HansJourney

Bill Crews Remission Run Tomorrow

2012-01-27T19:07:00.002-06:00

I have to give a shout out to our friend Blair. Even though you've just fought cancer yourself, you are running the Bill Crews Remission Run in Hans' Honor! Thanks to the Kleins, I know one of you guys are running it for Hans as well. So many people doing so many good things:) I think the Children's Run this year is in Carlie's honor. <3
I love these stories of people doing good. Bill beat cancer and on his 5 year anniversary he started this run along with his wife. All proceeds go to research at MD Anderson. The race is tomorrow and I think it's bittersweet for me to think of all the kiddos running for Carlie tomorrow!

Hans' counts are still rockin' - they haven't dropped too much yet, HGB in the 10's, Plts at 73, and ANC is 1700. I think the plan is to get his stem cells next week, but we need to confirm this with these great counts!!!

Counts still Fine

2012-01-24T22:36:00.000-06:00

Yesterday's Labwork came back at: Hgb 11.5, Platelets 86K, ANC 1400. I guess his counts rebounded a little bit from last week. We'll take it. That's all good. We had some time this weekend to celebrate and visit with old friends. Hans got an email from Chuck E. Cheese that he should come to celebrate his half birthday. That we did! Thanks Chuck E., for pointing out that Hans is now 8 and a half:) My girlfriend Sunny and her family were in LA for a conference. We were lucky to get to meet them for lunch at the halfway point on Saturday, and have them stop by on their long drive home! It may not sound like Bakersfield, CA is that much closer to 'home' in Seattle, WA than Texas, but it really puts us back on the map. Many times this summer we had an old friend or family member passing through town, we just weren't able to meet up with much of the chaos of this summer and our many many nights at CHLA.

We are catching our breath. Hans is back in session with his homebound school program. His teacher, Ms. James, says he's pretty much right on track in 2nd Grade Math and catching up in Reading.

We are visualizing the MIBG taking care of Hans' remaining spots of NB and healing him up.

Post MIBG scan results

2012-01-20T20:45:00.000-06:00

The Post MIBG Treatment scan looked fine. I was actually surprised that the report was peppered with the term"subtle" uptake to the skull, one vertebrae, the area in the hip and that small node behind the heart. There were no spots that we didn't know about (Thank God)! Today Hans and I drove down to LA for a follow up appointment with Dr. Marachelian who is now back from India:)

What's next??? We get to hang out at home! This treatment is slower acting and longer lasting. Our docs will confer and decide about stem cells. Then we should re-scan in about 5 weeks or so. This next scan will give us the results and tell us whether the therapy worked. We have a month! We get to get a little bit of a life. We will then have to decide upon the new therapy... We might possibly do ANOTHER MIBG therapy, antibodies (if the NANT trial gets its funding...), or "something else". There are still a lot of options. I guess right now we are mulling over when/if to get stem cells, and whether or not to do a second, or third, rather, MIBG therapy.

We all feel a little bit like zombies after all the traveling, so we are hoping not to do too much this weekend. A lotta laundry, tho, that's for sure!

Thanks for checking up on us. Perhaps I'll plan to post along with Hans' lab results. He is to have labs drawn locally on Mondays and Thursdays. Sometimes it takes them a day to get back to me, though. His platelets actually continued to climb to 101, and just today began dropping at 78. His HGB is fine and his ANC just dropped to 1000 from 2000 two days ago.

home

2012-01-18T00:06:00.003-06:00

The chair! This was our little space. the four walls had five doors. one was open to Hans' room (great), one was an emergency exit that we weren't to block, one wall had the community shower and another patient's door, and the third wasn't really a wall, but double doors opening to the hall and the nurses station. It wasn't so much an ante room as a fish bowl. There was no real place to put our things. No table, or cupboard. That's why I was going so crazy. But, poor Hans really got the worst of
it:(

Free!

Oh, joy. We are home. Hans was 1.7 this morning. We had the scan bumped up to noon and hit the road.

I made myself buy an "I luv SF" sweatshirt, even though it was a tough week. It is an undeniably gorgeous city. Our little week there tops probably only a week in Alcatraz or some city jail. Well, I'm sure any "ICU" experience would be more terrible. It was amazingly, gorgeously clear, if cold. The San Franciscans are serious foodies and it even trickles into some tasty menu items at the hospital level! This week was surprisingly light on the pocketpook. We could eat hospital meals. We parked for free thanks to our two genius social workers, and the Family House in SF doesn't charge even a "suggested donation". So, we were left to spend our ducats in the pretty, hilly city as we could. Roxie and I had a nice meal out at Park Chow, and my mom and I found a pub for a glass of wine one night. Kev pretty much camped out at Hans' side while he was there, except for his one ride. I was lucky to be relieved of sleeping in The Chair for three nights! I am glad I got a full three nights at Hans' side but I'm not sure what shape I'd be in if I slept there all six nights. I was glad that Hans and I had the back up, for sure!

Hans is GREAT. His counts aren't expected to drop for a couple of weeks. His counts looked great today with the exception of the sodium. It's a little low but that is to be expected for hospital stays where Hans doesn't eat as well as normal. Since home he is feasting on spaghetti tacos, cheese dip, chips and our homemade salsa, daddy's grilled chicken from the carniceria and drinks!

We will get the news about the scan tomorrow. Hans didn't want to poop much while there. I'm afraid the "hot poop" obscured much of the view on the scan. I guess There is No Place (to poop) Like Home. The doc is supposed to call me tomorrow. We're likely to see MUCH more than we'd normally be able to see on a regular MIBG scan. This scan will not evaluate how effective the therapy was. We won't know that for about 6 weeks. This scan will just tell us where the MIBG went. It may have found more NB than we even knew was there. UGH. Our real job is to chill out a little bit. This therapy is both slower and longer lasting than chemo. So, we should get a break. We will likely have to go to LA to see our doc this week.

Kev was able to fetch Elle! Thanks A for being there for us! And thanks to Elizabeth for your TLC with all of our pets! Honey had it good. Thanks again to everyone who rolled out the red carpet for Elle back in Texas. Soo sweet!

2.6

2012-01-16T17:26:00.000-06:00

Argh - 2.6 is sort of a terrible number. If we lived closer, we'd be home. But, Hans cannot be released to a hotel or to the Family House until 2.0 or lower. We are stuck here because of a scan tomorrow at 4pm. We just live too far away (5 hrs) to drive home tonight just to drive back tomorrow for a scan at 4pm. Oh well. We'll hang out. Hans' foley came out this afternoon, so that's at least good big news!

Kevin headed home this afternoon to be better able to tend to his well. It's just sort of hard to work remote. Hans and I will come home after the scan. They will try to bump it up. If it wasn't a Holiday the scan would be done and we'd be on the road. Oh well, what are you gonna do?

My mom flew out today and Elle gets back in to LAX tomorrow. She had a string of hosts and fun. Thanks to Charlene, Debbie, Carmen and Michelle for coordinating fun get togheters for her. I'm sure she's gonna need quite a few days to recover!

4.5

2012-01-15T18:29:00.004-06:00

Hans measured 4.5 today. We now have three of us in a tiny little ante room. We are rotating. Last night Kev slept here and my mom and I went back to the Family House. Yesterday Roxie and I got away to walk part of the golden gate bridge. Today my mom and I we to Fishermans Wharf for clam chowder in a sourdough breadbowl. Kevin's taking a windy/chilly bike ride. Roxie went back to Santa Cruz, my mom flies home tomorrow.

As for Hans, he is doing okay. He worked his way through care packages from grandma kathy, aunt holly/cousin KK and gang, and then everything me, my mom and roxie brought by yesterday. Kev brought him another gigantic star wars lego set so he is pretty much fine. The foley comes out tomorrow I think. Hans can be released to a hotel or the family house only if he measures 2.0 or lower. We need to stick around SF until Tuesday afternoon for another MIBG scan. I asked the radiation team if they could come and do a second reading in the afternoon if the morning reading is close. They said they would:) Basically, Hans is fine and Kev and I are going cuckoo!! That's better than the other way around.

Rads are at 10.5

2012-01-14T14:20:00.001-06:00

Rads moved down to 10.5. Kevin is on his way up:)

Other than that things are status quo around here. Hans doesn't love being in that room, but he is dealing with it.

Thanks for checking up on us. That's about all there is to say today.

Rads are at 18

2012-01-13T18:31:00.000-06:00

Hans had his levels checked today and he measured at 18!

Whoa - I did have to ask... what does that mean? That doesn't mean it's not working does it?
They said nope. All kids are different. Hans' good news is that he didn't have a lot of disesae to begin with, so there wasn't a lot of stuff for the isotope to bind to!

We will just have to wait out the full six weeks to see if it is working, but I am planning on it working.

Reinforcements have arrived! I am now flanked by both Roxie and my mom. Hans couldn't want for a thing. Roxie brought up the loving care packages that Grandma Kathy and the aunts from Scottsdale sent. Hans' little fingers are busy with Lego and Bionicles.

Elle has safely arrived in TX. I know a pedicure has already happened and she's on her way to a play this evening. I'm glad she is having some fun.

Kevin's well is busy busy, so we are planning on having him tomorrow now. We shall see. I think Hans can handle that since he got some nice big packages today. That's pretty good excitement for one day.

48 the countdown to 2

2012-01-12T20:12:00.000-06:00

"Nothing in life is to be feared. It is only to be understood." Marie Curie

The view from Hans' Room

This is Hans after MIBG infusion tonight. He let me take the pic, but wouldn't smile -such a tough guy.

Hans has been infused with the MIBG. Since I don't think I've told you in a while, I'll tell you what we are doing here. Hans' tumors both in his bones and his new soft tissue lesion, are MIBG-avid, meaning they light up on the MIBG scan. About 20 years ago or more, Dr. Kate Matthay, right here at UCSF, had a bright idea. She thought that since the radioactive isotope can be used to illuminate Neuroblastoma on an MIBG scan, why couldn't she jack up the dose of that isotope and wipe the disease out? It worked! Some patients show a complete or partial response to this therapy. Hans had this therapy back in 2008. It wiped out one bony lesion in his arm that has never recurred and put him into a second remission that lasted him nearly one year.

I've gotta give it up to our ladies of science and medicine. Hans was dosed up with 320 millicuries of the radioactive isotope this afternoon in a one hour transfusion. Thank you Madame Curie for your early foray into the field. Hans is a little invisible light bulb of radioactivity right now. Me and the room and the staff are protected from him by time and space. For the next several days Hans will live largely on his own in a plastic-covered, led-lined room. I am seated just outside his door. Each time I enter the room to help him, I must wear booties, gloves and a gown. I wear a dosimeter and record my exposure numbers, wand myself for radiation exposure, and remove the booties, gloves and gown before I leave the room.

Isn't amazing how research investments of both 20 and 100-some years ago are coming together for our boy? Isn't it also shocking that these treatments that sound so barbaric are STILL the treatments we use to save these kids?

After the transfusion was complete, Hans measured at 48 mR/hr or "rads". We discharge at 2. Hans is roughtly expected to drop by half each day. If that is the case then we're looking at 24 Fri, 12 Sat, 6 Sun, 3 Mon and 1.5 Tues. Hans has an MIBG scan scheduled for 4pm on Tuesday, so we hope to be out by then, if not before!

They want me to limit my physical contact with Hans to no more than 25 minutes in the same room with him today. That's the hard part of this therapy. Usually that's about all I've got. "Mama's got ya" is my go-to comfort phrase. But, for a few days I really won't. He'll be on his own.

Poor Roxie will be up here just as soon as she can after a string of rotten car
troubles:( She hopes to be here in the AM! Kevin may make it up here tomorrow afternoon! That's cool. He has a well keeping him very busy. I just got a text from my mom that she can't stand it and she bought a ticket! I got a special delivery from Megan and Kim this am. They trekked up from Santa Cruz with Jack in the Box! That is a blessing cuz I couldn't have left to hit the Jack across town and leave Hans alone today. They also sat with Hans while I registered for our room at the "family House" today. Kim brought lunch:) Sweet.

Now we'll just be bored and isolated! Hopefully there will be no real problems. One of the biggest hassles with this therapy is that we have to give Hans Potassium Iodine drops every 4 hours around the clock to protect his thyroid from the radiation. UCK. That goes on for TEN days. I'

Debbie has Elle and she'll be on her way to TX soon to be reunited with her old girlfriends for the long weekend. (This was her christmas wish.) We selected her travel dates before we got MIBG dates. At first I was terrified. How could I have one kid in SF, one kid at LAX with a daddy who's tied up with his well hitting 'total depth' in Bakersfield??? It all worked out! Thanks again Debi and Deanna and Larisa and Aimee for offering to help, too!

Thanks to Hans' Doll of a Lego Fairy Megan!!! Lego Aliens Attack space ship was put together in our days at home and is already dangling from Hans' ceiling. As soon as Kev and Hans get all the flying lego sets up, I'll share a pic. It has been quite a project.

Thanks for checking up on us. We're hanging in there. We just found out CHOP could have taken him next week. It is truly an INCREDIBLE feeling that teams of docs all over this country are working together to take care of our boy!

here

2012-01-11T22:46:00.000-06:00

Hans is hooked up to fluids, foley catheter in place. We are in the room. We are both hanging in there. Hans is actually doing better than I thought he would. I think he's just a bit depressed to be in here. I'm stressed. But, my stress has come in waves. I finally chilled out last night about 9pm. It took me a while to rid myself of all the bad vibes. Ugg. I think Hans is such a much better sport than any of the rest of us! Hans doesn't get infused with MIBG til tomorrow at 1:30pm, so I am happy that tonight we can still snuggle.

Anyway, thanks for all your concern and notes and calls and emails and messages! Thanks to those of you who told me you could be on the next plane out - thank you! Thanks for the packages, deliveries and support. Thanks to Aunt Debi - She is somehow coming to Bakersfield tomorrow to get Elle to LAX for a girls weekend in Texas. Kevin hopes to be up here by Friday. Crazy times.

Going to San Francisco

2012-01-10T16:12:00.000-06:00

This is how I get my windshield and sunroof cleaned! Hans was helping me ready the car for a roadtrip today, 'just in case'. Oh, and you'll see our new temp. disability placard. We just picked that up yesterday, primarily to keep our parking expense down at UCSF...

We just got news that Hans will be admitted at UCSF for MIBG therapy tomorrow.

At present, I'm a real disaster. We've been put through a horrible emotional ringer the past 24 hours.
- at first we were under the impression that we made counts to go
- we were then told Hans was excluded due to his platelets (Which were 83 yesterday)
We were desperately confused as we'd been told that Hans had to have Platelets of 20. Hans said, "Do they need to hire me to do their math for them? I made counts by 63!" I guess they didn't like a downward trend and wanted Hans' platelets to be "his own".
-UCSF suggested hans get MIBG therapy there on 1/26/12
- Our doc is currently in India - she was pleading via email, along with the rest of our CHLA team, to take Hans NOW.
- CHOP was put on call. We were looking into an MIBG opening there next week as an alternate.
-Hans went in for a re-check of labs today and his platelets came back at 72.
- The UCSF team reconsidered and we werejust told we could be taken.
- At one point in the past 24 hours we were told IF we went, it'd be on Friday, not Thursday.
- We were just told to be here at 10 tomorrow for intake.

My nerves are shot. We've been through a really unpleasant emotional experience. We've lost a day of planning and packing. We've lost a hold on whatever emotional grip on reality we had. But now we've gotta scoop ourselves up and hit the road in the morning with the conviction that it has to be the best choice. I know I'll shake off all this negative energy but I also know it'll take a while. It's hard not to be able to tell Hans what to expect. Now he's upset that we're back to the plan of leaving early Weds when we'd all been told we got an extra day.

I just talked to the NP and she has ativan orders on board to keep Hans relaxed.

I'll update you from SF. Maybe this will be one of those surprises and the worst of it is just getting there??? Please pray for this MIBG therapy to reduce or erase Hans' disease burden!

New Soft Tissue Disease

2012-01-07T00:40:00.001-06:00

I can't even believe I'm typing these words. They barely even compute. Hans' MIBG scan revealed a 2 cm soft tissue disease lesion behind his heart. It's in a spot common for NB to pop up. Between the heart and the back bone. The bony disease is about the same.

We were bracing to make a decision about MIBG based on relatively stable disease, but now we are making this decision based on new growth in merely three weeks time while on ICE.

We are hoping to make counts and start MIBG therapy in San Francisco as early as Thursday. My godsend of a girlfriend Roxie has committed to be there every step of the way. What do you say to someone who commits to show up for the worst week of your life? Thanks, Rox.

We had some good news, but it is all relatively diminished by our bad news. Hans needed both blood and platelets yesterday. I asked them to just admit us and we were able to get tanked up overnight. The amazing thing was that Hans had NO reacation to platelets! Thank the Lord. Hans' platelets had dropped to "less than 5", and HGB had dropped to 7.4. Hans got both blood and platelets. They were also able to add him on for the bone marrow procedure since we were in house. He completed marrows and they are preliminarily negative for NB. We got discharged and are home for the weekend. Last night Elle was spoiled by Aimee's love and attentions. They went out shopping to blow some of E's Christmas cash. Elle was also taken to work, thank gosh they needed a 13 yr old intern!

Local counts on Monday and Tuesday will help determine if we pull the trigger to go to SF. They have set a very low threshold for platelets of 20 (with no additional transfusions) and HGB of 8.0 (he may have a transfusion to reach that level if necessary), and his ANC must be 750. If he doesn't make counts there is no MIBG opening at UCSF until Jan 26th.

Not only is the MIBG still indicated with the new disease, it is even more urgently indicated. I have some anxiety and negative energy about it. I have to figure that out. Hans does as well, but we'll have to figure it out. It really seems to be our best option at the time. The path is all laid out. I have the understanding that MIBG is more effective on bony lesions than soft tissue disease, but that it is still indicated as a therapy for soft tissue disease that is "MIBG-avid" (a.k.a. disease that lites up on an MIBG scan). This new lesion is MIBG avid.

I have followed kids' stories who have responded in worse situations. The main solace I am giving myself right now is that our path is laid and that Hans has now had two random soft tissue spots (skull and lymph nodes) which have COMPLETELY responded to therapies since July of this year. Dr. Tran said it could possibly be another lymph node. We have lymph nodes everywhere.

We plan to enjoy the simple pleasures of life at home this weekend and push forward next week. I feel like I am pushing a boulder up a hill right now. It's a pretty disturbing visual image that there is a new little tumor sitting right behind our boy's heart. Clearly, no one knows how best to proceed, other than one step at a time, gently and with a whole lot of love. Hans provides us with an eternal wellspring of unconditional love. We gain whatever strength we need from that good, sweet love.

Mileage

2012-01-04T22:20:00.000-06:00

I've been putting some miles on our VW this week. Gosh - so far this year I have been to LA to drop off my mom and then pick up Elle the next day. I did get to have a little fun on a night out with Aimee. We've been up and back to San Francisco, with a stop over in Santa Cruz. It's about 350 miles b/w LA and SF and Bakersfield is on the south end. We'll keep it up over the next couple of days with scans in LA on Thurs, Fri and Mon!

My mom is back home and back to work. Kevin completed his century through some strong winds and 7,000 ft of altitude climb! Elle has returned from her lovely Mexico cruise slightly tanner and more cultured;) Thanks, Kayla and fam!!!

UCSF is the closest MIBG therapy center to us. They reviewed Hans' chart and feel he is a good candidate for the therapy at this point. My favorite part of the meeting was when the doc said Hans "doesn't have that much disease". Our least favorite part of the meeting was the blow by blow of the foley catheter Hans will have to have placed for up to one week. Hans is seriously traumatized by this prospect. I can't say I can blame him. I guess my angle on it will be to keep an eye on him and decide if/when it becomes time to ask the team to medicate him for this anxiety. That is not the route we usually have to go, but I can't see traumatizing him, or deciding against this therapy just because of the catheter. I am also slightly traumatized by the set up of the room. MIBG therapy seems to be a universally uncomfortable unpleasant experience. IF Hans makes counts, and IF there is still disease on the MIBG or in the marrow, and IF we decide it is indeed the best way to proceed, we will do the therapy as early as next week.

Hans, Elle and I stayed the night in Santa Cruz with our pals last night. I wish Hans had been a little spunkier. But, the reality is that his trauma around the idea of this catheter had really shaken us all up. He had a tough time transitioning from treatment mode to vacation mode. We hit the road and are now home for almost 18 hours before we get back to LA. What a week! This has been pretty rough. On top of all the travel Hans is still WIPED out from the third round of ICE. He has very low plts of 4, HGB of 8.2 even after transfusion. Fine shape to be traipsing around the state. Thanks Megan, Phil and Desmond for hosting us! And, thanks Roxie for taking me to breakfast:)

We should get CT/MIBG results on Friday. Bone Marrows will be Monday. Thanks for checking up on us. Happy New Year. I hope yours is off to an easier start than ours so far. We're not afraid of logging miles, though. We think it could be an important therapy for Hans right now... Thanks for keeping us in your thoughts and prayers on our crazy ride!

Happy New Year!

2011-12-30T21:43:00.000-06:00

I wanted to wish you Happy New Year and give a little update.
Hans' counts REALLY tanked in this round. His HGB was 8.3, ANC 0 and plts 2.
Since we are headed into a long weekend and plan to be traveling next week, we decided to go ahead and transfuse him with red blood cells and hold off on platelets. No wonder he has seemed wiped out. He got the blood today in Bakersfield. He said getting blood makes him feel stronger and walk faster:)

My mom is feeling better this week than last.

Elle loves Mexico! She said Puerto Vallarta was like a Mexican Hawaii and she told us she has to go back.

Kevin is doing a cool bike ride tomorrow. He'll be riding 100 miles in Ride for Life out of Santa Clarita tomorrow. Proceeds benefit CHLA and the race will be led by former US Postal Service cyclist George Hincapie. He hasn't done a ride this big in about ten years so we are all happy he gets to do it!

Surprise

2011-12-28T10:53:00.001-06:00

Elle got the surprise of a lifetime on Monday. We knew that one of her girlfriend's families back in TX was leaving for a cruise out of LA on Monday. They'd asked if Elle could tag along. We said sure, thanks. But their cruise ship was full and they've been calling every day to see if there was room for a plus one. But, they'd been hearing NO since the day after thanksgiving. We hadn't mentioned it to Elle or her friend. But, on Monday morning, we got a call at 10:30. They were gonna check one last time at the terminal. We told Elle to throw a bag together just in case. At 11:00 we got the call to "come on down". She managed to pack between the screams. We had to hit Target for some new Aviator Sunglasses for her and her friend:) We made it to the terminal by 3pm for her 4pm departure to the "Mexican Riviera" via Disney Cruise. What fun! They are at sea today and will hit Puerto Vallarta and Cabo San Lucas before returning to Long Beach, CA on Monday. We'd of course like to THANK this sweet little family! What a crazy wonderful blessing. I am still tripping out that it worked out. It sure wouldn't have worked if we were still in TX. We just happened to be on standby, and it worked out so well! Bon Voyage Elle.

I know she felt bad ditching her grandma. But we are all happy for her, and my mom and I are keeping the pace really easy for her and Hans around here. My mom is doing a little better after the fall now, but I want to take it a little bit easy on her and give her a chance to rest. Kev has wound up back at the office more than at home with a well that is keeping him busy.

We are in the process of making plans with UCSF. We could possibly go up there next week for a consult and work up, and possibly do the MIBG therapy Jan 12th or Jan 26th...

Thanks or checking up on us!

Merry Chirstmas

2011-12-24T09:23:00.000-06:00

Merry Christmas, everyone!
While we can't be with all our friends and family because we're all spread out...
we are happy to be here at home. And we hope, again, that all of you feel that same sense of joy and peace to be right where you are this Christmas.

Thanks for following Hans' story and keeping our family in your thoughts and prayers on our Journey.

For Parents New to NB Relapse

2011-12-23T11:33:00.000-06:00

I have had this list in mind for a few weeks, for some reason. Top Ten List of Tips for families facing relapse. Here ya go. It's just my thoughts, so take it with a grain of salt.

1. Statistics. Relapse statistics aren't good. Don't put too much weight in them though. Stats are based on yesterday's research. Doctors and researchers are working all over the world on this disease. They could roll out the silver bullet tomorrow. It's our job to try to keep our kid on the face of the planet until they figure it out. Who knows, some one might just win a Nobel Prize for medicine for cracking the code. Don't let the numbers get you down. No one has a crystal ball.

2. Reach out to other Docs. No matter where you are diagnosed, it is likely that relapsed NB will require some collaboration between treatment centers. The truth is no one center has all treatment options. You can shoot an email to an NB expert in a matter of minutes. Most of the time they get right back to you. Many families feel better after they reach out to Dr. Maris and team at CHOP, Dr. Kusher and Team at MSKCC and/or Dr. Sholler and team at Grand Rapids Michigan. These centers see a lot of kids facing relapse. They are rich in experience and options.

3. Let your family and friends support you. Say yes to delivered meals, child care, etc. To friends and family members: Try to never say "let me know if you need anything". Rather, try to offer one example of how you are personally motivated to help that grounds your offer in reality. For example, let me know if I can get Sophie to dance lessons. Let me know if I can send dinner to the hospital once a week while you are inpatient. Let me know if I can organize an airlines miles drive, or a meal delivery.

4. Research organizational support. A lot of families want to do it all alone. The reality is that relapse can be a long haul. Sometimes incomes are limited as it can be difficult for both parents to work in this setting. Relapse treatment can hit 20K each year in out of pocket expenses, especially with travel for treatement! Special organizations were set up to support families in this rough situation and keep them afloat. Talk to your social worker, look into CAN Coroporate Angel Network, National Children's Cancer Society, Ronald McDonald House, Sparrow Clubs, Alex's Lemonade Stand, etc. These organizations can be sustaining.

5. Re-evaluate your relationship with your Oncologist. This is a touchy subject, and one we usually avoid with a ten foot pole. But, you might find that there are subtle philosophical differences between you and your oncologist when you are facing relapse as opposed to front line therapy. All we can say is listen to your gut level instinct. Is your doctor on the same page? Is every cell in your body telling you to get a second opinion? Are you compelled to stay the course? It is important that your actions align with your instincts here.

6. This is our child. We sometimes feel that people may question a move we make or a treatment decision here or there. But, at the end of the day, this is our boy. We believe that God gave this baby to us specifically to do OUR best job with him. To us, that means we have to use every resource, every intuition, and even throw the occasionall fit, to see that he gets what he needs in his extreme circumstances. The way we see it, as his parents, it takes every gift and resource we have to get him through this. We feel obliged, honored, and responsible to do just that.

7. Don't fall asleep at the switch. Relapse can be a long, tiring process, lots of time last minute decisions are made and plans are worked out on the fly. No one will understand the current plan for your child better than you. You will have to advocate, advocate and advocate some more to keep hospitals on schedule and on the same page. Don't be shy. Mistakes and delays can be tragic.

8. Pace yourself, this is a marathon not a sprint.

9. Get informed. You can get valuable information by joining the ACOR N'Blast List Serve, and through the Children's Neuroblastoma Cancer Foundation. We recommend attending the Parent and Caregivers annual conference in Chicago at least one time, especially after frontline therapy prior to any relapse. It is an amazing resource.

10. Have a Top Five list. Have at least a cursory knowledge of treatment options available. Have about 5 therapies in mind you can talk to your doctor about. Things can change on a moment's notice. We find it empowering to have a short list of alternatives. Even if we found out we had to change up therapies tomorrow, we wouldn't feel like we were falling off a cliff.

Hoooooome!

2011-12-22T20:35:00.000-06:00

Hans made it home. We are happily chilling out! Kevin swapped out with me last night. Our kids are still in school ALL WEEK then not back til the 9th!

Hans and Kevin made it home this afternoon. Hans looks a little beat, so he is just relaxing and watching some shows, eating his favorite foods...

No plans to go back to LA anytime soon. I guess the next step...we hope to hear from one of the MIBG centers to hear about scheduling scans and getting Hans on the books.

We have to thank The Protectors Foundation! We were the recipients of a wonderful Chrismtas Gift upon on our return home. This Foundation was set up in the memory of two family members lost to cancer in recent years. Each year they do a golf tournament. This year, our family was selected as one of two families facing cancer as beneficiaries. How wonderful. I would like to THANK them for their generosity, APPLAUD them for using their time in the service of others, and COMMEND them for honoring the "two Bills", Bill Kowalski Jr., and Bill Kowalski Sr. in this way. It's a beautiful thing.

Just Thinking about

2011-12-21T13:11:00.001-06:00

all the NB angles and their mamas, daddies, sisters and brothers during this holiday week. I found a sweet song by the band Alabama that I want to share in the form of this You Tube Video Link: http://www.youtube.com/watch?v=1ss1UN9aN1o called Angels Among Us.

Thinking of you Lily, Carlie, Chloe, Erin, Patrick, Ryan, Sam, Erik, Haliegh, Blaine, Malachi, Serenity, Nick, and all the little angles.

Hans is doing fine. He was pretty pukey yesterday, but perked up to eat not one or two, but three different orders of chicken from two different restaurants. Thanks, A!

snapped by Aimee yesterday

My mom was cleared to fly. She flies into LAX Christmas Day, that will be a divine Christmas gift for us all:)

Round Three of ICE started

2011-12-20T10:52:00.000-06:00

Hans got admitted yesterday for ICE. So far, so good. I'm very pleased that this chemo is just three days. We hope to beat Thursday night traffic out of here. I checked everything off my Christmas list, so it is actually okay that I'm locked up for a couple of days and don't go overboard.
My mom had an awful fall off a ladder while painting a room in her house. She broke a shoulder and has some stitches in her face:( She will find out today if she is cleared to fly down here for her Christmas trip.

That's about it for now. Hans has my laptop so I am typing this post on my phone. He just found "Conqueror of All Worlds", an online video game on Cartoon Network.com. It seems to be a fun distraction for this stay.

MRI Good

2011-12-17T12:50:00.003-06:00

Wanted to share some more good news. MRI looked good. There are maybe some spots that look like treated disease, but nothing of any concern at all! Hallelujah!

ALso, the doc had a chance to sit with the Radiologist and review past and present MIBG scans and has a new read on the MIBG. "His questionable lesions are not at all impressive on review and wondering if they are true." On that note, our rough plan is to shoot for MIBG therapy in January (if an MIBG center believes he would be a good candidate). ICE is back on the table as the bridge to get us to MIBG. So is another chemo combo of Doxo and one other agent. Our plan is to have a good busy regular weekend here, and check in Monday AM to see what they shall do with us. If we do ICE we could be home Thursday morning. The other chemo combo would put us home Christmas Eve... We may even add a round of Zometa... ZICE? ICEZ?

We are totally encouraged and excited that this is prime time to do a second MIBG treatment! Hans' bony disease responded immediately and completely to this therapy back in 2008, and we are optimistic about the opportunity to do it again. Not to mention, thankful that we have stem cells to use as a rescue from the MIBG therapy if needed!

Also, I have to share once again that I am truly so pleased with Dr. Marachelian, she is an angel to me! She called us from her home and spoke with us for an hour about our options at 7 o'clock last night.

Thanks for checking up on us:)

Mixed Response

2011-12-15T09:45:00.000-06:00

Yesterday's scans revealed what they called a "Mixed Response". This is both good and not so good. The good news first: The big bulky NB present in both of the lymph nodes at the neck is completely gone! The CT is normal. This is amazing. Those growths came on very aggressively, growing from lentil to golf ball size within a 7 day period. The fact that they are completely gone is wonderful and significant and certainly something to be celebrated! However, the bony disease didn't respond to the ICE:( There are actually a few NEW (questionable) spots on the skull. The new spots are tiny and are under review, but they are enough to get us concerned. So, due to the fact that ICE has done it's job, and is no longer effective on the disease that remains, we will be changing course, once again.

The Doc said this was both puzzling and unusal to have a mixed response in this way. We've certainly never had this sort of response. But, then, we haven't usually had these two different kinds of disease to contend with. Hans was facing both bony lesions that showed up on the MIBG scan, and soft tissue disease at the lymph nodes, showing up on the CT scan. The Lymph nodes were not what you call MIBG avid. They didn't "light up" with the MIBG tracer. It's a little bit of a puzzle that ICE only affected the non-MIBG avid disease.

Hans didn't make counts with Platelets of 56, so luckily that buys us a few days time to figure out our next course. Our goal is to start "something" the week before Christmas. Everyone is on board to get Hans home no later than Dec 24th. Hans made it clear that he didn't want a Thanksgiving Day replay (no early Christmas morning discharge). He is like a broker in these office visits now - he comes in with his list of demands: I want twelve days in Bakersfield. I want to be home on Christmas Eve. No shots, etc. etc. He's good! We are at home now. We'll go in for labs locally today and they are trying to get an MRI of the brain scheduled for Hans perhaps tomorrow.

We have a few ideas for what to do, but all of us are still thinking. I am just going to give bullets of our top 5:
- MIBG therapy
- Vorinostat
- Immunotherapy
- Fenretinide
-ALK Inhibitor
It is actually possible for Hans to eventually cycle through ALL of these therapies. It is impossible for us to get in and out of MIBG next week, so if we go that course next, we may be looking at MIBG in January with a bridge therapy for next week to get us there.

That's what we're thinking. We should have enough time to pick up our Christmas Cards at Costco, get some of them addressed and in the mail, and hit the road back down to LA. With any luck, that is. We need to get an MRI slot!

I am focusing my thoughts, prayers and mental energy on our doctor having just a little bit of divine inspiration in making this next treatment recommendation. Thanks for your thoughts, prayers, meditations and 'good vibes'!

2011-12-12T10:52:00.000-06:00

Here is a shot I had to share, Holly snapped this pic of all of us and Hans and his amazing ever-growing, kept year-long Christmas wish list. Hans checks off items he gets and keeps taping and adding new wishes. This is actually his same wish list from last year. He takes it with him to see Santa. It's really cute to me. We went to see the Santa across town this week, and just continued to enjoy more good mellow family time this weekend. Hans got all tanked up on blood right here on Friday. Elle is recovering from strep and is back at school today. Scans are tomorrow and Wednesday, so long as we can make it over the Grapevine (6"-7" of snow are in the forecast, and I'm just not sure how they manage that snow here...what their road crews are like...

Blood and Strep

2011-12-08T23:03:00.000-06:00

We are doing okay despite the fact that we now have TWO little patients in the house. Elle's throat started getting sore last night, and this morning her rapid strep test came back positive instantly. It blew me away that at our 9:20 am appointment she was the 7th kid with a positive strep test this morning! Elle is sequestered and is in recovery. I am pretty proficient in fetching comfort foods for sick kids, so she is well kept in mashed potatoes, sweet potatoes, pudding and decaf frappucinos. Hopefully the Amoxicillan will kick in soon.
Hans' labs came back in: HGB 8.0, Plts 9, and ANC 13K! They want to give blood and hold off on platelets. I believe, if we can get Hans on board, we will be getting the blood right here in town tomorrow. I wouldn't mind shaving off about 5 hours from our total transfusion time, so we shall see what plan he endorses.

Scans pushed back a week

2011-12-05T22:48:00.001-06:00

We found out today that scans are pushed back another week. I'm not really sure why... but I'm totally fine with it. I know that Dr. Marachelian had originally wanted them next week...

Hans has dangerously low platelets <5, ANC is Great and HGB is almost 10. We are holding off on a transfusion right now due to the reactions he has had with the last two transfusions.He is looking pretty good. Good enough that we thought we could get away with stepping out to Kevin's company Christmas party. It was actually totally fun and we are loving this company! It worked out really well, the party was at a hotel here in town and we just set Hans and Elle up in the room and checked on them a couple times as needed. It was fun! And now we get to enjoy more 8 more days at home (fingers crossed).

We'll check labs on Thursday and again Monday. THEN we go in for scans on 12/13 and 12/14. He has had a few random pains...one headache and one little back pain.

cheese

2011-12-03T13:58:00.000-06:00

I had to grab a pic of Elle as she was about to hit the door for a birthday party.

And, I have been asked by a bunch of you, what's on Hans' Christmas wish list...
Here is his Amazon.com wish list. Thanks for asking. He really doesn't need a thing! His room looks like a toys r us wrecking ball. I wish I had the "organizes toys well" gene. Not in my set of strengths...

Decking the Halls

2011-12-02T23:30:00.001-06:00

I have been slow to post because we're just busy having fun! We are decking the halls and doing more shopping. Once again I have a real sense of urgency to get 'r done while we can. We don't know what will come up after scans, so I wanna get on it now. Hans is truly a Holiday boy. He is a little ring leader in all of the holiday festivities. It's cute! Elle is right there with him. She kicked off the holiday baking by making us some delicious pumpkin cupcakes.

I got a chance to get out and meet another NB mama, Belen, last night here in town. It's good to make that connection. Belen lost her little Ylaria nearly a year ago. I had fun meeting up with her and her pal Jennifer for Mexican food and a Marachi band:). I heard that the TX NB mama's and friends n family did very well at the TCH Bake Sale. They raked in $2660 today! :)

Hans had some pretty Low counts yesterday. They came back at: HGB 10.7, Plts 6, and ANC 100. He is still okay though!

Labs are fine

2011-11-29T18:29:00.002-06:00

Labs are fine! HGB 13 plts 54 and ANC 6K. Hans is fever free. He had two little strange problems this morning - eye pain and then he threw up once!?!?
Other than that we are just busy here doing regular stuff.
We are shopping, decorating, cooking, eating, trying not to eat too much good holiday food, except Hans who eats as much as he can, hanging out, getting a few more things done around our place, cleaning... relaxing, reading, snuggling, taking walks. This has been like a little 5 day vacation in our own home. Lovely. We are hoping to push the envelope and get to stay here, fever free, all the way through Monday. We can actually feel our "batteries" recharging.
That's all the news I have for today. Thanks for checking up on us!

Reprieve

2011-11-26T13:22:00.001-06:00

Oh, what a nice feeling it is to have this reprieve. Last night my mind was reeling.
Just a week ago we were on our last day of that very long Stem Cell Harvest. SINCE then, we've spent four nights inpatient getting another round of the very powerful Chemo ICE. So much to absorb! We have just over a week before scans. I don't even need to say how much we have to be thankful for.

Among the many things, we are thankful that our new home on the West Coast makes us more accessbile to our family. Thanks, Aunt Holly and Michael for coming out for your visit. They spent hours helping us sort test and string Christmas lights yesterday, as per Hans' specs. I hope our new home owner's association appreciates our artistic expression;)

Hans has Labs locally on Monday and Thursday. I'll plan to post when we get those results, unless there is other news to share. Hans has a dental appointment a week from Monday (dread - all this treatment is not easy on his teeth), and scans Tuesday the 6th and Wednesday the 7th.

Thanks for checking up on us.

Happy Thanksgiving

2011-11-24T14:55:00.000-06:00

We made it home! Elle and I came home last night to start getting the house ready for the day. Hans and Kevin were discharged at 6:30 am!! They were home by 9:00. We are cooking, chillin', smiling...

I am hoping that all of our friends and family are as happy to be where they are at today as we are.

Happy Thanksgiving. Drive safely out there!

19 hrs and counting

2011-11-23T15:18:00.001-06:00

I was just adding up the hours and Hans filled in the blanks for me, "19 hours and we can go home." Oh, I'm pushing for you baby. I can tap into my dad's flair for the dramatics every once in a while (he got a MA in Drama) - I am laying it on pretty thick up here. Discharges can be very inefficient and slow as molasses. I've been presenting my case with anyone who'll listen that we need to expedite this one discharge. They must be sooo ready to get us off the floor. Hans has had one little new issue pop up that we are keeping an eye on. His BP has been creeping up the last few weeks. No one quite knows why but we are watching it and the docs are starting to scratch their heads. He had to take a liquid blood pressure medication last night. That didn't go over so well. Liquid meds are probably only second to shots on the list of things Hans can't tolerate. Oh boy.

I am thinking a lot about all the angel mamas celebrating the holiday with out their bebe. I'm wishing them Peace, Love and Joy tomorrow!

Also - I forgot to mention the next TCH bake sale is coming up Friday Dec. 2nd. I am so pleased that Charon and Jennifer are carrying it on, and so grateful to all the bakers and workers!!! I know they'll put their own special stamp on it and make it even better each time. Nothing like a Texas Sized bake sale to raise money for a cure to kick start the Christmas spirit!

Smooth Sailing

2011-11-22T12:37:00.001-06:00

We are sailing smoothly through this chemo so far. They got it going at noon yesterday, today is Day 2. I guess the latest estimate is an 8 am Thursday departure which is MUCH better than noon. We have scans set for two weeks from now. After that, we don't know. We may change this up, or keep it up for a few more rounds. The second option will be more attractive if scans look better and if Hans tolerates this reduced dose much better than he did his first full strength round of ICE.

Aimee was here last night and she keeps Hans up to date on cool apps, like this one - cat paint, and in his new food preferences. Hans' tastebuds really seem to turn over with each new chemotherapy. ICE has turned Hans into something of a health nut. He has gone from Popeye's fried chicken, to Baja Fresh grilled chicken, and from Mt. Dew to CranRaspberry juice. He gets by on those and Parmesan Goldfish during his inpatient stays. He eats much better at home, but at least he is still eating here.

This stay we are working on Crayola Color Wonder and Color Explosions. I also found an Extreme Dot to Dot book. They are really cool, up to 500 dots to connect on a regular notebook page. Those are keeping Hans busy this stay. Hans has his MO, for some reason he doesn't do the playroom. He just buckles down and does his time and gets through it.

The plan is for Kevin and Elle to come join us tonight! Yay. We are also looking forward to a visit from Kevin's Aunt Holly and Uncle Michael from Scottsdale, AZ on Friday:)

We're Back

2011-11-21T14:12:00.001-06:00

We arrived back at CHLA 4West yesterday.
We are just about to get started on our three day round of ICE. We are waiting to hear from the docs when we can get out of here. We are actually pretty desperate to be home for Thanksgiving. We really don't want to be inpatient two Holidays in a row. Obviously, who would???

We had hoped to start chemo last night. Hans just barely made counts with platelets, but his 12 hr urine tested of his Creatinine levels just missed the mark (kidney function assessment). We started a second collection with hydration and his numbers doubled, so he"s good to go. BUT we lost 12 hours which makes this inpatient stint just feel very pressured! We need to get the chemo in and get out of here. It's like a race against the clock for Turkey Day. But, of coure, Hans' health and safety come first. Right now I'm hearing estimates of a noon Thursday discharge, but we're working on that! UGH.

4

2011-11-19T10:47:00.000-06:00

Bear with me and my variables for one more post. x is = to almost one and y came in at 1.35, so z is just about 4! We'll take it. I remember 4 was the goal for our first collection back in TX. Back then we doubled it, but this time we just made it.

As for the value of a, that's a little unclear. It depends on what therapy we may try. 4 is enough for basically one or two rescues. One if it is a particularly harsh trial, two if it is something like, lower dose MIBG... If that makes any sense. It puts one or two big treatment options back on the table. Hans did it! It was tough, but he did it. I've been emotional about this - because it is such a big draining ordeal. I think Hans did better than I did! But I'm also emotional about the larger mystery of it all. Here we landed in the lap of this new oncologist with progressing disease. She has rolled up her sleeves and gone to work as if she's been caring for him from day 1. She said that this stem cell harvest might not work, but that she had a good feeling about it. She wanted to try. It is an incredible feeling to have someone stick their neck out there for your boy. I'm wiped out, but am feeling so very good and grateful about it all.

The rest of our weekend by the numbers:
Hans and his dad are sure to select at least 4 Lego kits as a reward for the "4" banked cells.
2 - 3 the number of 'playoff' soccer games Elle has over the next 2 days.
40 - the number of hours we get to enjoy at home before returning to LA for a
3- day 2/3rds dose of ICE. We expect to get discharged Wednesday!

Hans is looking forward to helping Kev cook the turkey. He reminded me the other day, as we are in the middle of stem cell harvest all hooked up in the Day Hospital, "Mom, we need to get the turkey by Saturday. It has to thaw for five days." He actually remembered that from previous years and was planning it out in his head. I told him I would have had to Google that. He and Kev are going to go pick it out today.

x+.14+1.3+y=z

2011-11-18T11:22:00.004-06:00

We started with a portion of cells in the bank, x. Wednesday we harvested .14 (I think this is 140,000 stem cells??), yesterday we harvested 1.3. Today we will do another harvest, y. It will all add up to z. I am hoping Z is greater than or equal to 2a - two eventual stem cell rescues that we never even need to use! How much is a resuce? I have heard two widely divergent quotes, a=1 and a=2. That's what I know for now. Today I will ask about x, and try to confirm the value of a. Tomorrow we will find out about y and z. Five years ago when we did this back in November of 2006 I just re-checked the blog and Hans got 7.9 over a day and half. But now, five years of this sometimes barbaric treatement later, he seems to be taking twice as long to produce half as much of these precious cells. It's not too often that my hopes and dreams are best described by the most basic algebra - but I am hoping that at the end of the day - z will be equal to at least one, and possibly even 2 of a.

Hans is pretty stoked to get out of here. He is counting down the hours until this pheresis can be removed at the bedside. He is getting his usual compliments. His harvest nurse Brian said two amazing things yesterday. Hans' line is the best line he has ever worked with! And, Hans is his best patient he has ever had... so tough and stoic and professional about what he's got to do up here. We hear that all the time, execpt from the poor nurses that have to give him shots. We always say Child Life needs to hire Hans for a series of procedural videos.

I'm doing my best to get through these days and not dwell on the moments we are missing out on back at home. Elle had a playoff socer game last night, and she's going to see Breaking Dawn this afternoon with our neighbors, sans her mama:( I remember thinking back when she was in Pre K starting up in soccer, "Wild horses wouldn't keep me from one of these little soccer games." Gosh, what we sure didn't see coming, wild horses, wild card, aka stage 4 high risk, multi relapsed Neuroblastoma! But, none of us would have me and Hans anywhere else in the world than to be here, banking these little bags of gold 'in case of emergency'.

Thanks for checking up on us. I keep clicking back on this video today. Ben Harper's Blessed to be a Witness.
http://www.youtube.com/watch?v=2vJEfU4qCmM

Harvest Day 2

2011-11-17T11:26:00.006-06:00

We are sitting here waiting to get hooked up for Day 2 of the Harvest. We had a good night's sleep in LA at Aimee's B&B, woke up and drove in early, actually arrived before the clinic opened its doors. Ha! That was a first for me. I'm usually 'fashionably' late.

I have no idea how many cells they collected yesterday. Our nurse through the process yesterday, Brian, has been doing this for a good chunk of his career. He's never done a child's second harvest. He was actually surprised. He didn't think they did harvests after radiation. I told him we've had three separate courses of radiation. Our onc is keeping our expectations in check. She has explained that even though the little bags are filling up, it really doesn't mean anything until they count it. I think they are hoping to just round out the half bag we have on hand for one full rescue. But, of course, I'm hoping we do better than that!

My friend Vicki asked me how long stem cell harvest takes. The short answer... we are planning for three twelve hour days, starting yesterday. BUT, the long answer...
First, you've got to have a disease burden that warrants a pretty high dose round of chemotherapy. We got that round inpatient for 5 days starting Oct. 18th, had a week off at home, had a week inpatient for the neutropenic fevers that tend to follow high dose chemotherapy. At that point, we started to try to harvest, then we came back over two consecutive weeks until his counts were just right. Hans has put up with daily injections of GCSF since the end of October. It would be a long haul even if we didn't have a 100 mile one-way commute to our hospital!!!

The amazing thing?? This boy! I was bracing myself for his trauma surrounding the shots to spill over to the rest of this process. But nope. He is handling it like a pro. It almost breaks my heart that he's such a good patient. Hans woke up from surgery yesterday to not one but two bandages. Dr. Stein tried to put the pheresis line in his right leg but it was a no-go. So, he got patched up on the right, and the line went in the left. The line is at the top of his left thigh. It limits mobility and causes Hans to walk slowly. He hasn't complained about it once. He only repeatedly asked how long he has to have it in. He did so well yesterday. He was pretty much trapped in the bed and he didn't shed one tear. I actually finally had to ask him, "How do you do it, Hans? How do you handle all this?" He just said "I don't know." He just keeps asking what he is to expect over the next couple of days, and most importantly, when we get to go home!

Thank you Tanja, for hooking Hans up with Lego:) Sounds like he is "sponsored", at least for November anyway!!! I love it.

It's a GO

2011-11-16T13:31:00.004-06:00

Hans is in surgery right now as I type this. His CD34 came back at 17. Thank you Mozobil. Hans got a shot of this stuff yesterday in clinic and I guess it did the trick. He had to have two shots yesterday. I don't know what it is about getting shots now, but he hates it. There were four nurses in the room to give him his two shots yesterday and two of them wound up in tears. Yikes.

For a quick recap Hans counts needed to be nice and high for a collection of stem cells. This is a brief window in time after a hard chemotherapy treatment. They are placing an extra pheresis line in his femur/groin area. They will filter his blood through a machine almost like dialysis. They magically separate out the precious stem cells and store them frozen. If this collection is successful, he will have more treatment options open to him in the future. There are some treatments so harsh on the blood counts that they won't even be attempted unless the child has stem cells in the bank.

I haven't even known what to pray for throughout this long stem cell process. Now I'm praying as I always do that no new harm comes to him and that we have a successful collection. We also got news that we are likely to be here through Friday and we are not to leave LA and go back home at night. He took that news pretty well. He can take almost any news other than: time for a shot! Thankfully we have Aimee and Claire! I shall post more tomorrow.
Thanks for checking up on us!

Nice weekend...third shot at stem cell, here we go

2011-11-15T17:31:00.004-06:00

They say the third time is the charm. We'll see. Hans got called into clinic this afternoon. He counts looks robust enough to try again. Yesterday Hans tried a new local Bakersfield clinic for labs. CBCC is a local adult cancer center that has agreed to see Hans for labs. I was surprised to see how packed the place was! For a mid sized city of 350,000, I couldn't believe how large their cancer center could be! Anyway, Hans ANC is a nice 6k, HGB about 10, and platelets at 67. This is interesting. With platelets not quite high enough to make counts to proceed with another round of treatment just yet, it's a good time to give a third round of harvest a try. We are in clinic right now for Hans' dose of Mobozil and another boost of GCSF. We have to stick around 'till 6pm and then come back in the morning to check that CD34. If it's even at 7 they may decide to proceed with a line placement and then possible harvest Wednesday, Thursday and Friday.

We are trying to go with the flow. It hasn't really been too easy! Hans creates his coping mechanisms by knowing what's coming and knowing what to expect. It has been frustrating for him not knowing at all what is happening. We are trying to work out a Thanksgiving at home, but we still don't know when we'll start the next round of therapy. We don't even know what we'll be giving him, but I think we are all starting to lean towards a reduced, 3/5ths dose of the ICE.

That's the scoop. More I don't knows than I knows! We had a great weekend. Five straight days at home! :)

Thanks for checking up on us.

Rest

2011-11-10T10:50:00.003-06:00

If one dream should fall and break into a thousand pieces, never be afraid to pick one of those pieces up and begin again.” - Flavia Weedn

Well, yesterday's counts weren't so hot for the possible stem cell collection, so I think we'll give it a shot next week just in case his counts take off. Yesterday's CD34 was a 3, and it needs to be more like a 10 for a possible collection, a nice 100 would make a better collection. For right now, the Rx is a little R&R and days at home. We've been in a medical marathon since Hans' 8th birthday back on July 15th - spending half of our life in the hospital, and even many many more days in the clinic on top of that. It's time for us to lick our wounds a little bit and breathe.

Hans had a nice HGB of 11.7, ANC of 3000!, but low platelets at 5. He got a platelet transfusion and had another platelet reaction of bad hives. We stopped the transfusion about 2/3 into it. We'll go back in for labs Monday, locally. I think I'll sign off for a few days and recuperate! Unless something comes up... I just handed Hans an oxycodone for a little bit of back pain, so who knows!!!

Thanks so much for your donations to Hans' CNCF park. Five years ago, Hans spent 17 days in the hospital as he was diagnosed with Neuroblastoma. I have been talking about his Five Year Campaign now for seventeen days. Way to go, we've raised $8,050 for the CNCF in his park to date. I'm so pleased - my 'secret' goal was $5,000 for five years! I feel indebted to the CNCF. We were able to go to the Parent's and Caregiver's Conference in July of 2007, and we created sort of a mental flow chart in the event that Hans ever relapsed. When Hans did relapse later in May of '08, I was the crazy lady in the ER saying, we'll go to New York, we'll go to Philly! We'll go to Vermont! We'll do anything for this boy! Thankfully, he has a tumor that actually seems responsive to many therapies, and yet it is persistent. We were blessed with a healthy dose of endurance, some emotional reserve, resources, a support network, and an endless supply of love both for and from this kid. We'll do anything we can for him. I believe that God gave Hans to us for a reason. And he gave us to Hans for a reason. We have to do our best by him, that's our job. It's what we're here for. Thank you for showing your support by donating in his honor! Thanks Roxie, for your contributions through Scarf it Up! as well. Today is the final day that 15% of your online order will go to the CNCF.

I plan to post some labs on Monday, unless something comes up.

Home, if only for 36 hours

2011-11-08T22:14:00.003-06:00

We got discharged yesterday! Hans is OKAY. He has an ANC (450), he had no platelets (less than 5), and his HGB came up on its own to 11.8. We are just waiting on platelets to come up. We have to leave EARLY tomorrow morning to see if we make counts for the Stem Cell Harvest. This process could go Weds, Thurs, possibly Friday. OR, we may try it once again on Monday/Tuesday. It all depends on how his counts look, and then what his cells actually do in the collection.

Sorry I didn't update sooner, but you might be able to imagine the whirlwind of 36 hours at home after an "unplanned" 8 days away... laundry, pick up scrips, Halloween decos down, a few Thanksgiving decos up, quick food shopping, food prep for HOME food! Hans got another Homebound session in - he's maybe had a half dozen this year. And, gosh, we're still not fully unpacked because the floors are still going in. It's insane!

It may be exhausting to go back and forth for Stem Cell, but that's the plan, so long as we are not readmitted. Hans just hasn't had quite enough of HOME, so we'll do what we gotta do. We gotta keep our little dude happy and comfortable. His major compalint is these GCSF shots he is getting daily. I'd say he HATES them. I hold him, and Kevin gives the shot. I think Kevin hates hurting him more than Hans hates getting the shot. I've got the best deal going there - holding Hans. We just have to get the daily shots 'til stem cell. It's not fun, and his poor arm is all bruised up now that he has virtually no platelets.

All the while, our eyes are on the prize. We need to get cells if possible, get one more round of something in him, and then, we'll fully rescan, and maybe we can jump back into a more pleasant version of our life... stable or disappearing disease, mellow from-home therapy or trial... more home days than hospital days, more walking the dog, more home food than not. That's what we're working towards.

Thanks to Mayada for the card, and to my old coworker Tanja for hooking Hans up with the Lego Donations Center! Wow, I guess Aunt Susy sent a letter too. Two boxes have arrived... I'm not sure from who... maybe Lego or maybe another Lego Fairy??? So sweet!

May be turning a corner here??

2011-11-06T10:08:00.011-06:00

Cool banner that came with our TX care package...

Hallelujah, we might be turning a corner here. We don't quite have an ANC but we have a WBC that has come up from .13, to .21 yesterday to .71 just this morning! (We've heard you can start looking for an ANC once you hit .8). Wow. The fever hasn't come back in 24 plus hours! Can you believe it??? Perhaps it was the Fluconazole that did the trick. Not all the counts are following suit yet - Platelets are under 5 :( and he got a blood transfusion yesterday. But, we'll rejoice in the good news! They DID start him on the TPN (IV nutrition) just last night.

There is a little talk of HOME, but at the time, we are going to see what his labs look like and we may still pursue stem cells this week if the counts are just-so. Our plan was to do another round of ICE if the first round seemed to be working. But I told our onc that sounds terrifying. We'll see. Perhaps with a drastic dose reduction???

I had a wonderful, magical 24 hours at home with my girl! After a quick gonzo-cleaning, laundry effort, we made dinner, got our nails done, visited with the neighbors. We watched two movies together, put together two of the dining chairs from our new set that has been sitting in its box for several weeks now, went shopping for just a bit of the much-needed home decor for our place, and went to a soccer game! Elle was on D and she had two of the most beautiful outrun the forward and the rest of the pack with a gorgeous slide tackle saves I've ever seen! She's actually pretty fast which just trips me out because I never was fast at all. Elle was whisked off to more fun in LA by Aimee last night while Kevin and I shared Hans time.

All of us were completely spoiled by a 4-box care package from our old neighborhood plus a couple great pals! It was an embarrassment of riches or an early Christmas! Hans may now have just enough Legos to get him through this hospital stay. He works on them with much concentration and diligence. It's pretty fun to watch him go to work. Thanks, so much, to the Shallow Pond/Sandpebble cru! We feel the love!!! (Thanks to our darling friend Michelle for organizing! thx Carm and Charon too:)

Check out: CNCF Park! http://www.cncfparks.org/help-a-child/park/21/
And also Scarf it Up! for a cure 15% of Internet sales go to the CNCF in honor of Hans.

Bouncing along the bottom

2011-11-04T14:18:00.004-05:00

Hans' counts are not doing anything. He has no ANC, a WBC of .13, Plts down to 11 and HGB of 8.6. His fever has been persistent for now nearly, but not quite, one week. It's a funny fever - it goes away with Tylenol. It sometimes doesn't crop back up for 20 hours, but then it sure does. It was just 103.1 this morning. The other funny thing is that Hans looks pretty good. He is sitting up and doing more Lego! Thanks, this time from pals in TX. I haven't seen the card and notes, but Kev brought down all the loot last night. HOW SWEET! Perfect timing for this hospital visit.

They don't know what is causing the fevers. He has no pain. Nothing has come back in the blood and urine cultures. And, actually, the urine has been free of the ketones, proteins and blood we were worried about! They are giving him one IV antibiotic and they are also going to start IV Fluconazole, an antifungal, for a little bit of Thrush. They are also going to start looking for other fungal infections. They have done some blood work which will take days. In a day or two they may order more, and they may also order a CT to check look for any signs of fungal infection in his sinuses or lungs. Kinda crazy! Esp considering he is really looking pretty well. However, he is not really eating much here. Poor kid is "just sick of being here". He misses his dog and taking her on a walk:( He doesn't tend to eat well inthe hospital. Despite the fact that we spare no expense on his requests and keep Aimee running to stay on top of his demands. He is picking at bites of chicken, nibbling chips and salsa and taking in an ounce or two of smoothie.

Kevin has been here since last night, I'm swithcing out and going to be with Elle tongiht, get her to her last soccer game tomorrow, and then we'll both come down. Thanks to Claire and her fam for taking in our girl on a moment's notice.

Stem cell harvest remains a possibility. But, we are actually also discussing the possiblity of giving Hans his last tiny bag of stem cells back to him if his counts don't recover. Our doctor thinks they will, though, next week. ICE is tough stuff. The only solace is that we can visibily see that it is doing something to the tumor in the Lymph Nodes.

Thanks for your donations to Hans' CNCF Park! http://www.cncfparks.org/help-a-child/park/21/ check it out today, it's gone up over $8,000!
And, don't forget you can also Scarf it Up! for a cure 15% of Internet sales go to the CNCF in honor of Hans' "Five Year Campaign". (I'm only going to hit you with this stuff for one more week:)

Still here

2011-11-02T17:27:00.006-05:00

Hans and Kevin trying on their costumes back in August!
Hans and Honey trying on Halloween Costumes, with Uncle Dean

So, I figured I'd at least post pics of the try-on sessions. I didn't get to even see Elle try hers on - that'll have to change!

Hans is still inpatient. He's still got fever:( It was getting better, but he JUST NOW spiked another 103.2... Yuck. His ANC is taking quite a while to recover...in fact his white blood count is so low that he doesn't even have one yet. He is not eating, and he's
having low Potassium issues. It's like a trifecta of bad factors. His mouth sores are bothering him, which plays into the not eating. He has some new issues too. His urine is showing a few things it shouldn't be... blood, ketones and protein. I guess they are keeping a close eye on him. They've upped his fluid intake. He was sitting up yesterday doing another HUGE Lego Set. (Thank you Santa-Daddy.) Kevin's becoming such a spoiler I think I'm just gonna start calling him Santa;) He was awake all day playing and doing a little set, but as soon as he finished, the fever spiked and he is now resting/crashing. I don't even think I mentioned that he needed a blood transfusion as well as the platelets the other day...

I really just don't know what to say about the stem cell harvest. Might not happen this time around. We are not making counts and he needs to get better anyway. We shall see.

In some really remarkable, fabulous news, Hans got a clean bill of vision from the Opthamologist this morning. I actually heard them chuckling and practically high-fiving out in the hall after they examined Hans. His vision is 20/20. The physical eye exam was as if nothing ever happened. For a recap, early this summer Hans had fast-growing, terrifying, large bumpy NB tumors growing up and out of his skull, as well as tumors pressing into his brain. These tumors caused pressure on the optic nerve which resulted in double vision for about two months. We treated Hans with 20 days of radiation and some three rounds of Irinotecan Temodor and the tumors melted away. It was truly remarkable. "As if nothing ever happened."

I'm going to thank and repost. That's what I'm all about for the next week or so. Thank you kind donors, friends, family, and friends and family of friends and family! You have posted more than $7,000 of support for Hans' Journey to the CNCF. Thank you. Check out his park here. NB families can open a park of their own, if that's your cup of tea. Thanks for visiting Roxie's Scarf It Up! and ordering those scarves. 15% of internet sales thru Nov 10th will go to Hans' Park. She is really pleased with the number of orders coming in. Thanks all around. At times like these, when we have spent 54 of the past 108 nights in the hospital, it just feels good to feel your support!

Halloween

2011-10-31T19:01:00.003-05:00

Whether we like it or not, We are where we need to be today. Hans has had quite a couple of days. That ICE really caught up with him. Hans has been admitted and he not only received platelets and blood (thanks again, donors!) he had a Nasty reaction to the platelets. He broke out in hives all over. It was a mess. He had been bleeding out the nose all day from low platelets, then the hives, then a number of bruises all over his little body with such low platelets. He has big bruises just from where he scratched his hives. A couple of days where we really feel like we are back in the trenches. Gosh. Just stinks when we've been literally counting down the days to Halloween since at least August. We had ordered Kevin a costume to match Hans unknown phantom, we'd picked Honey up a bat man costume, and Elle was all set as a flapper. Oh well. We are where we need to be, like it or not. Hans has continued to have fevers as high as 103.3 just now.. There is good news, there is a silver lining. The lymph nodes feel noticeably, significant smaller on both sides. It is incredible. How strange it is to have this visible, palpable disease. We could watch it grow before our eyes from the size of a lentil to the size of a golfball. Now we are watching it melt away. It's more like a gum ball now. Wonderful! With any luck and hope we won't have to do many more rounds of this ICE and we'll have him back on a much more reasonable, manageable, less harsh therapy!
Tonight we are ignoring Halloween...and cozying in for a night of burgers and fries with Aimee and kev and Elle. Sooo sweet that they are all here to pretend it isnt Halloween along with me and Hans. There is plenty of candy though, of course.

Back in'jail'

2011-10-30T16:09:00.002-05:00

We were probably counting our blessings to be home for seven nights. But a lowgrade fever and a bloody nose bought us a night at chla. We r in the ER now. Platelets are 5. ANC is 180:( I hope to do some fast talking and break us outta here tomorrow for some trick or treatin! We shall see. Hans is getting anti bs now and is about to get platelets. He needs them, that's for sure! Thank you to those who donate blood and platelets. That's a special lifesaving gift. Thank you. You can imagine how we feel to be here, the night before Halloween. Hans calls it jail or prison. I just hope that the chemo is doing the same number on the tumor that it's doing to the counts. Until Nov 10th I'm pasting this message up, again and again. Other NB kiddos can open their own parks up as well. It's a new program...just now up and running:).
Thanks for your donations to Hans' CNCF Park! http://www.cncfparks.org/help-a-child/park/21/ check it out today, it's AMAZING. And, don't forget you can also Scarf it Up! for a cure 15% of Internet sales go to Hans' Five Year Campaign through November 10th. Thank you, everyone for your kindness and generosity. I read each tribute to Hans and he is really getting a kick out of it!

Stem Cell Harvest Breakdown

2011-10-28T10:45:00.006-05:00

Hans is still at home, hanging in there. Yay! His HGB was 12.8, ANC 640 and plts 35 when we were at clinic Wednesday. He is getting "hot hands" which is sometimes I think the first sign of a fever, but sometimes not! We are crossing our fingers and hoping and praying we get away with a full Halloween Weekend at home! He is trying to eat, eat, eat and pack on some of the five plus pounds he lost during his last inpatient stint. It's a little tricky with one big mouth sore from the chemo:(

So the onc went over the next two weeks with me. We are going to "try" to collect stem cells next week. This is a big deal. We harvested stem cells back in November of 2006, but haven't attempted them since. (Stem cell harvest works best after some pretty hard chemotherapy agents.) We have one small bag of stem cells left, but it's not really enough for a full rescue. When kids get a hard core therapy such as MIBG or really high dose chemo, they sometimes need their own cells back as a rescue. If kids don't have stem cells in the bank they aren't eligible for certain treatments. Stem cells are liquid gold. They give these kids options. So, we want to collect the cells for possible future use! We are going to start injections of Neupogen shots all weekend and then we'll start going to CHLA on Tuesday. This is how it works. You go in EARLY each morning, like 6 or 7am, under the presumption that you could be going into surgery each day. The first thing they do is check his labs. He has to have an indicator that his stem cells are mobilizing - the CD34 number we are looking for is at least 7 to 10. Our Doc isn't at all certain Hans' cells are going to get there - due to the total amount of treatment he has seen over the past 5 years. If the number is too low on Tuesday, we'll go up to clinic and get a special injection of a medication called Mozobil. I think this is a new cell growth stimulant. We keep coming back each day until we hit the magic number of 7 to 10.
If/when we hit it, we go into surgery and have a pherisis placed in his groin/thigh. This is a special (big) line for the stem cell harvest. Then - it's up to the day hospital where his blood is filtered through a special machine and stem cells are magically filtered out, and the rest of his blood goes back to him. Kids also usually get a blood transfusion, they get Calcium and are at risk for Potassium dips. If we get enough cells on day one, we are done and the line comes out, if not, we are back the next day for more, and maybe the day after that... This is a rough, rough process. I talked to a mom back in Texas who had the opportunity to donate stem cells to her daughter (a different diagnosis) and she described it from her perspective. She said, it's awful. You just cry. You don't know why you are crying but you just cry. It is just that draining and exhausting.
That's what we're hoping for, it can go wrong at every step of the way... even if we go in and try to collect, we may not get enough cells for even one rescue. BUT, our wonderful doc says she has a good feeling about it. We will try. And I love her even more for trying! She did say that if it doesn't work this time, there won't really be a reason to try it again later.
Then, the following Wednesday we'll get a quick CT of the neck and have a meeting after. If the lymph nodes are stable or smaller (and if Hans makes counts), we'll do another round of ICE, if not, it's back to the drawing board. That's as far as we've got mapped out.
Thanks for your donations to Hans' CNCF Park! http://www.cncfparks.org/help-a-child/park/21/ check it out today, it's AMAZING. And, don't forget you can also Scarf it Up! for a cure 15% of Internet sales go to Hans' Five Year Campaign through November 10th. Thank you, everyone for your kindness and generosity. I read each tribute to Hans and he is really getting a kick out of that growing number!!!

2011-10-26T17:35:00.004-05:00

Hi,
Wow - I have to say we're touched by Hans' Five Year Campaign Kick Off. I love it! Each little tribute makes me tear up a little bit! THANK YOU, if you haven't visited his site yet, please check it out here: http://www.cncfparks.org/help-a-child/park/21/ It's amazing to me. I have a 'secret' goal, and it looks like we'll get there!

For the next two weeks there's another way to donate to the CNCF in Hans' honor - by checking off a few items on your Christmas list! Hans' Godmama Roxie operates 'Scarf it up Santa Cruz' and she's decided to donate 15% of her jewelry and necklace scarf sales to the CNCF in Hans' honor from this weekend's crafts fair, and from her Internet sales for the next two weeks. www.scarfitupsantacruz.com
You can find her craft fair this weekend at:
From Pumpkins to Presents Gift Fair Saturday, October 29, 10am-3pm Cypress Community Church: 681 Monterey-Salinas Hwy., Salinas CA

Hans had an Office Visit today and didn't need blood! There's more to report from the OV, but I'll save it - I've gone on and on.

Thanks for checking up on us and thanks for contributing to Hans' 'Five Year Campaign!'

I also must thank aunt Susy for her Halloween artsy care package that kept us busy in the hosp, and Tracy for her special HEB care package. Leave it to Hans to miss the HEB (Texas grocery store) line of chicken noodle soups and kids shampoo and body wash, and leave it to Tracy to fill his order!

Five Year Campaign

2011-10-25T11:24:00.010-05:00

Dear Friends and Family,

I am writing this note to mark Hans’ 5 year anniversary of his diagnosis: Stage IV High-Risk Neuroblastoma, 10/25/2011. In these 1,825 days Hans has had HUGE obstacles to surmount. Hans has not had one single day “off treatment”. It is quite remarkable that he has survived his disease and his treatments to this point. When Hans first relapsed in May of 2008, we were loosely told to expect about 8 more months with our boy. “Take a lot of pictures and go to Disneyworld.”

Hans didn’t give up and neither will we. We have kept him afloat by seeking out innovative doctors and novel therapies. Hans has endured 58 rounds of chemotherapy, 2 major resection surgeries, a stem cell transplant, three separate courses of directed radiation, experimental radiation therapy, he has participated in two clinical trials, and hopes to be eligible for another soon. Hans has suffered debilitating side effects including the loss of both adrenal glands and delayed bone growth. He has not been able to play on a soccer team or spend a solid month in a classroom since his diagnosis. As I type this, he has been in the midst of a rough progression of disease since summer. It is now moving through his lymph nodes and we are throwing big guns chemo at it in hopes of beating it down once again.

And yet, these past five years have brought love and joy into our hearts many times over. I’m sure we’ve been showered with 10,000 hugs and kisses from our boy in these years. We’ve found joy in loving each other, our family, friends and our pets in the best way we can, every day. We live in the hope that Hans will get to see the day he can be cured from his NB. As you know, that cure is yet to be discovered, research alone will unlock that mystery.

Since our son’s fateful diagnosis we’ve seen our friends, family and community come together with two incredible tasks. As a family, we were supported by the Run for Hans, Sparrows for Hans, and a near 1 million-mile airline miles drive. We’ve always paid it forward and have tried to outmatch the support we have received in contributions for research and education. While in Houston, we worked hard with a group of NB parents and our good friends to establish bake sales, lanyard sales and yard sales which have brought in more than $100,000 for the Children’s Neuroblastoma Cancer Foundation to date. In this economy research funding is dwindling from the federal government and corporate donors. Increasingly, it is parent-led efforts that fund life-saving research. We are tasked with asking you and motivating you to donate.

I feel we are on the cusp of great change in the treatment of NB. I believe an exciting zeitgeist is building as researchers around the country and the world attack the problem of this devastating disease from every conceivable angle. Doctors in New York are developing nanotechnology to target NB therapies, doctors in Michigan are making personalized medicine headlines by targeting therapies specific to the genetic makeup of each child’s NB tumor. A child with NB was the first human child to receive an Oncolytic virus in hopes of obliterating this disease. Doctors in Boston are rolling out a legitimate attempt at a vaccine to prevent Neuroblastoma relapse. We are making new ground as immunotherapy has become the standard of care not only in frontline therapy, but a brand new trial is opening in Philly this month for children navigating the landscape of relapse as well. Our oncologist in LA is working on opening more immunotherapy trials for relapsed kiddos soon. With all these improvements coming from different sources, I can feel that a cure could be at our fingertips.

Please honor Hans and his valiant fight against Neuroblastoma by making a donation to the CNCF today, copy/paste this link to Hans' CNCF Gifts of Hope Fundraising Site. http://www.cncfparks.org/help-a-child/park/21/ Any contribution is wonderful, even $5. It just feels good to see the names of his supporters go up on his site. It’s evidence that his story has moved you and that so many people still care. Thank you for making our dream (having a boy that simply gets to grow up) a reality. Your donation is tax deductible. Feel free to share this letter with others who have been moved by Hans’ journey.

With great Love and Hope,
Lara, Kevin, Elle and Hans Weberling

Hello From Home

2011-10-24T16:30:00.002-05:00

Hi -
Just a quick note to say that we are home! We are feeding and feeding Hans and making him drink and drink and drink -hoping to protect his bladder - flooding him with iced water, Cranberry Raspberry juice and even Mt. Dew! Hans is a little fragile looking. He hasn't been weighed lately, but he looks to be down about 5 lbs from that last round. Kevin is working on getting the floors done in his favorite hang out room - that's something to look forward to. Hans got to take Honey on a quick bike ride/walk last night. So great! He actually even had a quick school lesson today from his new teacher, Mrs. James. This has actually been his third session in as many weeks, I've just failed to mention that he got started with all the other excitement.

Grandma Stephanie and Uncle Dean hit the road to LAX to get back up to Seattle today.

Hans goes back in for labs and an Office Visit Wednesday. He is also slotted for a possible blood transfusion. We shall see. I'm excited and even a little freaked out to say that he is slotted for a stem cell harvest on 11/01 and 11/02! Wow. Anyone who has been through it knows what a trying experience it is. It just WIPES YOU OUT, but at the end of two days, you could have these little bags of gold that could rescue you from the most risky treatments!

Tomorrow will mark Hans' 5 year anniversary of this awful diagnosis. So, tomorrow, I'm going to give you an opportunity to make a donation to the CNCF in Hans' honor. I'll share a letter with you tomorrow, and a link to Hans' new CNCF Parks fundraising page. I'm excited about just a little bit of good being generated from our rough situation.

Our dear friend Roxie is going to do a neat fundraiser as well. She's going to contribute a special percentage of sales from her "Scarf it up Santa Cruz" Sales to mark Hans' anniversary. More on that in a couple of days. You could get a jump start on your Christmas list and help fund a cure.

I'd like to say thanks to our special Lego Fairy from the north! Megan, Republic Frigate is amazing!!!! xoxox

One more Disneyland Pic

2011-10-23T13:42:00.003-05:00

Hi,

I had to post this pic of my uncle dean and I on that same roller coaster. Fun!

We are about to get discharged. Now the goal will be to stay home as much as possible. We'll see how that goes. ICE has a way of knocking kids counts down and making way for fever, rehospitalization, transfusions. UGH. We'll see what happens. Hans is soooo ready to go home and to eat his home food (spaghetti tacos ala iCarly, Costco rotisserie chicken, cheese dip, etc)! I think I got it mixed up the other day, the right side that they biopsied is much improved, and the left side doesn't seem to be much smaller. The chemo can keep working after it infuses though, so here's hoping and praying.

Thanks for checking up on us.

Day 5

2011-10-22T13:33:00.004-05:00

We had a big fun day at Disneyland. Hans was doing well and hanging out with his daddy...with special drop ins from Roxie and Aimee, so I felt okay about heading out to Disneyland for the day. It was so fun to see Elle and Claire and Dean enjoying the park! Elle has just started riding the big rides, but as you can tell from her classic pic, above, that she finds them terrifying!

Hans did great yesterday and last night but this morning he has had a headache:( There are 600 reasons for headache, so I am not freaking out about it at this point. He did have to take a little dose of IV Morphine when the Oxy wasn't cutting it! I'm hoping that this just goes and doesn't come back. Last night of the ICE chemo tonight. We honestly don't know how many rounds we are doing of this chemo. We will see how he does and we will see if we can collect some stems cells. Our wonderful doc is setting us up with some home health to come for labs! When Hans heard that he started laughing out loud! Like he was getting away with something! I think he also actually shed a tiny tear. This is a kid that has spent too many days in the hosptial... by my count he's spent at least 45 out of the last 90 days inpatient:( He has had a bit of a rough time with that. He has been saying "I'm just tired of being here. I miss taking Honey on a walk."

We hope to get discharged tomorrow. BUT, we're well aware that pain, fever or some other negative effects could detain him. We are hoping that is NOT the case.

Day 3

2011-10-20T14:43:00.002-05:00

"Listen to the Mustn'ts,child,
Listen to the Don'ts
Listen to the Shouldn'ts
The Impossibles, the Won'ts
Listen to the Never Haves,
Then listen close to me --
Anything can happen, child,
Anything can be.."
- Shel Silverstein

I'm thankful to my parents not only for teaching me how to love unconditionally, but for keeping me in Shel Silverstein poems throughout my childhood. I'm sure these poems are partially responsible for parts of my personality and my outlook on life. This is a poem I am thinking of often and fondly as I try not to gaze too frequently at Hans' bulging lymph nodes. It appears the left side is improving, the right side, not so much. We will give it time.

Happy to say that last night Hans did even better than the night before. We were prepared for the number of potty wake-ups, and that was the big deal. Dr. Marachelian is giving Hans a whopping dose of decadron that not only covers his adrenal insufficiency but protects him against nausea. Hans says that it's smart to run it over night so he doesn't get sick during the day.

Our cup runneth over with visitors and love. Grandma Kathy flew home this week - thanks for coming! And Roxie has been here. I'm going to have to get her a cute driving cap and gloves for all her chauffeuring. She has been taking on the Popeye's and Taco Bell runs that are usually Aimee's domain, and she's fetching the grandmas to and from the airports of LA. Tonight we'll have my mom and Uncle Dean join us, and Kevin, Elle and Claire will come down from Bakersfield. It's hopping. We're planning for a field trip to Disneyland tomorrow, just not sure how many are going. Hans is okay with missing out on the outing. He's holding out for the Nick Hotel in Orlando. Do I have the only kid who could pass on Disney??

Day 2

2011-10-19T20:18:00.004-05:00

Hans did fine through the first night of his chemo. The ICE combo includes: Ifosfomide, Carboplatin, and Etoposide. One of these chemos can be harmful to the bladder, so we are making sure that Hans gets lots of fluids and that his urine isn't very concentrated. He is also getting a drug called Mesna around the clock to protect his bladder. There is a lot of action and excitement in here, the chemos each run one hour, they are followed by a flush and they have to check his vitals frequently, like five times in an hour during the Etoposide, all over the middle of the night. That kind of excitement. He didn't get sick, he actually said, "This magic water isn't so bad!" We'll take it one day at a time and be thankful that today is a good day. He had one problem - - wasting glucose in the urine, which bought him finger sticks all day long. The worst of it was all the interruptions and having to pee all the time throughout the night. His glucose has been fine ever since. He is also at risk for a little more hearing loss:( In optimistic news, our onc has suggested we try a second stem cell harvest after this round.

As for me, I am keenly aware that I have a glorious job in loving this boy. Ever since Hans was a new born baby, each time I hold him, I think 'this is what my arms are for.' I am glad I have these two arms. I am glad I have this boy to love. Kevin has the job of providing for him and spoiling him rotten which he does expertly. Elle has the job of treating like a completely normal brother... a sibling mix of teases, competition, play and love. We've got it pretty good.

ICE

2011-10-18T20:50:00.003-05:00

The news is not what we had hoped for. It seems Hans' little lymph nodes are just filled with Neuroblastoma. The right side seems to have stopped growing but the left side is getting bigger with disease.

Our oncologist got the official pathology today and worked up our options for us.
We have opted for a big guns chemo combo called ICE. ICE is a combo of three chemos that should hit Hans' system pretty hard and we hope the NB as well. He will start this chemo tonight.

It is a pretty somber night for me as I lay to rest my hopes of some treatable infection. We will switch gears and try to get a handle on this runaway train.
Oh, my baby. Please lift this little boy up in your prayers and lavish him with loving thoughts of successfully beating back the beast within him once again.

1254 pieces of fun

2011-10-16T19:13:00.002-05:00

We are whiling away the hours with a 1254 piece Millennium Falcon lego set. UNfortunately it only helped him while away 24 hrs - he's too fast! We all say he needs a sponsor to support his Lego habit. You can see a little bit of his nice soft hair here, and the rim of the bald spot left from his summer radiaition treatment. They said it should grow back in but that it will take months:(

Hans seems to have recovered from the biopsy just fine. He is NOT complaining of pain anywhere, anymore. (I had wondered if the procedure itself would relieve pressure.) We are stepping down the Oxycodone hoping to wean. We have to wait until Monday for biopsy results.

Hans is just now starting to get an appetite. He hasn't really eaten much since Wednesday night. Five of us (Me, Kev, Elle, G'ma Kathy and Aimee) have been here this weekend keeping him company. Grandma dec'd out his room for Halloween. Us girls stayed at the Ronald last night:)

Thanks for checking up on Hans. I will post tomorrow night or Tuesday morning. We hope to have both biopsy results and a treatment plan!

Lara

biopsy today

2011-10-14T13:12:00.007-05:00

I'm sorry to have kept you waiting...I just know how everyone worries
about these kids between posts. I know because I worry about all the
other kids between posts at these scary junctures! Hans has been on
iv antibiotics now almost 72 hours. He does seem to be getting a little
Better! He can move his head better and he is using the pain meds
and hot pad less frequently. Two of five viral tests have come back
negative. We are waiting on the rest. Hans will go into biopsy today.
The surgeon feels better about going in now that he has been on anti-
biotics for a few days. We hope to be able to identify whether it is
infection, nb or something else?? If it is nb we will have a sample
shipped to CHOP for Alk testing. The only new bad news is that Hans
did have one of his awful headaches this morning.,Gosh...poor kid:(
He also has to go NPO all day, as he is just an add on with no official
OR time slot of his own. I know there are 600 reasons for headaches so
I am doing my best to keep my fears at bay and remain my optimistic
Pollyana self about all this. Still hoping for the most treatable/resolvable
option to show up on that slide. All treatment decisions are pending
the biopsy findings and actually the treatments of those findings.
There is a big flow chart. Believe me. This kid will get some treatment
for the NB. And all sites are set for Monday. I'll post prior to Monday
if we get any conclusive results.
Meanwhile our little CA support system has sprung back into action.
Aimee is on food delivery and visiting, Claire and fam next door take in
Elle, and now G'ma Kathy has arrived for Elle duty. Kev and Elle and G'ma will
Join us here at CHLA soon, unless we can convince our team to try a weekend
discharge!. Roxie and my Mom and Uncle Dean come down next week... :)

Admitted once again

2011-10-11T19:15:00.002-05:00

The surgeon surprised us. We thought we'd be hearing yes/no to a possible biopsy and perhaps yes/no to a possible additional removal of affected lymph. BUT no, when Dr. Stein examined Hans he thought it was more suspicious for an infectious process than a tumor! I guess he thought it has just changed too quickly and is too painful and sensitive to be tumor. He mentioned a few tests he'd request. He and Dr. Marachelian consulted and he recommended we get admitted right away for IV antibiotics. Hans has rec'd the first dose of his thrice daily antibiotics. Infectious disease team has been summoned, but we've not seen them yet. How could this happen? Well, the PET and the CT showed something...the MIBG did not. Perhaps the something was an infection misinterpreted as tumor? Or, perhaps there is some necrotic tumor that has become infected???
I guess the plan is to see what happens with a day or two of antibiotics on board. He's not had fever and has had normal blood counts (still waiting on todays labs)... Dr. Marachelian said "I'm not ruling anything out!"
We shall see. I'm hoping it's the most treatable of the options. Elle freaks me out watching Myserty Diagnosis and I know there are some infections you wouldn't be wishing for.
Meanwhile, I'm glad I packed for days for a surgery consult!

Thanks for checking up on us. I'm hoping to be putting another entry into Hans' miracle chart.

Made it through the weekend at home

2011-10-10T11:54:00.003-05:00

Hans' neck has sure been bothering him. The lymph nodes are enlarged, and they do light up with NB on the PET and I think the CT. It is scary how things have changed just since Wednesday. He is now in pain, using a hot pack or ice pack and Oxycodone around the clock. He has somewhat limited mobility. He can hardly turn his head or lift his arm on the right side. By Friday night we were thinking we wouldn't last the weekend at home, but we did. We have a surgery consult tomorrow first thing in the morning. We are simply anxious that he get on the new plan, and we're hoping that we and the docs are led to the next perfect move for him. Our options remain - - nothing has been finalized.

If ever there was a time for prayer of the next perfect plan for him, this is it. To me, it seems like it's crucial to get this next choice right. Hans has always bounced back and responded before, but I find my self asking "How many miracles are we afforded?" Roxie says, "You can't count them, miracles are limitless!"

The rest of us are hanging in there. Elle is enjoying her soccer team, she's playing "recreational" this season so we actually get a bit of a break from the schedule, travel and the pressure of competitive soccer - it's more all about fun and exercise - which is good. She even got a hat trick (+1) last weekend - scoring FOUR goals! It was exciting:) She's getting adjusted to life at the new school just fine.
Kevin LOVES his job and his worklife here - it is truly living the good life to be a California Geologist! I wake up each day and I figure my first job is to do whatever it takes that day to beat the NB. The rest of life has to come second right now. The weather here is gorgeous so we've been enjoying our walks, bike rides and park time! I was obsessed this weekend with a few things, getting b'day cards, presents ordered and in the mail, getting Elle a winter coat, getting her Halloween costume ordered. I feel like, I'm home now. I can do this now... let's get it done. Even going into something like a surgery consult in the morning, you just don't know what will come up and whether you'll get "detained" and when you'll make it home. I could be home tomorrow night, or 17 nights for all I know! I'm packing for a few days;) We are so lucky to have the neighbors on constant call for our girl!

Thanks for checking up on us and thanks for your thoughts and prayers for our gorgeous boy. I'll keep you posted once we nail down a plan.

Lara
PS - Hans' 5 year anniversary of diagnosis is coming up. I plan to do a CNCF fundraising email/blogger/facebook campaign. I could use a boost, and seeing all the names that are rallied around Hans, while bringing in crucial research and education dollars, will surely help!

MIBG, MRI done, CT tomorrow

2011-10-05T21:59:00.002-05:00

We've been down in LA for two days. (Thanks for the hospitality Aimee!)
Hans has had an MRI, labs and an MIBG scan. We'll go back tomorrow for a CT scan too.

We've got some pretty good news. Stable bony disease in about three spots, spine, pelvis and head with great improvement to the head from the midsummer scans. We are concerned about some very bulgy lymph nodes at the neck that are suspicious for disease.

We'll be moving off Irinotecan/Temodor, not because Hans progressed on it, but because it wasn't doing enough.

We are debating our options. We are looking at some of the NANT trials and are strongly considering an antibody/immunotherapy.

We have about a week and a half to make our decision. Hans will possibly have a BIOPSY of the lymph nodes on Monday. We are considering some other options like radiating the spine. Unfortunately, you can't often use radiation while on a trial.
We're working on all of that.

Ultimately we are thankful that we didn't get bad news today. We are thankful that Hans still has "a lot" of options.

Hans is looking forward to some good family time. Grandma Kathy is coming down next week:)

Dark of the Moon

2011-09-30T09:44:00.004-05:00

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!

2011-09-25T22:38:00.008-05:00

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...

2011-09-22T23:14:00.003-05:00

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

2011-09-19T10:36:00.002-05:00

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...

2011-09-15T18:45:00.007-05:00

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

2011-09-08T23:40:00.002-05:00

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

2011-09-05T20:51:00.007-05:00

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.

Looking good

2011-08-31T12:23:00.003-05:00

They are still working on insurance, but the sweet charity funded our temodor for the rest of this week. Hoping they will figure it out before the next round. Of course I'd hate for that to determine future treatment options for Hans! It was sad to see how much of our docs and staff time has been spent on these insurance issues. Time better spent taking care of kiddos for sure!

We had a long day yesterday! We finally checked out of here in the evening after a great check up with the Neuro opthamologist. He pretty much unequivocally said Hans' double vision would go away. It may take time, but he is already making great improvements and all sings point to complete vision recovery.

We are getting chemotherapy in the day hospital at CHLA. It is an adjustment. The inpatient unit is brand spanking new. Hans can deal with it. However, the clinic side is rather ancient and Hans is having a little bit of an adjustment period. When he found out he would be getting chemotherapy here he literally said "that isn't gonna work for me!". I guess my bday present of an iPad doesn't seem so indulgent after all! Hans has had very very long days. The treatment bays are not all equipped with tvs, etc. I'm sure it'll all get assimilated into a new semi normal. Just trying to focus on the good news, that he's getting better!

Thanks to A for putting us up this week, and to Kevin and Elle for driving down after school and work to keep us company last night!

Round 2

2011-08-29T19:16:00.003-05:00

Hans at the day hospital today for more chemo and then radiation...

We have Irino/Temodor Day 1 under our belts! I'm pleased that the stresses we had today weren't over Hans' health! I'll share with you just for the heck of that it that we are having insurance issues:( Our insurance doesn't wanna pay for the Temodor! They are okay with the Irino, but they've denied the Temodor. I'm rather shocked that we've made it this far without finding ourselves in this situation! Our Nurse Practitioner was really working hard to fight it or fund it. Kevin and I told her - whatever happens, don't delay treatment, we'll just pay for the meds.

This med is pretty pricey - the five pills we need are $1100! Ha. So, the NP had a great idea, why don't we just fill it one day at a time.. So we paid for one pill today, we'll see if we can fight insurance tomorrow. The NP has a lovely go-to charity for just this situation, but the funding agent had gone home sick today. Just a day in the life....

In really nice good news, Hans is tolerating Day 1 of this round MUCH MUCH better! Thank goodness! He is a chatterbox:)

We had a pretty great b'day wknd. Our Santa Cruz friends Megan, Phil, and Desmond came down to not only help me celebrate my 40th birthday but volunteered to lay the floors in Elle's room to help out! How sweet is that??? Friends Stefano and Heidi and our new neighbors were able to join us for a fun night out. We felt it quite a little luxury to be at home, all weekend, with friendly and helpful assistants on our crazy project!

2nd post of day

2011-08-25T20:53:00.000-05:00

I just have to round this post out with another note. For about two hours today I was under the impression that Hans' MRI had shown "signs of a stroke". There had been some concern, because of the increased pressure and its proximity to the main vein draining from the brain. That was why they had ordered the MRV. But as soon as I hit send on my response email and the dozen of questions it contained, our Fellow immediately called me, apologizing for his Gross Type-o. He corrected himself. He meant to say that there was NO SIGN OF STROKE. In fact, they are canceling the orders for the MRV based on the favorable findings and evidence of blood flow on the MRI.

Just one more tally in the "weird things that happened this month" column. What a relief that the error hadn't been the opposite. Our Fellow, Dr. Tran, went on to say that not only were they impressed with the reduction in Quantity of Hans' tumor, but that it also appeared to be reduced a good deal Qualitatively in strength/intensity/aggressiveness. Dr. Marachelian emailed that they are very pleased with Hans now. We are too! I'm excited that the Radiation and Irino/Temodor will have one more opportunity to work together against Hans' tumor next week.

>50% Reduction

2011-08-25T14:47:00.002-05:00

Hey - we just got some news...

We just found out there is a greater than 50% reduction in the tumor burden on Hans' skull.

There is still disease present and signs of increased pressure on the brain, so our docs have agreed it does make sense for the radiation to continue. We get today off but will start back up tomorrow. Like I said, we have to be at CHLA all next week for Inrino/Temodor anyway.

I just found out we'll do a total of 8 more sessions for a total of 20 radiation sessions. Looks like we'll be in LA all next week, and then finish up Radiation the Tues/Weds after Labor Day.

They may want to do a blood flow study, or an MRV in addition. We are just hanging in there while we let the docs get down to the bottom of our boy! Just praying we are all lead to the most effective, least harmful treatments for him at this time! Thanks for your thoughts and prayers as well.

Another MRI today

2011-08-24T09:59:00.003-05:00

E's first day of the seventh grade. Hans has yet to even be registered for second!

I'll work on that in a week or two.

We are on Day 12 - what is scheduled to be our last day of Radiation today. Dr. Marachelian is concerned that Hans' vision hasn't totally corrected, and she suggests that we take another look at the MRI of the brain today, and decide if there is still room for improvement. If there is still is some tumor to work on, we may add additional days of radiation. It actually won't affect our schedule much because we were heading back in all next week for Irino/Temodor Round 2 anyway.

Hans and I are traveling back and forth each day this week. It actually isn't that bad, since the radiation appointments are so quick. We are keeping an eye on Hans' Potassium. Hans is walking around pretty slowly these days...I'm not sure what's up with that. But - he was up for a 3 mile bike ride after clinic on Monday:) We will stay in LA tonight, and we hope to learn of the Doc's new treatment plan quickly after the MRI...

Elle is doing pretty well. She started school Monday. We are incredibly lucky to have 3 7th grade girls in a row right here as our new next door neighbors! They've hit it off and E is of course making new friends at school as well. She will start soccer tonight. Hans has had fun using the girls as target practice with his squirt gun arsenal.

I'll update with the new MRI results and the new plan as soon as I know.

Sweet Lily

2011-08-21T17:49:00.002-05:00

Today I learned of the loss of dear sweet Lily. I'm still whirling from her story. Lily had a fabulous Kindergarten Year (Off Treatment! NED!) and turned up at CHOP in July to scan just a bit early b/c of a few suspicious symptoms. Hans and Lily were on the CT scanner on the SAME DAY back on July 19th. Her scans showed progressive disease. Lily rushed back home to celebrate her 6th birthday in NC. At one point, Lily and Hans were slated to start the ALK trial on the same day (Aug 3rd). We considered sharing a beach house on the shore and living it up. Well, both Lily and Hans' plans were to change. Lily started radiation. But then, everything happened very fast and it was time for her to go home.

Ashton, Lily's amazing mom, has truly blown my mind. She has cherished each moment with her daughter and looked for the silver lining. Lily didn't suffer and is now free of pain and free of cancer. Please add her and her sweet family to your prayers tonight.

Lara

PS - we are simply having a restful, productive weekend at home. Hans is okay. He is still seeing double and has had a couple of headaches, but no more back pain! He has burned through his birthday gift cards and has completed about 14 new Bionicles this weekend! He is thrilled. He is gonna need a bigger shelf;) Thank you to everyone who has sent cards, birthday cards and care packages. Soo sweet - we are feeling the love!

Oh, what a long strange trip its been

2011-08-17T21:10:00.007-05:00

Hans this evening enjoying a little RnR and Aimee's with pizza, wings and the remote!

Well we got some unexpected bad news today. I thought I had absorbed all the bad news that could possibly be dolled out, but no. It seems the pathologist, Dr. Shimada, was out of the country last week. Upon his return from Japan, he took one look at Hans' bone marrow biopsy and apparently saw the NB with his naked eye. Whoa, I wasn't prepared to walk into that information in today's office visit!

BUT to tell you the truth, I had been truly truly struggling with making any sense of Monday's MRI results until I got this piece of information. I hadn't wanted to post about them until I could meet with the Onc today. I guess the good news from the MRI: no big bulky disease apparent on the spinal column. This is what Dr. Marachelian had been looking for and we were all so happy to hear was not there. There were some "Bony Changes" in a couple of the vertebrae. That is actually consistent with the findings of the CT. This is where the waters get mucky and I'd like to go buy an "I hate MRIs" T-shirt. I feel like I'm pretty good at understanding MIBG results, but every time Hans has had an MRI result, I feel pretty desperately confused. The cause of "Bony Changes" could be: treated tumor, active tumor, bone marrow disease, or some other factor. Are you as confused as I am yet? Hans has never had disease there. Well, now that we know he has a little bone marrow disease, maybe it explains the "Bony Changes" on the MRI.

Today's office visit was unpleasant, but I don't want to paint all too negative a picture. I feel like Hans' scans make total sense to me now. I feel like we have a pretty clear sense of what we're up against. Yes, I had to hear the phrase "Rapid Progression" uttered about my boy today. BUT at the same time... we were working together to do an assessment of Hans' response to therapy. The Fellow in our office visit today literally used the word "AMAZING" to describe the complete disappearance of the lumpy NB across the top of his head. Dr. Marachelian was also very pleased to point out that Hans's lymph nodes shrunk back to normal and the little pea sized lump on the back of his skull is GONE. This is exciting because these areas are not being irradiated. The fact that they are gone is an indicator that Hans is systemically RESPONDING to the Irino/Temodor. For the time being, I'm hanging my hat on those last two facts. Oh, in addition, he had a robust CBC: HGB 12.1, ANC 6K, and Plts nearly 300!

At the end of a long strange month, it's a wine and chocolate dinner for me tonight. Hans is eating well on Pizza and Wings. We got sprung from the hospital yesterday. We are lounging around at Aimee's. She has been soo accommodating!!! Thanks, A! We will head home this weekend:) Kevin and Elle have come down as frequently as every other night and Kev is able to be in on most of the big office visits through speaker phone.

Thanks as usual for checking up on us and thanks for your thoughts and prayers for Hansie and his NB buddies especially Lily and Ava right now. xoxo

Waking Up

2011-08-13T10:10:00.003-05:00

I wanted to share that our big week of treatment is over. Hans received 5 days of radiation and 5 days of Irinotecan/Temodor. You can already SEE the results! The bump on the top of Hans' head is almost FLAT!

His vision is improved (his eyes are less crossed and he is tracking the doctor's finger tests better), but he still says he is seeing double.

Hans pretty much spent last week asleep and not eating at all. He would actually throw up several times a day, after each of his little meds. He already looks better, awake to watch Saturday morning cartoons at least, but the appetite may take a day or two to come back.

He has only had one complaint of a headache (no more back pain) all week, so we have been weaning him down and off the IV Methadone. He should be on an oral pain med by Sunday or Monday. I am hoping the back pain doesn't come back once he is off the Methadone. He is also being weaned off the Decadron and will go back to his Hydrocortisone tomorrow.

Hans has his MRI of the spine on Monday morning (with Sedation). We must be inpatient to get that slot! Sooo... we will have a mellow hospital weekend. Today and tomorrow will be his first two days that Hans won't have to have any treatment or tests in TEN STRAIGHT DAYS, so we will look forward to it, and hope to be fetching food requests far and wide as his appetite returns.

My mom is going to go ahead and go home for now. Her BFF Pat flew down to make the road trip back up with her. Thanks, Pat!

This week Elle got registered for school, and she is trying out with a couple of different soccer teams. Kevin was able to take three days off this week and has been knocking out our major DIY flooring project and spending time between CHLA and Bakersfield. This is a crazy time, for sure!!!

Mid-Week Update

2011-08-10T22:34:00.005-05:00

I'm sorry to have kept you waiting.

There is good news and bad news.

The good news:
Hans' bone marrows were negative for Neuroblastoma!
Hans' kidney function is normal!
Hans' CT scan was "unrembarkable" (Yay - no bulky disease!)
Hans has now had three days of radiation and chemotherapy (thank God we are giving this kid some treatment!!)
They are radiating two spots on his head and they are giving him IV Irinotecan and oral Temodor. His Radiation therapy is scheduled for 12 sessions m - f, which he can do on an inpatient or outpatient basis. His Irino/Temodor is on a 21 day cycle, he gets chemo the first 5 days and has 16 days off. At this point we haven't planned any farther out than the first cycle. We will make our additional plans shortly.

The bad news:
THe MIBG looked worse than the one we did in Philly on July 14th.
There are more spots on the head (consistent with MRI and what we anticipated to see).
The spot is still there on the hip - this is the new one that showed up in Philly on July 14th.
There are a couple of question mark spots on the spine.
We will do another MRI to confirm these or rule them out.
In all honesty, with Hans' pain, and with the rapid growth of what we can actually see on the skull, I was bracing for worse news on the MIBG.

Hans is having a rough week! He is just wiiiped out. The pain team actually switched him out to IV Methadone for the pain in his back:( With the combination of all three (methadone, radiation, and chemo) he is just sooo sleepy and has no appetite. He has had nothing to eat since Sunday night. He is being very closely monitored by the endocrine and pain teams. The good news: we are weaning him back to a lower dose of methadone and a lower dose of his super high dose steroid, decadron. We are all hopeful that we will have home/oral dosing in place for a possible weekend discharge.

Our Outlook: We are treating all of the NB with the combination of Radiation and the Chemotherapy.
We are optimistic that Hans will respond. In fact, I am putting all of my eggs in that basket. I don't have another basket.

Emotionally we are pretty fragile. This has all happened so fast and it's terrifying. I am sure I take out my emotions on the staff here. When something goes wrong, and for some crazy reason we have had at least a half dozen communication errors, I freak! I actually sat our attending and fellow down and gave them a little presentation on those errors. Since then, I have been treated like the Duchess of York! Oh, I also fired one resident from coming into contact with Hans. We are sort of fragile, in a war zone. A little PTSD going down. I'm trying to chill out!

But, I have to say that we have found in Dr. Marachelian everything we could need or want from a local oncologist. I am satisfied beyond my wildest expections. We are in communication with Dr. Maris and Mosse, and the two teams continue to communicate about their decisions for Hans.

Thank you for checking up on Hans and thanks for your thoughts and prayers! Please put all your eggs in one basket along with us.

Monday Can't Get Here Soon Enough

2011-08-07T11:54:00.003-05:00

We are looking forward to tomorrow because Hans will finally start on a therapy to treat this new NB! Tomorrow Hans will have a simulation for XRT (radiation), and he will begin both Radiation Therapy and Irinotecan/Temozolomide (chemotherapies). They are scheduled together because Irino/Temodor is a radiosensitizer and they work better in conjunction with radiation. It seems like so very many days have somehow passed us by since we first got news of progression back on July 14th. We can only charge full speed ahead and move forward from tomorrow.

What has been happening? Hans had an opthamology exam on Friday. They believe that the pressure from the mass on the skull is causing the double vision. They also believe that as soon as the mass is treated the pressure will be relieved and the symptoms should go away with no long term effects! We also had a consult with radiaiton. The Radiation Oncologist believes the mass should respond well to this therapy as "neurobalstoma usually does" to radiation.

Our oncologist consulted with Neurology and Neuro-opthamology and determined a lumbar puncture shouldn't be necessary at this time. A lumbar puncture would detect NB in the Cerebral Spinal Fluid (if I understand this correctly). At this point, that is not indicated, this does not appear to be a CNS (central Nervous System) replase. If it did, our path would likely take us to a well known treatment in NYC, but at this time we do not have to go down that road. Our oncologist also ultimately decided against an biopsy of the skull lesion. She felt that it is pretty clear that this is NB, and that he could face the risk of infection or complications as he is about to go into radiation of this area.

Yesterday he had a CT of the neck chest abdomen and pelvis. We do not yet have those results back. They are doing a full work up of Hans this week. Today he is doing a urine study to test his kidney function. Tomorrow he will do another Bone Marrow Biopsy and Aspiration. Tuesday/Wednedsay he will do another MIBG. We will be inpatient until at least Friday so that Hans can be monitored for his first five days of Radiation and Irinotecan/Temodor. I am not sure how many days total we will be here for radiaiton, but it could be anywhere for 10, to 12, to 20 on an out-patient basis after the first five days.

Hans has been having some back pain in the last 36 hours:( He is getting IV morphine to control this pain. There is a bump on his neck that is bothering him. We are hopeful that the CT, bone marrows, and MIBG won't bring us more bad news.

Hoping and praying for a complete response to these therapies for our beautiful boy!

MRI

2011-08-05T09:37:00.003-05:00

So we met with our onc on Wednesday. The mystery symptoms, specifically, those bumps reemerged on Hans' skull, and a vision problem of seeing double or a little bit crossed eye, persisted. The onc took a look at him and ordered a STAT CT of the head. Wednesday evening we were relieved with the news that the head CT was "relatively preliminarily okay". However, yesterday's MRI proved the CT very wrong. The bumps along the top of Hans' head are NB. What they suppose happened is that the skull lesion that has been under control on the Millennium for so long has grown up and out. There doesn't appear to be any brain involvement at all. There are a couple of other little spots indicated on the outside of the head as well. The lesion(s) that are there are outside the skull.

This is a really big, unfortunate deal. We are going to get started on radiating these spots as early as we can, today or Monday.
We are inpatient once again (our fourth inpatient stint in 5 weeks) to expedite some additional tests that need to happen including a neuro opthamology exam, possible biospy, radiation consult, possible lumbar puncture, CT of neck chest and abdomen, and another MIBG scan. We hope that all of these tests will be completed by Wednesday of next week. However, treatment can start as soon as possible since we are not enrolling on a study at this time. We will do radiation in combination with some chemotherapy such as Irinotecan/Temodor, (to which Hans has responded before). We'll find out shortly, but the radiation will likely be on an outpatient basis, approx 20 sessions, or four 5-day weeks here in LA.

This is awful, terrible news in comparison with our hopes to do something low dose and oral and from home for Hans now.
I am just hoping and praying that Hans will continue to be the great RESPONDER to therapy that he has really always been. We can get these lesions under control over the next 4 weeks, and eventually find that great, low dose therapy we can do from home... For now, we are glad to be here at our home hosptial, even if it is a 2 hour drive from home! My mom brought Elle back home early this week. They are here with us now - they are staying at the beautiful nearby Ronald McDonald house and Kevin is able to work and come and see us and be here for important meetings. We have our sweet friend Aimee who has proven to be at our disposal!

Thanks for your thoughts and prayers for our beautiful boy. We could really use them now.

Love, Lara

Long 5 Days

2011-07-31T22:22:00.005-05:00

Check out this thought provoking lil speech by an NB survivor, I just did and I think I needed to hear this tonight! Thanks, Tash!

We are having a calm and pleasant time at home since discharge, but a few of Hans' mystery symptoms are making these five days excruciating.

Right now, we are just hoping that they are able to book him for an MRI early this week. We need to get that done to inform Wednesday's meeting. You never know how a new hospital operates, but I had heard that one of three MRI machines is down and that appointments are scarce and hard to come by.

I wanted to put up a quick post to let you know that we are still at home and "okay", however loosely we are defining that these days. In truth we are pretty worried about our little guy and are anxious to have a plan to take care of him.

Thanks for checking up on us, Lara

Change of Plans...

2011-07-29T11:38:00.003-05:00

Hans is starting to perk up! Getting a few dark eyebrows too:)

So, yesterday was a rough day. We kept looking at Hans and having huge anxiety about his capability to enroll on a trial all the way across the country, that would require him to travel not once, but five times in the next four weeks, either that or stay for a month in Philly. Our doctors helped guide us and advise us that it's not in Hans' best interest to go that route at this time. Maybe the universe or the hand of God is leading Hans away from this option for a good reason. It's important for me to restate that it's not Hans disease burden that seems to be getting him down right now. It's some virus or infection that we've been unable to label. I keep repeating to myself Dr. Marachelian's proclamation after reviewing his scans..."He has a TINY amount of disease!"

For now, we are gonna stay put and get treated in our new home state. That'll be a change up. Hans is looking forward to it! We hope to get discharged from CHLA today. Hans has continued to have his headaches, but his Sodium came up, and he actually needed a bag of blood yesterday. The fluids has has received all week have likely diluted his red blood count...

We are going to go home and enjoy our weekend of just being at home! And, then, on Wednesday we'll come back to LA and finally knock out a treatment plan with Dr. Marachelian. I have also heard they might do an MRI of Hans' head, which I'm sure will make me quite nervous ! We have three top options already lined out, and we'll discuss those and more next week.

The upside of this inpatient stint was finding a gem of an Endocrinologist to follow Hans here. I couldn't be more thankful. She is adjusting Hans' two steroids and she believes it is possible to help Hans avoid getting sick this often by proper steroid replacement. Without any adrenal glands, he just gets beaten into the ground when he is sick. Our new Endocrinologist is already trying to think preventative dosing... it's a very good find for us here!!!

Thanks for your thoughts and prayers for Hans. He really looks okay this morning. He is up and eating a little, watching his shows, talking about what he hopes to have for lunch on his way home---chicken! I guess now we just pray that the best possible treatment plan will fall into place for our boy!

More... Fever! Headaches! Inpatient! Again!

2011-07-27T14:08:00.003-05:00

OH boy.... what a mystery this kid is this summer. We had a great day on Sunday AND THEN... Sunday night Hans started to have some pain in his HEAD. YIKES! There were bumps on the top of his head, causing him pain enough to take Tylenol w/ Codeine. Kevin and I were up for hours worrying about what that might mean. Monday Hans slept all day on and off while Keiran chilled and I made an attempt at picking up our place, doing laundry, etc etc. I was waiting all day long for the thumbs up from CHOP. AND THEN... at about 4:30 he told me to take his temperature... 102.6! OMG - did I fall apart. Here we had poor Keiran, we're waiting to hop on a plane to start a trial and now this.

So, off to CHLA. I left Keiran with Kevin in Bakersfield and hit the highway to LA. We spent all night in the ER, and then were discharged and released to Aimee's. Come morning he started brewing another 102.0 temp. At the same time I found out they were ready for us at CHOP. Kev had sent Keiran off on an early flight! Poor kiddo - he was sure a good sport about his shortened vacay.

Anyway, we reported to urgent care in the clinic where he continued to have fever and we were admitted. Mysteriously and wonderfully, those bumps on his HEAD went away and stopped hurting. Can you believe that???

Now the 'plan' is: Get Hans cleared for air travel, get to Philly on Sunday, RE SCAN (just found this out: need to re-test marrows and MIBG) and start the trial Tuesday.

Some of our sweet friends have asked us what to pray for. Oh, that is a good question! At some points during this month I've only been able to utter the little prayer "God help us." But I think that Hans is actually just fighting some virus or infection. He actually has a very light disease burden!!!! He just needs to get better and get on a treatment plan.
If you are moved to say a little prayer for Hans, please ask that he gets well enough to get home for a couple of days, stays healthy for a safe flight to Philly on Sunday, that his MIBG scan shows no progression from the 7/14 scan, and that if there really is NB in the marrow that they catch a sample of it so that we can test it for the ALK mutation, and ultimately, that he can start the ALK trial and that it starts working a little miracle soon.

Now, is that too much to ask for??? I absoluetly think not!

Hollywood and Highland

2011-07-24T22:08:00.003-05:00

Kevin had a good fast trip to Seattle for some important family time at his grandma's service. I was soooo glad that he and Elle were able to attend. He needed a lift home from the airport today, so after another trip to LAX, we squeezed in a fun stop at Hollywood and Highland, the Walk of Fame, and a nice lunch.

Hans is feeling pretty okay I think. I forgot to mention that we have our pal Keiran with us this week! This plan had long been in the works, to bring Keir back with us from this past Philly trip to keep Hans occupied while Elle was off at camp, we just bumped his trip back along with ours.

We are having fun. I just need to pace our day so that we don't try to do too much. A lot of downtime and relaxing time is pretty much always key for a happy healthy Hans. (Thanks, Aimee for the guided tour).

Going Back to Cali

2011-07-22T10:17:00.002-05:00

We learned yesterday that the new arm of this trial will not start today as hoped. There is basically a paperwork gridlock/logjam. Every i needs to be dotted and t needs to be crossed before all numbers are crunched and the new phase is approved. I guess some of the data still needs to be submitted before the data can be analyzed. That's what I get out of it, anyway.

We have been advised to catch a flight and have a nice long weekend at home. We hope to get a call Monday, telling us to come back out to start Wednesday. For the time being...I'm okay with it. As long as Hans starts a trial by Wednesday of next week, he won't need to be rescanned. If we go beyond that point we are looking at Plan B, C or D...

Hans is really going with the flow here. He is looking forward to getting back into town to see his dog, swim in his pool and hit our two favorite chicken restaurants...Popeye's and El Pollo Loco. We won't have Kevin til Sunday. He is flying out to Seattle today to attend his Grandma Lorraine's memorial. Elle gets out of camp today. My mom will pick her and Greta up from their special week at Camp Robbinswold on the Hood Canal. I went there as a girl too. It's gorgeous and beautiful! I can't wait to talk to her on the phone! I'm also ready to skip out on this East Coast heat wave. I'm sure it's gonna be hot in Bakersfield, though.

Thanks for checking up on us.

Love, Lara

Hans and the "ALK" Trial

2011-07-20T14:36:00.006-05:00

More news and a recap. I may have misled most of you with last night's post, although Hans' CT scan was clear, it doesn't negate or override the progression noted on the MIBG scan. Hans is still considered to have progressed on Millennium, so now is the time to Change Up. We got more wonderful news today that Hans' bone marrow sample was negative for NB. Whoa, we didn't see that coming, bone marrow biopsies can be hit or miss. We'll probably never know if we just missed sampling some tumor in there. We have consented to sign onto the ALK trial at CHOP.

Here's the scoop. There has been a lot of buzz and excitement about a trial widely known as the "ALK Trial" which takes advantage of a certain genetic mutation present in some Neuroblastomas. If the mutation is there, the drug tends to work well, if the genetic expression is not there, the drug has still been shown to work in a smaller percentage of patients. The drug can"block or inhibit two proteins called c-met and Alk. These proteins may be important in the growth of certain types of cancer cells. " (taken from the patient consent form)

To this point we haven't been able to determine if Hans has this genetic experssion. Why? First off, because when Hans was first diagnosed back in 2006, researchers weren't even yet aware of this genetic link. Our team stored samples of the tumor from the inital biopsy. However, those samples were routinely stored in paraffin wax at that time, rather than frozen. By Hans' 2009 relapse, Dr. Mosse here at CHOP had discovered this genetic link! At that time we had a tissue sample of Hans' initial biopsy sent to CHOP for testing. They were unable to use the sample to run the test due to the way it had been stored. Dr. Maris assured us not to get upset by this, he said that Neurobalstoma can actually change its genetic make up from inital diagnosis to relapse anyway. We wanted Hans' tumor tested at that second relapse, but Hans presented with only a bony lesion (the skull) and no marrow disease. It was impossible for us to get a biospy of his disease because it wouldn't have been safe for Hans.

Since we have a new positive spot on the MIBG scan, we made an effort to do a biopsy of that area (the right hip) for that testing. We found out just this afternoon that the bone marrow biopsy is negative. So, there is nothing to test.

Regardless, we are hopping on the trial in the hopes that he does have the expression, or that it will work for him even if he doesn't.

A new phase of this trial is just about to open. It was so successful and showed so few side effects that the investigators are opening up a new higher dosing level as we speak. Hans will be among the first kiddos to enroll at this new highest dose level. No side effects are really anticipated. Since it is so targeted, there should be no need for blood transfusion, no hair loss! Yay. I can't wait for those hairs to pop back up.

BUT the biggest problem is that they need us back at clinic in CHOP on each of the next four Wednesdays!!! I can't quite figure out how to wrap my mind around that one. With such a long cross country commute, we're considering staying out here and maybe only making a couple of trips back home, poor Kev:(

Anyone got a beach house in Jersey they can give up for a couple weeks;)

Unofficial Good News

2011-07-19T16:11:00.002-05:00

I have to update to share some unofficial good news! Both Dr. Maris and the attending here have eyeballed Hans' CT scan to say it looks good (aka clean, clear and free of NB or any other tumor or cancer!). Preliminary results of the bone marrow aspirate look good as well. The actual bone marrow biopsy will take a couple of days. Dr. Maris and I both suspect it will be positive on at least the right side. However, the onc who did the biopsy didn't see any "large clumps of tumor" when he spread it on the slide...

All good. All I can say is Hallelujah! Thanks for checking up on this little dude. Thanks for your calls texts emails and notes. I haven't been too chatty so sorry if I haven't shot a note back. I'm just using every drop of my energy and emotional reserves to do what we've gotta do here. This just sucks out of you about everything you've got. I was shaking like a leaf througout the CT scan was as nervous as I've ever been about anything. We meet with our team formally tomorrow. Still inpatient tonight as we continue to deal with low sodium,low potassium and headaches. Dr. Maris attributes Hans' current condition to a bug that has zapped him, and this is how Hans looks getting through it sans adrenal glands. I'll take that explanation to the bank.

CT Complete

2011-07-19T14:16:00.002-05:00

Hans and I had a long and arduous day today. The poor kid had to drink 720 ml (24.5 or so ounces) of Blue Kool Aid with IV contrast. This is bad enough when you're at your best. It is usually a pain that Hans gets through. But Hans is still fighting nausea, vomiting and headaches. He has needeed the IV morphine for the headaches three times since 4 am. He's been on an IV drip so he's had no thirst. Sooo... it took us SEVEN HOURS...from 6:30 am until 1:30 pm to get all of the drink in him. He did vomit once, but only lost about 30 mls. I was surprised they allowed him to take so long, and I was alost surprised they 'made' him drink all of it. I thought they'd give up on him in the normal 3 -4 hours and let him get by on 50% - 75% of the drink. Once you get through the contrast, the CT is very quick and Hans does it without sedation. Today he got a head, chest and abdominal CT.

We are waiting. We'll get all these results by tomorrow. I am very very nervous right now.

Thanks for your thoughts and prayers. I know everyone is worried about Hans right now.

Bone Marrows Complete

2011-07-18T21:32:00.005-05:00

Dawn took this picture Sunday Evening while she was hanging with Hans as I made a much needed and appreciated run for supplies at the Ronald.

Oh my Goodness what a day. I can tell by the site stats that everyone is worried about Hansie this week! Thanks for the love.

Today was one of those awful days you hope you'll block out eventually. Hans woke up and from the get go was just getting worse if not better. He had a debilitating headache (an underlying scary mystery of this hospital stay), and then he vomited his pain meds. We made it up to the Alex Scott (Alex's Lemonade Stand) Day Hospital for our procedure only to get turned away. Since Hans had vomited earlier, the Anesthesiologist suggested a new plan. He sent us back to our room. We were to have the bone marrows done in the Operating Room while intubated. I didn't handle that change up so gracefully. The last time Hans was intubated was for a pretty awful dental procedure. What was it...7 caps? The poor guy came out of there hurting and wincing and crying about his throat hurting for days.

Sooo....we sat in the room and waited. Hans could barely hold on through the time it took to get orders written for IV Morphine for the headache he eventually rated an 8 on the pain scale. Then he slept all day. We got called up to the OR at about 4pm. To my delight, the team decided they could try the procedure without the breathing tube, since so much time had passed since any vomiting, and since they'd have the support of the whole team and the whole floor if anything was to happen. Well, it worked. They went in from the front to get the bone marrows. They are actually hoping to go right through or into (I'm not really sure which) the new spot that is alighting on the MIBG scan. The good news here: they hope to test it for the ALK mutation. We've never been able to test Hans' tumor for it before.

Hans came out of everything okay. With the location of the spot on the MIBG scan, Kevin and I are bracing our selves for news that there is some marrow involvement on that right side.

Now the CT is tomorrow. Let's hope Hans'll drink the contrast even in this state he is in. Sweet boy!

Actually, seeing the improvement I saw this evening, I wouldn't be surprised if we get discharged tomorrow. We haven't had a true fever since Saturday.

Dawn was here to sit with me through the waiting and after. Hans was up and alert for three hours after the procedure. He was even eating and drinking and playing a little! No headaches! No vomiting! Is he about to turn a corner?

Thanks for checking up on us.

Update

2011-07-17T14:04:00.003-05:00

Hans had a superb birthday in New Jersey. Thank God for Dawn and her family. They picked us up from the Ronald McDonald house and delivered us to a perfect 8th Birthday Party at Chuck E Cheese. Goodie bags, check, gifts, check, guests, check gorgeous homebaked cake, check. I hadn't planned a thing. Hans went hard and had a perfect day. Thank you 8 times over to our angels of friends the Tennesons.

AND THEN... (why is there always an 'AND THEN''???) Hans spiked a fever of 101.7 just after midnight. Poor babe made it just through his birthday. Elle and Kev escorted us to the ER. We got admitted for fever plus vomiting plus headache plus low Sodium.... Bah. Kevin and Elle were back to the RMH to catch 3 hrs of sleep before jumping on their flights. Elle had a delightful layover in Phoenix where she was able to hook up with 2 aunts and a cousin and solve one of her wardrobe problems. Thanks Debi, Holly and KK for spoiling her! They have safely arrived by now. Hans and I are hunkering down on 3 South at CHOP. Hans has been very sleepy, he has eaten nothing by one Froot Loop and I believe he's been asleep for all but about 4 or 5 hours since Midnight Friday. I guess he needs his rest. I'm posting now because I want everyone out there to think nice positive good thoughts about him getting well enough to go ahead with the bone marrow aspiration and biopsy tomorrow. This is a sedation procedure, so they might have to cancel him if he doesn't turn a corner. Thanks. I just want him to be able to get in there and get those done. We hope to be on a new trial and a plane by the end of the week. THANKS.

Love, Lara

"Changing Things Up"

2011-07-14T20:47:00.006-05:00

Well, shoot. We did not get the news here in Philly we've come to expect so consistently. The unfortunate news is that Hans has a new spot of NB. There is a new small bright spot on the MIBG on Hans' right hip. The spot on the skull is stable, but the new spot puts us into the category "Progressing". What does this mean? Progression means that the Millennium has stopped to control Hans' NB. I guess you could say Hans' tumor has built a resistance to the Millennium, so it's time to move on. It is never fun to jump ship and hop on a new trial before you have to, but honestly, we would have had to change up his therapy in December anyway (there is a 2 yr limit on this trial). This just forces our hand to make the change about 5 months earlier...

So here we are. Hans and I will be detained in Philly all next week.

Kev and Elle will stay long enough to celebrate Hans' birthday tomorrow and they will catch separate flights on Saturday. Elle has a Sea Kayaking Girl Scout Camp to get to in Washington State with her first ever BFF, Greta! Kev has to go back to the grind of the flooring installation in our new house and his job...

Hans will turn 8 in his adopted 'hood of Philadelphia. I can't help but relfect on my little All American Boy! He has visited many different parts of the country. He thoroughly enjoyed our trip to Hawaii and frequently talks about how he wants to go back. He has the frequent flyer miles of many business travelers. He has received treatment in 5 states, and been consulted on by docs in several other states. He has swam in two oceans, visited one rain forest, admired both vlocanoes and the Great Lakes, and road tripped up and down the entire West Coast. He knows his country pretty well! We are all so proud of how he finds joys in the everyday pleasures of childhood and is never down about his challenges. He is developing his little sense of humor and cracks us up all the time.

We are staying next week to do a full workup of scans (BoneMarrows, CT). We will meet with the docs on Wednesday and hopefully enroll on a new trial by Thursday. We've still got our eye on the ALK Inhibitor trial. This is the trial we were considering back in 12/09 when we got on the Millennium trial. There are a couple other options, so I'll keep you posted. Our goal remains the same: to rid his body of his disease burden and maintain his quality of life while at the same time minimizing toxicities to protect organ and other important functions.

In the meantime, it's amazing that we have the friends we've got to scoop us up when we need them. Before we had even confirmed the new spot. I had a text from our friend Dawn assuring me that she's got Hans' b'day covered tomorrow.
Thanks for any thoughts, prayers, or good vibes you can offer us at this time of transition. We are still only hoping for the best of outcomes for our boy.

Where in the world is Hans Weberling?

2011-07-13T20:39:00.003-05:00

Elle and Hans in their matching Sponge Bob PJs tonight.

We were home for one full day, and then hopped a red-eye to Philly. We are trying to catch up on sleep at the Sheraton. All four of us came out for this trip! Hans got the injection, labs and even the office visit done today. Tomorrow is going to be the MIBG scan and results. Then we'll fly back to CA.

We are a little exhausted, but hopefully we'll be in good shape to celebrate Hans' birthday on Friday!

two pics

2011-07-11T15:13:00.004-05:00

Summer, 2010.

Here are just two pics I found of my kids with their Great Grandpa, Hugh Dean Daniels.

Need to find some to post of Grandma Lorraine now!

2011-07-05T23:59:00.002-05:00

Shucks - tried to upload a pic from my new phone, but it doesn't wanna work...

Sorry for the lack in updates. The good news: Hans has been great. He had two nights of mystery stomach and arm pain, and we almost went to the ER, but it resolved before we got checked in. We drove to Seattle in two days time. I was thrilled to be able to drive as an alternative to be always flying. It is two eight hour days with an over night in Yreka, CA. We managed to get Medco to approve home based Neulasta, and get it rerouted to my mom's address! We had labs in Seattle on Wednesday and they looked great. HGB a robust 14 from that last transfusion, ANC 18K from Neulasta, and plts okay at 119.

My grandpa was a really great guy. You could really learn all the lessons you ever needed to about life from him. By example, he taught three generations to: Work hard, put away for a rainy day, take care of your family...in sickness and in health, feed them well, go to church, support worthy causes, grow a garden, keep it simple, recycle, and sit back and enjoy the ball game! I am touched that my family has selected the CNCF for memorial contributions in his name. Both of my kids had a special relationship with him and we are all so blessed to have had him in our lives as long as we have. The truth is, everyone who knew him had a special relationship with him.

It was an emotional week in Seattle, but we had some nice times too. Hans bonded with everyone by "training" them all on how to play Angry Birds. I think he provided the 'free training session' to at least a dozen family members on this visit! We celebrated Hans' birthday, along with our little cousin Erin's bday (they are a week apart). We saw fireworks in Edmonds. We passed some time playing croquet in the yard, having picnics, going to dinner, and taking some nice walks at Green Lake and down at Edmonds beach... not bad! We were able to get together with Grandpa Oscar, Grandma Kathy and Grandpa Dale, uncle Quinn. I also squeezed in one night of a girls night out. Thanks for hooking up with me...Jana and Sunny!

We are waking up here in Yreka, CA... about to hit the road to reunite with Kev who has really had his hands full holding down the fort back at the house... all our animals, the DIY projects and unpacking are surely more than enough to deal with!

Lara

Home and off again...

2011-06-30T10:23:00.003-05:00

Here we are - we got home late Tuesday night. Hans is okay but we are keeping a close eye on him.

However, I came home to some pretty sad news... My grandpa passed away Tuesday night.

I'm going to try to make my way up to Seattle with the kids to get to his memorial and for a quick family visit. Kevin has gotta stay here and work.

Lara

Need Blood

2011-06-28T12:39:00.006-05:00

We are doing better now. Hans has been inpatient on the 5th floor here two nights. We are all but discharged, Hans just happens to need a bag of blood before we hit the door. I believe it is all of Hans' blood draws and fluids that have drained and diluted his Hemoglobin to the point of needing a transfusion right now. He is in the process of getting a type and cross and then he'll get going on his premeds... Benadryl, Hydrocortisone and Tylenol, and we'll cross our fingers that he doesn't have a reaction this time.

I'm the sort of person that never likes to say "I'm bored" but I find myself wanting to say that a few times a day while inpatient. Luckily there is a big grocery store two buildings away from this hospital. That is practically a miracle. Not all hospitals are that way! The kids are entertaining themselves reading magazines, coloring, playing board games and taking cute pics on Kevin's photobooth application of his Mac. Poor Kev had to go work and left us his laptop and his car. We are fortunate to have Aimee and Stefano and Heidi checking up on us and there to help out in both towns.

I am sitting here thinking I need to scale back my move-in goals. Maybe five boxes a day would be more reasonable. I need to repeat my mantra "Hans, you are my first priority". That's what I had to keep reminding myself in the chaos of getting our old house ready to sell.

We had planned to really work around the house this weekend and get some stuff done. I had signed Hans up for "stroke development" swim lessons that were to start yesterday. Ah well. Not to be. We are merely grateful that we are not inpatient for more serious reasons.

oh what a night

2011-06-26T22:16:00.002-05:00

Oh Boy,

Here I update from the ER of CHLA. Not where ya wanna be, but what are ya gonna do? The good news is: Hans seems to be fine. He surprised us all with a little bout of chills and fever about 24 hours ago. Since then we've been on a tour d'ER's of California. We started out local with a visit to Bakersfield Memorial last night. We did the usual and went home for a 3 hour nap to be woken up by a little peek a boo fever of 103.4. We didn't want to play around, so drove straight in to LA. This can be as fast as an hour and a half in no traffic. We've spent the entire day here and have just been informed that we have a room on the fourth floor with our name on it. Fever has never been an issue again, but fatigue and then a low blood sugar and a low BP have been. Yikes. We are being held for now as the new Endocrine and Hem-Onc teams get to know our boy. They are watching his BP, sugars and the fever.

We are looking forward to getting a room with a view that's a little more cushy. The ER is not really built for an all day stay. But, we're just glad that fever didn't go out of control.

Must say thanks to Aimee who has come to hang with us, and even shuttle Kevin back home and bring me back the car since we only drove one down this morning. Sheesh, what a pal.

Thanks for checking up on us. Hopefully he'll be all patched up soon. They have decided to hold the MLN for tonight as Hans gains some strength.

Starting Round 25

2011-06-24T12:26:00.004-05:00

Hans likes to try to jump right on the huge beach ball.

We got the all clear to start Round 25 of MLN 8237 tonight. We met our new home team and I think it is going to go really well. Dr. Marachelian is actually the head of the New Advances in Neuroblastoma Therapies (NANT - a primary NB Consortium) so Hans is extremely fortunate to have such brainpower on his side on both coasts. We liked the team and got some referrals to figure out our local care. It's kind of exciting to explore a new city. I haven't spent much time in LA at all and the hospital is right on Sunset Boulevard, so there is a lot to check out. We tried one place, El Chavo, for chips n salsa, but according to Hans we'll have to keep looking. Not a bad job - finding the perfect Mexican joint in LA.

I'm such a counter. 102 boxes to go. My goal is to do 10 boxes a day for the next 10 days... We shall see...

In sad news, Kevin's grandma Lorraine Weberling passed away early this week. She was a sweet, sweet lady. She'd just about kiss your face off when she saw you. I keep remembering that Kevin stayed with his grandparents while working in the cherry orchards in high school and college in Mattawa, WA. He'd have to be up and in the orchard by 5am. His grandma would wake up every morning to fix him a workman's breakfast of sausage, eggs, potatoes and toast at 4:30 am! She was that kind of lady. We hope that Kevin will be able to join his dad's side of the family for a small memorial next week. That's one of the blessings of being on this Coast; to be able to get back home when needed.

Off to Meet the New Doctor

2011-06-22T10:56:00.006-05:00

Hans and Honey taking a dip last night. (Honey will get in if we encourage her, but she prefers to sunbathe.)

We've been in CA now two weeks and our house still looks like a bomb went off! Got our stuff Saturday, and did pretty good about getting things put away for the first couple of days. Now it seems like what's left is mostly weird stuff that we probably should give away anyway... I still have a slightly compulsive side, so I did count the boxes we have left to sort through...110! UGH. After finding places to recycle packing paper, making several runs and finding a Goodwill and doing a couple of other errands yesterday... I only got to 5 boxes. It's a mess, but some day it'll come together. Through Craigslist I have a couple ladies who come and pick up my boxes as I empty them.

I think all the chaos caused Hans' labs to take a little hit. It wasn't until Monday that I got lab results from Thursday's lab draw. He'd had a HGB of 8.2 and had been having some headaches over the weekend (one sign of a low Hemoglobin). I went ahead and brought him in again Monday to make sure he was okay. They all bounced back nicely to the point that he should make counts in LA today...

We are still staying in the organized comfort of heidi and Stefano's for just another night or two (trying to ease the transition for Hans). We got Hans all signed up for swim lessons to start next week and last night we were happy to meet a few of the kids on our block - the same age as our kids!

We're off on a new adventure to find our new hospital and meet the new Doctor. We'll have some fun too, hooking up with our friend Aimee for some dinner and fun after.

plts and labs

2011-06-17T20:59:00.004-05:00

So, we've had a slightly more "medical" intro to Bakersfield than we would have liked. I won the "First Trip to the ER" award for a mysterious insect bite that became infected and is starting to disappear with an antibiotic cocktail. I'm okay now, it was just a little sketchy and itchy for a while there. Hans got introduced to a new lab here. He was on a platelet watch with Platelets of 22 on Tuesday, but they bounced back up to 40 by Thursday. We go into LA on Wednesday to meet our new 'local' Pediatric Oncologist, Dr. Marachelian, at CHLA to see if we get checked out for Round 25 of MLN8237...

The house project is coming along, most of our appliances are now in and running, most of the inside is cleaned up, and the carpet is ALMOST all ripped up. We'll be trying to beat the clock now - - we just found out the truck gets here with all of our stuff at 8 am.

I hope to post a pic or two tomorrow or Sunday.

We've arrived...

2011-06-11T16:54:00.004-05:00

We are here! Hans is doing okay here about 1/2 way through this cycle, but he is definitely having some mouthsores.

Our house is a bit of a wreck, carpets ripped out - painters painting. I've been cleaning, Kevin has been ripping out carpets, ordering stuff, etc. It's a big adventure/project for sure. The place is still pretty much uninhabitable right now. The kids are helping out and taking swim breaks in our cool pool. Blake arrived with our pets late Thursday night and is already off. Our movers won't be here for another week or so with all of our stuff.

In the meantime, our friends Stefano and Heidi are putting us up! Thanks guys! We've know these guys since Kev and Stefano were in grad school together in Santa Cruz. Stefano and Kev both started working at Exxon in Houston. Stefano has been out here with Heidi for a few years. They are only a mile or so away, and ultimately hospitable, so it works out great!

3 One-Way Tickets to California

2011-06-06T11:25:00.005-05:00

It's Day 7 and Hans has done okay with Round 24. He has complained a little bit of eye pain/headache but no mouth sores. The "white meds" make him loopy. The other night we were playing Wii and he was really laughing and cracking us all up. Kev asked him how the white meds make him feel, he said, "I feel like paper." We try to give them in the evening so that all he really has to do is hang out while he's on them.

We have about 7 guys in our house packing us up today. Pack today, load tomorrow, fly out Wednesday. It is such a luxury to have the movers! Wow, that's one of the greatest things about getting relocated for a job! Kevin forwarded us our plane tickets this week. 3 one-way tickets to California!

We hired Blake, a 20-something neighbor/friend to drive out our dog, two cats and some houseplants in the CR-V. I didn't think the kids and I would enjoy that trip too much! Kevin brought one cat on the plane yesterday. He was not too thrilled with that. The worst part was getting the cat out of the crate to get through security. Even though Black had 2 sedatives, Kevin still got scratched up. Oy!

That's the update. They load up our beds tomorrow, so we'll be crashing at our friends Carmen and Jim's. We go in for our last clinic visit/Neulasta injection on Wednesday and fly out Wednesday night. Since our car leaves Tuesday, our friend/neighbor Alana will be chauffeuring us on Weds! We certainly appreciate every one's kindness and generosity.

Lara

Started Cycle 24

2011-06-01T09:33:00.004-05:00

Here's Hans' jump off the roof at the Pier at our friend Dave and Sheri's Bay House. (Thanks for the super weekend, guys!)

Whew - we've had a lot of fun since my last post! I was incredibly, pleasantly surprised by how well Hans did over the weekend. For so long now since treatment began, he has kind of stayed safely in a little bubble of comfort. BUT, lately, we are noticing he's willing to try new things and get out there a little more - which is much more fun. Hans jumped off the roof on the pier here within about 5 minutes of our arrival! He's saving the higher roof for our next visit. Hans also enjoyed the speed boat - inner tubing, and even gave knee boarding one shot. Elle and Caley are too cute together - they've been buds since YMCA preK soccer. Hans made friends with the two other boys staying there - Michael had no problem jumping off the high roof! FUN.

Hans also made it through a long, fun dinner at Benihanas with the Girl Scouts - he was the only little dude there with a lot of big girls. With Kevin out of town, he's been dragged around to more of these kinds of events than he would usually have to! But, maybe it's all helping make him just a little more flexible.

Our theme has been "let the good times roll" as we continue to have swim dates sleepovers and get togethers...trying to have that one last visit with each of our great friends!

Our last day of school is tomorrow and we have 7 more nights in TX. Movers come Sunday. Kevin is a busy guy. Our new place needed paint, appliances and flooring - so he is getting all of that going.

Hans' meds arrived yesterday and we just got back from labs at Dr. Irani's office today. He'll go in for Neulasta with at TCH Tuesday. That's the scoop...