Labs/ Relay

Hey there - we got labs back --- pretty much more of the same. Platelets are just hanging out in the 30's (33), HGB just dropped under 10, but at least the ANC is Robust at 4000! We'll just ride it out and see if they come up to stay.

Mrs. Hodges' class invited us to join them for their school's Relay for Life today, the last day before break. The class honored Hans as well as Mr. Hodges as he has just been declared No Evidence of Disease after a bout with Melanoma. Whew. Their chants were Awesome! "Stop Melanoma, Stop Melanoma, What? Stop Melanoma, Stop Melanoma Yeah! Stop Melanoma, Stop Melanoma, Boom. Dueces." And the other chant: "Hans! Hans! Hans! Hans! Hans! Hans! Hans! Hans!"
It's a good day when you are riding a cool boy's shoulders (thanks, Junior!) and a seventh grade class is chanting your name:) Thanks also to Elle, Madi, Claire, Eszter, Dazmond, Mrs. Hodges and the rest of the class for making Hans a part of things. Thanks, too, to Brady for the Angry Bird, Roman for the Lego, Mrs. A for the Ninjago and Aaron for the shirt!!! sheesh.

Tips from Hans for some fun:

Download Angry Birds Space, go for a go kart ride, or dye some easter eggs.

We spent a while at the CBCC getting our bag o blood, but luckily they came out with Angry Birds Space on Friday! Hans' pain seems to be subsiding, so
we got out on Saturday and hit our local Go Kart track. It was pretty good fun. Hans isn't tall enough to drive, but luckily, he is tall enough to ride. He chose to ride with Elle, rather than with me! The plan is to bring Kevin along as soon as he makes it out of the desert.

Hans' labwork yesterday looked a little bit better. HGB is up to about 10 after the transfusion, Platelets came up from 31 last week to 36 this week, and the ANC is looking really good at 3300, WBC 5.0. Not bad. Hopefully we are starting an upward trend.

We got scan dates. Well, a CT scan date anyway, of 4/18. It feels like it has been a while... we were discharged from UCSF one month ago today. We will scan the week of 4/18, and if Hans' plan is approved and his counts are up, we may be treating him again the following week.

More Blood

So, Hans' labs came back and they wanted him to come in for some blood.
We were lucky to get a slot here in Bakersfield. Thank you, Ylaria, for paving the way for kids to get help at the CBCC. I can't get over it - this place touts itself as the "largest freestanding cancer center on the West Coast" and it's just a couple miles from our house. Works great for labs and blood (I'm still weary about platelets), and other random things. It's an adult center, so they don't oversee kids' cancer care. But, they are a lovely compliment to our Dr. Marachelian in LA. Everyone here loves Hans! I'm afraid he gets a little extra special care for being one of the only kids. I think it does the oldesters some good, though, to see Hans breeze through here.

Yesterday's Labs: HGB 7.8, Plts 31 and WBC 8. Hmmm, things still seem to be coming down, but that is, I guess, to be expected.

We missed out on getting Hans back to Mrs. Hodges class to drop off 2 batches of chocolate chip cookies as a thank you gift, but the cookies got there at least.

Kevin got home from his Well trip, and now is packing for his next field school - 5 days in Death Valley and Bishop. He leaves tomorrow morning. Wow - we can't keep track of him. I am knocking on wood here, just thankful that his upped traveling has coincided nicely with 'home time' for us, so that we can be home with our girl:)

Thanks to all the blood and platelet donors out there! One of you is saving Hans today!

"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.