Holding His Own

Hi. We've wrapped up Round 12 over the weekend. I figured out today that there should be about 34 maximum rounds of Millennium on this trial. So, I guess we are a third of the way through this one. Rounds are spaced 3 weeks apart, and the trial is written so that he can stay on it for 2 years. Anyway... he could always get bumped off for side effects, progression, or just if the doctors, or his family, wanted to pull him off for another reason.

So far he his holding his own. His blood counts tend to hover on the brink. His HGB is 8.9, ANC is about 1100! I think! We got labs at our local peds office today and the print out is just a little different so it's hard for me to find the ANC... Platelets are great at 330! That's nice.

That's about it! Hans is doing fine with the homebound with Ms. O. - it's just that it's not so many hours.

Elle is busy with school and soccer. Soccer is back and in full swing.

Numbers haven't been fully crunched yet on the run, but early reports look like we might be in the 10K ball park! Not bad for an Inaugural Run!

Thanks for checking up on us:)

Lara

Fun Run Smashing Success!

Elle, Anne (who ran Preggo!), Me, Dana, Carmen, Morgan, Ginger and Adrian after the run

Tamiko and Elle after it all. You can sure see Elle's cute winning tshirt design in this one!
I must tip my hat to first time Race Director, and NB mom to adorable Donovan, Tamiko Porter! Wow - way to throw a Fun RUN! Everyone kept telling me what a beautiful success the run was! Yes, indeed it was. I know the numbers aren't quite crunched yet, and I'm not about to 'Bug' Tamiko for a day or two, but we had 500 plus runners, a beautiful morning, and no real big snafus. Elle came in second in the Family Walk (a lot of the kids ran, and a 14 y. o. boy beat her:)

It's pretty cool to see all the NB mamas and a few papas out there doing their thing. I continually feel blessed that despite the fact we are all sharing the burden of this NB diagnosis, we are able to form a unique community with so many special families.

I want to thank my friends: Natalie, Jere, Michelle, Mark, Jack, Jace, Joshua, Carmen, Ginger, Dana, Morgan, Adrian, Anne, Stephanie, Tom, Reese, Marin, Beth, and Bud for coming out to run and walk with us. I want to thank RN's Marcelle and Dave for staffing the first aid booth! I'll update later when I hear how we did. It was fun. Not a bad birthday kick off:)

Hi, Here we are on Day 5 of this round, Round 12. It does seem that even rounds hit Hans a little harder. Yuck. He sort of has that fried chemo look - sunken in dark circles around his eyes and he looks skinny! His ANC was already 600 yesterday, and at that point, he hadn't even had his fourth dose yet. Here's a pic of just one of his daily doses of meds. Right now, he is asked to swallow 16 pills a day (on the weekends). He only gives us a hard time about the Bactrim, which he feels is optional! He also has backed off on his requirements that I count down backwards from 7 minutes - thank goodness - he just asks for one second. Here's another with a couple of his Bionicles. Sweet boy!

I guess I wanna ramp up the prayers all around. I'm a little nervous about getting through Round 13 and the next scans. Not that there is any new pain, not that there is anything unlucky or cursed about 13, but that's exactly how many rounds he was able to enjoy his second remission on ABT751. I fear that his tumor is just a little slow, but then it figures out how to resist a new drug after a while. So, ramp up the prayers and the image of that pretty clean scan...or cleaner. I believe it can happen!

Our sweeeeet little pal, Patrick, right here at TCH, got some upsetting news of progression and he's going to try to go on that new Seneca Valley oncolytic virus trial. A lot of the kids I follow online, but don't necessarily 'know' are getting bad news or are in a tough spot, inc. Elizabeth, Evan, Liam, and Nick. It really stinks.

So, I guess it's good that we're spending our extra energy on a FUN RUN! Elle and I will go and volunteer and hopefully walk tomorrow. Hans and Kevin will chill out at home. Not getting overheated, keeping out of the crowds with over 500 runners registered so far and an ANC that probably matches! Tamiko has done an impressive job as a first time race director.

Thanks for checking up on us. Lara

Online registration closes tonight

Hi,
Just a quick note to those of you who were wanting to register for our Inaugural NBHOPE 5K Fun Run. Online registration closes tonight at 9:59pm, so register HERE if you were planning on it! Thanks to all of you who already have.

Thanks also to those of you back home who are sending $$ for the tshirts and the raffle tickets!

I am going to TRY to make it to packet pick up tonight. I'll pick up my Woodlands friends walkers packets and get them to you Friday - or you can come by my place.

Government funding is TOO small to fund enough novel treatments for NB. Grassroots organizations are making a difference. Thanks for your ongoing support! I know - us pedi cancer parents always have our hands out, huh? I'm just hopeful that I'd be nearly as supportive as some of you if the shoe were on the other foot.

Lara

Round 12

Round 12 of the Millennium (MLN8237) is under way. We have Day 2 under our belts now... I am hoping this one isn't too nasty. Hans does seem a little loopy drunk and tonight emotionally volatile.

Hans had his first day of school today! He is off to a great start! He actually has the same classroom teacher that Elle had, Mrs. Parker. Mrs. Parker was and is wonderful! One of those people who seem to have been genetically engineered for teaching. The classroom teacher designs the material, and then the home teacher, Mrs. Owsijuk (Ms.O.) brings it home and teaches it to Hans. Ms. O had a very good first day with Hans. She is a retired teacher from our very own Glen Loch. She is great, and it seems as though the year will go well.

I don't think we have labs til Thursday, but I am having trouble making the appointment for some reason! I think our onc is on vacation and there is no one to write the orders... I'll call again tomorrow.

1st Day o 6th Grade plus a couple vaca pics

Elle at bus stop this morning

Elle and me at the top of the ridge

Hans giving my grandpa a back rub (How cute is that???)

Kids riding

One more back to school shot

Hans has got me pretty well trained not to take too many pictures. He really screams and carries on when the camera comes out - it's ridiculous - managed not to get one picture of the kids with my parents - what's wrong with me???

Sooo...I've got one kid off to sixth grade. Wow! She's soo big. I can hardly believe it. I keep looking at her and saying things - like, you only have 7 more years before college! She's like - yeah, but that's SEVEN whole years!

She's fun. Made it through the tournament, but the games got harder - just fatigue/exhaustion kicked in. AND, she had these awful blisters on the back of her heels. I'm just glad she doesn't have a game this weekend.

On the Hans front, we weren't cleared for the classroom this year. Not yet, anyway. My heart is always a little heavy this time of year. I think about all the angel kids I know. I think about their moms today, and I try to figure out what grades they would be going into. I think about all the kids I know that are too sick for school. Hans' homebound program starts tomorrow. I know this is actually the best thing for him right now. There is just no way he could do a full time school situation, but I was sort of hoping he'd be able to be there at least part time. He seems to be happy as can be about the situation though!

Hans had no more symptoms after being sent home Friday night. We are waiting for confirmation from CHOP that it's still okay for him to start the next round.

That's the scoop!

Lara

Big Night

And not necessarily in a good way - we were all set for a big night of Hans' buddy Zach's birthday. Hans was going to attempt a sleep over birthday party for the first time. But, about an hour before the party started he said, "Mom will you take my temperature, I think I am getting a fever." Sure enough - 99.6, then 101.3. High enough for a trip to the ER. I spent about an hour scrambling - getting Elle set up with a host family (Thanks Shawn!) that could take over getting her to soccer, restocking the emergency hospital bag, which thankfully we haven't had to use in quite a while...

Meanwhile, Kevin was on his way home with his new ride. The little white truck has seen better days...it was time. We actually passed each other on the freeway. Kev let Elle see the new car (Jetta TDI SportWagon - fuel efficient - Kev's excited!) drop her off at Shawn's, then he turned right around to join us in the ER.

Hans never got too hot, but he did look a little wiped. Sort of low BP, sort of high Heart Rate caused some concern among the docs. But, after half a bag of fluids, and a dose of IV antibiotics he was looking good. They debated and at one point planned to give him a mini transfusion (4 oz of red blood cells), with a HGB of 8.6 I didn't really get it, but was sort of willing to go along, but then they decided that with his very strong ANC of 4500 he was good to go home. We promised to call if more fever popped up.

Made it home by 1am to sleep in and completely miss Elle's first game since she was taken care of (I would have had to leave here at 5:30 to make it there on time, and I do seem to need a full night's sleep when possible.) I just touched base with Shawn, Elle made a goal and our team won their first game! I'm heading out for the remaining games today - and Kevin and Hans will do the guy thing here at home...

That's whats going on!

Lara

PS - I am now under the impression that the quote from the article yesterday is a misquote - it should have read cancer, not NB.

Did any of us know this?

An NB article on a new clinical trial of NB was going around. It contained the following quote:

"Neuroblastoma, a solid tumour found outside the brain in the nervous system, is the most frequent cause of disease-related death in children." http://www.eurekalert.org/pub_releases/2010-08/w-sfn081810.php

I am floored. How can we be almost 4 years into this cancer fight and have never never known this? I am almost doubting the validity of the quote! How can Neuroblastoma be the biggest disease killer of our kids and most people have ever heard of it???

What can we do about it - - many many things! There are wonderful foundations popping up all over the country. But one thing you can do right now if you live in Houston is sign up for the NB HOPE 5K Fun Run/Walk. You can run it, walk it, or just buy some raffle tickets.

We've got some very cool prizes - 2 round trip airline tickets on Air Tran, 2 tickets to Disneyland, and a photography session. Please contact me at kevinandlara@hotmail.com. To buy some raffle tickets ($5 each, or 5 for $20). 100% of raffle ticket proceeds go to beat NB through the Children's Neuroblastoma Cancer Foundation.

Thanks for your support...

Lara

A little more on that

Hi, we are all reunited back at home. We landed and got home and I ran back down to get Elle. And, we're already right back in the fast lane! We got home, started to unpack and do laundry, and then I got on this clean the fridge kick. It felt good and we went shopping and filled up the clean fridge:) Two meet the teachers tonight. Soccer tournament all weekend! School starts on Monday! And, we still need to get school supplies and new cleats. I would sign right up for a couple more weeks of summer if I could.

Dose Reduction - we discussed this with Dr. Maris. He just felt that since Hans' MIBG is still positive and not negative, and the Rounds where Hans' side effects are really terrible are less frequent, that he wouldn't reduce the dose. That was okay with us - we just wanted to talk it out. The interesting thing is that Hans is really on the cusp with this dose. The dosage is prescribed by Hans' height/weight ratio. They said that he had lost a tiny bit of weight since the last office visit. And, actually, if he had weighed in at even 0.1 kilograms lighter, he'd be on the 50mg dose! So, essentially, as he packs on a couple pounds, the dose may not hit him as hard...

Scanning Less often or, 'Spacing out Evaluations - Dr. Maris mentioned the possibility of this a couple scans ago - but I think he actually forgot! He wants to stick with the scan schedule as written in the study (every 6 weeks, rather than every 12 as we have been used to during other times in treatment). I guess that's fair enough. However, this is Hans' favorite issue. He did ask Dr. Maris if he could start coming up to Philly every 80 or 90 nights, rather than every 40 nights. Poor kid. I think this business traveller thing at 7 IS starting to get old.

I'll talk more about school next time. This is one issue that proves to be difficult for us! argh...

Thanks for checking up on us.

Lara

What's cool on the Hans radar now? A new dollar sign necklace (thanks cousin Brandi), berries - raspberries and blackberries, chicken, chips and salsa, lemonade Kool Aid. Still Big Time Rush, Uno Spin, and Lego Harry Potter. And of course Nickelodeon. Whenever we stay with someone, or get a hotel, it's all about --do they have Nick??? A lot of times the hotels don't.

Stable

Hans did his MIBG scan this morning, and we met with Dr. Maris,and Jen our NP right after. The scans look good - said Dr. M. Good as in stable.
We had a few things we wanted to discuss with him:
- a possible Dose reduction
- and "spacing out evaulations" as he had mentioned 2 office visits ago
- and, school.

basically we are keeping everything the same, 60 mg dose, scans every six weeks, and homebound schooling for now.

I'll get into the inns and outs a little more later - gotta catch a cab and get to the airport. We did have to move to the Doubletree last night. We have really been hopping around.

Hans had a dip in his labs yesterday. He was down to 2.7 on his potassium. We gave him an extra oral dose and we are back in business at 3.5. Also, his ANC was up to 3000! So - Round 11 is not Round 10. That's a good thing. We are cleared to start Round 12 on Monday. No labs required in between. That's another good thing.

Hans is very ready to see Honey:)

Thanks for your thoughts and prayers for Hans and all our little NB pals.

In Philly

We had a day of travel yesterday. Kevin got the worst of it with a 4 hour mystery delay. Oy! We are reunited here at the Sheraton - we'll get to swim in the pool before we go in for labs and the MIBG injection. We are also waiting for news on where we'll wind up tonight - the Sheraton might be all booked up, so we may have to 'move'.

Our trip to Seattle wrapped up. Over the weekend, my dad and I went out and did some shopping, we had a big family picnic at my Grandpas with my cousin Jen also in town from CA. We met girlfriends and kids at Woodland Park including Sunny, Sasha, Shelley and Jana. I got to babysit my Goddaughter Madi. Elle had a sleepover with her old pal Greta. Elle and I attended our friend Kerry and Sean's wedding reception. Congrats! Fun to be able to go - we've missed so many special events living out of state for the entire past decade. My mom graciously missed out to watch Hansie as his counts were too low to really 'party'. They had their annual jam making event with Papa. And swam! Hans can't get enough swimming. Esp. in 90 degree Seattle heat;) So fun to see everyone. Actually - we never get to see everyone - we still missed a few buds, 2 of our sibs, and a couple of cousins. I did pretty good on my side though, I think I actually managed to see 9 out of 13 first cousins and all of my aunts and uncles! Not bad:) I didn't do so well with Kevin's side b/c a lot of them are out of state now as well. I never feel like we get enough of anyone on our whirwind tour home. Elle and my mom have two extra days together. I think more swimming, some shopping and maybe even a little golf were on the agenda.

My big snafu was that I left my cell phone charger at my mom's. Elle will be kind enough to pack it home to me, but in the mean time if you need us, please try us on Kevin's phone. Sorry!

Praying for better scans, if not clean, scans!!!!!!!!!!

Counts recheck

So... things have been busy but fun! I went to pay a visit to my friend Delayna and Hans was jumping on the trampoline, after having spent the day in Mattawa swimming with Kevin's dad's side, and I said, oh - we have to get going, we have to ride horses tonight! And Delayna looked at me and said, 'I thought you were supposed to be slowing down!" We both agreed that I'm not very good at that. Especially when are up here and there is so much to do, so little time!

Wednesday night we went to the county fair grounds to watch a rodeo roping elimination and met up with our friend Clay and his family. Hans enjoyed watching the ropers! The top six cowboys and cowgirls will rope in the upcoming Ellensburg Rodeo Labor Day Weekend. Friday morning Elle and I were able to hike the Manastash Ridge Trail. I was pleased that Elle was interested in this hike - the last time she went - she was in a back pack as a baby. It is about 6 miles round trip, and about 1700 ft up. We made it up very gently, taking quite a few water breaks in over an hour. We signed the guest book at the top to see that one dedicated hiker made it up in 36 minutes - barefoot! Whoa.

We drove back to Seattle yesterday, arriving directly at Children's. Hans counts are so-so. He is "neutropenic" with an ANC of 209. But his HGB and Plts are holding their own at 10.4 and 159. Our friend Will is also experiencing a low ANC and his dad Pat recently did a bang up job at explaining just why that is important here.

My mom took the kids to swim and have dinner with my grandpa. I went to Thai Food with my girlfriends Kerry and Sunny. It's our summer tradition. We've been friends since grade school.

We'll try to slow down the pace, and keep Hans relaxed and germ-free! It's nice weather here so we are happy. Hans and I will meet up with Kevin in Philly on Monday night. Right now we are lounging in our jammies at my mom's playing another exciting game of Uno Spin. Hans loves it! (Thanks for the perfect gift, Colleen!)

Lara

Labs are Fine and a couple E'burg pics

Hans, Grandma Kathy and the new pony, Pepper

Grandpa Dale, Hans and Zippy

Hi,
Just another quick post - we were able to go to Children's Seattle yesterday and get labs done. It's sorta crazy that Hans is having labwork sent across three states - drawn in Seattle and faxed to Philadelphia and Houston (I feel a little high maintainence about this), but whatever works, right? They were very accomodating. The results actually looked pretty good - HGB 11.9 (or was it 11.1 I actually forgot), Plt 200, and an ANC of 1900. They did say a few values in the chemistries were just a bit high and low... but nothing too concerning. Oh, I guess the liver was a little irritated so who knows what that was about...ALT 61. Hopefully that will resolve!

We are in Ellensburg, and Hans is helping with the horses and pony. Elle and I went to a nice lecture last night at Central Washington University commemorating the 30th Anniversary of Mt. St. Helen's eruption. It was nice to be able to go!

Pictures soon.

Lara

Fine

Hi,
Juts a very quick post to say that Hans is doing just fine. He has finished Round 11 (?) of Millennium and is doing okay. It is about now that his symptoms usually crop up - fatigue/darkened eyes/eye pain/headache, and low blood counts. We shall see. This is the 4th round of the upped/60 mg dose. We will at least discuss going back to 50 when we get to Philadelphia next week, but I have a feeling we'll stay where we're at. Hans had a little eye pain this morning...got a Tylenol with Coedine and he should be okay!

We've been packing in a lot of visiting and site seeing in so far (family party, ferry ride, Seattle Aquarium (Hans says he can speak to seals), and lots of swimming and parks. We've been able to see handfuls of friends already and dozens of family members! Thanks to Auntie Anna for driving over from Eastern Washington yesterday so I could meet my niece Hailey! She's sooo sweet - just like her sister.

I have a feeling that now we have to switch gears and slow down our pace. We'll go in for labs Tuesday and Friday this week at Children's Seattle. Hopefully Hans will get by okay without needing a thing.

We lost little Katie (TCH) this past week.

81 F/ 61 F

I think that's all I need to say. It's beautiful here. All we want to do is be outside! Hans got the mail for my mom on the way home from the airport and he said, I'll just walk, I just want to be in the cool air.

It's nice. We are taking it easy so far. Logging in a lot of swinging and swimming time with various combos of family members. We'll look forward to seeing a few friends too.

Hans is already on Day 3 of Round 12 of MLN 8237. So far, so good. We will bring Hans in for labs twice next week here at Children's (Seattle). We'll also head east of the mountains to see our relatives there and meet the new pony at Grandma Kathy's/Grandpa Dale's.

A couple of our NB comrades could use a few extra prayers tonight - Evan, Katie and Sal!

Lara

Made Counts/Just 6 Days Late

2nd Post/Update:
We did make counts. Hans is looking pretty good: HGB 13.1 PLT 280 and ANC 1581! We are going to start back up at full dose, 60mg. At our next office visit I believe we'll at least discuss reducing the dose, because it doesn't look like a full time classrom 1st grade experience is in the cards if we stick with 60 mg, but we shall see. Hans and I are off to Seattle tomorrow, and then Kevin will join us in Philly for scans in two weeks! Not your typical summer vacation plans, but it'll do...

This is just a little clip of some of Hans' latest dance moves. We had to film from behind because he objects to us videoing him, or taking his picture still! We might just have to try to convince him to sign up for a little HipHop or BreakDance class somewhere. On our way in to clinic in a little bit. Planning to leave for Washington tomorrow!