Pediatric "Disease Cluster' Map

This story caught my eye on local news last night: A US Map of Pediatric Disease Clusters (including cancers) by the Natural Rexources Defense Council. You'll see a cluster in Houston - just wanted to share that we live nowhere near this part of town. It's right off of the Houston Ship Channel. We actually looked for a home closer to there in the adorable little community of Seabrook. It was right by my old job, but we decided to stay in The Woodlands. The handful of us diagnosed with NB right here in The Woodlands did prompt a study by the Texas Department of Health. But, at that time, our incidence rate of NB didn't rise to the statistically significant level of a 'Cancer Cluster.' Just wanted to share the link. There are 13 states with 42 noted locations.

okay labs

I actually got a 'posed' pic of Hans in the Laundry room he helped me paint! This is kind of a big deal - he doesn't usually like to say cheese. Anyway, I wanted to put up a quick post that labs were okay yesterday, Day 10 of Round 21 of Millennium... HGB 11.1, Pts 200 I think, ANC 1200 (it did take a little dip because we were delayed starting this round so long, I think, that it's been well over a month since his last shot of Neulasta). And NO TEARS for this shot of Neulasta:) I guess he's developing his coping mechanism and incorporating Neulasta into his routine. He did take A LOT of deep breaths!

Going Smoothly

We are doing fine! Hans goes in tomorrow for labs and Neulasta. It's been busy but good here. It's crazy what you do when you're selling your place! Why wouldn't I paint my pantry and laundry when it was just for us? Hans helped me paint those this week. I'm finally fixing a leaky faucet out back that we'd usually just keep a bucket under and go out and water a plant or bush when it got full! We'll just try to keep up the upped level of TLC at the new place for a while. We'll see how that goes... Hans has been having fun squeezing extra playdates in. He had 3 playdates this past weekend including 1.5 sleepovers! Boys this age are cute. It gets to about 11pm and about half the time you hear the annoucement "I think I'm gonna call it" and they phone home! We are happy to be getting some good fun in! Carmen, thanks for watching Hans while I did a big Lanyard Workshop at Elle's school. On Friday, the kids got out for early release. Through the student council, Elle had recruited 45 kids to participate in an after school lanyard workshop. Amazing volunteers Alisa and her mother had set me up with dozens of pre-made lanyard beading kits and they were perfect for this age group! We brought in $345 for the CNCF. Way to go, Elle. Elle is busy with soccer, girl scouts and a few big school projects that she's turning in. I'm busy with this house. The realtor will be here on Friday with a stager. I'll have the weekend to do whatever the stager thinks I should do, and then it's on the market. It's all good! I guess that's all for now:) Lara

Back Home and the Big News

We've been back home a couple of days. I am not so hot with jet lag! I'm trying to get my head back in the game here - just so many weeks 'til summer... bring it on!

I think Hawaii should be mandatory. Everyone needs to go:)

Elle and Hans are getting into the back to school 'til summer grind. Kevin is starting a whole new adventure.

We are going to be moving to California! He starts his new job on Monday. He's doing a cross country road trip right now.
It's a long story, but the short of it is, Kev was going to start with this company back in 2006. He had actually put in his notice at work on a Thursday. Hans was loosley 'diagnosed' in the TCH ER with Neuroblastoma just two days later on a Saturday. We hit pause on our lives for NB in many ways these past 4 and a half years. As my friend Michelle put it, now we are pressing Play.

NB is still a huge factor. But, we'll work around it. We will still seek out the very best treatments to keep our boy here with us, fighting the good fight until it is won. We will keep Hans' medical team at CHOP in charge of Hans' care. We'll find new local teams to care for Hans in our new town of Bakersfield, CA and in LA.

We are leaving behind the comfort of our friends, neighbors, the life we know, the medical set up we've got going on, our familiar schools, teachers, soccer team and Girl Scout troop, and not least of all, the Houston area NB community. We are returning to the West Coast; coming home to old friends and bringing ourselves much closer to family. We are excited for this move, but it won't be without it's challenges!! I'll keep you posted on all the ups and downs. We don't even know when we are leaving yet. We have an offer in on a house, and it could close May 2. That just seems like the worst month to move school kids... so the kids and I might pretty much wrap up the year here before we join Kev. We'll figure it out as we go, I guess...

Scans are in two weeks in Philly. Our schedule has been INSANE!

Lara

i'll let the pics do the talking

Our view! We enjoyed our stay at the Aston Waikiki Beach - we'd recommend it to families.
Clean, fun, great location way at the east end of the beach so it's not soo packed.


Hans - first day at the beach

This was about all the readin'/writin' Hans did over spring break

Hans at Elle in front of one of the gorgeous monster beach trees!

Kevin and Elle halfway up Diamond Head

Kevin and Elle at Diamond Head Park

Hans enjoying a roadside BBQ

Elle and I at Diamond Head

Kevin and Elle at Ala Manoa Falls

Oahu, Day 3

Hi - wow - we've been here about 48 hours now. Feels good!

Yesterday we hit the Waikiki beach, twice, for boogie boarding. Hans is pretty good at it! Today, we visited the Hanauma Bay Nature Preserve for snorkeling- -again, Hans is pretty good at it. He is only limited by a lack of body fat, so he gets chilly quickly (even in Hawaii - but Elle did have goose bumps too). We had to take a few breaks to warm up on the shore. We saw a bunch of beautiful fish in the reef.

We have a great room, at the east end of Waikiki pretty much where it meets Kapiolani park. It's great for a morning walk. Our favorite foods here have been teriyaki and shaved ice. Hans said we should get a house here:)

Oh, Round 21 of Millennium is on hold for right now. Hans is still pretty congested and the docs suggested we give him a break til Monday. That's the scoop for now.

Greetings from Waikiki!

We made it! I never put it out there b/c I didn't want to jinx us...but here we are in Hawaii for Spring Break! It was a little touch and go there with the possible strep on Monday. But, it was a good call to push the flight back a day. I think my primary God-given gift is working the phones, pleading my case, and getting change fees waived! Hans is doing okay. What a good sport. He's very congested with a bad little cold. I brought an entire regular sized box of Kleenex with us on the plane. We got here in time today to go for a stroll along the beach and a dip in the pool. It's an 8 hour flight from Houston, but luckily it was really pretty comfy.

Now all we have to do is try to remember how to be on a real vacation. We're up for that challenge! We are just gonna hang out on Waikiki beach tomorrow, try to catch a wave or two on the boogie board. What a great venue for starting Round 21 of MLN8237.

Thanks for checking up on us!
Lara

Who Knows!

Our special trip is coming up... we were supposed to leave here at about 7 am tomorrow... BUT (why does there always have to be a BUT)... we wound up in clinic today with a little sickie Hansie. Hans has had a thick runny nose, and sore throat. Thankfully - - no fever. Dr. Rainusso actually suspects Strep:( We got a culture that won't come back for 3 -5 days, so we are now on Penecillan just in case. So, I went ahead and pushed our departure back a day. We'll see if we are taking off on Wednesday or not!!!

We've got some other HUGE news, I'll devote a post to it when we get back! Wow - we have a lot going on. Don't worry, it's not another baby! Something else BIG that we've been trying to figure out how to make happen for a long, long time.

Here's a pic of Hans helping us paint our kitchen:) He's so cute and helpful. Too bad I couldn't get him to change out of his 'good' jammies before he helped me this time! Here's a pic of our finished kitchen. Wow - that was the biggest home improvement project I've ever done - staining all those cabinets! But, I did get some help from my crew around here.

xoxo, Lara

Hope Unites Us

I just finally watched the latest CNCF Awareness Video -
I want to share the link. Pat and her team selected a beautiful photo (taken by Carla at Kiss the Moon Photography) of Elle and Hans to close the video.
http://www.youtube.com/watch?v=-1tqAU41rSQ
Hope unites us.

How fitting to have previewed this clip as I'm about to travel to Louisiana with fellow NB mama, Tracy. We are able to attend Patrick's Rosary tonight. I'm just glad to be able to hug my friend Claire.

I wish Patrick's story had had a different ending. I have been praying for the miracle.

I believe, along with Pat Tallungan of the CNCF, and so many other NB families, that Neuroblastoma can and will be beat.

Thanks for following the stories of Hans and his cohorts over all these years, and thanks for your support.

Love, Lara

Rest in Peace, Dear Patrick

We recieved some deeply saddening news today. Our dear friend Patrick's battle with Neuroblastoma has ended today. May he rest in peace. Patrick and his loving family are heavy in our hearts and in our thoughts and prayers tonight.




Patrick was a fun loving, outdoorsy and faithful boy from Lousiana. We met him and his family in the halls of TCH as he was diagnosed just one month after Hans was. He was a year and a half older than Hans, a couple of grades ahead, and he was one of our closest buddies in this cancer fight. Patrick and Hans went through Bone Marrow Transplant together on the 8th floor in April/May of 2007. Patrick and Hans also both enjoyed a long year of relatively good health and normal activities 2007/2008. Then, they also relapsed one after the other. Hans in May, and Patrick just a month or two later. These two boys each had a joyful 'second remission' in 2009. And yet, each boy relapsed within a year.. and even in the same spot, in the bones of the skull. Shaine and Claire sought out alternative treatments to toxic chemotherapies. They traveled to Kansas, Cincinatti, and Lourdes, France on journeys of Healing and Faith. Patrick was one of the first children on the planet to enroll in an Oncolytic Virus Trial. Patrick's loving, doting mother Claire is the true picture of dedication, hope and love. Their faith, their love of their boy, and their hope is a beautiful thing. Please join me in lifting this precious little family up in prayer.



Lara

on watch

Well, we made it through clinic without a transfusion, but only by a hair. Hans' platelets rose to a whopping 41, (you transfuse at 20, generally) but the HGB dropped to 8.1... just .2 above the transfusion benchmark. I don't know what's going on... maybe his little virus last week whacked out his blood counts, maybe it was all they labs they drew while he was inpatient!

They may not bounce back in time to start the next round in time, but that's okay. We were going to postpone Round 21 by a week anyway. We have a big Spring Break planned that I haven't wanted to jinx, so I haven't mentioned yet! Just a week and a half away - can't believe it!!! BIG FUN is in store!


Oh, sorry to be so mysterious with that last pic. We can't seem to keep the grass growing in that spot in our back yard, so we finally got a firebowl to be able to do something with the space. Hans was putting it together, with a little help from his dad.


Okay - that's it for now. Hoping Hans can stay out of the hospital this whole weekend!!

doing okay

Hans is doing well here in our early spring. I took him in locally here for labwork and was a little surprised at the results...HGB okay at 8.8, ANC robust at 4400 (thanks Neulasta), but Platelets quite low at 37:( Not low enough to quite transfuse, but the value did buy us a re-check and possible transfusion down at TCH on Friday. We shall see. We are here at Day 15 so they may well be at rock bottom about to rebound.

More fun, more helping, more horseback riding. We had a little relay 'race' at our ride last night. Hans was "accidentally" trotting a bit on DAK, a fine 31 y.o. YMCA horse. Hans was squealing with delight! My joy may have been tempered had I known the platelets were so low, but luckily I was quite clueless!

Here's a quick shot of Hans and Kev working on one of our backyard projects. It's just been too long since I've posted a pic, so here ya go.

Lara