I'm so behind that I just posted 20 pics...

Hans' first day of Kindergarten with his teacher, Ms. Nusbaum, Weds Aug 27, 2008

Erin, me and Madison (my goddaughter)

me and my mom

family day in Ellensburg, top row - My mom, Grandpa Dale, Great Grandpa We, Grandpa Dean, Uncle Steve, Matt Second Row Aunt Holly, Grandma Kathy, Elle, Me, Hans, Grandma Diana, Anna, and baby Emma(Kevin already had to get back to Hou) We didn't a group picture of my mom's side. You can never get those ladies to sit still!

Kevin, Quinn and Dale in Seattle

karaoke dance party - Hans Elle and Genna

Hans and KK playing Wii

Anna, Matt, and new baby Emma (hans and Elle's first first cousin

Feet in creek with Delayna and Layla

Me and Elle with KK and Debi on their visit

2 for 3 so far

my dad's side of the family Joanne, me , Aunt Louise, Mark, Tia, Coleen, and Grandpa Oscar!

Hans on Eddie with Grandma Kathy, Grandpa Dale and Uncle Michael

Hans, Eddie and Grandma Kathy

Hans and Elle on Eddie

Eddie gets a kiss

Elle on Mt. Index hike

Kevin and Elle on Mt. Index Hike

Trying to get a picture of the four of us after dinner - ha!

Elle and Sierra Camping at Larrabee

Me and my friend Kerry

Hans and Papa (my grandpa) with Elle and Erin.

I finally got around to posting pictures... Sorry it's a little overwhelming! Wish I had room to post more, I took more, but these kinda turned out the best...

For an NB up date: The three other children have received scan results. Sam and Will got stable results, but unfortunately Erin's scans showed some progression. Dr. Russell will have to come up with another approach so that progression halts -- we want shrinkage.

We are waiting for our news til Dr. Russell gets back from her vacation. Gustav may postpone her return to clinic - so we could be in limbo for a few more days...
I figured I better post now - Gustav is hitting somewhere. After Rita we were subject to rolling blackouts. We still need to hit the store for extra water and soup, etc., just 'in case'. Kevin should find out today if Marathon will close its doors for a day or two. Everyone down here takes hurricane preparedness pretty seriously.

Hope you are enjoying your Labor Day weekend. Take it easy! That's what it's all about.

Lara

Scanorama

So, Hans is just one of four NB kiddos I have heard is undergoing scans today. Will (MA) already got good news! Hans, Erin (TCH) and Sam (CA) are still waiting.
We actually may have to wait longer than our original thought of Tuesday. Gustav just may get in the way of clinic visits. Let's hope not though. I'm actually hoping that Gustav doesn't hit New Orleans even more though, that would just be too cruel...

Today's scans went okay. Hans had his MIBG and we were late. He couldn't pee for the longest time and finally went just before I was going to let them cath him. I am so praying for clear scans, that I don't even really have room in my brain nor my heart for the 'what if' scenario... Hans' blood counts checked out just fine for today. Good hemoglobin and recovering platelets. Hans and daddy go back tomorrow for a CT... while I get to lounge around the house and then go out to lunch with my girlfriends!

We had the best day yesterday! Hans started Kindergarten yesterday. I was really proud of him and just so pleased with everything in general. Hans' team up at Glen Loch is actually exceeding my expectations. His nurse, Mrs. Reedy is an answer to a prayer! Hans was wondering why he wasn't going back to school today - so daddy's giving two thumbs up to this whole school thing too, just because he's so into it.

Thanks to every one's well wishes for my birthday. I've actually had a really pleasant day - given that most of it was spent up at TCH. It was nicely broken up with a lunch date with Erin and her mom, Vickie, before she had her turn on the MIBG. The real bear of the day was waiting FIFTY minutes to pick up our car in valet... Ah well... Knowing that we had scans and counts today - I hadn't expected too much out of the day and I think that's what has made it so pleasant. We had a festive little family dinner at our nearest Mexican Restaurant - so there's no complaints here:) Praying for good scans for all of our dear ones - and not giving up on the dream of an eventual cure for this beast of relapsed Neuroblastoma...

Lara
ps thanks to alana for collecting elle off the bus today, and thanks to Monte and Carmen for the knock-out home-cooking meal this week:-) Thanks also to Matilda who offered up Mass at Saints Simon and Jude in Hans' name last night (again)...

'First Day' Stuff

Yesterday was certainly a full day! I got Elle off to school, and we finally met her teacher since the poor thing had to miss her Meet the Teacher time slot due to the fact that we were late getting platelets on Thursday afternoon. I was happy to drop her off and get her going. And then... I don't know - I think it must all hit you as the mother of a child with special needs on these big Milestone Occasions. I still have every single hope and dream for Hans that I have ever had. It takes a while for your dreams to adjust. It was not the 'first day of Kindergarten' that a mommy envisions for her boy. I feel badly for Hans that he wasn't there on the first day, that he will miss so much school, and I am really just generally nervous about being ready to turn him over to a school at all. But I know that he needs and deserves to have more in his life than his treatment and his homelife. His Adrenal Insufficiency and Hypoglycemia make him a tricky kid to look out for. So, I just hope that we're doing a good enough job of explaining Hans' special needs to the school, and I do believe that they are going to do everything they can to meet the doctor's specific recommendations for him.
As I pulled away from the school I couldn't help but think of all the angel moms and their struggles with not having their little one to drop off today. I was thinking of you all throughout the whole day with much love and compassion.

So, the morning was emotional for me. And then - off to the clinic - for an eventful day for Hans. Here's a breakdown:

We showed up for counts at our 1 pm appt.

3pm found out we needed blood and platelets

4pm found out we'd be getting them at 'Short Stay'

5:30pm got transferred to 6 North-Short Stay in Abercrombie Bldg.

7:30pm Platelets finally Hooked up

9:30pm Blood hooked up

2:30am Discharged - home at 3:30 - crazy huh? The good news was that Hans' ANC was now over 8,000!

I guess I need to work on a comment card. That's certainly a system that could be streamlined. I am sure you would believe that Hans did not issue one complaint across these 13 hours. He only requested that we go to the food court once, and then, later, to McDonald's. He is such a very sweet kid. I got to take a good snooze with him in his hospital bed before driving home. And, at least, for him, the Benadryl they used as a pre-med for blood products knocked him out at 7pm.

Thankfully Michelle and family took care of Elle until Kevin got home from a late meeting. It was so awesome of you guys to pick her up her favorite eats - sushi and salmon! And thank you so much for snapping the first day of school photo that I didn't get.

Lara
ps - We had a really fun time with Mark, Debi and KK. The guys played a lot of Wii and watched some sports. Us girls were busy - we beaded 11 lanyards for the sale! It was fun and they look really good. We were grateful to have some good old fashioned family time. We took a chance and hit Hans' favorite dinner spots - Chili's and Double Dave's. Thanks Mark, Debi and KK for coming to see us! The girls had a fun sleepover:) Can you believe Hans' Hemoglobin was almost a full point below the transfusion parameter with how well he was doing this weekend?
pps - I KNOW I owe pictures of Hans and of our trip - I am working on it... I just need to put in a tech support request for Kev to check out my laptop...

Layin' Low

Hi -
I don't have much news, but it has been a couple of days since I posted... Hans had a clinic visit yesterday and he went ahead and got platelets since he was at 22 going into the weekend. We brought our babysitter, family friend, and future pediatric oncologist, Courtney, along for the day - that was sweet! Hans' ANC is only at 280, so he has to lay low and stay out of public for a few days. We go back into clinic on Monday to re-check counts. It has really felt incredibly relaxing to be able to be home with both kids for a few days this week! I guess I could do this for a few more weeks.

We got some big news on the school front. After meeting with the school principal, vp, nurse and counselor, we've actually decided to give Hans a shot in the Kindergarten program. He will go when he can, and will do an unofficial half day, to see what he can build up to. We're just worried about his stamina at this point. It's pretty exciting! I have a feeling he might just rise to the occasion, but it'll be interesting - that's for sure, especially for the school nurse and administration up at Glen Loch. They've assigned him Mrs. Nussbaum.

When we were up in Ellensburg, Kathy showed me how to make beaded lanyards (or ID badge holders) for the nurses. Hans made one and gave it to Nurse Natalie. It's darling. We are going to be making them and selling them at our next bake sale. We've been passing out a few starters to our friends and other NB families as well. I think they'll be a hit at the sale.

We are looking forward to a family visit this weekend. Kevin's aunt and uncle Mark and Debi, and cousin Kalene are coming through town from Scottsdale after dropping cousin Jessa off for her first year at Baylor! We're looking forward to have them.

That's about all that's new. Hans will miss Day 1 at Glen Loch due to ???? count status. Maybe we'll hit Day 2. He has scans on August 27 and August 28th - a CT and an MIBG. Let's pray for clear pretty scans so that we will be able to move full speed ahead to the next phase.
Lara

Round Five -

is complete, in fact we have finished up all of Hans' scheduled Topo/Cytox treatment. I think it's been hitting me this past week - what a summer! We are simply stunned and amazed and grateful that Hans has had such an incredible response to this treatment. Hans has done great. He and Kev did inpatient clinic duty on Saturday. We were all really impressed with how smoothly it went - they were home by 7pm! Hans is doing really well right now. He was very excited to get his tubes out on Saturday - so first thing Sunday morning he dressed in his swim suit and was just waiting for the pools to open. One thing he likes about Texas in comparison to Washington is the temperature of the pools! He was dancing some really great moves last night. In Kev's assessment it was a Michael Jackson/Diana Ross combo with some Tai Chi thrown in there. Thanks, C,C,& E for the Alvin and the Chimpunks Soundtrack, it's a HIT! So -Hans is doing GREAT! I will take him into the clinic today for a shot of Nulasta (like GCSF - a blood cell growth stimulating factor to help his counts recover from the chemo more quickly). We have also been busy buying school supplies! Hans has a Kung Fu Panda back pack (thanks, G&G Web)filled to the top for PreK 4 at Glen Loch. I just have to turn his registration paperwork in!

Elle is home and we are all very happy to have her back. She had a blast and can't wait to get back "home" for another visit.

We have scans that are supposed to be scheduled for next week. MIBG and CT. The pressure and intensity around scans is the same as ever - but I am only thinking positive thoughts around this set of scans...

Thanks for checking up on us and for your prayers and good vibes that have helped get us through this tough summer.

Lara
PS - Thanks also, to Marianne for a yummy meal the day we got back, as well as the impromptu filling of a grocery list when we knew we weren't getting home from the clinic before 7:30 pm on Tuesday. That was incredible!

Arrgh...some bumps in the road...

So - I thought we were just flying through this last round of chemo, and then...
Yesterday didn't end up getting chemo:( Each day they check urine saturation and all day yesterday it was too concentrated. Finally at 4pm it checked out, but then it was too late to get chemo. We are already here and rarin' to go, but I still haven't heard if his first sample passed the test. It was actually a little scary b/c our nurse handed me the phone and it was Dr. Russell - it's basically never good news when your Oncologist calls you out of the blue. So - I don't really understand what it all means, but I'm hoping it's just related to possibly being a little dehydrated. So - I'm putting the call out for prayers that Hansie will make it smoothly through just three more days of chemo, that I'll be able to handle it too, and that his little organs will be protected from these five rounds of chemo, and also, that the stuff does its job and scans are clean. We will be doing scans at the end of the month and then, once again, we'll be making some pretty heavy duty decisions.

I guess Hans will have to go inpatient on Saturday, since he'll be getting weekend chemo. We'll see what that's like, I'm not sure if they'll keep him for 24 hours, or let him go. Yesterday was kind of a bummer - I guess I had my mind so wrapped around powering thru this round and being done on Friday, that I was really thrown off. Ah well...

Lara

PM update - oh, so his first urine checked out okay and it looks like we're back on track, he did get chemo today and things are looking up, so I'm feeling a little better about things!

Back at it...

Hi guys -
Wow - long time no post. I didn't bring my computer while on vacation, and was a little off line. I guess that's good for a change.
I wanted to let you know that our trip went GREAT! Hans was healthy and in good spirits the whole entire 10 days. We did pace ourselves a little bit, not packing in nearly as much action as usual, but I guess that was okay too! I felt really nervous about being too far out from the hospital/Seattle. So - we didn't do any over nights anywhere but my mom's. I am thankful to our friends and family for working with our schedule and being so flexible about seeing us when we could see you. It was awesome! There were a couple people we weren't able to hook up with - but there's always next time!!!

For the highlights...we hit a family reunion, a birthday party - for Max - with the Blue Angles (an air show), we went to the Pike Place Market, did the Space Needle, took a ferry ride, roasted marshmallows, had a couple of family picnics and get-togethers, Hans rode Grandma Kathy's horse Eddie, and made jam with papa, my grandpa, and even went to listen to live ukulele music at my aunt Pati's community center. We got to see so many friends and family and we even got to meet our new niece/cousin - Emma! My cousin Joe treated me and Kev, along with my uncle Dean to a Mariner's Game - it was my first trip to Safeco field. It was nice! Elle and Kevin were able to do some outdoorsy stuff together - they did a 10 mile round trip hike up to Lake Serene on Mt. Index. Kev was totally impressed with her ability to keep up and even sometimes set the pace. He also said she was the only kid on the trail. They also did a daddy-daughter camp out with our friends Andy and Sierra. They had fun despite a scary midnight raccoon attack. Elle will stay four more days to get out of this round of chemo as well, and we'll pick her up Friday night.

Hans is back it - he just started Round 5 of Topo/Cytox. We're condensing it to 4 days again, since we were traveling yesterday. I'm happy to knock off a day. Hans had a wonderful trip and loved every minute of it! He was a very good sport about visiting Children's Hospital Seattle. I really thought they did a great job of working us in, taking care of us and meeting our needs. In our 10 day vacation, we visited Children's Hospital on three days for counts. Hans was lucky not to need a transfusion! I was impressed with meeting Dr. Park, the Seattle local NB doctor, who was able to squeeze a visit with Hansie into her schedule!

Thanks to Aunt Holly and my cousin Joey who let us borrow their wheels in Seattle. That was very sweet. And, thanks to Michelle who fed our three cats and did some impromptu hurricane preparedness at our house when Eduard showed up! Thanks, also, to the Smiley's who babysat our fish for the duration.

I WILL post pictures. But, alas, not today... Also, we did get the exciting news that Hans has been adopted by Sparrow Clubs. This great group of kids is going to adopt him as their "sparrow" child, and organize a fundraiser for him. The funds will be used for expenses related to his ongoing medical care. We are humbled that they have selected Hans and I know this group of kids is going to be very special to our family. I would encourage other families facing a pediatric cancer, or other serious medical issue to check this organization out: www.sparrowclubs.org. Facing such a medical situation in a child can certainly maxx out a family budget, so we think it's wonderful and amazing that such organizations are out there.
Lara

Good to Go

Hi,
We had a "quick" day at the clinic yesterday. Hans got tanked up on a rather large bag of platelets and we now have the green light to hop on the plane! We haven't been back home in two years - since before diagnosis. So, it is going to be really great to be home. Hans has been counting down the days and he woke up today noting that 'it's friday - we can hop on the plane.' We will go to Children's Hospital in Seattle for counts on Tuesday and Friday next week. We hope to have an office visit with Dr. Julie Park while we're up there as well. We may need to go back in for a transfusion on Monday, before we leave, but hopefully not.

Hans had fun passing out a print of a cute picture of himself to the doctors, nurses and staff up at TCH yesterday, and people were asking him to write his name on the back. He sometimes had two people lined up for his "autograph". We also picked up his PreK registration packet yesterday and he proudly wore one of his sister's first "Glen Loch Gators" t shirts.

Yesterday, though was another rough one up at the clinic. Our little sweet friend Patrick found out that his questionable spots are indeed relapsed NB. I also heard the terrbily sad news that little Blaine Brandon lost he battle with NB over the past weekend. He had a particularly smart tumor, and his treatments never got it fully under control. He was a sociable and spirited little boy, who turned six years old this month. It has been a really rough and horrible year for Neuroblastoma/Solid Tumors up at TCH. We've decided that the proceeds from the next bake sale will be memorial contributions in the name of each of the children we've lost this past year. It's absolutely astounding to me that we are now at five just since last Fall. Remembering Haleigh, Carlie, Chloe (Dx - Ewing's Sarcoma), Ryan and now Blaine. We'll never forget.

Lara