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:

Infertility

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.

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.

EKG

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.

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.

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.

Nothing

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.

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.

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.

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.