Saturday, March 29, 2008

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.

Monday, March 24, 2008

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.

Wednesday, March 12, 2008

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.

Sunday, March 2, 2008


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.