About Me

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Bakersfield, CA, United States
Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.

Tuesday, September 29, 2009

Back into the Swing

Hi Again,
I had to take a minute to post a little more good news. I have mentioned that we've had some trouble with the transition from home to school. When it first popped up (the week Hans was on round 10 of ABT 751), I admit I was confused, because Hans had been doing so well. Hans actually missed several days of school that week, mostly because we didn't have an action plan in place. With Hans' side effect of the Adrenal Insufficiency, nobody, including us, usually lets him get too upset. This has cost us a little in terms of normal parenting - but we are working on that! I guess we have our work cut out for us there. But, the school wasn't wanting Hans to get too upset either. Anyway, after missing those days, and then being out for our trip, I pretty much talked to everyone I saw about Separation Anxiety. We finally realized, that despite Hans' situation, with this issue we pretty much have to treat him like any other little kid. It has taken me a couple of weeks to wrap my mind around this and toughen up about it mentally.

So, Friday, I woke up determined to get my kid back to school. We had to do the old teacher-peel-the-kid-off-the-mom trick. Thankfully, Ms. Loosmore was willing to detach him from me. We had to do the same thing Monday morning, but it wasn't quite as dramatic. The funny thing about it is - I had a call BY THE TIME I GOT BACK TO MY CAR that Hans was okay, and sitting at his table, doing his work! And then today, we made it all the way to the school with out a single tear. Hans had an apple in hand for his class project, and as I was helping him get out of the back seat he said, "Mom, what do you think of me?" I just kind of looked at him and said "What?" because I wasn't sure what he was referring to. He pointed at his eyes and said "Without all those tears!" I told him I really liked it and we marched into the school and he went and did his thing. The funny thing about the separation anxiety is that he does great when he is at school - just gets hung up on the transition. I don't suspect this is the last we'll see of it, but I'm glad it was better today.

Oh, by the way, thanks to our Girl Scout Troop 11251. Last night we beaded lanyards as a group! There were some very pretty ones and some wild ones. My friend Laurie is taking them to her work to sell today. Thanks also to Jen and Tony, who are selling a cache of lanyards to teachers and friends in Arizona for the cause.


Sunday, September 27, 2009


So I am finally sitting down to more fully update you on our trip. It was once again, a crazy week in our lives! But, I just read back over September of last year, and thank goodness, it didn't hold a candle to that month! We ended up all getting some version of that bug that Elle got. It's funny, but Hans remains so stoic with his pain experiences, that it wasn't until Kevin and I started getting symptoms of our own that we put two and two together and realized that Hans had just gone through it all on his own. We were up and back in two days. We did something a little different this time, we stayed right in Center City at the Doubletree - it was pretty sweet with a pool and a view of City Hall and the Avenue of the Arts. We had enough time to have a festive night out to the restaurant El Vez (chips and salsa for Hans), and then a quick cruise along the Avenue of the Arts, and a dip in the pool and the hot tub.
The next morning I started getting those stomach symptoms. And the general misery made the waiting for MIBG scan and results all the more excruciating. I just kept thinking - I have to keep it together, because if I just start crying - I'm not going to stop. It's really a crazy situation to have your child scanned for tumors every three months. You have to find out, all over again, "Does my child have cancer?" So, to come out on the light side of that response is pretty incredible and uplifting. We sure do feel that we have done the right thing in coming to CHOP. The team there is so dedicated to beating this disease, and the mysterious combination of the characteristics of Hans' tumor, and the team's expertise have all just fallen into place. Hans has an undeniable connection with Dr. Maris. It might just be a guy thing, but I suspect there is something deeper happening here.

When we arrived at CHOP in the cab, with all of our bags, fresh off the plane, we make this big turn and suddenly the hospital comes into view up on a hill - it says "Children's Hospital of Pennsylvania - Hope Lives Here". It blows me away. Because, for us, for Hans, for his specific tumor, for our situation and our family, it worked. It was the right thing to do. Despite the fact that we have travelled there so frequently (7 times in the past 12 months), and the expense and upset to general family life is great, it worked. We have always had HOPE, but we feel we have put our HOPE into the right hands. We are ever so grateful and humbled and once again we come away with the feeling of Mercy. We are so thankful for this glorious time. There are absolutely no guarantees with this ugly disease. We just have to take one day at a time, just like everyone is supposed to do. But, isn't it just the hardest thing in the world not to plan and dream and hope away for the future! And of course we do, it's just that our future has this horrible black question mark that gets put into check every three months with scans in Philadelphia.

Now - we get to forge ahead with normal life...soccer, beading parties, Kindergarten, (Hans' separation anxiety has been making it the transition from home to school very tricky, tho) home repairs we're catching up on - (I swear we fell three years behind on our place) and regular stuff... and in probably about 6 to 8 weeks we'll start to feel the fear and anxiety sliding back into to our lives as the next scans approach, but, for now, we get a free pass to continue life as usual without any treatment change-ups.

Hans is a one heck of a little Kindergartener - with his Frequent Flyer Card and his NFL wheelie back pack, he can handle any airport like a business traveler! Kevin and I are so proud of him. And, needless to say, we're proud of our pretty girl Elle, who celebrated her 11th birthday Friday! She handled us leaving her, with a big change up in plans at the very last minute, with courage and grace.

One more thing... Thanks again to everyone who has made these trips easy for us... the Sparrow Clubs, and all of you who have donated miles. Most families wouldn't be able to do this all on their own, and we are grateful to everyone who has made traveling for Hans' treatments possible.

Sorry for such a long post!

Wednesday, September 23, 2009


Just got back from Philly. CLEAN SCANS/GOOD ECHO.
Super happy and Super beat so I'll have to post more later.

Thanks for the love!


Tuesday, September 22, 2009

Off We Go

Hey Everyone -

I just needed to post a superquick post. We had a FABULOUS time at the best water park in the world (I'm not kidding, it really is the coolest, old water park I've ever seen - it's built up and around the Comal River and natural surroundings.) Thank you Sunshine Kids and Schlitterbahn for sponsoring us and 49 other families of cancer kids on this memorable weekend! Sweet!

However, the tides turned for us about 11am on Sunday, when Elle apparently came down with a stomach flu. With tickets out of Houston to Philly for Monday, we proceeded to load the car and go (stopping 4 times to let her get everything out of her system.) We are totally unsure if Hans isn't coming down with the same thing. So, we got all the way back here, and decided to push our Philly tics back a day and we leave early today.

Thanks to Mona and Ken Draper (Kae's parents) for opening up their doors to host Elle at the last minute. She's all better now and will go to school today. Elle had planned to stay with her girlfriend Genna, but Genna was running a high fever yesterday. We have been hoppin' around here. Hope to post more with great news tomorrow. Thank you for your prayers for those pretty, clean scans!!!

Love, Lara

Thursday, September 17, 2009

Touch and Go

Sooooo, it's been a rough week around here. Hans is finishing up his tenth round of ABT 751 and for the most part is doing well. With one exception....
He can be very resistant about getting out the door to school. It's pretty crazy. He definately does a ton better when he's off meds than on meds. So, thankfully today is the last day of this round. I know he loves school and it's been great for him. But, it's like he is getting stuck transitioning from home to car to school. Argh! We are working on it - but don't have a great road map! So, I guess if you can keep those "super cool school" thoughts coming for Hans, we'd appreciate it!

On another note, we are heading out to Schlitterbahn (a water park in the Texas Hill Country) this weekend for a Sunshine Kids field trip. It's going to be a lot of fun. Thanks in advance to SSK for including our family on this adventure. Then, we will then be getting ready for Philly on Monday.

Elle is doing just great. She's getting into the groove of 5th grade. Yesterday she ran for her homeroom representative and after three rounds of voting, she came in a close second and will serve as alternate. Last week's soccer game got rained out and she'll miss this game for the Schlitterbahn trip.

I guess that's about it for now.


Saturday, September 12, 2009

Pediatric Cancer Awareness Day

Today, September 12, is Pediatric Cancer Awareness Day. I know that all of you who tune in to our bog are AWARE - so I want to take this opportunity to say thank you for all of your support. It means a lot to me. Thanks to all of you who bake, and bead, and come up with items for garage sales, or whatever else you do. These can be little efforts, but I very strongly believe in the power of their cumulative effect. We did $2,200 yesterday in sales at our Bake Sale! It may seem like a small dollar amount if taken alone. But, if we think of this figure in the long run, and we do just four sales a year, and we continue on for ten years...we are close to hitting $100,000.00! I think that's amazing. A hundred grand can surely fund a world class clinical trial. So, keep on keepin' on, because, sadly the work isn't yet done.

I don't want to beat you over the head with this, because you know it - but I just copied a couple sentences from an article on Childhood Cancer Awareness Month...
"There are many children suffering from difficult-to-cure pediatric cancers that require innovative approaches, and this means money. Relatively small amounts of government funds are spent on pediatric cancer research...and generous individuals fund a significant amount of the research we need to save kids lives." http://ccrf.convio.net/site/TR?pg=fund&fr_id=1140&pxfid=3100

So, today, I want to thank those of you who have supported all the various efforts to raise funds for this important research. Have a great day. Hug your cuties.
Everyday is an adventure. Everyday is a gift.


Wednesday, September 09, 2009

Little Update


I'm up sort of late for me, baking! But I wanted to post a little.

Hans is doing well so far with week three. He's getting to know some of the kids in his class and telling us some funny stories about making friends at school. It's different having a boy in school now; you don't get quite the same level of detail as with a girl. But, I'll take any news I can get.

I have a ton of friends baking tonight and tomorrow for Friday's bake sale. Thank you! I hope we do well... after all, September is Pediatric Cancer Awareness Month!

Elle did great in her second tournament of the year. The girls had one win, one tie and one loss... and they moved onto the quarter finals...where they lost. But I think it was a good show. We had two more girls go off the field during training last night with potential injuries! Yikes! I hope that's it for the year. Our girls are sort of dropping like flies! The main thing we have to get the hang of now is time management around our new fifth grade home work requirements and all this soccer. But, we'll get it down.

Kevin has had his work cut out for him around here with his little helper - Hans. They have rebuilt part of the deck - got our poor battered hot tub back into working order, and he's building a path around the side of the house. Hans LOVES all the action - but I think he is a little tired of going with his dad up to the "board store" (home depot)...

That's it for now. I'll report later with news of Friday's big sale.

Thanks for those of you who are baking, and to all who are scanning this week, and next week, and the following week, we're praying for each of your little beauties:)


Saturday, September 05, 2009

News for NB Families...

This conference is just being announced, so I wanted to post about it. It's our first Regional NB Conference for Families and Caregivers. I'm excited about it and proud of my friend Athena for her hard work and dedication. The Email below is from Pat Tallungan, president of the CNCF.

Hello everyone,

Not all of our families were able to attend the conference here in Chicago,
so CNCF is trying to reach as many families as possible and we have set up
our first regional conference. It will be held in Houston. It is a one
day seminar scheduled for Saturday, Oct. 17, 2009 at the Hilton Houston
North from 7:30 am to 5:00 pm.
Program speakers:
Dr. Heidi Russell, TXCCC
Dr. Chrystal Louis, TXCCC
Dr. Peter Zage, MD Anderson
Dr. Patrick Reynolds, Texas Tech Un.
Dr. Meghan Granger, Cook Children's

All families are welcome to attend. You can go to our website for more
information and to download a registration form. www.nbhope.org

We anticipate a successful regional conference and hope to spread across the
country doing similar meetings. It is our goal to make learning as easy as
possible and as convenient as possible.

Thank you and we hope to see you there. If you have any questions feel free
to email me or contact Athena Friday-Black at:

Pat Tallungan

In other news: I'll just way we're happy week 2 of school is over. I'd say 4 good days out of 5 again.

Elle and I are up to another soccer tournament this weekend in Katy again. So, we basically have to pack it up and say good bye to the guys for at least half of the weekend. This should be the second of two or three tournaments all year. I'm still getting used to it. It is a little intense! We've already got two girls on the DL from the first tournament, and we haven't even started regular season play yet - that starts the 12th. It's so dang hot still, the games are spread out, noon and 6pm, and so far away that Hans would never hang on the sidelines. Kevin and Hans have their work cut out for them at home, though. They've been rebuilding part of our back deck that got waterlogged. It's nice to finally be able to give our home some TLC. For soooo long there, all our TLC went straight to Hans and he needed it. We're incredibly happy that he's doing this well. I just hope and pray that good scans later this month will allow us to keep up this normal, lovely lifestyle!!!!


Tuesday, September 01, 2009

Hans is Still Doing Fine as a Glen Loch Gator

So - just a quick good news report. Day 2 this week and we are doing great! I still keep saying 'pinch me!' Hans practically ran out the door to the car this morning. I guess he was maybe just ready for all this school stuff. He and Zach are pretty cute together! The early pick up seems like a good idea to start him out. Also, we get around the PE and Recess issue by leaving school after lunch. I have been trying to get the school to give him an aide for those two periods - because if he gets hurt, he'll need the nurse's immediate attention (with his lack of adrenal glands he doesn't produce adrenaline and he needs a stress dose of steroids immediately upon illness or injury...) but I have no idea if the school will find a way to meet my request - so we'll have to see what happens. But, I figure we're good with picking him up after lunch at least until he has a good month under his belt. To be honest, I'm just glad that I don't have to try to figure out how to home school him. I just don't think we have the right dynamic for that to work out well. And, I am loving getting to take a nice long walk in the morning. Hans isn't usually up for a long stroller ride...

We just got our tickets for Philadelphia. We'll be up there 9/22 and 9/23 for scans. I'm starting to get a little of that scanxiety setting in, especially with his recent complaint of headaches. He hasn't had very many, but it's odd and any new 'symptom' always makes you a little sick...

I forgot to mention that Hans lost his two bottom baby teeth! One while we were up in Seattle, and the other the weekend before last. I was excited to see that little milestone happen right on time, just after he turned six. Pretty cool. I'm totally thrilled to see the permanent teeth working their way up. We have heard of some NB kiddos not developing their permanent teeth buds, depending on where they were developmentally when they went through radiation. So, hey, that is something to be thankful for!

Fun to give some good news and I hope to just keep dishing it out!
Thanks for checking on us.
One more pic from first day of school, where you can see the missing teeth!