are frozen in a preservative called DMSO. When DMSO thaws it is smelly. It is excreted through the lungs so Jovee's breath will smell. Rarely, a patient can have an allergic reaction to DMSO and blood pressure instability. The nurses will watch carefully for this.

Jovee is a fast healer. She was discharged 8 days after surgery when the expectations was that she'd be in PICU for many more days.

Jovee has a 90 on GFR, a kidney test that measures the way her kidneys function. This test tells us how her kidneys will clear the high dose chemotherapy of transplant. If she was less than 60 we would not proceed with transplant. Since she is between 60 and 100, we will modify the dose of chemo so that it is in the safe range for her.

Jovee will have a tough couple of weeks before her counts come in around Day 10 or 12. We expect her to be in the hospital for about a month after transplant. Ir oder to be discharged from teh hospital, Jovee will need to be engrafted, that is have her ANC about 500, be fever free, and tolerate a little G-tube feeds. Upon discharge she will be seen at the Seattle Cancer Care Alliance for follow up.

Then her care will be transferred back to Dr. Julie Park for radiation and CIS retinoic acid maintenance.

Tuesday, May 22, 2007

Blessed with a burden

From the movie "Freedom Writers" with Hillary Swank, the phrase "You are blessed with a burden" applied to us. Yes, this cancer thing is a tough thing to go through and I wouldn't wish it on anyone but we've had a paradigm shift and view it as a blessing. The miracles, people, power, and experiences that we've all gone through have definitely boosted our faith in the Lord Jesus Christ. Like the February 2nd Fundraiser in Deer Park. That experience was nothing short of a miracle and no one word could describe it.

Monday, May 21, 2007


We went back to Deer Park for a short weekend trip and this picture was taken at one of the rest stops.

Appointments today at 9, 10, 10:45, and 12:00. Jeannine and I get tired of appointments but it's not about us, it's about taking care of Jovee. Sometimes we get so tired of going but then are reminded that the doctors and nurses are just trying to take care of her. For anyone that would have to go through what we have to go through, remember that we are in the driver's seat, not the doctors. We're supposed to have 3 more appointments tomorrow but cancelled 2 of them because they're just rehashing what we already have been told. You don't have to go to any appointments that you don't feel is necessary.

Jovee's body is prepared now. Jovee just layed there, very, very still while the nurse did the EKG. She's so good. With all the lines attached to her, as shown in the pictures up above, she just laid there as still as can be, and let the nurse do her thing. The nurse said Jovee was better than some adults doing EKG's.

Brooke loves to paint and do crafty stuff. After dinner tonight there was a group of young ladies that came and did arts and craft and she was the first and last person at the arts table. We tell her she's the best and I think she believes it. The power of kind, encouraging words goes a long way. Try it on somebody and you'll see them light up.

We were scheduled to start the high dose chemo on Wednesday but it will most likely be Thursday the 24th. Everyone says that the mucositis will be very, very bad (the sores in her mouth because of the chemo). We know that her immune system and white blood cells will be down to zero and she's supposed to be sick and recover for a total of 4 to 6 weeks. I hope, through faith and prayer, that she'll prove everybody wrong.

When Jovee received her baby's blessing, it was said that the spirit will be with her in the infancy, childhood, teenhood, and adult life. I know it's been with her in infancy. The spirit has sustained her so much during these last months.

Her hair is growing back alot. I love it. Tyson's a nerd.
Psalms 46:10. What an excellent scripture. I first read that scripture back in the mission field when I was going through some growing pains as a missionary. This scripture has helped me out many times in my life.

Thursday, May 17, 2007

Iothalamate test today, not fun

World famous Freestyle Motorcross guy Travis Pastrana visited Ronald McDonald House today. Nice young man.

Jovee couldn't eat until 5:30 pm today. All she had were clear liquids. The test was done to measure how Jovee's kidneys will take the chemo when given to her next week. Her hair is coming back so well. She's got eyebrows and her long eye lashes are coming in good also. Expect for her to lose it all again with the high dose chemo.

Tuesday, May 15, 2007

Recent Pics

Sennen Schmidt, President Bates, and the whole Young Men's came over to our house to do yard work. It was supposed to be a surprise but we got a break from the hospital so went home for a week.
Rob Miller, Bishop Deakins, and Brother Block all participated in our clean up. It was a lot of work but with everybody working together, the clean up was fast.

Like mother, like daughter. They sleep the same way.
Those dreamy eyes and his good looks are going to get him far. Yeah, you know where he gets his good looks...
At the Seattle Aquarium.

Just got back from church.
Just being a kid and having lots of fun on Matthews Beach, not far from the RMDH.

More fun at the beach at Matthews Beach

Matthews Beach photos.
At the Woodland Park Zoo.
Today while out on a jog, I thought to myself when and if we go through with the high dose chemo, there will be days when she's going to be very, very sick because of the chemo. I'm going to look at her and comfort her with words like, "Be strong Jovee..." but you know what, I think it's Jeannine and I that are going to have to be strong because Jovee is already strong enough to battle this. Her body is resilient and she's just a tank. I imagined her saying to me, "Daddy, you be strong because I'm strong and will get through this." She's given me lots of strength because of the personality and character that she is and what she's had to endure.

Saturday, May 12, 2007


Exercising again, starting up again is always hard. Compared to the young days of high school where I could play all day long (tennis, basketball, track, volleyball, etc...) and burn a trillion calories, got to start with small, small steps at a time...then I can work harder. Disappointing to see a bigger gut but I have to take care of myself in order to take care of Jeannine, Jovee, and the kids. Need to post some new pictures...will do that later today.

Thursday, May 10, 2007

Lots of Tests

Jovee had a CT Scan of the chest, abdomen, and pelvis. She had a MIBG Scan, which is a scan that shows if there's any little tumors in her bones. She also had a bone marrow aspiration (biopsy) which will show if there's any in her bone marrow. All these tests will show if she has any detectable cancer cells throughout the body. We'll know results tomorrow.

Tuesday, May 8, 2007

Another round

Well, we had a very good week off, being able to go back home to Deer Park. Everything was normal, nothing crazy, different, or too exciting.

Now we're back here at the Extended Stay. Reality hit again when we met with Dr. Julie Park Monday afternoon. She brought us back to reality of the high dose chemotherapy and the reality of Jovee getting really, really sick because of the high dose chemo. So the best course for her now is to kill all the living cells in her body with the high dose and deal with all the tough side effects that go along with it.

Jeannine and I now again face a tough decision on whether to go through with the high dose chemo and stem cell transplant. Jeannine just discovered what looks like a zit with a white head on Jovee and one red mark on her forehead. Chicken Pox? I don't know...we'll see tomorrow morning.

We all went to the Woodland Zoo today. The kids all had a good time checking out all the animals. An orangutan saw me clap my hands and after staring at me for about 10 seconds clapped its hands with me. It was pretty cool that it followed my lead.

Wednesday, May 2, 2007

Normal Week

Jeannine and Jovee flew home on Southwest Airlines last Thursday and the kids and I drove home, got home at 2:30 am on Friday morning. Was very tired but just wanted to get home while we got a break.

Yesterday evening the Young Men's from church came over and did yard work, back and front yard. It helped out soooo much. Our yard looks good. We leave this Sunday the 6th back to Seattle again so it was very much appreciated to have all the help. Our home teacher, Walt Hegwer, was the one that organized all of this. He always asks us if we need anything and we always tell him no so finally he found something that he could do for us. It was supposed to be a surprise because we weren't supposed to be home. What a good home teacher!

Read John Chapter 9. Excellent chapter.

The whole family went bowling tonight at Lilac Lanes. It was fun to see the kids have fun. Brooke is such a funny, girlie bowler. Jeannine broke 100 (103) and beat us all. Good times! Fun family time.