Sombering day

Well, all in all, so far, it was somber news...the CT Scan from yesterday, April 8th, showed no change in the primary tumor on the left side....I say so far because we're waiting to hear about her VMA level (that's the urine sample that indicates neuroblastoma - high number, no good; lower, normal number should be around 8-10 on normal kids.) Jovee's # is still moderately high at around 27 and 29. What we are waiting on is the VMA, hopefully later today or sometime tomorrow.

The concern and disappointment is that there was an abnormal spot that showed on her liver (an area where neuroblastoma is known to show up at - well, neuroblastoma can show up wherever it wants to, really). So, one of 3 things:

1. She's had a bad sinus infection for the last 2 months and just the bugs/bacteria that's been going around could be what that spot on the liver is.

2. It's disease/neuroblastoma and is spreading.

3. It could just be some weird thing that showed up and wont' be there again when scanned again.

The MiBg done today will give us a better idea. Just waiting for results. Love the waiting part. Hopefully MiBg will show nothing (but sometimes the CT Scan can pick up things that the MiBg cannot and vice versa) and the VMA level will be steady.

But if the VMA level is higher than her steady upper 20's than the new spot on the kidneys will be a concern.

So the plan today is to wait for the results of the MiBg, wait for the VMA levels...we're planning to do a biopsy of the liver, bone / bone marrow sample, and possibly the primary tumor - all next week.

Another roller coaster of emotions today: waiting, anticipating, hoping for the best / planning for bad news, ...

Out of our hands, as it always has been. The natural man/woman in us needs to think unnaturally and always think big, think the big picture. Hard to sometimes, like right now.

Today was a rough day for Jovee. Toughs days make people tough. She’s tough. What a blessing it was to have the central line. It took almost 2 hours to get to the vein that could be accessed. The nurses started on her left hand, then left arm, right hand, right arm, left foot, right foot, then finally back to the right hand and they got a good vein. Oh it was painful to watch her get poked 7 times.

Tomorrow is the MiBg at 10:00 am. After the scan we meet with Dr. F and hopefully go over the results of today’s CT scan and see what the plan is for the next couple months or the near future. Much uncertainty. The only certainty is that Jovee is tough.

Just waiting

Still waiting to hear back from Sacred Heart oncologist. She was supposed to bring Jovee's case up with the Child Oncology Group yesterday. I think we'll know more of a decision and direction after her scans next Tuesday and Wednesday. Well, the tests are those two days which means results will be Thursday or Friday. Jeannine took Jovee to the doctors yesterday because she hasn't fully recovered from her sickness (pneumonia or whatever it is)...well, Jovee's got really bad ear infection in both ears. So another antibiotic to battle that. She's got lots of mucus and coughs a lot so her appetite has been anything but an appetite. Just mostly drinks her chocolate Pediasure.

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.