Holding off on Stem Cell Infusion This Week...

We went down to LA to meet with our doctor today. Hans got labs drawn there and it was good and bad news. Plts were in the worst shape at 33, ANC a strong 2500 and Hgb 10.7. We decided we'd wait about a week or so and see if the ANC starts to come down before we commit to infusing the precious stem cells.

A LOT went into this decision. We left it up to our doc. This is what we are thinking:
We will scan the week of Valentines Day (I think), if scans are as good or better than last time we will shoot for another MIBG therapy in late Feb/early March.
A strong ANC is a requirement for this MIBG, rather than high platelets.
The thinking is, if the ANC doesn't fall too low, we can conserve a bag of stem cells for possible later use. However, if scans don't look good, we'll likely need to use the stem cells in order to make counts for another therapy...

We'll figure it out. I'm not explaining all the factors here, but I do feel good about our decision. I was nervous about it, but once we asked our doc all of our questions, we felt comfortable letting the chips fall where they may.

Hans' NB tissue sample will soon be on its way to CHOP finally for ALK testing! Thank Goodness. This was the tissue sample they collected from the lymph node in the neck back in Mid-October. I kind of thought this issue was dead in the water. But we should know the results in a matter of weeks or more. This test has been a looong time coming! What a relief.

We have been enjoying "Juneuary". I have to apologize to our northern friends for rubbing it in, but it has been pretty gorgeous and sunny down here. We're happy to be able to get out and enjoy it. We celebrated Honey's 4th birthday at the park this weekend. She has been such a good dog for us. I know my kids are lucky to have one dog and three cats to dote upon. Our place is a bit of a mess with all the hair and kitty litter, etc etc, and it gets kind of crazy around here, but ultimately I'm glad our kids are up to their ankles in canine and feline luv! They all have really sweet friendship with each other (and they are insanely protective and demonstrative about their love of Hans).

This morning, when we drove to LA, we thought it was highly likely that Hans would get his stem cells. This is just such a wild ride, you just never really know what's coming.

Bill Crews Remission Run Tomorrow

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

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

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

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

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

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

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

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

"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

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

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

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

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!