Labs are fine

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

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

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

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

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

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

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

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

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

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

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

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

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??

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

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

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!