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Ahh, here we are at home!

What a relief. Thank you to everyone who helped us get through that one. For your visits(Natalie, Roxie, Kim, mom), calls, care packages(Aunt Pati and Grandma Kathy we've rec'd yours at the hospital yesterday, somehow, plus one wonderful paint by numbers kit from anonymous) Thank you! Thanks for Elle care/home upkeep (mom), Honey and kitty care Elixabeth and fam, :) Thanks to everyone who tried to send a package but it didn't get there yet. I'll keep working on it, and keep you posted.

I'm pretty well wiped out right now so I'll keep it short. We got some potentially wonderful news on our way out the door this morning. There was NO UPTAKE in yesterday's scan. I asked what that means, and Dr. DuBois said "it could be really good news" I inferred that potentially there is no more NB to take up the MIBG. Or, perhaps the scan wasn't sensitive enough to find it. This scan is just a very quick 10 minute MIBG scan. Or, Kevin suggested that Hans might no longer be MIBG avid. Who knows. We don't have our rescanning dates set in stone yet, but she should find out with scans in the beginning or middle of April.

I think we will get stem cells next week. Hans has had a really low ANC, so he's not allowed to go back to the classroom on Thursday. I am hoping he can rejoin the class next week.

Thanks for hanging in there with us.

Oh man, 3.1

Ah shucks. I guess I found my whiny place once again. They came to measure Hans EARLY today and he was at 3.1. I believe that if we were literally anywhere in the two's today we'd be packing up for home.
The good news is they have agreed to come back and rescan us at 3:30 today. I am trying not to get my hopes up, but that's not working out so well for me.
I am a little worried that if he is in the 2's at 3:30 everything with the scan/discharge process will take so long that it will be tooo late for us to be let out of here. We can only go straight home from here if we are let out in the two's. No family house, no hotel. Oh well. We'll see.

Since I'm whining, I'll just say that we have three people trying to get our packages. The crazy thing is no one seems to know where the mail room is. Hans has no fewer than FIVE packages waiting for him in the mail room.

Okay - and just to make thngs weirder around here, the whole hospital system is changing its medications tracking system to an ID band scanning system. This change has been two years in the works and is causing everyone much distress. It also somehow means they have to get a gigantic computer rolled in through my cubby into my poor baby neighbor's room at all hours of the night. We had a Fire alarm at midnight, at which time I was yelled at to move the stool with my computer on it away from the emergency exit door. Oh boy!

Hans is doing better than I am. He would just like his packages! :)

I was actually doing fine last night. We had some quiet time, I caught up on a couple netflix movies on my laptop in my chair, came in to watch to a couple of shows with Hans from the other side of the lead wall. He is really into Finding Bigfoot these days:) I'll let you know if we somehow miraculously bust out of here and make it home tonight. For now, here we sit. One more uncomfortable night. Waaah.

In the sweet news column, our friend Kim, Phil's mom and Desmond's grandma is on her way up with some Jack in the Box for Hans. Sweet!

4.9

So today Hans is a 4.9. This means we should get the foley taken out tomorrow, possibly even today. Here is how I see him from the anti room, reflected in a mirror, behind the lead-lined sheild.

We have been enjoying the city a little bit in shifts. We've walked/jogged through Golden Gate park, and here's a pic of Elle trying to slide down the slide at the Koret Children's Playground. This is easily my favorite playground we've ever been to! We brought Elle here a couple of times when she was a toddler and we lived in Santa Cruz. I once read that this is the oldest playground in the country. Pretty sweet. Elle went tried out her new jogging shoes they picked up at Nike Town/Union Square.

Elle and her friend Madi had a party to get to in Bakersfield Friday night before they could join us up here.

Hans is doing his time. He doesn't have much of an appetite, but we have a fridge stocked with a few of his favorite things. We are trying to keep his things handy, but he says nothing tastes good to him. Should change in a couple days, I hope!

I checked out of the Family House this morning. Ready to hit the road as soon as we get the magic word!

Hans is a ten!

Well, today we are a ten. Textbook. We'll take it.

Hans' packages aren't quite retreived from the mail room (closed on weekends) I'm so sorry - I thought that it would work like a charm. I will try my best to get packages on Monday. ARGH. Thank you anyway!!!

Kevin went out and picked up some more Lego, which really works best to keep him busy for these long stretches. If they have to hold it in radiation for 3 months, so be it. But I bet they won't...

Elle and Kevin are out running around in the city. They were on a mission to get some new running shoes for Elle.

We took my mom to the Oakland Airport today, so she's now back home. (Thanks for coming, mom!) That's the update for today! Thanks for checking up on us.

Twenty

Hans is at 20 today. The guideline is that kiddos usually reduce their radiation number by half. So, today Hans is textbook, I guess. 10, 5, 2.5, 1.25???
Did I tell you they bumped his exit scan up to Monday afternoon. That way we might be able to hit the road more quickly on Tuesday...

I am overdue posting any kind of picture. Here is one of Hans and my mom cooking together Sunday night. It's fun this time of year, if we need a lemon, we just send Kevin to pick one hanging over our fence.

Kevin arrived last night bearing gifts! Thanks to the Jill, Lisa, Tierneys, aunt Susan, and our rad Lego Fairy Megan. They tried to keep notes with gifts, so I may have missed one note, I'm so sorry if I did. Roxie is still here, spoiling us with her attentions and trips to the nearest Jack in the Box for Hans. He is not eating a ton, but likes to have the food nearby.

Hans is always happy to have his daddy by his side!

Here we "glo" again

Hans has been infused with the I-131 Isotope today. He started out at 40. Last time around he was 48 on Day 1. The doc theorized that he has less disease this time around, so not as much of the Isotope took up??? We have to get to 2 to get out of here. Let the countdown begin.

Yesterday, we were treated to a lovely visit/food drop off by Natalie:). Natalie, sis to our fromer neighbor Alana, was on vacation and she and her pal Beth and her adorable son Jack worked us into their plans. Sweet.
Roxie got here today, Kevin flies in tonight. Elle and my mom will drive up first thing Saturday morning.

Hans successfully received both blood and platelets since we got admitted.

This is sort of short and too the point, my brain is just a little fried.
We are all somehow in better spirits! Kevin is packing packages from 6 of you on the flight. Thank you!!! Thanks Aunt Holly, your package was the first to arrive to the floor! Happy B'day to you. I heard a couple of packages are in limbo here, but we're working on it. Sorry, Pat!

Thanks for checking up on us. I'll try to do the daily updates like I did last time.

We are in SF

Hans and I arrived in SF just in the nick of time for our 3pm office visit. Hans was examined and cleared to start MIBG therapy in the morning. Hans and I voted to have some FUN tonight, so, rather than check into the Family House, we checked into a cute hotel in the heart of the Fisherman's Wharf tonite. We did a little window shopping and found a chips n salsa place! Of course Hans wasn't gonna go for the clam chowder bread bowl, but it was okay by me. At a little curio shop, we actually found a mini CA license plate that spelled Hans:) No Elle though... Our kids names are usually hard to find.

Hans and I seem to have the same attitude about this therapy right now. Let's get on with it and get it over with.

My mom stayed in Bakersfield with Elle. Kev will come up on Thursday, and my mom and Elle will follow as soon as they can get out of town. My mom will fly out of the bay area rather than LA. Roxie and Kim and maybe even our friend Natalie will be popping by the hosp.

I have to thank everyone who is having a part in getting Hans thru this treatment by pkgs! Katie - thanks for sending us off with a care pkg last nite! Jill and Lisa, your packages arrived at the house today and Kev can bring them up on Thursday. Hans is actually looking forward to this! Thanks for helping us get thru this nasty treatment.

Hans will have his foley place tomorrow, and he will be injected with the same dose of the radioactive Iodine-131 Isotope. It will actually put him very close to the lifetime max of 60 millicuries/kg so this should pretty surely be his third and final MIBG therapy. Thank you for your thoughts and prayers that this therapy is as effective as the previous two have been for Hans!

The bribery/spoiling approach may be working. Thanks. By the 4th announecement of a package on its way, Hans flashed a genuine smile and said, "I'll only do it for 6 days." Oh boy! Our objective is to not speak much about it, and just get in the car on Tuesday morning. This, only after I sent a warning email to our doctor. I said, I don't think he'll jump out of the car on the drive to SF, but I just want to warn you that there is a LOT of anxiety about it.

Hans DID get to go to school this week. He got a HGUE valentines package heart filled with cards and candy from his class. He's also getting all signed up in speech class, which he may wind up doing partly on campus. We are trying to build a little life here, it's just so tricky! Our other simple successes in our month at home have included getting our coffee table stained and planting the flower pots out front. What a difference it makes. It's nice to have the flowers greet you at the front door. Elle is making more friends here and is finding her way in Junior High. She's going out for Track with try outs in the next week or so. That should be fun! Kevin took me out for a cute Valentines Day date to a Geology talk/dinner and wine tasting at the American Legion Hall. MIBG has given us not only amazing scan results, but our longest stretch of sleeping in our own beds since we moved here. We've had a solid month plus since getting home January 17th.

Thanks for checking up on us. I thought I should let you know that Hans might be coming around just a bit. I thought it'd take until we were admitted for him to surreneder to the idea.

I had a really nice "peaceful easy feeling" after our good news. It was amazing. I felt so calm, and peaceful and relaxed and happy. Well, that's sort of moved on. Last night we told Hans the plan (he'd heard it before, but he was really not allowing himself to hear or believe it). He is very upset to the point of pleading with us to do any other kind of treatment. In fact, he just told me to get on the phone with Dr. Marachelian and find another treatment. He then said, "if they make me do that treatment, I'd rather just live with it." Obviously, we feel we've got to go with his best shot. We'll get him through it. It's just a shame that it's so darn uncomfortable. I think Hans wouldn't blink if it wasn't for that foley catheter.

Anyway, some of you have reached out and asked if you could send a package to Hans. Yes! Please, that would be fabulous. I know he is a real toy monger, and it is almost obscene to send him another gift. But the truth is that it would make him feel loved and remembered, help him pass the time, provide a little bit of excitement and help get him through this difficult treatment, so thanks. You can email me at: kevinandlara@hotmail.com for our home address. Hans' Amazon.com wishlist is linked to our home address.

I just spoke with our Nurse Practioner, she said cards or packages addressed to:
UCSF
505 Parnassus Ave
6th floor PCRC Attn: HANS WEBERLING
San Francisco, CA 94143
Should get to him no problem. We are planning to likely be there from Tuesday Feb 21, through Tuesday Feb 28th. By a stroke of luck, my mom already had a flight booked for that week to be here during he school's midwinter break. We'll get her Sunday. And Hans and I will head up to SF on Tuesday. Kevin is hoping to come up Thursday, we'll deploy my mom accordingly. Poor Roxie has another patient to tend to next week. Her dad is going in for a surgery today. Wishing Skip luck!

I will aplopgize in advance, I'll try, but I am likely to reach my height of whininess in the coming week. The MIBG is miserable for us, but we are well aware of the potential payoff. (A miracle!) You've been warned - if whiny lady is not your cup of tea, feel free to tune out for a week and a half and rejoin us on about Feb 29th for, hopefully, some joyful banter!

Very Good Response!

Wow, wow, wow. I'm wonderfully relieved today with our news. Dr. Marachelian said she had to run down the hall to tell us that Hans responded very well to the MIBG therapy! There is no more disease in the vertebrae. There is no soft tissue disease! They actually now think there never was any soft tissue disease. They now think that the little spot behind the heart was a tiny bit of disease on the vertebrae that is now gone. There is still a touch of disease in the skull and a teensy spot of disease on his hip. Our onc actually said "he's not in remission, but he's almost in remission!"

Our plan is to go to UCSF next week and get through the terrible awful but yet again wonderful MIBG therapy one more time. Trust me, I'm not being a drama queen...it's pretty sucky. Hans will then get his stem cells back in about two weeks time. I looked at our doctor and I asked "does Hans just have a weird kind of Neuroblastoma???". She said, yes, he does!

We don't know what will happen, no one possibly could. But let Hans be one more illustration to us all that it is worth a shot. No one has the answers, no one knows the future, or has a crystal ball. But with faith and love and sometimes tremendous effort and a cup over runneth with hope, you just never know...

Kev and Elle headed South today for a nice hike in Towsley Canyon. Hans and I stayed back due to the fact that Hans wouldn't be able to keep up with the mileage or altitude climb, but it's good that these two got out. We continue to have fun, hoping that somehow the good times will contiue to roll. Hans has scans Tuesday and Wednesday. Stable or better scans will likely come with a recommendation for a final MIBG therapy as early as the following week. I like what our doctor said when she saw him two weeks ago... He hasn't had any other therapy since before Christmas. If MIBG wasn't working, we'd likely be seeing something pop up!

I will try to update you on Wednesday night! Hope everyone gets to enjoy a three (or four) day weekend like us, glorious!

We got yesterday's labs. So, the platelets and the HGB are STILL dropping. Hans' plts were only 7:( and his HGB fell to 9.2, but the ANC is very strong around 4K! We are still using the wait and see approach for transfusions.

Hans is doing really quite well! He's happy. He actually got to make his first visit to the classroom yesterday:) He went to computer lab and then for a classroom visit yesterday morning. Our "plan" is for him to go back for computer lab on Thursday mornings when he can to get to know his class. It was very sweet. The class was full of questions, and Hans was full of answers. He got up in front of the class and fielded any questions ...when did you get cancer, what kind of cancer do you have, what do you eat at the hospital, what are your favorite shows, what happened to your hair?? Hans popped off his cap and showed off his scars and kept up with their questions. Sweet kids!

We are having some gorgeous sunshiny weather here! Hans and I have a lot of flower pots to plant, and a table to stain! He is a very good helper. Elle and Kevin have three and four day weekends, so we are all ready for some more good, family home time. We've been able to take Honey out on walks, bike rides, hitting our park and kicking the soccer ball around a bit. No complaints here! MIBG has certainly given us our best month in Bakersfield thus far.

I must give a huge shout out to Charon Edgington and all the bakers and supporters of the TCH Bake Sale. They raised $1,815 today. That brings our running total to $28,590. Not bad huh? I'm tickled that the bake sale legacy continues. It's amazing - in just a dozen or so sales since we started it up on Valentines Day of 2008 we're closing in on the 30K mark. I love the bake sale as a fundraiser because it doesn't really require much effort, no overhead and has proven to be sustainable. Thanks to all the NB mamas and my old friends and neighbors who continue to support it! I feel like I should be baking!

Feverfree

We somehow dodged that fever and managed to have a nice superbowl weekend at home. I guess it's our high ANC that's saving us. Hans got labs drawn yesterday, and we heard back today that Hans' plts are down to 11:( His HGB is dropping a little too, to 9.9. But the ANC is still up there at 2600! We are holding off on a platelet transfusion due to his reaction risk, but we are keeping an eye out for bleeding problems. We are comfortable with the wait-n-see approach for the possible stem cell infusion.

Hans will scan next week. Valentine's Day, and the 15th. I can't believe it's already scan time!!! This was supposed to be our big month off. It flew by. We are scanning a week early to maximize our reaction time to get him on the next therapy.

Feverwatch

Well shoot - I got all caught up in doing well and being home and now all of a sudden we are on feverwatch:(
Hans was hot last night and when we took his temp it was about 100.0 this morning. He looks pretty wiped out and vomited, isn't eating and has a sore throat:( With a temp like that tho, there's nothing to do but watch and wait and stress dose steroids and hope it doesn't develop. We actually had orders into CBCC to do a blood culture, but luckily his temp didn't go up so I got to call back and cancel that one!
But now, CBCC here in Bakersfield will be all closed up this weekend. A real fever would bring us to CHLA. He probably has a little cold.
His labs from yesterday were once again good and bad. Hgb 10.7, Platelets 24K, ANC 2300 That nice ANC will help us out.

We were hoping to have a kick-back weekend to simply watch the superbowl and commercial and eat snacks together as a family! Put in some more flooring maybe?? (We have 1.5 rooms left to do in the hardwood - go Kev! Hans has really been helping too. I have a video to post one day!) We shall see!

I have been happy to be home! Filling our days with catch up things to do. Elle has been indulging us. She got two cook books for Christmas, one by Paula Deen and one by Jamie Oliver. she'll pick one out and make us a dinner a week. We've so far been treated to The Lady's Mac n Cheese, a pasta from Jamie, and last night we had chicken sausage mashed potato bowls with onion gravy! We're impressed! She's having fun and I don't mind being her prep cook/clean up crew. Hans will chop ANYTHING! Elle also came up with a new game, "Camera Monster". She has actually gotten a few adorable shots of Hans in action as she chases him around the house and the yard with the camera. This was one of her favorite shots from "Camera Monster." Mine too.