Bone Marrow Results Back - Normal!

It's been a long time coming, but it's all good. I didn't even put it out here, because I didn't really understand it, and I didn't have the right answers or questions. Back at our March Office Visit (before Hawaii), Dr. R. shared with us a red flag in Hans' blood work. His MCV value has been climbing over time (normal values are in the 80's and since January, Hans' MCV's have been over 100). This is the 'mean corpuscular volume' or size of the red blood cells. She explained that this could be a sign of Hans getting "pre-leukemia". One horrific side effect of NB's toxic treatments is a secondary cancer...commonly Leukemia (AML, which is more difficult to treat than ALL). It only happens in about 5% of our kids, and it tends to occur about 5 years out from diagnosis. So - here we are 4.5 yrs out getting this news. We were told to go about our business, go on our trip, proceed with the move, and to simply schedule bone marrows at our next round of scans. We did this. All I will say is that I've been pretty somber whenever I've thought about the possibility of this Leukemia. And I have thought of it frequently over the past 7 weeks or so. Thankfully Kevin wasn't worried. He just had a gut feeling that it would be okay.

Hans' marrows went through NB testing (negative), a test for MDS which is a syndrome that could lead to the pre-leukemia (if I am understanding this correctly), it was negative, and finally, he underwent Cytogenetic testing of the marrow. We just got those results back yesterday - normal. I am thanking God, as these results are just about all I have been able to pray for these past weeks.

Dr. Mosse explained to me that sometimes when kids have seen as much treatment as Hans has, the MCV value just grows. There are no side effects of that growth. I can put that mental fire out of my mind that has been burning there a while - and widen the scope of my prayers.

Still doing fine!

Hans and his Easter Basket.

Kevin and Elle on the Easter Egg "Hunt" in our front yard.

It's funny - the better and better Hans has been doing, the less I feel I have to say here on this blog!

The good news - Hans is okay! This Round (Round 22) is over. He dodged mouth sores or any significant side effects. I almost forgot about his Neulasta last week, but when we got an ANC back last Weds of 900, my memory kicked in and we booked him an appointment for the shot on Thursday. The HGB was good at 9.9 and the Platelets great at 300-something. Yay! We'll go in for labs locally on Wednesday of this week and we'll go down to TCH next week for the OV/check up before we start the next round.

We had a fun visit with my mom. I love it when she comes down for Spring break, because it's like we get to squeeze in a second spring break. We were mostly running around like crazy with I think 8 showings of our house last week.

Kevin flew out from CA for Easter Weekend and we joined Elle's girl Scout troop on a trip to the Schlitterbahn Waterslides in Galveston on Friday. It was good - and Hans did great. We just got a late start because I knew he wouldn't last the whole 10 hour the day the girls did. He did hold up well for about 5 hours of water sliding. FUN! He did clear the next height marker, so there were more slides for him to ride this time.

I guess we got lucky - we got two offers on our house and sealed the deal today. I'm happy that it all went quickly. It's pretty tricky to keep the house in 'showing' condition around the clock. We have found a neat home in Bakersfield. Everything might just work out smoothly, the kids can likely finish the year here and then we'll go join Kev in Cali.

In other news... My dear friend/Hans' godmother Roxie has spent just about the past week in the hospital even ICU with a bizarre and scary case of Bacterial Pneumonia. I'm so very happy that she turned a corner.

And...we got a new Nephew this weekend! Kevin's sister Anna and her husband Matt welcomed Baby Benjamin Michael on Thursday.

Going Just Fine/Having Fun

• Not much to post here - Hans seems to be doing well! He is on Day 6 of Round 22 of MLN8237. He is squeezing his eyes together a bunch so I do think he's having a little bit of the light sensitivity/blurred vision side effect that comes and goes for him on this med. He hasn't had that one for a while. We'll get counts locally on Wednesday and make sure he is still doing well.


• My mom is here for her spring break. She actually came down to watch the kids while we rode the BP MS 150. But, that didn't quite happen. I'm trying to get our registration fees rolled over to a ride in California in October.


• We've been doing fun spring stuff...end of soccer, end of girl scouts, we went to see RIO! It was actually very cute. It seems like Hans is wanting to get out there a little more. A lot of times he said he'd rather wait til the movie comes out on DVD. So, way to go Hans...


• Here are some pics... Hans found the first cherry tomato of spring, here he is with "party lights for your fingers" at the Cracker Barrel restaurant last night, Hans and Grandma Stephanie working on dyeing Easter Eggs, and finally Elle and Grandma S. at work on taxes and school work:)


• That's about all we know right now... 26 more days o' school for Hans! He can't wait for the pools to open.


• Kevin has been having a good time at the new job. We're all missing each other - but it's okay. He went up to his grad school stompin' grounds - Santa Cruz/UCSC to visit some friends this past wknd! We are all excited that such visits will be part of our not too distant future.

forgot to post pics w/ our pal Keiran

Hans and Keiran had a good time on Tuesday night. We got to go out and have some fun with our pals in South Jersey, before all the drama last week. Here's one pic of the two boys playing Lego Star Wars III. Hans and Keiran have a great connection despite their 6 year age diff. Hans is just two weeks older than his little bro, Braeden, whom he lost to NB in February '09.

Braeden is pictured above at the beach. We only got to meet him a couple of times in the halls of CHOP...

Made Counts

• Just got back from TCH where we learned that Hans made counts! Yay. I didn't know which way that would go. Last week up at CHOP we had some borderline numbers, HGB of 9.0, Platelets of 53... Dr. Russell actually reserved Hans a transfusion spot at clinic today. Thank goodness we were able to blow out of there and back home for school instead. We had a quick weekend with Kevin home. Most of it was filled with home buying/selling paperwork and business. A couple of soccer games, and some glad-to-be-back-home favorite foods.


• Here is a pic of Hans in his FAVORITE chair at clinic. I was taking Hans' picture and a nice gentleman offered to grab a shot of the both of us. Hans actually sits here, and only here, during our many clinic visits. He is a creature of habit I guess. Luckily, there have only been a couple of times when this seat has been occupied. When that happens, Hans waits it out and takes the spot as soon as it becomes available.


• My blogger seems to have stopped recognizing paragraph breaks so I went with bullets today!

stable with a false alarm

I'll just start off by telling you that all is well! Hans scans ultimately read Stable today. But, we did have a big scare. Hans was just out from bone marrow aspirations (a general anesthesia procedure) when Dr. Mosse came to find me. "There's a new spot." she said. The bottom drops out, and she goes on to explain that it is a spot above his left eyebrow. But, she explained that she had already ordered a CT/"spect"because she wasn't 100% convinced it was a progression. Sooo, over the next couple of hours I experienced a very specific level of NB hell. We got right into the CT scan, and quickly back up to our office visit. I was ultimately relieved to hear that Dr. Mosse's intuition was right. The CT scan revealed that Hans' original spot was there on the backof the skull, but the new spot was completely normal. This actually suggests there was some contaminant on that part of his head. It should read perfectly normal in a couple of days. Exhausted, Hans and I went to celebrate at MadMex. Chips, salsa and a strawberry margarita for me. It has been a week of rather extreme circumstances for us. Right now, the four of us are separated one three coasts (if you define 'coasts' loosely). Kevin is already at work in the new position in Bakersfield, putting an offer in on a house today, Elle is back in The Woodlands, staying with Kelly, one of her BFF"s, and here we are in Philly getting freaked out by contaminated MIBG Scan!

Scan Week

Hi! Just a quickie update. We are heading out on tomorrow morning for our MIBG scan in Philly. Just Hans and me this time! He's doing okay with that. He prefers "all four" of us to go. How sweet is that? This time around we also have bone marrow biopsy and aspiration. We are hoping for that elusive 'all clear' but will be relieved by, satisfied with and grateful for a "stable". Our house went on the market today! I hope we get some bites! We have been working nonstop around here!!! Both the kids have been helping me. The place looks good enough to stay:) We've been off the hook for labs this week - we'll just get them up there....so nice! That's about all that's going on! Thanks to Kelly and her family for taking care of Elle this week, and thanks to Alana for watching the kitties while we are gone.

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