Dark of the Moon

This is fun... our main objective is picking up Transformers 3 Dark of the Moon out today on DVD. Hans got to see it with my dad (Grandpa Oscar) this summer, but it'll be a first for the rest of our gang. Hans LOVES this series and the toys that go along with it - so this counts as big fun in our household.

He has been holding his own over the week at home. He has had maybe two small complaints of pain, but they are not in the same spot. As instructed, though, we have been dosing him around the clock with a low dose of Oxycodone until we get to scans next Tuesday and Wednesday. The 1:30am and 5:30am doses aren't too fun... but beat the heck out of living in the hospital.

We are getting closer to having a teacher come to our home for second grade instruction... we hope to get him started next week.

That's the scoop for now. Nice to have these whole weeks at home... incredible.
Thanks for checking up on us.

Home again, for birthday night!

Hans and Elle at home...Hans STILL won't smile for the camera...argh!


thirteenth birthday shot with her dad

We are home! Hans' pain is being controlled on oral Oxycodone. It's really a low dose, around the clock. They weaned him slowly off the continuous morphine drip, and then off of the pump. We aren't really sure the cause of the pain... the way I understand it now - when they put the PET CT, MRI and MIBG together - there are spots of disease on a couple vertebrae, the sacrum, the pelvis and a bit on the head. It is all bony spots, no soft tissue disease. There is no disease in the area he is complaining about, and there is no new change in the disease??? So, who knows! Maybe it'll just get better and go away - kind of like his arm about two years ago??? Who knows! We'll take a mystery over a disaster any day. For about a day and a half there we had misunderstood the attending on the floor, and we actually thought he HAD progressed per the PET... but we hung tight and went with our onc and the radiologist's impression - no new disease.

Kevin and Elle drove down to LA Friday night and we switched out. Elle and I ran around town Saturday and spent a girls day... soccer game, shopping, dinner and a movie (Abduction). Fun mommy daughter date! I was incredibly happy just to be at the soccer game... outside...even if it was a 2:30 game at 102 degrees! I was hoping we'd get Hans home soon and we did.

Sunday we drove back down to LA and before we picked up the guys, met Aimee for a b'day shopping splurge for Elle, our now Teenage Daughter, and a nice lunch! It was a good way to make the best of a less than perfect birthday with a brother inpatient. Kevin and Hans were discharged as soon as we finished lunch. We picked them up and went HOME!

Hans continues to show nothing but optimism and faith. Every single time he gets sick or has problems he looks to his doctors to make him better. Repeatedly, in the hospital, Hans sits there and does each procedure like a little pro. Our ER nurse told us "That's the easiest thing I'm going to do all night" after he accessed Hans' port. We heard it all week long, "Why can't my other patients be just like you, Hans?" He is so serious and mature!

We were watching our favorite show together one night last week - King of the Hill (it's the one show Hans and I equally like, I think it's our Texas show). In this one episode, Hank (the dad) was afraid to go to the doctor. Hans laughed and laughed at that! He looked at me, and just couldn't get it, he went on and on "Doctors aren't scary, doctors are nice, doctors only want to help! Doctors are your friends! How could Hank be scared of Doctors?"

Great news for now...

I'm so sorry to have kept you waiting. We just got both results and reworked our plan.

The PET/CT was consistent with previous scans, showing no new lesions and actually significant improvement to the head.

Both bone marrow aspirations and biopsies were negative for disease!! And Dr. Shimada was reading them this time, so my confidence is pretty good in these results.

This is truly amazing news compared to the possibility of a dangerous new progression. Ugh. I was a real mess for a couple days there..

The cause of pain is currently a mystery. Hans is still on IV morphine to control it.

We are starting round three of Irino/Temodor tonight. These docs and our NP are so compassionate that they have compressed the five day dose into four days and we are optimistic for a Sunday discharge (on an oral pain plan). Sunday is our bright and beautiful Elle's 13th Birthday. Ahhhh.

We are going to add the bone building drug Zometa into the mix this next round.

We'll likely scan the week after next (MIBG, MRI) and we aim to go onto a new trial breifly and dream of then catching a spot on the ch14.18 immunotherapy antibody trial ... But I dont't want to future trip too much...that obviously doesn't work out too well for me.

Thanks for hanging in there with us. We need all the support we can get on this wild ride.

180

Well, I have put off this update for 48 hours because it is not a fun one to read or write. All was going well...and then...Hans started to have some back pain on our way down to the Dodgers game. We made it through the game and stayed in LA. The back pain got worse at midnight Friday night and by 5 am Saturday the lower back pain couldn't be controlled by his oral Oxycodone.

Sooo....we've been inpatient since then. Right now they have him on a morphine pain pump that seems to be taking care of the pain. We've had a couple of different action plans since admission, but the present plan seems to be: CT and bone scan today, bone marrow biopsy tomorrow. It seems we'll possibly postpone therapy as we await this new disease evaluation. Hans is also pretty constipated, so we are working on that. It could certainly account for some of the pain...

Oh, I wanted to share that the TCH bake sale brought in 2650 for the CNCF! Yay. Thanks, ladies.

Cruising along...

Time is pleasantly flying by for us here.

All this week Kevin had some training and field work at Stanford and UC Davis. Roxie (Hans' Godmother and my good gf from Santa Cruz) was able to come down and hang with me and the kids and our animals too. We actually had to take Black to the groomer because he lets his hair get so matted in the summer. She also spoiled me a little by extending out my bday celebration:) We have enjoyed just the normal swing of the beginning of the school year. Roxie allowed me to run around and get things done! I got the ball rolling to get Hans registered for homebound schooling this year. You will not hear Hans complaining that he has a later start date for school than the other kids! I'm not sure when he'll start, but they said they'd call...

The good news here is that his foot is all better, and the double vision is GONE! Hooray! What a relief. In hindsight now, it is clear that all summer long Hans had been doing a nosedive. We didn't know if he'd be able to pull out of it, but it appears as though he has.

Here at the first seven-straight-days in the house since we bought it 3 and a half months ago, I've gotten quite accustomed to lounging around the house and not driving to LA everyday, but we do plan to drive down for a Dodgers game tomorrow.

That's about it around here, honestly feels good not to have much to report. Four more days at home and then the madness will begin again!

So sweet of all my Texas girlfriends and the NB mamas to do the TCH bake sale tomorrow, they knew I'd feel weird not being there, so some of them got together for this pic I'm trying to post, hope to have it up soon:)

Plan for the Month

It feels like I just updated, so I know things must be getting better around here.

We finished Radiation yesterday - wow - 20 days of appointments and visits! I have to admit - - Hans and I keep pouring over the calendar...so many days (especially weekdays) we've been in the hospital, clinic, radiation, something dating all the way back to July 13th! That's pretty much 2 months straight.

Now we get a little breather. We are excused from all hospitals and clinics until September 19th. We'll do a third round of Irino/Temodor the week of the 19th -23rd and follow it up the next week with a full battery of scans. We'll do an MRI of the brain, a CT of the head, chest and abdomen and an MIBG, maybe bone marrows as well. Our doctor and the insurance will fight it out about the PET scan. Apparently the insurance feels it's "experimental" for Hans and Neuroblastoma kiddos to use a PET scan for disease evaluation. Our doctor explained that she'd like to see whether Hans is becoming somewhat less MIBG avid and that the PET could be a window into that. Our Insurance did, however, fund his Temodor. Thank goodness.

After scans, we'll sit down, look at trials, consider all options, and decide our next move. I don't know what we'll do but all available options will be on the table. It is interesting timing right now as there are some interesting options starting to open up.

Hans had a little accident yesterday. The cat (Black) hopped right in front of him and Hans tripped and wound up hurting his little foot:( We are totally bummed that he has to hobble around over a silly accident in the days that we get to be home in a little bit of recovery. But, that's the way it goes sometimes, I guess.

I'll try to keep posting twice a week even though I hope not to have anything too medical to report for a week and a half:)

Labor Day

Got some pics finally posted. Thanks to our pals old and new who helped me celebrate last weekend.

Well, we were fortunate enough to chalk up a perfectly pleasant Labor Day Weekend! We have been happy to have three nice long days at home! We all got to go to Elle's soccer game, had friends visit (thx for driving up A and A!), neighbors over, we swam, we played, we ate, we BBQ'd - Exactly what you're supposed to do this weekend. I actually got to ride the entire bike path with Kev here in town over the past 2 days. Bakersfield actually boasts a 25 mile uninterrupted bike trail along the Kern River here. It's great -- I've heard so much about it from Kev, and finally I got to join him for a ride out and back in each direction this weekend.

Hans goes back in for his two last sessions of radiation on Tuesday and Wednesday. We are planning to go back and forth since radiation appointments are so quick. We don't have any appointments or scans on the books for the next two weeks as of yet.
Hans will likely do a PET/CT or an MIBG scan next week. Results will help direct our next course of action. There are a couple trials we've got an eye on. We hope the timing for the opening of one immunotherapy trial will work out just right for Hans. We'll keep you posted. We may do 1 - 3 more rounds of this chemo combo, but I honestly just don't know. We've consulted with Dr. Maris, and we continue to be amazingly satisfied with our new onc here. I'm sure we'll have a good plan soon. Hans is sure in a different boat than he was in 3 -4 weeks ago. He's such a miracle fighter boy. We just keep looking at him shaking our heads in joy and relief.

SEPTEMBER is National Childhood Cancer awareness month. Last year I tried to do a good job of highlighting different things going on around the country...but this year I'm a slacker. But I want to share this: fellow TX NB mamas Charon and Jennifer are keeping the bake sale alive at Texas Childrens! The Back to School Bake Sale is set for September 16th. Thanks so much ladies, I love that the Bake Sale lives on:) I'm sure you'll put your stamp on it and make it even more special! Thanks to all the bakers and workers too.

Happy Labor Day.