"Kids do heroic things when they have heroic things to do." Jeff Leland, Sparrow Clubs

My post tonight will give you a rudimentary snapshot of average values in a CBC - Complete Blood Count (at Tom's request). There are three I always report back about Hans. We got yesterday's labs back and Hans' WBC skyrocketed to 17! Holy cow! That's high. It can be attributed to the stem cell infusion he had on the 6th, and, perhaps even the Neulasta shot he got to boost his white blood count on the 9th. We can also point the finger at this high WBC for Hans' pain. The pain subsided on Saturday and Sunday and popped up again Monday and today. The pain is now a little higher up his back. The stem cells are baby blood cells that find their home in the Bone Marrow and set up shop as a blood factory. When the cells "engraft" and start knocking out all kinds of blood cells, it can be painful to the host (Hans). He's hanging in there. He didn't cancel school yesterday or today, but he did ask to cancel. I guess hesitated just long enough for him to decide he could do it. Lil trooper. Meanwhile, His HGB dropped to 8.3 and we are now expecting a transfusion later in the week... Platelets rallied to 53, but the platelet transfusion he got on Friday is likely why they are that high.

WBC (Child) 5.0 – 10.0 White Blood Cells (fights off germs)
Hgb (child) 10 - 14 Hemoglobin - Red Blood Cells Delivers oxygen to body, we transfuse under 8.0
Plts (child) 150 - 450 Platelets - Clots the blood to prevent bleeding/bruising, we transfuse close to 0~
Hct (Child) 30 - 42% Hematocrit - another measure of red blood cells, I don't tend to follow this one, I follow HGB because that's what we learned to track at TCH.

We've had some excitment around here! Kevin returned from AZ and we had him here for just two nights before work redirected him to Sacramento to check on his well and meet with the team. Ah man.

We got a wonderful treat of a visit with my Aunt Pati and her bf Tom yesterday. They were doing a few days in San Francisco and the wine country and they decided to make a rather heroic effort to come and see US:) They did get to see Kevin yesterday, and they got to accompany Hans on his adventure to Elle's Jr. High school, and were off!

I have to THANK Mrs. Hodges' class. This group of kids did an amazing thing for Hans yesterday! They pooled their money and went shopping for Hans off his Amazon.com wishlist!!! Soo sweet. Mrs. Hodges heard what was up with Hans and thought that her class/Elle's Language arts class would like to reach out to him. There is no better way to reach out to some kids than through Star Wars. We are continually touched by the kindness of others! The kids were soooo sweet. They treated Hans like a little rock star. He got a guided tour of the Junior High. What surprised me was that seventh grade boys were just as sweet (or even sweeter) to Hans than seventh grade girls:) Hans could have no better escort than his lovely sister Elle. She got to shine in her role as ambassador between Hans and the Junior High.

Ups and Downs...

Hans, Elle and a bunch of the neighbor girls had a big waterballoon fight last week or so, this was one of the only pics I caught.

Just sharing a shot of some of Hans and my favorite spring flowers. I am loving these big poppies that keep on blooming:)
So over the past 48 hours we've had some good news and some bad news. I am only hoping they come from the same root cause. Thursday morning Hans woke up at 5 am wincing in back pain. I dosed him with Oxycodone, gave him a hot bath and a heat pack. He's been dealing with the pain ever since. I quickly came to realize that it could be from the stem cell infusion! I'm very relieved that our doctor backed up this theory as the most likely cause of this new back pain. Hans' labs yesterday supported the theory. ANC shot up from 0.00 to 800! The white blood cells are the first cell line to come in, especially with the boost of the Neulasta shot last Friday. But - the platelets dropped to 3 and HGB dropped further to 9.3. We decided to go ahead and bring him in today for Platelets. The Day Hosptial was booked so we got our bag of platelets in the waiting room. The PA checked out his back, but she didn't say a peep about it. She seemed to endorse the theory of back pain so much so that she didn't seem to think it needed to be checked out. I figured why not have someone look at it since we were down there?? I am just plain wiped out after getting home tonight. I am not sure why - but I usually do get pretty wiped out by driving in to do much of anything at CHLA. Picked up a pizza and hopped right into jammies when we got home at 6:30! I guess I've done as much as I needed to do today.

0.00

"Just because we were licked a hundred years before we ever started, doesn't mean we shouldn't try to win." Atticus Finch
Hans and I listened to To Kill a Mockingbird on audiobook (as read by Sissy Spacek) en route to SF. This was my favorite quote that popped out. It obviously applies to Hans' crazy journey! I've meant to post it ever since I heard it on the drive up.

We are still scraping the bottom of the barrel on counts. ANC is still 0.00:( Plts dropped back to 15 and HGB is hanging in there at 11. We are pretty much sequestered here. Good thing Hans is such a backyard boy. We put in a little salsa garden for Hans... Tomoatoes, peppers, jalapenos, onions, etc. We just need to find some garlic starts. We'll see how it grows. 50% of the country's produce comes from right here in the San Joaquin Valley - we ought to be able to produce a bushel or two:) Hans will stay out of school until that ANC comes up to about 500 or more. His teachers are coming to us each day so he continues to make progress. Our NP reminded me that stem cells aren't supposed to start kicking in until Day 9 - 11, which is actually Today-Friday. Hopefully we'll start seeing him turn around by Monday's labs.

I completely forgot to mention our little thrill last week. My friend Diana from grad school called in a favor and got us a celeb hook up! I mentioned on here that Finding Bigfoot is one of Hans' new shows. Well, Diana is neighbors with FB's Ranae Holland. Diana told Ranae about Hans and she asked for our number. She called right away to check on Hans! It was super sweet! She's going to send a postcard signed by Bobo and all of the guys on the show. I'll have to find a little frame for it...pretty cool stuff! Thanks Diana! I love it when people are moved to use their celebrity for the little dudes.

While Hans is here in relative isolation, life goes on. Elle was all signed up to do track, and had started try outs, but then was pulled in another direction. She started training with a new soccer team for a summer tournament! Yay for spring soccer. This team will travel to Tennessee in the summer to play for one hot, humid week. It'll be a pretty excellent adventure for our girl. She was willing to do track, but soccer trumps track in her book, especially the "Nationals" team!

I am trying to commit to getting up early and going out for a walk/jog each day. It's the one way I can guarantee getting my exercise in! Of course, just when you start a habit like that - Daylight Saving Time rolls around an throws a ring in the works.

Kevin is on dude spring break! He took off with his pal Sam to Scottsdale for Spring Training baseball. They're staying with his Aunt Holly and Uncle Michael, seeing his grandma, golfing, etc! He would have waited to go when we could all join him, but the games would be over when our kids get break in 3 weeks, and Sam is here in CA from Alaska for a conference, so he could only extend his stay for a couple days. I'm glad Kev is getting in some fun family and guy time! We might just have to go back for another visit for family spring break.

That's our scoop for right now. Thanks Pat K! Kendo Cole has finally made his way into Hans' hands! It was a long journey for that Ninjago!

Grillmaster

Hans has his own grill!

The news is Hans' counts are okay - still a very low WBC and no ANC. This means home time and outdoor time for Hans, which is right up his alley. He is a little homebody! We had a bit of a scare yesterday. Hans' Potassium had been coming back LOW and he'd had some diarrhea and even a couple of headaches:( Yesterday he was getting into worse shape. He puked a little bit. I was worried that he was possibly getting dehydrated - he just didn't look right. With his adrenal insufficiency and his inability to keep his meds down, we took him into the ER. It was a long night, but he wound up completely surprising us and bouncing back. His Potassium had somehow completeley leveled out. It had been 2.9 Tuesday, 3.0 Thursday (low normal is around 3.5) but then it bounced UP to 3.9 by Friday night in the ER!!!??? I'll never figure that one out, but we are all extremeley pleased to be together at home this weekend rather than inpatient!!!

HGB has stayed up there at 11, and platelets were 95 Thurs, but dropped down to 54 Friday. The MIBG is still hitting him, and the stem cells have yet to kick in.

His appetite is starting to come back. Hans had lost as much as 5 pounds. Kevin and he went grill shopping the other day. Now the two guys can actually tandem grill! It's a little crazy, I know - but Hans is extremely careful! Not once, but twice last week Hans helped me out in the kitchen. He took over turkey burgers one night and chicken sausages the next. He and Kevin are grilling up marinated chicken hindquarters from the carniceria nearly every day, which seems to be Hans' staple food these days.

Dr. Marachelian is working on our next step. I'm going to wait and hold off until I hear if she's got FDA approval before I share what she's trying to do, I just don't want to jinx anything.

MORE love has been pouring in! Thanks for the cards that DID get rerouted from the hospital: aunties PL and Susy, thanks McC's, thanks Chaska, MN, and Thanks Grandpa Oscar - Hans will have fun Transformer Shopping!!! I think he's pretty much all toy'd up until maybe his 9th birthday, I'm sure the Easter Bunny will hop by with something cool. Thanks again!!!

That's the quick weekend update.

Stem Cells on Board

Hans is here at CHLA, where we were happily reunited with our Home Team of Dr. Marachelian and our cool NP, Deb!
We got stem cells. This is how it works, draw labs (bad news - plts less than 5, HGB 7.2, and NO ANC). Can we say saved by the stem cells?!? This is on cue, just in the nick of time!!! We then got 2 hrs of prehydration and premedications for possible reactions including Benadryl, Tylenol and Hydrocortisone. Then, the two bags of stem cells infused in less than thirty minutes. We still have two or three little bags of stem cells in the bank. Enough for one more rescue, which we may even use in a couple of weeks if this dose doesn't do the trick. We are currently getting platelets and will get packed red blood cells next! Great timing - we would have had to have been here for four hours of post hydration after stem cells anyway. So perfect. I try to remember to THANK blood donors out there in the world! I know not all of us CAN donate...but I would like to thank those that can and do. It is a life saving gift that cannot otherwise be replicated.

We got some ALK news today. Hans is NEGATIVE for the ALK expression. ALK is a gene mutation or expression present in some small percentage of NB tumors. To have learned that Hans is negative for this expression informs us that the ALK-inhibitor is not likely to be a good clinical trial for Hans to attempt. I am actually not at all surprised. We never had the opportunity to test his tumor for this expression until the lymph nodes popped up with disease this past Fall. In the past, we almost enrolled him on the ALK inhibitor trial on two different occasions. Now, it seems like a great cosmic blessing to me that the trials were closed to us back in December of 2009, and in July of 2011. Who knows what course Hans' disease might have taken had we put him on that trial on either of those occasions. Back in 12/09 we walked into our OV with Dr. Maris planning to enroll him on the ALK trial on a Wednesday. The trial was mysteriously closed that day. We wound up on the MLN-8237 trial for 18 months/25 rounds of good quality of life and stable disease. I remember Dr. Maris saying, as he told us the ALK Trial was closed that day, "Sometimes things like this happen for a reason." That comment really struck me. That's what mommies say! To hear it from one of NB's most prominent research/practioners blew me away.
Then, in July of 2011 Hans progressed in the skull and we had to take him off the MLN-8237. The ALK trial was our first choice, but once again the trial mysteriously wouldn't open. We were sent home to CA with the thought of returning to start the trial the following week. That progression wound up being rapid and dangerous. I shudder to think of what might have happened to him had we put him on the 'wrong' trial.

My heart is full of gratitude for all of you who've helped us get right here. You helped us get through three grueling rounds of ICE chemotherapy and then that rough stem cell harvest, and through those tedious MIBG therapies. And now, today, I feel like Hans can begin to truly recover. It's all such a mysterious miracle to me. Thanks for being there in thought and prayer, in kindness and support, thanks for stepping up to be a part of our miracle in the ways that you have.

Now we will have a few weeks to heal up, lick our wounds and recuperate. Then, we will scan to see whether or not there really is any disease left. There may still be a little! Even if there is NO diesease we will do something to treat this tumor to help prevent another relapse. We might just be in what my dad would call a "delicious dilemma." Having no tumor to treat closes off quite a few treatment options, but then you have no tumor to treat!!! I am jumping way ahead of myself. The Rx for the next month is R&R, school, spring break, twice weekly counts, and a breather. We will address scans and treatment options when they roll around. We are in good hands with our home team here, and now UCSF and CHOP are both familiar with our boy and stand at the ready to consult.

I will post after hearing of Thursday's labs.

Thanks for checking up on us!

Just wanted to share this picture Elle took on the iPad today.

We are doing fine. Hans' counts came back LOW...we are scraping the bottom of the barrel here. ANC 250, Plts 7, HGB 10. Sigh. Good thing we are getting stem cells Tuesday.

We rec'd two more packages! Thanks Aunt Holly/Uncle Michael for the Bionicles and thanks anonymous, for the Transformer! :)

The Chuck E Cheese celebration is on hold due to counts.

We've been on a mad roll with getting things done around here since getting back. We finally have one of our three vehicles registered in the state of California. Two are in process. (Registering your vehicle is the type of task that doesn't get done when you average every other night in the children's hospital.) We are getting set up with a solar panel company here in town, going solar and we're really excited about it! Elle and I picked out a new sleeper sofa for the guest room:) I want to plant a small vegetable/container garden, but Hans wants to come with me to pick out the starts and seeds, so that project is on hold until he can get out in the stores with a better ANC. Kevin is cranking out the floors. He is on his last room of the hardwood install job. (We still have a couple of areas to tile, though!)

That's the scoop, thanks for checking up on us. I'll post more after Tuesday's stem cells.

It is very good to be home. We are starting to feel a little more normal now. Hans isn't eating well, but he is at least picking at food. He got right back on it with the homebound schooling and is doing very well with Mrs. James! Speech will be at home this week.

I want to follow up about the "NO UPTAKE" and what it might mean. The MIBG isotope binds to Neuroblastoma. At the post MIBG therapy there was no uptake, so the logic follows that possibly there was no NB left for the MIBG to bind to... I had a lovely email exchange with our doctor since getting home. She suggested that maybe Hans was in remission before we even got to SF. She said it wouldn't have been a waste to go through the therapy (mop up microscopic cells). I feel strange to even type these words. I feel like we shouldn't declare it until we get scans in a month or so. Incredible.

Hans will get labs here today and he will go into LA for STEM CELLS on Tuesday. This will be very very good for him - his platelets have been chronically low for a couple of months since beginning ICE therapy in the Fall. What a miracle it is that we were able to collect those cells and that we are now using them with Hans in a potential third remission. We are so thankful and grateful on so many levels.

Thank you for your packages, prayers, thoughts and good vibes! Thank you for all you have done to get us to this point. All of Hans' Legos, Transformers and Bionicles made it out of the MIBG therapy room, somehow! We rec'd more boxes here.... Hillary, Uncle Dougie and Kim - thanks, Pat K we got Kendo Zane! Kerry and fam - a cool bionicle, Aunt Susy, cool Shark Book! Nolens, an Amazon wishcard:) THANKS all. We are so abundantly spoiled. Those packages got Hans through it. Thank you!

The world lost a bright light last night. NB's own darling, Anna lost her 10 year battle with Neuroblastoma. She was the most incredible thing, diagnosed at 17, she was a voice for the children. Anna was nothing but love and light and hope and optimism.

Home

Ahh, here we are at home!

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

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

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

Thanks for hanging in there with us.

Oh man, 3.1

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

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

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

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

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

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

4.9

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

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

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

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

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

Hans is a ten!

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

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

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

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

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

Twenty

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

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

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

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