Uncertainty Ahead

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

Easter and Updates

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

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

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

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

Nothing 2 New

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

Pneumonia

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

Line Out, Graduated

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

Results

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

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

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

Semi-Results

Saturday morning cartoons.

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

Getting ready to get blood draws. It's easy process because of her Hickman line, no poking needed.

No questions about it, you know where she gets her good looks.

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

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

CT Scans showed no change in left tumor, still 11 mm x 8 mm. MIBG Scans looks fine. No signs of metastisis. That was verbal over the phone with Dr. F. I won't be completely satisfied until I actually read for myself the dictated results of the actual report, Monday.

She has a little sinus infection so is on Augmentin. Started her last course of Accutane today, 14 days of it and then Jovee actually "graduates" from treatment. We ask so what now, that she still has the neuroblastoma cancer? We're supposed to just wait is what the oncologist says. I'm not really pleased with that answer because she still has cancer.

Worried

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

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

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

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

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

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

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

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

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

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

Update

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

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

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

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

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

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

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

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

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

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

Snowy Days

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

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

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

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