New Bike

I figure it's about time I posted a pic or some fun news, so here ya go.

Santa brought Hans this cool bike - Transformers Motif and all.

Our weather was perfect on Monday and Hans had perked up some, so we went on a ride, quite a bit further than we'd usually take him on his old, much smaller bike!

New bike = new freedoms!

I took the girls (Elle and her friend Kelly) to our local winter skating rink last night and Hans and Kevin went out and invested Hans' Christmas money in a new Nintendo DSI (hand held video game), his systems see a lot of wear and tear with all our travel. It's good to have one working well with our next trip coming up next week:)

I would like to extend a thank you to the National Childrens Cancer Society! We just learned that they will help underwrite many of our travel expenses for our trips back to CHOP. This is certainly a blessing, so I wanted to share the resource with any other families who might find themselves in a similar situation. It is wonderful that there are such resources available.

On the not-so-fun side, Hans was up in the middle of the night complaining of back pain!!!??? He shed a few tears, needed a pain med and a hot bath at 1 am. So - I don't know what is happening here, but these mystery pains do often pop up in the days before scans.

Lara

Blood/Night at TCH

Yesterday we went in for labs up here locally. Info was exchanged rather slowly...we wound up getting word at about 3pm that Hans was to come in for blood! We actually wound up getting admitted to the 9th floor, starting blood at 10pm, finishing up at 2am and staying the night rather than drive home on little sleep. Crazy! I guess I did jinx myself in my last post.

The good news: Hans didn't have a reaction to the blood this time, and his ANC is through the roof at 2800! ! Bad news Platelets were low at 37, so it's back down to TCH tomorrow for more labs and possibly platelets! Gosh. I was a bit bummed to see these numbers. I had hoped to make some fun, regular Christmas break plans, like taking the kids to Pump it Up, Jumpin Jaks... but with these counts, maybe Chuck E Cheese is more in order??? Who knows!

I forgot to mention that my mom left the day after Christmas. She had to get up to Seattle to help with Papa, and to be there for my Aunt Pati as she underwent a delicate eye surgery!!!

Kevin's back at work this week. That's the scoop for now.
Thanks for checking up on us here on Day 15 of Round 17....

Lara

Home this Week!

I am sitting here watching the news... with the insane blizzard hitting the East Coast today, I think it's really great that we are going to Philly next week, and not this week. Originally, before Hans was delayed a week to start Round 17, we would be in the air tonight. I think it's very good that we aren't in the mix of travelers waiting for a flight. UGH. We leave in a week, and we are even pulling Elle out of school to join us this trip and extend all of our winter breaks by a couple of days:)

Hans is okay. Round 17 seems to be wiping him out a little bit. He had some mouth sores on Christmas Day, and he's very low energy! Poor little guy. It just breaks your heart to see him wiped out on the couch. Luckily Santa (and cousin Erin) sent him many of his Bionicles from his Christmas list. These are little action figures that you build piece by piece. Hans powered through six of them over ten hours or so Christmas Day. He said he was very happy. I am just blown away that in all of our 4 plus years of treatment we've only spent one Halloween, one Thanksgiving, and one Memorial Day Weekend in the hospital!!! Somehow we've spent each Christmas right at home. Am I jinxing us now????

Better go wake Hans up and get him fed. We don't have a plan yet for this week, I think local labs tomorrow, and maybe go into clinic later in the week.

Neulasta on Board

Merry Christmas!

Love, Kevin, Lara, Elle and Hans

Hans received his dose of Neulasta today in clinic. Counts were okay today... HGB 10.1, Plts, 240 something, and ANC 900... Hans didn't like getting the shot, not at all. I think next time we'll just have to make it all go down a lot faster.

Other than that we're just getting ready for Christmas. Fun and joy!

Lara

TIme Flies

It seems like time flies when things are going well. Sorry it's been several days since I posted. We've just been good-busy. It's been going pretty well on Round 17 so far. Hans still experiences the primary symptom of a 'mild euphoria' after he takes the med, so he is a little bit buzzed for a little while.

We managed to wrap up another project around here - painted the study - we went from pink to green. Painting and doing DIY projects has been my strategy for managing these stretches where Hans can't get out much with his low ANC. It feels good to get another project done, and it feels even better to put the painting stuff away in the garage for a little while. I think we'll do Hans' room next, and then I'm going to have to tackle the kitchen - cabinets and everything. That is going to be a BIG job.

My mom arrived last night:) Yay. We are all happy to have her, and happy that Papa is doing well enough to send her down to us for a week.

Our sweet girl scout troop had a fun night. We did a Christmas caroling progressive dinner. I used to do these growing up so it was very sweet to pass on the tradition. I loved that the girls were into it and aren't at that "too cool to carol" stage yet:)

That's about it- Hans is just as happy as a clam counting down to Christmas.

Lara

Round 17 Underway...

Hans mixing cocoa in class this morning.

Elle and Hans with Santa's helpers Debbie and Phil.

We got some news. I guess it just took a day or so to get all the right info exchanged.

Hans started Round 17 of MLN8237 last night. He is at the same full dose, 60 mg per day, 7 days on, 14 days off. Hans will now get one shot of Neulasta in the clinic on Day 8 or Day 9 of each cycle. The Neulasta will help boost his white count so that the ANC isn't sooo low for so long. I think this is a good thing and I'm very pleased about it!

We have been keeping busy as usual! Elle had a band concert last night, and then we got a surprise phone call. I guess Hans was 'adopted' by some of Santa's helpers at HP (thru Candlelighters, Houston)! We got a visit from a really nice couple - Phil and Debbie. They dropped off an embarrassment of riches. Hans was outfitted with a totally new bedroom set - Transformers. Supercool.

And then, as Mrs. Parker and I have been plotting (well, I was actually doubtful his counts would rebound), Hans made his first visit to the classroom this morning. We were able to join the class this morning for hot cocoa making and watching Polar Express. Sweet. Hans' classmates won me over by their care and concern. They were genuinely sweet and pleased and excited to meet this Hans they had heard so much about. It was darling to me that the other students, boys and girls both, wanted to come and just say hi and pat him or give him a hug. They got to choose where they wanted to sit and Hans was quite surrounded by a sea of pretty little girls during the movie. He stayed through the whole thing. Sooo cute!

Hans is working with his teacher Ms. Yoakum right now. My mom will be coming for Christmas. All is good. Those few sorta rough times of Round 16 are happily behind us and it's beginning to look a lot like Christmas.

Peace, Love and Cure,
Lara

Made Counts

We had an early office visit this morning. I was completely surprised to learn we 'made counts'. Hans' ANC has climbed to 1050! Yay. But, we are holding off starting Round 17 until we get a new plan from CHOP. I just got a brief email that said we should hold off until they review current height/weight info, and review the requirements for Hans getting Neulasta (daily at-home shots to boost white count) on this next round! Wow - I didn't expect to hear that. I am going to try to sit tight and see what that means. I think we might have to open our case back up with Home Health b/c they provide us with all of our syringes and everything necessary to give shots at home. I'm happy to be off the hook, since Kev is 'down with' being the shots guy!

If they've been measuring him right, Hans has grown 2 cm in the last couple of visits! That's quite a growth spurt for our little dude. He's really looking forward to hitting the 48" benchmark as there are many rides and slides with that height requirement. Looks like we're about 5" away now. If only he had some of those big loopy curls back and a pair of cowboy boots, we'd be right there:)

I'll keep you posted as I learn more. And I will happily take Hans back out into the world with this almost normal ANC!!!

weekend

Kevin and the girls had a good day yesterday at the 3 v 3. Although it doesn't sound too too impressive, their 1 win, 1 loss, 2 ties got them 3rd place! (Of 8, rec division) Most importantly they had some fun. And, we were all able to make appearances at our block party.

Hans copes really well with missing out on activities, he's very good at making his own fun.

And, he's been a little low energy anyway, so he really needs to stay right here at home.

We did make MORE cookies yesterday, thanks in large part to a very special visit from Mrs. Nusbaum, Hans' teacher at Glen Loch for a few days back in 2008. She and Mia brought lots of cookie cutters and frosting kits and a baking mix. What a special early Christmas surprise. Hans was really thrilled to round out our cookie cutter collection with a few we didn't have - ornament, snowflake and santa's cap. I keep finding things to paint and rake while we're here at home.

Okay - guess that's about it for now. Wanted to share some pics. Elle is out paintballing as we speak. But I don't think I'll get a picture of that.

Lara

ANC back

We got it back, but it's still quite low at 96. I'm not getting too far ahead of myself worrying about what this means, I do think it's a good sign that the platelets are rebounding nicely!
All I know for now is that it means more 'home' fun. I'm bummed that Hans and I won't make it to one of the cancer kids foundation parties on Saturday while Kevin and Elle have a full day of soccer. And, he won't be able to go to our block party tonight, but he'll hang out at home and the rest of us will be able to switch out. He is helping me with the baking and cooking for the party though. I shall try to focus on what is going on, rather than what is not happening for us!

Okay - that's our update. We don't recheck until we go back for a TCH office visit with Dr. Russell.

Lara

ANC Pending...

We had another surprise today. Our teams decided it would be okay to get our labs drawn locally at our pediatrician's office today. Well, their machines are not quite as high tech as the hemonc machines. I guess Hans's ANC was too low for their machine to read! We are having it sent out to an outside lab and should have a value tomorrow. We did get the overall white count back, and that had come up a bit since Monday, it was 1.4, and now 2.0, but it's still pretty low, indicating that we'll get a low ANC back. HGB levelled off a little to 10.4, and Platelets came up to 117. I guess it's just a wait and see kind of Round!

So, we stayed home again...more home school, even home PE - Hans joins me to do little parts of work out videos, it's pretty cute! And, we just mixed up a batch of chocolate chip plus cranberry (craisin) cookies. I am doing more online Christmas shopping than usual this year, so that works. I'll keep you posted as we get that wacky ANC back tomorrow.

Lara

Holiday Low Counts Fun

Hans is not letting his lack of ANC beat his Holiday spirit down.

We've been pretty cheerful around here. Hans is looking a little low energy, but he has enjoyed decorating the tree, making a gingerbread house, and baking our first batch of sugar cookies! Hans says "I know everything about baking." He is getting really good at placing the cookie cutters right next to each other to maximize the number of cookies we can get. He doesn't use sprinkles sparingly, so it's good we have a lot. We hope to bake many more batches of cookies around here in the next couple of weeks. I have a 'beat the fever' attitude right now. If we can do it - let's do it today! Let's get it done (while we can! right now!) It's fun. Of course, since I can't take Hans into any stores with me, things get a little tricky... But I keep flashing back to 2009 and 2008. In early Dec '09 we were just relapsing for the second time, living in the RMH for a couple weeks, trying to find a new trial... and back in early Dec '08 we were recovering from MIBG plus Irinotecan and Vincristine. That keeps it all in perspective. Life is Good.

Hans should go in for a counts recheck tomorrow morning. Today is Day One of not making counts to start Round 17. We'll just see how long it takes. We hope not too long. We hate to leave the NB untreated.

We stay pretty busy around here. Kevin is coaching Elle and three other girls, "Goalbusters" on an all day 3 v 3 soccer tournament Saturday. Should be fun. Elle has also started Volleyball again , we've got a couple of Holiday parties, (none of which Hans will probably be able to make) and a band concert coming up. Elle did make first alternate in the district's honor band, but I'm not really sure what that means yet!

I'll keep you informed on tomorrow's counts, and I'll try to keep taking pictures, mom!

Lara

0.00

All I can say is shucks! I don't know why - but Hans' ANC is heading in the wrong direction!!! While the HGB and Platelets looked fine at 11.1 and 73 today, Hans' ANC tanked even further from 60 to "0.00"! Yikes, I don't think we've seen an ANC like that since Bone Marrow Transplant??? Who knows! I guess if you have a little virus, like this cold Hans keeps getting, your counts can struggle. I think I remember the team explaining that on this Trial, they START GCSF shots (to boost white counts) only if Hans' ANC is lower than 1000 for 14 consecutive days after the date he was to start the next round! That actually seems like quite a little while before using an intervention, huh? But then, I understand he'd automatically get GCSF each Round??? We'll just have to see what happens. He is supposed to Round 17 on Wednesday. It's pretty clear that he's not going to make counts.

He is doing fine! He has missed a lot of school though for these appointments and treatments days. We are about to go for a bike ride. We will just have to avoid crowds and sick people for a little while. If he spiked a fever, I have a feeling they'd keep him for quite a few days until that ANC popped back up! UGH.

Lara

Hans doing fine again

Hi, sorry to keep you all hanging without a post! Hans has had a very 'normal' time ever since Friday morning. Go figure, huh? As soon as I decide not to make the trip to Seattle! Hey - we'll take 'normal' any way we can get it, right?

I just haven't posted because we've been pretty busy over here between sleepovers, birthday parties, Volleyball, soccer tourney team t-shirt designing, getting pics with Santa, replacing the old TV that finally bit the dust (much to Kevin's delight;), girl scout meeting and 3 bike rides and completing a handful of lanyard orders, I just honestly haven't had much computer time. Whew. I don't know how I thought I could get out of this weekend???

Hans is back to a more normal energy level for Hans on this med. He hasn't had any further complications from his transfusion. He is just super thrilled with the Holidays. He and Kevin have hung up more Christmas lights now - I think they are almost done.

Thanks for checking up on us. Hans goes back in for a counts recheck tomorrow/Monday. He is supposed to start Round 17 on Wednesday. We have a pretty good idea that his counts won't be back in shape for a little while after that - just anybody's guess as to how long!

Lara

Long Day in a Nutshell

So, Round 16 hasn't been very good to us! This morning when I asked Hans how he felt, he said "all better!" I took him into clinic with the hopes of hearing "looks great!" But, come to find out - ALL Hans' counts tanked. His HGB was 8.0, his platelets had dropped down to 59, and his ANC is stuck at 60:( Shoot. We got a slot for a blood transfusion in the clinic.
I always have a very grateful feeling as the mother when I see the bag of blood coming. Some stranger gave up a couple hours of their time, their life, their blood to save my boy! They don't even get a high five, a pat on the back, or a toothless 7-year-old smile. Thanks to all the donors out there who keep Hans and so many others tickin'.
We had a hiccup of a few hives towards the end of the transfusion. We pulled the plug 3/4 way through the bag. It was enough to give his HGB a good little boost. He got more Benadryl and some fluids. The hives started to melt away. Wow - we haven't had a transfusion since July (???), and we haven't had a reaction to a transfusion since 2006!!!
It has been a rough couple of weeks for Hans. We are reaquaniting ourselves with this emergency managment lifestyle. It has been pretty boring and pleasant for most of the Fall!

I was going to catch a flight to Seattle tonight to see my grandpa for the weekend. I'm postponing that trip to keep an eye on my little dude.

The good news: Dr. Russell says Hans' mouth sores are all better. AND, my pal Claire, Patrick's mom, was able to drop in and say hi. It's always good to see her.

Peace, Love and Cure,
Lara

ps - Check out Angel Max's site. Max's dad Andy has created an awesome cheatsheet Christmas Shopping shopping in support of pedi cancer.