"Homebound"

Here is Hans sans hair, circa 2010....don't ask what he's up to! It's a little illegal to feed the ducks around here. Maybe he's just getting ready for a picnic?
Ugh. I have to admit that 'Homebound' doesn't have a very exciting ring to it. Laid up, cabin-fever, sickly are among the words it connotes. I got through the entire meeting at school yesterday, finding myself having to hold back tears - because here I am signing Hans up for 'Homebound Services' and I am focusing on all that he is missing out on! Like I said, UGH. I couldn't get too pumped up about it. Until I met his teacher. I has dismal hopes, I don't know where these came from, that a 'homebound' teacher was one that didn't necessarily 'make it' in the class room. Kind of a burnt out version of a formerly mediocre teacher. Sound a little crazy??? Welcome to my mind! Boy, was I wrong. Our 'homebound' teacher, Ms. Kathy, was sent just for us. She has sparkly eyes and a wonderful beautiful spirit. I'm so pleased and I believe she was sent just for Hans. Now, I'll try to focus on what there is to learn, rather than all there is to miss out on. Now, my only lament is that I didn't think of signing Hans up for 'homebound' last year. Ah well, we might not have gotten set up with Ms. Kathy.

Hans just completed Session One and he powered through it without a break. Apparently he is a math rock star, already practically meeting his end of year objectives - guess we'll have to adapt those. I'm convinced it's all his counting down for meds and tooth-brushing. He has a way to go in the reading and writing, so I'm glad Ms. Kathy will be coming twice a week - on Monday and Wednesday afternoons. Just for now, just until we feel we're ready to send him back. His counts came back with a good HGB of 11.8 and good Platelets at 223, but sort of scary ANC of 996, when last round at this time it was up over 1600. So, geez, good thing he's on these "homebound" services. No school with ANC under 1,000, and on the last round, it was at its low point on the Saturday after the end of the round.
The way the services are set up, Hans can attend school any day his health permits, aside from the days Ms. Kathy comes. So, if he is feeling well, has good counts, and we are on board, he could attend school on Tuesdays, Thursdays and Fridays.

That's the scoop. We are doing fine. The Lanyard Project is keeping me very busy these days. We have partnered with our local chapter of National Charity League and local girls and moms are beading for us. It's awesome, thanks to my girlfriend Marlene for hooking me up with that connection. Bake Sale coming up... February 9th. Yes, Michelle, you're right. That's the thing we need to be doing, work together to fundraise and keep cool kids like Hans on the face of the planet, get them off treatment and back to school.

Elle still owes me a post! I'll try to get one out of her soon!

Lara

Fighting for half of his life, now.

Well, not too much has been happening in terms of side effects. In fact, Hans is doing and looking fabulously! I'm pretty happy about that. He lost all of his hair last week and is bald now. But, I do say, quite beautiful. Without all that hair, I am enjoying seeing, kissing, loving the gorgeous face on that boy. Counts today, big meeting with school tomorrow, scans in Philly in two weeks. I think we are cruising along.

We have reached a couple of milestones. Hans is pushing himself on the swing now! It's such a sweet milestone of childhood. He was inspired by one of our friends, fellow Kindergartner, Kira, who he noticed that last week at the park was pushing herself really well. He's been working on it since MLK Day, and he's got it down.

The other milestone - Hans' has now reached the point where he has been in treatment for exactly half of his life. He was diagnosed at age three years three months, on 10/25/06, and now he's six and a half, yesterday was 1/25/10. This makes me a little sad. Sad that my pre-diagnosis memories are there, but some are fading, and we don't get to make any new ones. I'll always have some sadness and grief those are just two big facts that he doesn't get to be the Hans he was all set to be before diagnosis. He has suffered many not-so-fun side effects from his non-stop three plus year battle. And yet, I have to feel so proud of him and how he handles all of this. He is the happiest kid. He has never once complained of something he has to miss out on. He'll almost never complain of the procedures he has to go through. And, he's got the LOVE thing down. This kids tells us all the time how much he loves us. He wraps his arms around me and kisses me all over my head saying "I can't stop loving you!" I say, "I don't think I could love you any more!" He is just as affectionate with his daddy. He actually loves him even more unconditionally. With me - Hans has laid some funny ground rules. We are together all the time - so this is the deal - when I'm still in my jammies, he loves me, cuddles, etc. etc. - but once I'm all dressed. No more snuggles! Same rules apply to Elle, but she has to be wearing some special jammies that he bought her for Christmas, or no love! He's a trip.

The other way I need to spin this is that after all this time and treatment, we still have him. And, although it is not fun to fight this battle, we can and will continue to do it as long as we can, and hopefully we can somehow lay the beast to rest. We are fortunate to be fighting a version of this disease in Hans that is as responsive to therapy as it is. We only hope and pray that we continue to make the best choices in his treatment to try to save him. There are so many choices once you hit relapsed NB - there are no right/wrong answers.

Thanks for coming along this journey - especially for those of you who can still believe and have hope that we'll come out okay. Thanks to those of you who have helped us in one million little ways. We'll need you for a long way out. There is no way to do this alone! We have to keep the hope alive. That is our only choice.

Love, Lara
Every day is an adventure. Every day is a gift.

So Far, So Good

So far so good, once again. Day Three of Round Three and all seems to be well. Of course I'm always optimistic, but, I remind myself that we didn't get into any trouble until day 8 last time around.

We have a meeting set for Wednesday of next week to get Homebound Services underway. Until then - Hans and I have been packing in a little fun and squeezing in some raking on top of the usual stuff (keeping house, emails, etc eto.) Hans just inherited Elle's old ipod. He is rockin' his favorite tune... BIG TIME RUSH. (This is the theme song from a new series on Nick about a boy band.) He knows how to hit replay for that song and Kevin set him up with some little speakers. I tried to get some video of his dance moves, but I'm waiting to grab the perfect little clip before I post!!!

Other than that - much swinging! We've raked our way to the play structure. So that's good. We have a ton of pine trees here. I actually counted the other day and I now know we have 34 Pine trees in our yard! It's not a big yard, just a lot of trees! The needles fall all year. On top of a few oaks we were ankle deep this time of year. We're almost done with the front and can make some headway on the back tomorrow. I'm going to ask Elle to post soon about Cookie Sales. Her Troop is doing another cookie drive. This is her fifth year to sell Girl Scout Cookies and I can't believe that!

Have a good weekend.

Lara

Proceeding with Round Three

Hi,

I just got an email that we are cleared to proceed with Round 3 of the Millennium. We'll start Hans today at full dose. I'm just a tiny bit nervous - I guess this can go either way - it can go like Round 1 did, pretty smoothly, or it can be a little rough. Whatever happens - please just pray with me that it will clear up that bit of tumor on the skull. It was nice to see some progress was made with the first round, but of course, I'd like to see it gone. We scan again in Philly on Feb 9/10.

I put a request in with the school that Hans starts the home bound program until at least the next set of scans. I don't have any idea when someone will start coming or how often they'll come, but I'm glad he'll be getting some kind of education!
Of course, I'd rather he was at school with friends and classmates, learning in a group setting, but with lowering counts, light sensitivity, sporadic headaches and truly what we suspect is a whacked out new baseline of an immune system...we figure maybe we'll get one more Round under our belts to see if there is any predictability to this drug before sending him back:( These are hard choices to make, and they really aren't fun. They aren't the kind of choices any of us would really want to be making. Hopefully we are doing the right thing.

Hans had an office visit and counts yesterday and they were a little bit off from what I had expected. ANC had dropped to 1100, but HGB and Platelets were okay at 11.0 and 268. They odd thing was that his Glucose was low at 61! His other chemistries were all pretty normal...So, hmmm, that was kind of odd about the Glucose. And yet, he was running around clinic with more energy than usual yesterday???? This Kid! He'll keep everyone on their toes. The treatment for low Glucose: keep the blue Kool Aid coming...


Couple pics from the weekend. We like to go out and wear Honey out by throwing her the ball. Hans is too young for the dog park, so we have to find an empty park or an open space. Hans also got to get out with us and have a playdate with a group of pals, he was running around pretty well and keeping up with the little ones. The light didn't seem to bother him outside. But, at home, he's going around closing blinds, and turning off overhead lights and just letting us have lamps on... Oh, and his poor little head of hair...he already has much much less hair than in these pics from Sunday. It's been an interesting pattern of hair loss, thinning all over, and now a bald spot the size of a CD on the back of his head from where he lays his head on the pillow. Poor kid doesn't like losing his hair at all. He sprinkles the stray hairs he finds back up on top. But, oddly enough, lots of new baby hairs are sprouting back in all over. He keeps coming up with imaginary reasons his hair will come back in:
Maybe if I take a shower my hair will come back...
Maybe if I take these white meds my hair will come back...
Maybe if I get a pillow pet (an ad on tv) my hair will come back...
He falls asleep with his hand propped up on his cheek to save the hairs on the back of his head:( I think Kev's going to give him a buzz cut tonight, if he can talk him into it. I think it'd be more exciting to focus on the new hairs coming in. But, we figure his hair 'do is his call.

That's the scoop on Hansie. We've got Erik, Sam, and Sydney on our hearts and minds, who have each learned of new progression.

Lara

Looks Good

Everything looked good with counts yesterday. Sorry to be such a slacker - just now posting. ANC up to 1500, HGB up to 10.7, and platelets over 200. This is all good -it is nice to see his numbers recover quickly. Our NB kiddos can eventually get to a point where it takes the counts longer and longer to recover. This complicates what treatments they can get, and sometimes they can't get it on schedule. So, it's nice to see Hans' counts recovering. His Potassium was normal again. It was probably a little extra low because he needed stress dose steroids with his fever last week.

We got to hang out with our friends Alex and Athena on Friday. They had finished their appt earlier in the day - but elected to hang out with Hans through his appointment. The kids all had fun together and played a few games of Air Hockey.

I dropped Hans off at Marathon after clinic. He was pretty proud to ride home with Daddy and they stopped off for some toys at Toys R Us; spent some Christmas gift cards. Just what we need around here - more toys, ha ha. But, it's so fun for Hans to shop. He received a Bionicle from our friend Breanna, the Child Life Specialist at clinic. Now he's onto a new obsession! He's so cute to see putting these things together - such a little engineer. Oh, I also brought a new home phone Friday night because we were needing one. Hans couldn't wait to get that thing out of the box and he set it up single handedly. It cracked us up that couldn't wait to do the job.

Hans is complaining just a little bit of light sensitivity and headaches so we are keeping our eye on that. We are just doing stuff around here since we haven't been home on a weekend in a while. It seems that there is always a lot to do. We are trying to rake that yard! It might sound pretty boring - but it's more like a luxury after a weekend inpatient. It's gonna feel good to get that done.

Elle had a sleepover Thursday night, and volleyball game yesterday and I was glad to get to see it. She also had a fun sleepover and not too much of a homework load this weekend. All good.

Lara

Finally, Some Pics!

These are some pics from the Poconos. Snow Days!

We got word from clinic that potassium was low at 3.1 Tuesday, so it's back to TCH for counts tomorrow. Bummer. Elle has a 4 day weekend! Fun!

Okay

Hi There,
I wanted to post again that Hans' counts were okay today. HGB 9.3, ANC 1090,and Plt 130. Not too shabby. Hans is looking like himself! We are happy to see it. We also had a vision recheck. Oh, my goodness, do I have a recommendation of a pediatric Opthamologist should your child ever need one. This guy is the sweetest, happiest, kindest doc on the planet I think. I don't think I've ever felt so calm and relaxed with a doctor. I told Kevin, don't worry - he's in his 60's - but I proceeded to go on and on about this guy. I think they should clone him! He told Hans he could be an airline pilot and that we didn't need to be seen back for one year.

Elle is back into the swing of things. We have been easing back to the real world. We've only had volleyball and girl scouts in the evenings. Soccer is on hiatus til next week. She's also had a pretty 'lax time with homework since they've been doing a lot of their benchmark testing for the TAKS. We'll take it! Life feels almost normal tonight:)

I'm planning the next bake sale and it looks like we're leaning toward 2/9/10 for the date. I'll email my bakers soon!

A lot of my NB friends and cyber friends have scans or surgeries or treatment change ups these days. Thinking of: Chase, Mikey, Erik, Sam, Will and Sydney. So happy to report that Colby and Patrick are both enjoying a second remission these days. Cool news!

Everyday is an adventure. Everyday is a gift.

Lara

Home

We made it outta there. But, with low ANC we are just hanging out at home.
We go into clinic for counts and a vision re-check tomorrow.

can u guess where we r???

From this pic, I bet you can tell we bought our selves two or three nights on the 9th floor, due to fever and a ANC that went from 1500 Tuesday, to 500 Friday, to 300 Sat, and back up to 660 today. HGB holding its own at 10.2/8.9/8.8 the last few days. I'm dusting off my memory, but I think it can drop a little while the kiddo is receiving fluids, no? Hans was looking pretty puny and not eating on Friday and with a temp of 100.6, I brought him into triage at noon. He started to perk up and eat again by 5pm, after a few hours on fluids. He has complained of headaches a few times. But, as you can see from this picture, he is really looking pretty well. This is how is hair looks this days. It is less full in back, but I'm glad he can't see that part!

Ever the optimists, Kevin and I are attributing these symptoms to the new med, Millennium, doing its job of breaking down that little bit of tumor! Go Millennium Go!

Will post more later. Elle and I are about to go back down to the hospital, and relieve Kevin. Elle can't officially enter the floor yet, because they have strict sibling age restrictions during the H1N1 scare, so she has to wait in the lobby while we switch out. Kevin and Hans had an electronica festival last night. Kevin brought down the Wii and a mini TV so that they could watch NFL playoffs while solving Indiana Jones 2 on the Wii. The guys know how to have fun together. I have no idea when they will release us??? Today??? Tomorrow???? Soon ish??? No fever since we showed up at clinic Friday and started getting IV anti-b's and fluids. No known cause of infection yet, but cultures are still growing.

Thank you Athena and Charon for running a lanyard workshop for the NCL girls Friday night. Ms. Nusbaum - I'm sorry I missed my opportunity to meet baby Mia! :(

With a stroke of luck, Elle and I were able to depart from TCH in enough time to meet the Girl Scouts for a tour of the KUHF (local NPR) and local PBS stations at the University of Houston yesterday. That was nice. Thanks to our troop for accommodating us!

Will post more, and maybe even upload pics of our trip from the hospital.

Lara

And, back down to one lunch today

I was pretty happy and pleased yesterday - Hans was happy to be at school and all was well. But, right after I picked him up he started to complain of eye pain. And he was saying that he couldn't see very well. I touched base with the team, and found out that a handful of kids have a similar response to millenium that seems to go away as quickly as it comes on.

Nonetheless, we were taking a detour straight to TCH for a quick eval. Poor Hans did not want to go into clinic at all. I felt for him - here he was having a perfectly normal Kindergarten day, and then...

So, he actually had a pretty good temper tantrum - I'd rank it in the top 5 ever. I wasn't really geared up for all this, so I, in turn, had a pretty good breakdown. Luckily, the nurses were there to scoop me up just like they always do! Nurse Carrie performed the most beautiful and frankly heroic nursing procedure I've ever seen yesterday. She accessed Hans in his terrible state, like an angel, with no problems whatsoever. She made everything okay, because then Hans quickly got some Fentanyl, calmed down, and proceed with the exams that revealed he had great vision and no eye problems.

We took Hans home. He is eating well and drinking well, but he did have a little more eye pain. He's taking some Tylenol with Codeine now for it. He's okay this morning!

Argh. What a rollercoaster. No school today. We're just watching him. But, he has volunteered to do some "home school", so we'll see how that goes!

Lara

Thanks to Michelle, who had Elle over after school for a little baby holding time!

Packin' two lunches for tomorrow

I guess I'm getting organized in 2010 - we've already cleaned up dinner dishes and we're packing lunches here at 6:30pm. The big news is that it's two lunches for school tomorrow! We got good counts today - so we're going to go for it and (try to) send Hans to school tomorrow through the end of the week. Then, we get counts Tuesday, so hopefully he'll be able to do the end of next week too?? It's a start.

Today's Counts, at Day 7, Round 2 of Millineum
HGB: 11.2
Platelets: 184
ANC 1610

Still waiting on chemistries... But, they had come up somewhat at our check up in Philly, so we have reduced his Potassium dosage by a bit.

Hans tipped the scales today at 16.2 Kilos! Despite the fact that he is half a head of hair lighter, I think this is by far the biggest he's ever been, by at least half a kilo. He did look a little puffy today - bloated almost. So, we'll see what's been going on. He has been VERY thirsty - and his beverage of choice these days is Blue Kool Aid! He's still into the hot dogs and chicken, but luckily he'll go from some berries and oranges as well. And, as ever, the chips and salsa keep coming. We had a problem where our local supermarket (HEB) changed up their recipe for their store-brand chicken noodle soup. Hans was such a connoisseur of his soups that he could tell it was wrong, even if I held up the old can to try to trick him. His taste buds are so sensitive or tortured that he can even smell it out as the wrong soup. But, with a stroke of good luck, HEB started carrying the old recipe again. I think this soup helps keep his salts up.

I just told Elle that Hans is outshining her as far as being an early lunch packer. Elle just started to help me pack her lunch, and Hans is starting right along next to her.

That's the deal from us here in The Woodlands. We're doing okay! School started
back up today for Elle and we're getting back into the swing of things. Hope your new year is off to a good start as well.

Lara

Platelets Needed!

No, not for Hans, no worries, but I have noticed on a couple of other blogs I follow
that hospitals are in dire need of platelets. Some are having to ship them into Louisiana and Arkansas across state lines.

I wanted to hop up on my soap box here and ask you guys to get out there and donate -if you can, if you can handle it. This is a beautiful thing to do. There is only ONE way our cancer kiddos and so many others can get these life-saving products - when nice people like you roll up your sleeve.

Thank you - I am quite sure Hans has had dozens and dozens of transfusions. To us, that means donors have saved his life dozens and dozens of times over. I can't imagine if the products hadn't been available.

Full disclosure: I am wimping out on donating blood these days. The last time I did it I felt pretty bad for about 2 weeks - and the time before that, I fainted at a neighbor's house while helping Elle sell girl scout cookies! It's not for everybody -but if it's easy for you to do it, thank you. Maybe you could even set yourself up with a can-do resolution. Give blood four times this year!?! http://www.giveblood.org/

Sorry - I couldn't help but post this after I heard of two different kids sitting in hospitals waiting for platelets to get to them. That just doesn't make sense...

Lara

Almost Home

Happy New Year!
Thanks for all the well wishes for Hans and for a good trip. Wishing everyone a happy healthy new year as well!

We had a fun little three day trip to the Poconos. We all got some serious snow time. Although Kevin grew up skiing, we didn't think Hans would necessarily be able to hang through a whole day on the slopes at this point. We spent time sledding and throwing snowballs and making snow men. We also swam a bit in the indoor pool and hit the hotel game stop.

We turned out to get kind of a funny hotel. It was sort of a stretch to call it a 'resort'. I was a little worried when I went to book our room and it was the ONLY place that had any rooms left. So, if you need to know where NOT to stay in the Poconos - just ask! It was just a little divey, with things kind of old and falling apart. Ah well, we made it! And I think we'll actually have a lot of fun remembering that place and all of its shortcomings.

So, now, we are about to hop on the plane and make it home. It's Kevin's Birthday today. Happy Birthday to a sweet daddy. Your devotion to our boy is awesome!

Hans is on Day 4 of the MLN8237. It isn't hitting him as hard this time around, as far as the "mild euphoria" goes, so that's good. His hair is shedding quite a bit, but he still has quite a bit left. I did give him a haircut the other night, so it'll be easier to manage the shedding. He doesn't like it falling out at all. He still finds stray hairs and pats them back onto his head. Yet, he still takes his meds!

Lara